Re: [CMLHope] Catch Up
Yes!! How are you Susan??? -Original Message- From: 'SUSAN ZIMMERMAN' via CMLHope Sent: Fri, Sep 9, 2022 10:18 am Subject: [CMLHope] Catch Up Good day. I'd like to ask you for a favor. Kindly let me know if you get my email? Thanks. SUSAN ZIMMERMAN -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/1701790455.1508744.1662736681600%40mail.yahoo.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/2052725560.1600993.1662748003209%40mail.yahoo.com.
Re: [CMLHope] Not getting any mail
-Original Message- From: Joyce Mesnarich To: cmlhope Sent: Mon, Sep 16, 2019 2:08 pm Subject: Re: [CMLHope] Not getting any mail Hi Jeanie.I think we all have just become quiet on this site. I have received no mail either. My husband is the CML patient. I am his caregiver. He is presently taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. But I, too, would be skeptical of getting meds from a place I didn’t know anything about. My husband was previously seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an expensive trip and as we have gotten older we found it is just too much for us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from us) and started going to him. He is elderly himself. The last 2 times we went we saw his PA. She seems good but certainly is not up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit and they are keeping him from seeing patients. My husband is doing well as far as CML goes. But time is taking its toll. He has very low energy. Don’t know if that is the CML or the medication. I hope you are feeling well. I know you have had some problems in the past. I have been in this group since 2008. Seems most everybody is gone. Sad. Joyce in Southern Illinois On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope wrote: HelloI am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/B1E43834-6B94-4F1D-BE03-DDDA23F4E805%40htc.net. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/2101702186.2334407.1568689845969%40mail.yahoo.com.
Re: [CMLHope] Not getting any mail
HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope everyone out there is hanging in there.. My best to all of you.. KIndest regards, 18's for Marty and hugs to all.. Beth -Original Message- From: 'icandoallttc' via CMLHope To: cmlhope Sent: Mon, Sep 16, 2019 10:52 am Subject: [CMLHope] Not getting any mail HelloI am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/152377458.1988569.1568649969796%40mail.yahoo.com.
Re: [CMLHope] Got a sore won’t heal ?
Jeannie,please go to a doctor and have it looked at. Whatever it is, bug bite, spider bite, or whatever..it does not sound good. could be infected with the rash?? Anyway...I am worried about you. you take good care. I know it is hard to gather the energy to go to the doctor..but it sounds like you need to have it looked at!! Love to you and to all. I have had a rough go of it mysel for the last three months..influenza, complications etc...still staying positive...but it's been a long winter.. grateful for Spring to arrive.! 18's and hugs, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sat, Mar 30, 2019 12:46 pm Subject: [CMLHope] Got a sore won’t heal ? Hi all I pray everyone is good and having s wonderful spring. When my lilies start blooming I know we ate in for a great spring I have developed a sore on my tummy and I thought it must have been a big bite. It is very painful and developed a black scab and red rash. I never had anything like this before so was wondering if any sn this list had had this experience. Millie told me not to long before she died she developed a sore on the bottom of her foot that wouldn’t heal. I don’t have diabetes so if anyone has had this how did you treat it and etc. haven’t brought myself up to going to Dr. I still miss my dr from Moffitt who was Dr Balducci. They have turned my case over to a nurse. Let us hear from everyone. Love you so very much Jeanie My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Thyroid issues
I do take the levothyroxine. It puts my numbers in order, at least on paper. I hope you are seeing an endocrinologist. Yes? A thyroid specialist? I do not know why it would make your numbers worse? it should not make it worse. It might not work well...at first, until meds are adjusted if it's the right medication at the right dose for you. If your numbers are worse and you are not feeling well...definitely get to a specialist. They can physically check your neck, perhaps do an ultrasound..other more advanced diagnostic thyroid blood tests etc...maybe they need to rule out other issues.. Hope this is the year that you find some more answers and feel better!!! Thinking of you... 18/s Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Fri, Dec 28, 2018 9:45 am Subject: [CMLHope] Thyroid issues Hi BethI didn’t know you had thyroid issues. Maybe you can help me. My tsh was high and the dr gave me Levo meds but they made it worse. How is yours being treated? Thanks Jeanie My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal On Dec 27, 2018, at 1:06 PM, rszim0702 via CMLHope wrote: Thanks Beth for your note to us. As we all are above ground today, it's a great day as Marty used to say. I hope everyone's holiday time was precious with family. The noise at our get-together was deafening! With 33 in attendance it was lots of fun. Our Secret Santa time was fantastic, too. I got an ab-worker which could help me exercise...if I pick it up. All is well if we don't talk about our ills! Be blessed and enjoy the New Year coming in...with new futures, new prosperity, and new fulfillment because we are looking to be kind instead of right, and joyous and light-hearted as we give of ourselves to others. And when we need to share about our recent physical problems, that's what we are here for, too! Beth, hang in there and Jeannie, and Greenie, too. Gotta go! 18's and love and hugs,Susan Z. On Dec 26, 2018 2:09 PM, bkbarney via CMLHope wrote: Hanging in there. Cancer showing ongoing but at low rates. Cannot take enough meds to get to PCRU but that's O.K.,Side effects still here, muscle and heart and my usual thyroid issues, but I stay positive and carry on. On vacation, made it this year, so enjoying shelling and the beach...windy but great shelling!! Love to all, and please, lets all stay together here this coming year. Zavie and Marty taught us well, along with Millie and many otherscommunity and shared experiences mean so much Love, and 18's to all Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Wed, Dec 26, 2018 2:02 pm Subject: Re: [CMLHope] Merry Christmas and happy Holidays to all Thank you so much how are you? My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal On Dec 25, 2018, at 11:29 PM, bkbarney via CMLHope wrote: hi Jeanie and Susan Z, Wishing you both a happy and peaceful New Year filled with moments of joy and sweetness amidst all the healthy struggles. You are both such strong woman and I admire the courage you both show in navigating multiple health issues at once. I feel for both you.. Stay positive and now that lots of us out here are thinking of you. Happy holidays!! 18's Beth -Original Message- From: rszim0702 via CMLHope To: cmlhope Sent: Sat, Dec 15, 2018 10:00 am Subject: Re: [CMLHope] Merry Christmas and happy Holidays to all Sorry for the new diagnosis, Jeannie! I got news I now have fibromyalgia myself. Along with IBS, I have to make myself go out of the house. All of you keep warm and have a wonderful Merry Christmas!!! It is what you make it. 18's and hugs,Susan Z On Dec 15, 2018 9:10 AM, esd...@rogers.com wrote: Wishing the best to you in the New Year. Sent from my LG Mobile -- Original message--From: 'Icandoallttc' via CMLHope Date: Sat, Dec 15, 2018 3:15 AMTo: cmlhope@googlegroups.com;Cc: Subject:[CMLHope] Merry Christmas and happy Holidays to all Hi allMerry Christmas and Happy Holidays to all. I am ending the year fighting another disease: thyroid. At least that’s what they think it is. Lost about 30 pounds: losing hair-sweating for no reason and more. I can’t take the meds as they make it worse. No matter what-fight on. -- -- [CMLHope]A support group of http://cmlhop
Re: [CMLHope] Merry Christmas and happy Holidays to all
Hanging in there. Cancer showing ongoing but at low rates. Cannot take enough meds to get to PCRU but that's O.K.,Side effects still here, muscle and heart and my usual thyroid issues, but I stay positive and carry on. On vacation, made it this year, so enjoying shelling and the beach...windy but great shelling!! Love to all, and please, lets all stay together here this coming year. Zavie and Marty taught us well, along with Millie and many otherscommunity and shared experiences mean so much Love, and 18's to all Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Wed, Dec 26, 2018 2:02 pm Subject: Re: [CMLHope] Merry Christmas and happy Holidays to all Thank you so much how are you? My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal On Dec 25, 2018, at 11:29 PM, bkbarney via CMLHope wrote: hi Jeanie and Susan Z, Wishing you both a happy and peaceful New Year filled with moments of joy and sweetness amidst all the healthy struggles. You are both such strong woman and I admire the courage you both show in navigating multiple health issues at once. I feel for both you.. Stay positive and now that lots of us out here are thinking of you. Happy holidays!! 18's Beth -Original Message- From: rszim0702 via CMLHope To: cmlhope Sent: Sat, Dec 15, 2018 10:00 am Subject: Re: [CMLHope] Merry Christmas and happy Holidays to all Sorry for the new diagnosis, Jeannie! I got news I now have fibromyalgia myself. Along with IBS, I have to make myself go out of the house. All of you keep warm and have a wonderful Merry Christmas!!! It is what you make it. 18's and hugs,Susan Z On Dec 15, 2018 9:10 AM, esd...@rogers.com wrote: Wishing the best to you in the New Year. Sent from my LG Mobile -- Original message--From: 'Icandoallttc' via CMLHope Date: Sat, Dec 15, 2018 3:15 AMTo: cmlhope@googlegroups.com;Cc: Subject:[CMLHope] Merry Christmas and happy Holidays to all Hi allMerry Christmas and Happy Holidays to all. I am ending the year fighting another disease: thyroid. At least that’s what they think it is. Lost about 30 pounds: losing hair-sweating for no reason and more. I can’t take the meds as they make it worse. No matter what-fight on. -- -- [CMLHope]A support group of http://cmlhope.com-You received this message because you are subscribed to the Google Groups "CMLHope" group.To post to this group, send email to CMLHope@googlegroups.comTo unsubscribe from this group, send email to CMLHope-unsubscribe@googlegroups.comFor more options, visit this group at http://groups.google.com/group/CMLHope--- You received this message because you are subscribed to the Google Groups "CMLHope" group.To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com.for more options, visit https://groups.google.com/d/optout.-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email t
Re: [CMLHope] Merry Christmas and happy Holidays to all
hi Jeanie and Susan Z, Wishing you both a happy and peaceful New Year filled with moments of joy and sweetness amidst all the healthy struggles. You are both such strong woman and I admire the courage you both show in navigating multiple health issues at once. I feel for both you.. Stay positive and now that lots of us out here are thinking of you. Happy holidays!! 18's Beth -Original Message- From: rszim0702 via CMLHope To: cmlhope Sent: Sat, Dec 15, 2018 10:00 am Subject: Re: [CMLHope] Merry Christmas and happy Holidays to all Sorry for the new diagnosis, Jeannie! I got news I now have fibromyalgia myself. Along with IBS, I have to make myself go out of the house. All of you keep warm and have a wonderful Merry Christmas!!! It is what you make it. 18's and hugs,Susan Z On Dec 15, 2018 9:10 AM, esd...@rogers.com wrote: Wishing the best to you in the New Year. Sent from my LG Mobile -- Original message--From: 'Icandoallttc' via CMLHope Date: Sat, Dec 15, 2018 3:15 AMTo: cmlhope@googlegroups.com;Cc: Subject:[CMLHope] Merry Christmas and happy Holidays to all Hi allMerry Christmas and Happy Holidays to all. I am ending the year fighting another disease: thyroid. At least that’s what they think it is. Lost about 30 pounds: losing hair-sweating for no reason and more. I can’t take the meds as they make it worse. No matter what-fight on. -- -- [CMLHope]A support group of http://cmlhope.com-You received this message because you are subscribed to the Google Groups "CMLHope" group.To post to this group, send email to CMLHope@googlegroups.comTo unsubscribe from this group, send email to CMLHope-unsubscribe@googlegroups.comFor more options, visit this group at http://groups.google.com/group/CMLHope--- You received this message because you are subscribed to the Google Groups "CMLHope" group.To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com.for more options, visit https://groups.google.com/d/optout.-- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
Dear Nick and Elizabeth, Thank you for your lovely Christmas blessings email. I hope that you both have a year ahead filled with good health, moments of joy and wonder and lots of love. Warmest regards and 18's Beth -Original Message- From: NICK WOODS To: cmlhope Sent: Tue, Dec 18, 2018 9:45 am Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic Sending Merry Christmas and Happy Holidays to each of you. Nick's at year 15 with CML. For each day together we thank God and appreciate this time, this day.He's had muscle shrinkage, and the pains which we guess go with CML in muscle, joint, the spine. The hair loss. The sweating to the point of soaking parts of T-shirt and flannel when he's working on tractor or moving lumber and equipment. Sometimes being really chilly and layering clothes to keep warm or wrapping up in a blanket as well. AH! The Gleevec "wonders" years. Every day someone does or says something kind or is there when we need help even before we know we would need help, and we thank God for that person-for that moment in time. We decided we must pass these moments of goodness on in our way to othersnote, e-mail, phone call, smile, listening ear, praying for others, opening a door, a nice comment to a stranger.you all do these, too.Blessings upon Blessings and Blessed to be a Blessing to others,Elizabeth and Nick WoodsOn Tuesday, December 18, 2018 04:17:18 AM CST, wrote: |cmlhope@googlegroups.com | Google Groups || Topic digest View all topics - Merry Christmas and happy Holidays to all - 1 Update Merry Christmas and happy Holidays to all | Jeanie : Dec 17 01:29PM -0500 Hi Susan Thanks for the uplift and sorry for your problems. Did you have your thyroid checked. I first noticed my right pinkie was numb and then it went all the way to my elbow. Yes I too don’t want to leave the house. My daughters insist I do. Have a wonderful holiday and keep warm. It’s even cold in fl Love My Motto: Faith and Pills With Love Jeanie 🐠free Christian Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal | Back to top | You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. | -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Hi Shaun question
Hi Shaun and all my CML buddies here... Just wanted to wish everyone a peaceful and Joyful Thanksgiving. I know the holidays can be very grief inspiring when we have lost those we love both recently and in the past.. As I reflect upon the things I am most thankful for this holiday season, Marty is one of them. So are each of you who read what I right and even if you do not respond, say prayers for me and the rest of us. Wishing you all a happy holiday. !8's and love, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Wed, Nov 21, 2018 11:59 am Subject: [CMLHope] Hi Shaun question Hi Shaun I know you are in a lot of grief and if you don’t feel like talking about I will understand. I have never feared death but always feared that I would be in a lot of pain while dying. My question is did they give your dad pain meds before he went into hospice? I miss him so much as he was my advisor as well as my friend. Prayers to you and yours Jeanie My Motto: Faith and Pills With Love Jeanie 🐠free Christian Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Nov 19, 2018, at 9:52 PM, Marty Gartenberg wrote: Hi Sherri, This is Shaun. My family and I greatly appreciate your heartwarming gift. Thank you so very much for that. My Mom (his wife, Rachelle) sends her thanks, as well. Regards, Shaun On Wed, Nov 14, 2018 at 8:27 PM sherri swanson wrote: Hello Shaun, I am so very sorry to hear about your dad. He was such a kind and gentile man and he will be missed by many. I wanted to let you know that I have planted a tree in his name in Israel. May this serve as a living tribute to his memory. You and your family are in my thoughts and prayers. Marty will always be in my heart and on my mind. My heart is broken knowing I will not receive another message from Marty and we will no longer share share photos. As long as we live, they too will live; for they are now are a part of us; as we remember them. Regards, Sherri Swanson On Wed, Nov 14, 2018 at 6:29 PM Marty Gartenberg wrote: Hi everyone - This is Marty's son, Shaun, again. Thank-you all so much for all the stories, kind thoughts, wishes, and prayers for my Dad and our family. We are all so grateful to know how loved he was and how he was able to touch so many lives in a profound way. Hi Wayne - please do not cancel this thread. I am still checking in on it and relaying to rest of my family. Just as he helped others, you all are helping us, and we appreciate that, so much. Regards, Shaun On Wed, Nov 14, 2018 at 7:33 AM Wayne Becken wrote: Please cancel. Subscriber is deceased. From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] Sent: November-14-18 5:14 AM To: Digest recipients Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic cmlhope@googlegroups.com Google Groups Topic digest View all topics · Update on Marty G - 1 Update Update on Marty G Tracie Camlin : Nov 13 06:50AM -0600 Dear Shaun and Family, I am so sorry for your loss. He was truly an amazing person who inspired and supported so many of us. His strength and courage held me up at times he didn't even know about. He will be missed. Blessings and much love to you and your family. Best Regards Tracie Mulvaney On Sun, Nov 11, 2018, 3:24 PM rszim0702 via CMLHope < Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr.
Re: [CMLHope] Update on Marty G
Dear Shelly and Shaun, When I read your email to all of us my heart broke. I thought of you today at the funeral and said prayers for each of you as well as all the members of our group here. We are all in shock. I share the sentiments of everyone who has already written to you expressing their deep sadness and grief. To love and be loved by Marty was a gift I shall cherish all the days of my life. He was always a ray of sunshine, in a sometimes very scary and dark world. He pushed each of us to be our best selves, to fight a good fight, to live life to the fullest. The packed he made with his God when he came out of " the bubble" post his bone marrow transplant so many years ago...he fulfilled a thousand times over. He helped anyone and everyone wherever and whenever he could. His generosity of spirit, joy of life, good humor, compassion and humor will never be forgotten. He grounded us, inspired us, even scolded us when needed, He was our chief, our friend, our cheerleader and our faithful companion in navigating CML. He was a lover and a fighter. It is hard for me and others to comprehend what happened the last weeks of his life. What made him surrender. I trust he knew when it was his time. He always spoke of his love for his family. May each of you find comfort in knowing how loved he was and what a difference he made in the world. The light in his light house went out, but his spirit will continue to light our paths Love and a big hug to all of you... With tears and 18's, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Nov 12, 2018 8:26 am Subject: Re: [CMLHope] Update on Marty G I am so shocked and upset as I read this. I have been waiting for an answer to a question I had about my thyroid and since he didn’t answer I knew something was wrong. He was a true fighter and kept us going in our horrible journey with leukemia. He must have been in a lot of pain to give up. I am in pain daily so I know what’s it like to just want it to be over. He was the leader of our pack and I’m So sorry for your loss and ours. My prayers go out to you and family. Our list will never be the same. Love Jeanie My Motto: Faith and Pills With Love Jeanie 🐠free Christian Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Nov 11, 2018, at 6:34 PM, 'Marcie Goodman' via CMLHope wrote: Dear Shelly and Family, My deepest condolences on Marty’s passing. As so many of us in the group have expressed, Marty was our head cheerleader, a constant source of inspiration, support and love. He gave us a roadmap to navigate not only our illness but, more importantly, our lives. And he shared his challenges with honesty, facing each one with a strength of spirit that was unique. Marty let us know how much he loved you and your children and I know you feel a huge void now that he is gone. Please know that your family is in my thoughts and prayers. May warm memories of happier times comfort you in the days ahead. And may you all be comforted among the mourners of Zion and Jerusalem. Marcie Goodman Sent from my iPad On Nov 11, 2018, at 4:24 PM, rszim0702 via CMLHope wrote: Dear Shaun and family, Would like to comfort you as your dad so often comforted each one of us. No words except what a marvelous, godly and extravagant legacy he left for you. He left it for the cml group as well! The time spent with each of us was his ministry of joy over us all. He will surely be enjoying many rewards in the afterlife. May each of us in this group strive to leave even a portion of such a legacy at our passing. Our immediate reaction is to know what a huge hole will be left in the group and in our hearts. We called him our leader. Please know you are in my prayers. We will remember 18 stands for life and every day is a gift. Wish I could attend his services. I will be thinking of you all. 18's, hugs, bigger hugs, Susan Zimmerman On Nov 11, 2018 1:54 AM, Marty Gartenberg wrote: Hello everyone - This is Marty Gartenberg's son, Shaun. It is with great sadness for me to say that my father passed away this past week, on Wednesday, November 7th, after having entered hospice care the previous Friday, November 2nd. I know many of you were good friends with him and that he helped a lot of people through this support group. This all started with a bad fall over 7 weeks ago on September 15 in his garage where he fractured his left femur. He subsequently underwent surgery to get a rod implanted in the bone to help it heal. After a few weeks of physical therapy, a checkup showed that one of the screws needed to be adjusted, so he had a second surgery for that to
Re: [CMLHope] Please answer to see if I’m getting my mail
i Hi Greenie, Congrats on your new home! And the bass boat So good to hear from you. Are you flying in on Tuesday the 4th for your Wednesday the 5th appointment? Would you like to have dinner together Tuesday evening? I could meet you near Northwestern? I would love to meet you and Grace if she is coming. Let me know...you can email at my email. bkbar...@aol.com Thanks! 18's Beth -Original Message- From: myvety2k via CMLHope To: cmlhope Sent: Tue, Nov 6, 2018 6:07 am Subject: Re: [CMLHope] Please answer to see if I’m getting my mail Hi Beth, doing O. K.. Moved from South Fort Myers 2 months ago to Sebring, FL. Purchased a home there, Grace purchased me a Tracker bass boat so that I can go fishing, of course I'm making the payments.(smile). Will be flying into Chicago on Dec 5th, Northwestern Hosp. to see my Doctor and my most loving thing (Blood Work). another smile. Will let you all know how things turn out. Stay warm if you live North and Cool if you live South. Take care everyone. Greenie -Original Message----- From: bkbarney via CMLHope To: cmlhope Sent: Mon, Nov 5, 2018 12:06 pm Subject: Re: [CMLHope] Please answer to see if I’m getting my mail Dear Jeanie, Just wanted to say I am here, thinking of you and everyone else... The year is slipping by...and next week snow flurries in Chicago. Soon it will be Thanksgiving, Christmas and the New Year!!! Sorry about all the thyroid troubles.. Hopefully they can help you get with the right meds...Ggod endocrinologist will guide you!!! You have had more than your share of health problems.. You are a real trouper!! Love your positive attitude. Remember to advocate for yourself. If you are not satisfied...or feel worse...keep asking for help! Each of us needs to do this... I am doing O.K. Blood work for CML showing, but stable working on decreasing the inflammation in my body in the hopes that it might help my side effects and symptoms...still plugging along the stay positive attitude...is still finding meeven in the dark sometimes :), seeing the shadows so know the light is somewhere near by. Love to all.. and Marty, hope you are healing welland Richard, and Susan and Suzie Q and Greenie and everyone reading.. Hope each of you has a lovely and healthier holiday season!! 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Nov 4, 2018 11:14 am Subject: [CMLHope] Please answer to see if I’m getting my mail My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Nov 3, 2018, at 11:09 AM, 'Jeanie' via CMLHope wrote: Hi Marty my friend What do you mean? Thanks 🌺🌺🌺 My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Oct 1, 2018, at 6:20 AM, Marty Gartenberg wrote: Jeanie iam in rehab right now and need to have talk with you about YOU why in haven don't you where a led lined neck brace the next time you get in touch with me i will tell you. 18s Marty On Mon, Oct 1, 2018, 3:17 AM 'Jeanie' via CMLHope wrote: Hi all I got my thyroid test back. The counts err very high so went back to taking meds. Check it again in 6 weeks. I am sure it’s all these meds. Did you know even the X-rays from dentist can hurt thyroid. They say to asked for a protection mask. I have never heard about this in all my years at the dentist. You? They order mri like it’s a trip to the candy store I had 3 last year with no answers. If those tests are killing our thyroids then we need to be told. Right? Have s wonderful day. Love you so very much My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroup
Re: [CMLHope] Please answer to see if I’m getting my mail
Dear Jeanie, Just wanted to say I am here, thinking of you and everyone else... The year is slipping by...and next week snow flurries in Chicago. Soon it will be Thanksgiving, Christmas and the New Year!!! Sorry about all the thyroid troubles.. Hopefully they can help you get with the right meds...Ggod endocrinologist will guide you!!! You have had more than your share of health problems.. You are a real trouper!! Love your positive attitude. Remember to advocate for yourself. If you are not satisfied...or feel worse...keep asking for help! Each of us needs to do this... I am doing O.K. Blood work for CML showing, but stable working on decreasing the inflammation in my body in the hopes that it might help my side effects and symptoms...still plugging along the stay positive attitude...is still finding meeven in the dark sometimes :), seeing the shadows so know the light is somewhere near by. Love to all.. and Marty, hope you are healing welland Richard, and Susan and Suzie Q and Greenie and everyone reading.. Hope each of you has a lovely and healthier holiday season!! 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Nov 4, 2018 11:14 am Subject: [CMLHope] Please answer to see if I’m getting my mail My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Nov 3, 2018, at 11:09 AM, 'Jeanie' via CMLHope wrote: Hi Marty my friend What do you mean? Thanks 🌺🌺🌺 My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Oct 1, 2018, at 6:20 AM, Marty Gartenberg wrote: Jeanie iam in rehab right now and need to have talk with you about YOU why in haven don't you where a led lined neck brace the next time you get in touch with me i will tell you. 18s Marty On Mon, Oct 1, 2018, 3:17 AM 'Jeanie' via CMLHope wrote: Hi all I got my thyroid test back. The counts err very high so went back to taking meds. Check it again in 6 weeks. I am sure it’s all these meds. Did you know even the X-rays from dentist can hurt thyroid. They say to asked for a protection mask. I have never heard about this in all my years at the dentist. You? They order mri like it’s a trip to the candy store I had 3 last year with no answers. If those tests are killing our thyroids then we need to be told. Right? Have s wonderful day. Love you so very much My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message becau
Re: [CMLHope] Hello All!
Dear Richard, So sorry to hear about your struggles and hospitalizations. Sounds scary. So glad to hear that you are on the mend and starting to feel better...I shall keep you in my thoughts and prayers along will all of our community out therestruggling together and those who are feeling well, arre beacons of light for the rest of us, reminders that we can get through even the rough times together because we have each other. HI Marty! 18's to all, Beth -Original Message- From: Tony Lanoue To: cmlhope Sent: Wed, Oct 3, 2018 4:49 am Subject: Re: [CMLHope] Hello All! Hi Richard, glad to hear you’re on the mend. Try to walk a little bit, need to keep that blood pumping! Tony Sent from my iPhone On Sep 29, 2018, at 11:29 PM, Richard H wrote: I am sorry I have not posted in a while. I have been rather busy taking care of this older model body I have. I been in and out of the hospital about 4 times with low blood counts and fluid buildup in my lungs and legs. I am recovering, and have started to increase my energy level. We (doctors and me) are not sure what the causes are for sure. Heart, CML, or I just was too tired . Recovery is underway so all is well. I wish the best for those having problems. 18's Richard H. Still going after 17 1/2 years on Gleevec. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email tocmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Blood work Moffitt perfect
Marty,, so sorry to hear about your broken leg!! Oh my gosh! May you heal fast and well. Much love and 18's Beth And Jeannie- you have the right to see a doctor- just ask...sometimes we have to be very forth right about our needs. The system is very over crowded..those more acute often rise to the top of the lline. While this is sometimes appropriate, in many cases, I think we still deserve the right to have time with our doctors and get the support, guidance and reassurance we need. 18's to all, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Sep 25, 2018 3:43 am Subject: Re: [CMLHope] Blood work Moffitt perfect Jeanie you see you see you see what do i keep telling you change geers trust yourself now something else broke my leg had surgery in rehab talk later Marty 18s On Tue, Sep 18, 2018, 1:36 PM 'Jeanie' via CMLHope wrote: Hi all My blood work at Moffitt today came back perfect! Praise the Lord!! God is so good to me. Love you so very much ❤️😄❤️🌺😀 My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Blood work Moffitt perfect
So happy to hear this wonderful news. Thanks for sharing Jeanie. Happy and Healthy New Year to all who observe the Jewish Holidays. My update is that I continue to struggle, staying positive and trying to figure out what is going on with me. In the hospital for a few days a couple of weeks ago. Lots of tests..no answers...BCR last time was very different than it ever was before since on sprycel. 10x more bcrl abl cells but still a reasonably low ratio. So, I am praying that it will continue to work for me. The next blood test should tell us more. Will keep you all informed. Pray that it returns to my normal so I can focus on other related health issues. Happy fall to all... Much love, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Sep 18, 2018 12:36 pm Subject: [CMLHope] Blood work Moffitt perfect Hi all My blood work at Moffitt today came back perfect! Praise the Lord!! God is so good to me. Love you so very much ❤️😄❤️🌺😀 My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Breathing Difficulties [Dasatinib]
Also, I agree with Jeanie, check out any supplements or other medications you are taking. Tumeric, is known to increase the effectiveness and also the side effects of the sprycel. I tried to take it with the sprycel and got horribly sick... so another thing to consider... !8 s Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sat, Jul 28, 2018 12:44 pm Subject: Re: [CMLHope] Breathing Difficulties [Dasatinib] I need to clarify my post. My hubby had heart disease and I am the one with the cml. I never had the breathing problems with Dasatinib but it is a side effect and could be a lung problem. That is why I said don’t wait to get advice on what to do. It quit working for me after 4 years and I was put on Ponatinib. Read your leaflet that came with your meds very carefully. Make sure you aren’t taking a medicine that might interfere with dasatinib but report this to your onc right away. Good luck. My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Jul 28, 2018, at 1:32 PM, 'Jeanie' via CMLHope wrote: Hi there You may need oxygen. They gave my husband the choice of oxygen or not since he was borderline. I wish we had opted for but we didn’t. I don’t think I would wait for drs visit. Get it checked now. Just my opinion. Love you so very much My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal On Jul 28, 2018, at 9:26 AM, Gopalsamy Ragavan wrote: I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. For the last few months breathing difficulty is keep increasing. I am not able to take full breath. It is always half breath. I will discuss with my doctor in the coming visit. Did anybody else face the same problem? How did you handle? Please help. thanks, Ragavan -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://grou
Re: [CMLHope] Breathing Difficulties [Dasatinib]
Yes Ragavan, I too had the same problem. I can only take a small dose of Dasatanib because I get the plural effusions and swelling around the heart from the medication. It is a known side effect that can creep up any time. Many patients do just fine on a very specific dose, if they raise it, it can cause this problem you are describing. These TKi's can also impact the heart in other ways, but I strongly suggest that you see your doc and ask for a cardio-oncologist to help you. Those are cardiologists that specialize in how these cancer drugs impact the heart. The standard for sprycel patients, is that we do an echo cardiogram at least twice a year to make sure the heart is pumping well and there is no sign of PE etc. I do not know when you next appointment is scheduled, but I would not wait to long to get in to see your doc. It could be from the medication increase, it could be something else, but knowing is important, because swift action is needed so you do not under attend a potential big problem. If you cannot take a deep breath, and this is NOT your baseline, then that's a big problem. Sometimes we must push our doctors and fight to advocate for ourselves, to get the right testing, etc... If your doctor chose to push up your dose based upon your BCR-ABl testing, then talk with them. There are several TKI's out there and two in trials... Sending you strength, and peacego see your doc!!! Worried about you in Chicago.. Love to all, 18's Beth. -Original Message- From: Joyce Mesnarich To: cmlhope Sent: Sat, Jul 28, 2018 3:22 pm Subject: Re: [CMLHope] Breathing Difficulties [Dasatinib] Gopalsamy, I suggest you make an appointment with your CML specialist right now. My husband had the same experience with Dasatinib. Turned out it had caused fluid around his heart. Please get this checked out immediately. Joyce in Southern Illinois (USA) On Jul 28, 2018, at 8:26 AM, Gopalsamy Ragavan wrote: I was taking 50mg Dasatinib per day. An year back it was increased to 75mg. For the last few months breathing difficulty is keep increasing. I am not able to take full breath. It is always half breath. I will discuss with my doctor in the coming visit. Did anybody else face the same problem? How did you handle? Please help. thanks, Ragavan -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: Sudden problem after twenty years.
Hi Jeanie, Yep, have taken levothroxine since I was 30. Still on it without incident. Much love to all and 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Jul 17, 2018 10:58 am Subject: Re: [CMLHope] Re: Sudden problem after twenty years. Anyone have a thyroid problem? My Motto: Faith and Pills With Love Jeanie 🐠free Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired 0 CBL. ABL On Jul 15, 2018, at 12:44 PM, Marty Gartenberg wrote: Okay Jeanie, Since there is a lot to talk about I will do it between your lines. Hi That’s cute When I first started dating my hubby I was 16. When we went to leave I hugged and kissed my mom and dad goodbye. He told me later he had never seen that before. OH I DID, BECAUSE MY PARENTS CAME FROM EUROPE AND IT WAS THEIR CUSTOM THE WAY THAT THEY WOULD USUALLY DO IT WAS FIRST CAME MY MOM AND SHE WOULD HUG AND THEN KISS ME. THEN CAME MY DAD. WHAT HE WOULD DO WAS FIRST HUG ME THEN KISS ME AND THEN HE WOULD GIVE ME WHAT WAS CALLED A KNIPPLE. DO YOU KNOW WHAT A KINPPLE IS? WELL IT HURT LIKE HE NEVER WANTED ME TO FORGET HIM. HE WOULD GRASP MY CHECK BETWEEN HIS THUMB AND INDEX FINGERS AND SORT OF TWIST AND THEN LET GO. I COULDN'T WAIT TILL IT WAS OVER BUT AS I LEARNED LATER ON IN LIFE HE JUST WANTED ME TO KNOW THAT HE AND MOM WOULD NEVER FORGET THEM His mom and dad never hugged or kissed him. It was just the way we were. Kiss goodbye and kiss hello. BY THE WAY THERE IS A HEBREW WORD THAT YOU HAVE PROBABLY HEARD BEFORE, SHALOM. IT MEANS WHEN YOU ARE APPROACHING SOMEONE, HELLO, WHEN YOU ARE ON THEIR SIDE IT MEANS PEACE AND WHEN YOU PASS THEM IT MEANS GOODBYE I THINK THAT HE JUST NEEDED A KNIPPLE. Same way with my kids. I tell them a hug is better than a pill. How are you today? HEY JEANIE, KINPPLES FOR EVERY ONE. 😀 I’m waiting on my daughter as she will take me to a late lunch. I find my appetite not as good as it used to be. How bout you? BOTH OF MY PARENTS WERE COOKS AND MY FATHER WAS ALSO A BAKER. WE DIDN'T HAVE A LOT OF MONEY BUT WE SURE HAD A LOT OF BREAD. WE LEARNED TO MAKE DO. A WHOLE STORY BEHIND THIS BUT FOR ANOTHER TIME... I loved Millie’s cooking and recipes. I sure do miss her. She fought hard. I remember when she started losing the use of her arms she said she didn’t know what she would do if she couldn’t do her sewing and etc. though I never met her I felt I knew her all my life. More later—— THAT'S WHY I CALLED HER MOMMY LOTTIE. And she knew what 18's meant. So 18's, Marty, and a Knipple to you. On Sun, Jul 15, 2018 at 12:05 PM, 'Jeanie' via CMLHope wrote: Hi That’s cute When I first started dating my hubby I was 16. When we went to leave I hugged and kissed my mom and dad goodbye. He told me later he had never seen that before. His mom and dad never hugged or kissed him. It was just the way we were. Kiss goodbye and kiss hello. Same way with my kids. I tell them a hug is better than a pill. How are you today? I’m waiting on my daughter as she will take me to a late lunch. I find my appetite not as good as it used to be. How bout you? I loved Millie’s cooking and recipes. I sure do miss her. She fought hard. I remember when she started losing the use of her arms she said she didn’t know what she would do if she couldn’t do her sewing and etc. though I never met her I felt I knew her all my life. More later—— My Motto: Faith and Pills With Love Jeanie 🐠free Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired 0 CBL. ABL On Jul 13, 2018, at 9:52 AM, Marty Gartenberg wrote: Jeanie, And I love you to, but when you say "Love you so very much" Do you mean like hugging me so much that your going to crush me until my ribs crumble? Ah yet another opportunity to let me say again... 18's, Marty On Fri, Jul 13, 2018 at 9:16 AM, 'Jeanie' via CMLHope wrote: So true Marty You aren’t even on tki’s and look what you’ve been through. Thank you for this email. Love you so very much Jeanie My Motto: Faith and Pills With Love Jeanie 🐠free Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired 0 CBL. ABL On Jul 10, 2018, at 8:53 AM, Marty Gartenberg wrote: Oh Jeanie, first let me take you back to something I wrote to Richard I have heard a lot of people mentioning that they blame some of the TKI that they are taking. Perhaps that may be so, but what if it isn't that at all? That is why they need to consult with their doctors because that is his or her job.
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 updates in 3 topics
Thank you for sharing Elizabeth. It so inspires me, NIcks story, and despite the gleevec brain, ( sprycel etc..), hearing about long term survivorship is very hopeful to all of us. Much love to all. 18's Beth -Original Message- From: NICK WOODS To: cmlhope Sent: Sun, Jun 10, 2018 3:47 pm Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 updates in 3 topics Hi to all. Sounds like Jeannie has a great vacation in the mountains! Roberta, know you're hoping for "a visit home" and not to hospitals for a while. Hope you can be home now. Nick's had more skin cancers "frozen off" (burns like crazy doesn't it!) and a biopsy. We will find out biopsy results in a couple of weeks. The Dr. did an excellent surgery because it's healing well and no infection. It was only band-aid sized but deep. We're staying well and working around when we can keep cool and out of the day time heat. Cleaning up some more gardens then overplant with perennials to enjoy next year. Nick's Zauvie's Zero Club #803 15 years with Gleevec and CML (Isn't the Gleevec brain "fun!")lol Take care to all in the group, Elizabeth Nick's wife On Sunday, June 10, 2018 5:11 AM, "cmlhope@googlegroups.com" wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics Fantastic cabin. - 1 Update Cabin - 1 Update Flowers of the Smokie mountains - 1 Update Fantastic cabin. Jeanie : Jun 09 10:14AM -0400 Hi all. I highly recommend this cabin if you want to visit The Great Smoky Mountains. I loved it. Hated to leave. Love you so very much. My Motto: Faith and Pills With Love Jeanie 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL Back to top Cabin Jeanie : Jun 09 07:02AM -0400 My Motto: Faith and Pills With Love Jeanie 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL Back to top Flowers of the Smokie mountains Jeanie : Jun 09 07:02AM -0400 My Motto: Faith and Pills With Love Jeanie 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Great Smokie Mountains
So happy for you Jeanie that you are with family in such a beautiful place!!! Soak it inthanks for sharing. Thinking of everyone and sending love. I am on a drug holiday since May 25th. Will do blood work again in a week to make sure I am doing OK. Just not feeling well at all..somethingis up, but don't know what..will see doc next week and get help to assesshope all is well with everyone.. did buy flowers to put into pots in my back yardit's my haven in the summertime...so healing to be surrounded by flowers... 18's a love to all, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Thu, Jun 7, 2018 11:15 am Subject: [CMLHope] Great Smokie Mountains Having a ball. Shopping Cherokee today. Indians all around. ❤️ My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On Jun 6, 2018, at 4:49 PM, Pete Pabon wrote: Get Outlook for iOS From: 'Jeanie' via CMLHope Sent: Wednesday, June 6, 2018 4:45:57 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] New Canary hatchings Hi all Actually my mother was called Jean but I never have been. Don’t know why I signed it that way. My mom liked the song Jeanie with the light brown hair and she named me Jeanie. As for my hair it has fallen out a lot but I still have some. Pictures later. Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On Jun 6, 2018, at 12:33 PM, Marty Gartenberg wrote: Oh Susan, what are you and "Jean" going to do to me? Or better still what is everyone else going to do to me? Do you think that i should hide some ware?😂 18's Marty On Wed, Jun 6, 2018 at 12:12 PM, 'Susan Zimmerman' via CMLHope wrote: I noticed that, too! (Jean) Susan F. Zimmerman A merry heart does good like a medicine. -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Jun 6, 2018 12:08 pm Subject: Re: [CMLHope] New Canary hatchings Hey have a great time. Well one thing that bothers me. Since did you become a male subject? Now your sporting the name of Jean? Hey I hope that your still growing hair in all of the right places. Marty On Wed, Jun 6, 2018 at 11:00 AM, 'Jeanie' via CMLHope wrote: Hi all I’m in The great smokie mountains with my 2 daughters. She rented a fantastic cabin with indoor and outdoor fireplaces. We have been having a ball. Headed to Chimney Rocks to picnic today. Tell more when I get home. Love you so very much Jean My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On Jun 3, 2018, at 4:28 PM, Joyce Mesnarich wrote: Marty, I love canaries. But I have to say that your new babies are ugly. Sorry about that harsh statement, but all baby birds are ugly. I would like to see another picture when they have feathers. Through my life I have had about 5 canaries but they always got sick and died. I think that is a wonderful hobby to raise birds (with the exception of having to see them as babies without feathers). I’m sure they give you many hours of entertainment. How many adult canaries do you have? Do you have other birds as well? When my Mom was in the nursing home they had a large bird cage and we would sit and watch them for long periods of time. Please know that I am kidding about your ugly babies. Don’t hold that against me. They will be adorable in a short time. Hope everyone is doing well and staying cool. Here in the midwest we have had the coolest April on record…..and the HOTTEST May on record. We missed spring it seems. Joyce in Southern Illinois On Jun 2, 2018, at 11:52 PM, Marty Gartenberg wrote: Here are two new pictures of my newest baby canary chicks. There are two nests and the second has four eggs but so far they haven't hatched as yet. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email tocmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d
Re: [CMLHope] Beth
Just beautiful Marty!!! I love the stained glass... thanks for sharing!! -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, May 9, 2018 8:40 am Subject: Re: [CMLHope] Beth On Wed, May 9, 2018 at 9:38 AM, Marty Gartenberg wrote: Beth, Jeanie your learning from eachother and i am also learning from the both of you as you are learning from me. This is what it is. I always say that life is a learning process and well, it is. You must learn something new every day of your life. Now i would like to send you some pictures that i took of some of my projects that me and my wife did together mostly when i wasn't feeling very well, but i still did it. Shelly did the cutting for the most part and i did the grinding and fitting and the soldering, sometimes switching off but we did it together. And it made both of us feel that much better. Everything that you may see in these three pictures are things that we personally accomplished by ourselves including the crown moldings as well as the moldings on the ceiling. Both of us never said that maybe we should stop, but sat down and rested for a while and had lunch or watched TV and then got back to "business". Sure it sometimes taxed me out but i still continued on for weeks at a time or even months. There is a point to all of this, just get your priorities together and there is nothing that you can't accomplish. 18's, Marty On Wed, May 9, 2018 at 6:40 AM, 'Jeanie' via CMLHope wrote: Hi Beth and all I know exactly what you mean Beth. Sometimes I just want to go back to bed and do nothing. I have found however if you make a plan of what you want to accomplish that day it helps a lot. Even write it down. Start on it even if you don’t feel like finishing it. One time I made a plan to read the Bible again all the way through. I have read it before but this was just another plan. So each day I read a little and soon I had accomplished my plan. Well not soon but I did it. Getting through Job is difficult but well worth it especially since he fought disease daily. He had boils all over his body. Can you imagine! I love the part where it got to Leviathan. My granddaughter even drew me a picture of him. Now today is walking and gardening as long as I feel like it. If I get tired or weary I just rest. I remember when I was in the hospital and they wheeled that big old blood cleansing machine in my room I was in for it. They would hook it up and I had to my still for about 4 hours while my blood ran through this machine. I thought it would never be over. It never did any good. The next day my platelets and whites were right back up. I learned from Moffitt they don’t even do that. They just give you the pills and hope for the best. This last chemo Ponatinib has been the best chemo yet with the least side effects except for hair falling out. What do you take? I developed mutants to all the other chemo Just each day at a time and make a plan. Prayers. You have helped me a lot Beth. ❤️ My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On May 8, 2018, at 11:40 PM, Marty Gartenberg wrote: Just look at what your writing... Each and every day is another day so keep on blessing your medication because without it then it wouldn't be another day. Don't despair because you may feel like life is trying to give you a difficult time but then there are other days that that will restore your faith. I have been there and what i found out is that i am still here and by the way so are you. I have always told everyone that Leukemia is a powerful disease and so it is BUT so is your mind... Use it! 18's, Marty PS why do you think that all of my posts ends up with 18's? Because it means LIFE. On Tue, May 8, 2018 at 10:52 PM, bkbarney via CMLHope wrote: Dear Marty, I sing praises every dayfor my life and for sprycel. I even bless my medication in my hand before I take it each night.. my little ritual. the side effects of the medication coupled with the two botched surgeries have left me with a great deal to navigate daily. I know I am blessed. But today I am just very very very weary. Tomorrow is another day... Hope everyone is well and enjoying spring...one day at a time...breath in the flowers and enjoy!!! Love to each and every one of you...and thanks for reading.. 18's B -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, May 8, 2018 2:21 pm Subject: Re: [CMLHope] Beth Hi Beth and great news. Are you any pain? Marty I wanted to asked you if you they gave you any meds for pain? Did you ever have to take anything for leukemia ever again? Can you walk well?
Re: [CMLHope] Beth
Dear Marty, I sing praises every dayfor my life and for sprycel. I even bless my medication in my hand before I take it each night.. my little ritual. the side effects of the medication coupled with the two botched surgeries have left me with a great deal to navigate daily. I know I am blessed. But today I am just very very very weary. Tomorrow is another day... Hope everyone is well and enjoying spring...one day at a time...breath in the flowers and enjoy!!! Love to each and every one of you...and thanks for reading.. 18's B -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, May 8, 2018 2:21 pm Subject: Re: [CMLHope] Beth Hi Beth and great news. Are you any pain? Marty I wanted to asked you if you they gave you any meds for pain? Did you ever have to take anything for leukemia ever again? Can you walk well? My daughter bought me a wheel chair just in case I get to tired of walking. Do you walk well Beth? So happy you are in remission. I’m in remission too but I know from experience how leukemia can test it’s ugly head. Prayer and pills is my motto and it’s working. Good luck Jean My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On May 8, 2018, at 8:40 AM, Marty Gartenberg wrote: Beth, Beth, Beth, What can i say, As you mentioned you are now UN-detectable, but what you should have written should have more piazzas to it. Something like shouting it at the top of your voice on the top of a high mountain with your hands and arms reaching upward and stretched and extended out to HIM. Well Beth sometimes i get carried away but please scroll down. BUT NOT THIS TIME🌷 Do you know why? It took place more then 30 years ago. Once my bone marrow transplant was finished after being confined inside of that bubble that i was in about a week before i was to be finally discharged i still had to wait that one week and i was fixated on the clock within that bubble with that second hand ticking away. Tick Tock, tick tock, tick tock I waited for the seconds to tick away the whole day and night until i finally fell asleep, and then i was woken up again and it continued on for most of that never ending week. I was in there for seven months and let me tell you it was more then horrible but i had to do it until the final seconds that i was able to finally to leave there, or so i thought only to find myself back in there two weeks later because of a severe infection from my in chest Hickman catheter that put me back in there for another two weeks. Was it all over? Not until i was about to leave that plastic bubble and at that time i raised my hands fully extended and ripped that clock right off the wall and since i finally had my shoes on i STOMPED the life of that clock to death. However, on that original day that i was discharged from the hospital it was raining like cats and dogs coming out of the sky and i just stood there in the street and let the rain populate on my face and then i remember raising my hands and arms up toward HIM and it was finally over with. Oh yes i am not kidding, about a week later i received a bill in the mail for $25 for the clock that i put out of my misery and it was marked PAID. And there was a reason for that. To be continued. There is a Moral to this story... Beth all that you need to do it put your hands and arms up toward the sky and HE will do the rest. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receivin
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
Thanks for the beautiful pictures Marty... So uplifting I got my BCR back today, undetectable... yea! So that is my news for today.. Love to all.and happy Spring, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Mon, May 7, 2018 6:11 pm Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic Hi Victoria, Nice to be hearing from you. First, how are you doing? I hope that you are well. As for me well i just go on and on just like that pink energizer bunny. But my feet aren't as large as his (or could be hers) you never know who is who and what is what. But what i do know is i am me and Shelly is her and you are you... If that makes any sense. We just cam back from a cruise and had a wonderful time but i came back with a terrible cold and that is a no no for me because i have a difficult time dealing with my immune system because of all the immune suppressible medication. But so far so good. Please don't be a stranger. Thanks for ringing my bell. 18's, Marty On Mon, May 7, 2018 at 2:28 PM, Victoria Reiter wrote: Been a long time. Trust you are well and holding steady. On Tue, Feb 27, 2018 at 5:15 AM, wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics The Daffodil principal - 1 Update The Daffodil principal Marty Gartenberg : Feb 26 09:20PM -0500 Just sit back and relax when your day isn't what it should be. It is somewhat of a long read but the pictures are unbelievable. Marty Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Jeanie’s garden
So happy you and Shelly got to cruise the world Marty I am very happy to hear this.. Love and 18's Beth -Original Message- From: Richard H To: CMLHope Sent: Tue, May 1, 2018 10:49 pm Subject: Re: [CMLHope] Jeanie’s garden Wonder way to enjoy yourself. I'm glad you were able to enjoy it. My little brother took a cruise around the world that lasted 10 months. Glad you are home. Richard H.. On Tuesday, May 1, 2018 at 3:05:51 PM UTC-5, wa2yyx wrote: Hi Jeanie, I just love your garden! Oh yes i do! Just the thing to pick you up. I haven't been on for a while. Shelly and I just came back from a ten day cruise to the Panama Canal, Panama itself, Costa Rica, Lomol, Jamaica, Grand Cayman, South America and more. Since i was ill for a long time we had to stop cruising for several years. Now since i am starting to feel better we promised ourselves to just go on and try to enjoy ourselves. We had a wonderful time but are real tired out now, and have to rest, and what better way is to just sit back and look at your garden. How's that... 18's, Marty On Mon, Apr 30, 2018 at 5:59 AM, 'Jeanie' via CMLHope wrote: Garden is my quite place My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope]
Dear Jeanie, Cannot wait for you to go to the Smoky Mountains with your family...something to look forward to and June is just around the corner!!! I hope and pray that you stay well enough to go and enjoy!!! Glad your blood is good but sorry your struggles continue.. you are such a trouper! I just saw Dr. Druker in Oregon along with a new doctor he recommended for me to see. Both were very productive visits...waiting 10 days for blood work to come back so will see what BCR is then. May go on holiday again if numbers are good. ' Hope everyone out there is hanging in there and enjoying the true arrival of spring...finally, yea Jeanie, I am trying garden a bit myself, it makes me so happy Much love and 18's to all, Beth -Original Message- From: Richard H To: CMLHope Sent: Sun, Apr 29, 2018 11:06 pm Subject: Re: [CMLHope] Jeanie, yes I sometimes see the nurse practitioner. I had one with the VA and occasionally at my office. I have had good luck working with them. Richard H. On Sunday, April 29, 2018 at 5:38:31 AM UTC-5, Jeanie wrote: Hi Joyce So glad to hear from you and to know your hubby is good. Can he walk? If he can walk some twice a day. That will help with the weight. I have been trying to garden some. Can’t hold out to long. Moffitt visit was kk. They turned me over to a nurse practitioner. Is that natural if you lose your doctor. Maxine Extraman is my dr but I didn’t see her. I’m not to happy about that. Do any of you see practitioners ? Oh well, not to much they can do at this point. My blood is good. My daughter rented a beautiful mountain cabin for June. Grand Smokies Mountains. Can’t wait. We took our kids to the mountains every summer when they were growing up. It is beautiful. Pray that my health stays good enough to go. Thanks. Love to you all. Still out there Norm? Let’s hear from all. Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On Apr 26, 2018, at 10:54 PM, Joyce Mesnarich wrote: Amazingly entertaining. Thank you Marty. I haven’t posted for awhile. My hubby just had a visit with Dr Talpaz in Ann Arbor and things are going well. Dr Talpaz continues to “encourage” him to lose weight. He says CML will not kill him but his weight could. I do what I can. I continue to improve after my surgery. We are eager to welcome spring but it won’t make its appearance. Hopefully some day soon. God bless and keep you all. Joyce in Southern Illinois. On Apr 26, 2018, at 9:26 AM, 'Jeanie' via CMLHope wrote: Wonderful Marty Hope you are good. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center 0 CBL. ABL On Mar 18, 2018, at 12:09 AM, Marty Gartenberg wrote: I know that some were not able to open it due to some technical problems but here is something else. It is called the magical marble music machine. It has 2,000 marbles in it, and it is all hand made. Enjoy this it is very unusual. But so am i.😁 https://www.youtube.com/watch?v=IvUU8joBb1Q Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email
Re: [CMLHope] Beth muscle issues
Your Motto is a good one for you Jeanie, Faith and meds as needed...you really are blessed with such a large and amazing family!!! When is your birthday???Happy almost 80!! Love and 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Thu, Apr 5, 2018 6:48 am Subject: Re: [CMLHope] Beth muscle issues Thank you so much and sorry for waiting so long to answer. As you know I have been suffering with pain under my right rib for years now. In 2009 I was switched from gleevec to tasing a. The pain under my rib increased and my onc At that time gave me tramadol. It seemed to help for a while. The. I went out of remission and had to be hospitalized while they cleansed my blood. I kept asking my onc to put me on spyrcel but he wasn’t familiar with the drug and kept refusing. A nurse that had worked at Moffitt finally convinced him to do so. About this time I decided I needed to go to Moffitt. So after getting my sprycel I got an appointment with Dr Balducci at Moffitt. Sprycel put me in remission for 4 years and then developed a mutant. The newest thing out was Ponatinib and he put me in that. It put me back in remission in 3 Months. But on this drug my right side pain became unbearable and my onc put me on oxycodone. I had every test available if they ant find cause of the pain so my only choice is to treat the pain. Then the pain in my right pinky started and went to my elbow waking me up at night in terrible pain. Sometimes burning in my feet and pain also. Dr Balducci has retired and I now have his colleague Dr Martine Extermann but only met with her once. I am just trying to work through this pain and keep active when I can. Faith and pills is my motto. I will be 80 soon. My daughter is giving me a pool party with all family. 5 children 14 grandchildren and 15 great grandchildren. I am so blessed. I lost my hubby of 42 years in 1998 from diabetes and heart problems. Thanks for uplifting me and keep up the good work. I pray for your body to heal. Blessing My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extramine 0 CBL. ABL On Mar 23, 2018, at 12:45 AM, bkbarney via CMLHope wrote: Dear Jeanie, So good to hear from you. I know you struggle with lots of different things...and yet carry on...and stay strong with your faith and friends etc...80 years youngsounds good to me.. I am in my mid fifties so need to work, so praying I will be able to do so for a long time to come. My answer to your question is a bit complicated. Spraining your ankle, that REALLY can hurt... That type of pain my docs would recommend arnica spray or/ and some advil or similar anti inflammatory..your bones and muscles are two different things..so if both are waking you up at night...I would ask the doc about that..does massage help??? is it like a cramp or a deep ache? Ponatinib is known for some specific side effects...but it could be arthritis etcremember to stay really hydrated as that can cause real muscle cramping at night... My situation is that the TKI's created a pretty immediate elevation in my CPK levels..a test that measures muscle breakdown...so the sprycel does a great job for me but also inhibits other processes in my particular case, ( as we are all different and the drugs seem to affect us all quite differently) so my muscles have a ahrd time repairing and when I am active for a period of time, my body starts to hurt all over..muscularly, I can start to feel weakened and in a lot of pain. Good rest, some aspirin or upon rarer occasion, tramadol seems to help, so does therapeutic massage when I can afford it as well as being in the warm water pool...very soothing and relaxing to the muscleshate the chlorine, but love the feeling!! My love and 18's to all.spring is here,, the weather just needs to wake up to that fact! Write soon, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Mar 11, 2018 5:52 am Subject: [CMLHope] Beth muscle issues Hi sweet Beth So glad to hear from you and get our uplifts we so badly need. I sprained my muscle in the top part of my right leg and it really hurt. Then my bones a muscles started to wake me up at night. I get up and massage them. I was wondering if you are under a doctors care for the muscles and what they told you to do for pain and all. I take Ponatinib and have for 3 years this Jan. I limped for about a week but it's gradually getting better I don't think I could work but I am 80 years young in May. Looking forward to your advice. I still walk and do some house work and gardening. Love you so very much. Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/200
Re: [CMLHope] Beth muscle issues
Dear Jeanie, So good to hear from you. I know you struggle with lots of different things...and yet carry on...and stay strong with your faith and friends etc...80 years youngsounds good to me.. I am in my mid fifties so need to work, so praying I will be able to do so for a long time to come. My answer to your question is a bit complicated. Spraining your ankle, that REALLY can hurt... That type of pain my docs would recommend arnica spray or/ and some advil or similar anti inflammatory..your bones and muscles are two different things..so if both are waking you up at night...I would ask the doc about that..does massage help??? is it like a cramp or a deep ache? Ponatinib is known for some specific side effects...but it could be arthritis etcremember to stay really hydrated as that can cause real muscle cramping at night... My situation is that the TKI's created a pretty immediate elevation in my CPK levels..a test that measures muscle breakdown...so the sprycel does a great job for me but also inhibits other processes in my particular case, ( as we are all different and the drugs seem to affect us all quite differently) so my muscles have a ahrd time repairing and when I am active for a period of time, my body starts to hurt all over..muscularly, I can start to feel weakened and in a lot of pain. Good rest, some aspirin or upon rarer occasion, tramadol seems to help, so does therapeutic massage when I can afford it as well as being in the warm water pool...very soothing and relaxing to the muscleshate the chlorine, but love the feeling!! My love and 18's to all.spring is here,, the weather just needs to wake up to that fact! Write soon, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Mar 11, 2018 5:52 am Subject: [CMLHope] Beth muscle issues Hi sweet Beth So glad to hear from you and get our uplifts we so badly need. I sprained my muscle in the top part of my right leg and it really hurt. Then my bones a muscles started to wake me up at night. I get up and massage them. I was wondering if you are under a doctors care for the muscles and what they told you to do for pain and all. I take Ponatinib and have for 3 years this Jan. I limped for about a week but it's gradually getting better I don't think I could work but I am 80 years young in May. Looking forward to your advice. I still walk and do some house work and gardening. Love you so very much. Jeanie My Motto: Faith and Pills With Love \uD83D\uDC2018's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extramine 0 CBL. ABL On Mar 10, 2018, at 8:41 PM, bkbarney via CMLHope wrote: Dear Marty, Jeanie, Greenie, Susan, SuzieQ, Richard, Kristen and everyone else who am forgetting because of my chemo brain. I am here, think about everyone often...had a bad flu season...really starting to feel better only nowWow17 years for both Kristen and Jeanie!! Congrats...I just hit 8 years on February 12thTime marches on..so glad to be here with all of you... My latest blood work came back undetectable...so I was very happy to see thatstill navigating the severe muscle fatigue, deterioration issues, and some heart sprycel related stuff..but I am truly blessed to be here...and to still be able to work love to all of you out there.the glass is half full in Chicago! 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: wa2yyx ; cmlhope Sent: Sat, Mar 10, 2018 4:18 pm Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic For me it's been 13 years. 18's, Susan F. Zimmerman On Saturday, March 10, 2018 Marty Gartenberg wrote: Hi Jeanie, Wow 17 years! Good for you as well. My congratulates to you. Hey are you catching up with me? 30 years for me. Time fly's by when your riding on the Marquis Express. Okay now lets all sing along all of you people out there...`\uD83D\uDE4E\uD83D\uDE46\uD83D\uDC81\uD83D\uDE4B\uD83D\uDE47\uD83D\uDE4C\uD83D\uDEB6\uD83C\uDFC3\uD83D\uDC83\uD83D\uDC6B\uD83D\uDC6C\uD83D\uDC6D\uD83D\uDC8F\uD83D\uDC91\uD83D\uDC6A 18's, Marty On Sat, Mar 10, 2018 at 5:00 PM, 'Jeanie' via CMLHope wrote: I am celebrating 17 years also. I'm on my 4 tki: Ponatinib. Been a rough ride. How bout you! My Motto: Faith and Pills With Love \uD83D\uDC2018's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extramine 0 CBL. ABL On Mar 10, 2018, at 2:10 PM, Kristin Lieberman wrote: I’m here. Celebrating my 17th year as a CML survivor! Kristin Sent from my iPhone On Mar 10, 2018, at 2:11 AM, cmlhope@googlegroups.com wrote:
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
Dear Marty, Jeanie, Greenie, Susan, SuzieQ, Richard, Kristen and everyone else who am forgetting because of my chemo brain. I am here, think about everyone often...had a bad flu season...really starting to feel better only nowWow17 years for both Kristen and Jeanie!! Congrats...I just hit 8 years on February 12thTime marches on..so glad to be here with all of you... My latest blood work came back undetectable...so I was very happy to see thatstill navigating the severe muscle fatigue, deterioration issues, and some heart sprycel related stuff..but I am truly blessed to be here...and to still be able to work love to all of you out there.the glass is half full in Chicago! 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: wa2yyx ; cmlhope Sent: Sat, Mar 10, 2018 4:18 pm Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic For me it's been 13 years. 18's, Susan F. Zimmerman On Saturday, March 10, 2018 Marty Gartenberg wrote: Hi Jeanie, Wow 17 years! Good for you as well. My congratulates to you. Hey are you catching up with me? 30 years for me. Time fly's by when your riding on the Marquis Express. Okay now lets all sing along all of you people out there...`\uD83D\uDE4E\uD83D\uDE46\uD83D\uDC81\uD83D\uDE4B\uD83D\uDE47\uD83D\uDE4C\uD83D\uDEB6\uD83C\uDFC3\uD83D\uDC83\uD83D\uDC6B\uD83D\uDC6C\uD83D\uDC6D\uD83D\uDC8F\uD83D\uDC91\uD83D\uDC6A 18's, Marty On Sat, Mar 10, 2018 at 5:00 PM, 'Jeanie' via CMLHope wrote: I am celebrating 17 years also. I'm on my 4 tki: Ponatinib. Been a rough ride. How bout you! My Motto: Faith and Pills With Love \uD83D\uDC2018's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extramine 0 CBL. ABL On Mar 10, 2018, at 2:10 PM, Kristin Lieberman wrote: I’m here. Celebrating my 17th year as a CML survivor! Kristin Sent from my iPhone On Mar 10, 2018, at 2:11 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics Hello - 1 Update Hello Marty Gartenberg : Mar 09 04:12PM -0500 Hello, hello... Is anyone out there? 18's, Marty Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For mo
Re: [CMLHope] My annual appreciation day
Dear Joyce, Oh my gosh!!! You have been through so much!! You are amazing! . I am so glad you came through your surgery and complications and get to be back home with your hubbie...glad that your daughters were able to help out as well!! Glad you are back here...take good care and keep on healing 18s and care, Beth -Original Message- From: Joyce Mesnarich To: cmlhope Sent: Fri, Feb 16, 2018 11:09 pm Subject: Re: [CMLHope] My annual appreciation day Beautiful slideshow, Marty. Thank you. Have not been on this site for 3 weeks. Went to ER with gallbladder attack and they did a CAT scan and noticed that my old hiatal hernia that has been bugging me for some 20 years had twisted, and evidently that is a very bad thing, because they put me in an ambulance and sent me from our local hospital to BarnesJewish in St Louis and said I would have emergency surgery as soon as I got there. That didn’t happen but I was in the hospital for 3 days as they did test upon test. I went home for 3 days and had surgery on Monday the next week. Had gallbladder removed and hiatal hernia was repaired. I was doing very well and planned to go home on Wednesday when my oxygen levels went down. Long story short: I had blood clots in both lungs and one in my right calf. Was in hospital for 8 days and came home using belly shots of Lovenox to bridge to warfarin. Am doing better and gaining strength. Had to eat pureed food for 2 weeks. Now on soft diet. It was a trying time because I am the caregiver for my husband who has CML and is also legally blind. But we pulled through with the help of our two daughters. I’ll have to get caught up on what went on while I was out of commission. Joyce in Southern Illinois > On Feb 16, 2018, at 10:36 AM, Marty Gartenberg wrote: > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Yahoo!! Yippie!!! I'm 0
Happy happy happy Jeannie...I agree with Susanless meds = less side effects :) Love, Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Sun, Feb 4, 2018 9:16 pm Subject: RE: [CMLHope] Yahoo!! Yippie!!! I'm 0 Sooo happy for your numbers, Jeanie! Maybe when they cut your meds in half that side pain will go away!!! I pray it does 18's and hugs, Susan Z. On Thursday, February 1, 2018 'Jeanie' via CMLHope wrote: I saw my new doctor at Moffitt. Her name is Martine Extermine. She works also with the seniors and I liked her a lot but she had a lot put on her shoulders. Had to take over all Dr Balducci's patients. II got good news. I asked her what my last BCR ABL tests results were and she said 0's. Am I cured? I don't think they know but they are doing a study for those of us doing well on our test. It's cutting patients to half doses you have to be checked once a month. What does the group think about it? Hope everyone is good today. Blessings. V My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] off Sprycel
HI Choi, This sounds very difficult. While your friend is not in molecular remission his blood work is stable..it has not spiked while on less sprycel. Is it possible he could go on 40 mgs or 40 five days a week and 60 two days a week? Sometimes just enough medication will keep the plural effusions at bay, while still keeping the cancer at bay as well. The risk is getting resistant, which he has already done with the Gleevec. But there are other options and another in trials that works in a different area than the other TKI's that is showing promise. So hopefully your friend can find the right med at the right dose to keep his disease in check. He may not tolerate full doses of the more recent and more potent meds..but there are several left to try. I can only tolerate 40 a day. Keeps me in check. I cannot go off med as I cannot take a high enough dose to get into that level of remission..but it works for me. Others who did not tolerate Sprycel have gone on bosutinib and it has worked for them... Take good care.. 18's hope and love, Beth -Original Message- From: Jamie Tufariello To: cmlhope Sent: Thu, Jan 25, 2018 10:44 am Subject: Re: [CMLHope] off Sprycel On Tuesday, June 9, 2015, Choi wrote: Hi, this is Choi from South Korea. One of my CML friends had some problems and I just wonder who had a similar experience. He was diagnosed with CML chronic phase on july 2012 and started Gleevec 400mg for 16 months and switched to Sprycel due to E355G mutation. At that time his PCR was 1.89. He started Sprycel and E355G mutaiton was disappered. He was on Sprycel for 12 months. He developed pleural effusions after 12 months of Sprycel at that time his dose was 100mg. His doctor stopped Sprycel for 2 weeks and restarted Sprycel 80mg for 3 months. Once again he developed pleural effusions so he was off Sprycel for 4 weeks and restarted Sprycel 60mg until now and still had minor pleural effusions. PCR count was 0.37, 0.47, 0.45 and never drop to under 0.1% so his doctor was considering to switch to other drugs but hesitated to switch because of he had E355G mutation. Is there any one who had a similar experience? Choi. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] CML and Gleevec-Thankful for another year
Ditto...to all a very happy, healthier and peaceful New Year. Thanks to all for caring about me and each other...It makes this journey so much easier to walk.. My best to all of you.. I am still waiting on BCR blood work... will report when I know something Love and 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Jan 1, 2018 9:41 am Subject: Re: [CMLHope] CML and Gleevec-Thankful for another year Thank you Marty I think our body needs a vacation from these tki's now and then. I hope my new doctor will be more understanding about my pain. Thanks for the group and all your prayers. One more year to show the world the courage we have. Love you so very much. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Dec 31, 2017, at 11:18 PM, Marty Gartenberg wrote: Jeanie, Hey this is a special group, and we have to thank each other for trying to help each other. I am delighted to know that your finally going to speak to your doctor and please don't forget too let him know that you already have taken some "vacations" from your Gleevic because you really want him to try and realize that you are still doing okay. I wish that each and every one of you a very HEALTHY and HAPPY New Year. You really are warriors. 18's Marty On Sun, Dec 31, 2017 at 3:12 PM, 'Jeanie' via CMLHope wrote: Happy New Year to all. Let's pray the new year brings in much less pain and a more enjoyable life. Thanks Marty for the advice about pain. I'm gonna talk it over with my new doctor. Fireworks gonna keep me awake I'm sure. Love you so very much. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Dec 29, 2017, at 12:25 PM, Marty Gartenberg wrote: On Fri, Dec 29, 2017 at 12:21 PM, Marty Gartenberg wrote: Hi Jeanie, To answer your question about what i do for pain. It depends on what kinds of pain that i am having and it's intensity and how long it lasts. If it's light to moderate then i just try to relax my mind and try to deal with but severe pain must be dealt with but i try not to use any opiates but try anything else that may help me but some times i have to use some opiates but not for a long time. Here is a joke for better words to use. I went to the doctor because i hurt my leg every time my fingers touch my leg. No problem says the doctor and he takes out a hammer and hits my hand. I yell out why did you do that, now my hand hurt so badly, my leg doesn't hurt as bad as my hand... Exactly says the doctor. 18's Marty PS Yes I do remember Millie On Fri, Dec 29, 2017 at 9:33 AM, 'Jeanie' via CMLHope wrote: Hi Elizabeth and thanks for the uplift. My dryer just decided to hit the dust probably just old age like me. Hehe. Wonderful day with beautiful weather. When I would tell my doctor I was old he would say he didn't want to hear about age. He is in his 70s and still going strong. Well he is retiring and I wish him all the best. He is Dr Balducci head of the senior department of Moffitt Cancer center. What is neat is that his wife is head of senior department of the veterans department of the veterans hospital that is located right up the street from Moffitt. My right hand is still hurting and always wonder what is next. How many here have the tradition of black eyed peas and ham hock? Don't know why. My sister had 4 wheelers and I got talked into taking a ride. I was scared to death. They had 5 acres of woods and away we went. Fun ride but scary none the less. Marty, what do you do for pain? Remember Milly? She used a lot of heat and cold with opiates. I think that was before they cracked down on opiates. Happy New Year everyone! My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Dec 26, 2017, at 9:46 PM, Marty Gartenberg wrote: Hi Elizabeth W, Ever think that Nick is here for a reason? Well he is for sure. A very blessed healthy and happy New Year to him, and you as well... I would like to teach you a word: Bashert meaning: It's meant to be. 18's, it's meaning is LIFE. Marty On Tue, Dec 26, 2017 at 9:36 PM, Nick wrote: Hi, Nick's been on Gleevec since 2003. He's on 400 of Gleevec, too. Yes, he's noticed he's dropping things from his fingers. We're not sure just why, but try to not hold anything which might break or spill. We hope everyone had many blessings from your Christmas or Holiday Season. We have been counting the biggest blessings of being together another year, having good contact wi
Re: [CMLHope] Hospital for Thanksgiving.
Greenie, I am thinking about you too and hoping and praying that your kidneys will hold. It is a scary thing to have to live with fear and uncertainty. We are all with you.. I cannot imagine what it is like to lose a son, but I think you have a great deal of soul and resiliency to survive such a lose...and I imagine that you will navigate the kidney issues with the same grace you and your sweetie have navigated this past year. Grief can be so isolating and lonely..especially during the holidays.and so can living with a life threatening illness...as long as you are here, we are never alone.I am holding you both and Richard..and Marty, and Susan and Jeanie and and everyone else reading this stay positive...soak in the genuine love of this grouplike the suns rays... love, and 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Tue, Nov 28, 2017 3:58 pm Subject: Re: [CMLHope] Hospital for Thanksgiving. Dear Richard and Greenie, You two are fighters. I know you can beat this attack on your kidneys by being patient and eating and drinking what they tell you to. So sorry, I will be praying for you both. 18's and hugs, Susan Z -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Nov 28, 2017 8:33 am Subject: Re: [CMLHope] Hospital for Thanksgiving. Richard, I hope everything works out for you I am having the same problem because I have stage 3 kidney disease and it's scary. greenie In a message dated 11/28/2017 12:30:26 A.M. Eastern Standard Time, rbhuffm...@gmail.com writes: Well riding the tide just didn't work out. I was having problems Sunday the ninteenth with kisneys & such. Monday Morning all fluids stopped. My Son was in and watched over me and when I did not recover on Tuesday he took me to Doctor for testing and results sent me to hospital. We still have not found the current problem with Kidneys, but did have a severe infection. I am slowly recovering and back at home. I have Cronic Kidney desiease beaacuse of TOO Many Powerful drugs. This is the first flair up and everything the Drs. want to hear just aren't there for them to work with. Seems like I am always a speciman for them to stand and scratch their chin and always say "I've never seen anything like that!" 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because yo
Re: [CMLHope] Hospital for Thanksgiving.
Dear Richard, So sorry to hear about your troubles with your kidneys...These powerful drugs have affected many of us in many ways, including kidney function. I am hopeful that you will make a complete recovery and with proper and thoughtful care, you will be better very soon. You have been through a great deal already..you will get through this. I will keep you in my prayers..Take extra good care of yourself and remember to advocate for yourself, ask questions, and be sure they do not give you something to fight an infection that can cause ore problems for other organs. it's a delicate balance and we must all be our own advocates...Your body is strong and so are you...you can do this believe in you! Keep us posted...this is another bump on a long journey... take good care.. much love and 18's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Nov 28, 2017 9:08 am Subject: Re: [CMLHope] Hospital for Thanksgiving. Richard, First and most important is what kind of doctor you went to??? Was he or she a Nephrologist? As you know they are the ones that specialize with kidneys. If that doctor is not then i urge you to follow up with one. >From what i know having a sever infection will most probably effect your >kidneys, but it is usually reversible. A lot of antibiotics will also do the same. In fact I know all about it because i had to have a kidney transplant but not for the same reason. Almost 29 years ago i had CML and subsequently a BMT which caused my to undergo total body radiation and huge amounts of chemotherapy. Then about twenty years later my kidneys failed and then for four years, dialysis then a kidney transplant. Now mind you Richard this should not happen to you but for my own circumstances it did happen to me. Now guess what? I was just released from the hospital because of a severe sepsis infection. Because of my knowledge when some of the IV antibiotics were offered to me one of which was Vancomycin because of my condition. Don't get me wrong Vancomycin is a very good antibiotic and i have used it many times, i even had to use it by myself during home care and i would sit there with an IV pole for a couple of hours under that home care nurse, but for the most part i did it by myself. Trust my i know what i am talking about and there are always some good things and also some bad things but the bottom line is that i am still alive and functional. Hey, I have been through the "ringer" but then so have most of you as well, and that bottom line also exists for everyone that may be reading this. You just have to know how to ask questions, try getting to the best doctors that you can, and be an advocate for yourself. You would really be surprised for yourself how it works. I have spent many, many hours on this because i have an obligation that i once made and i try living up to it. Now have you wondered why i end my communications with 18's? Well now you do, it is my obligation. 18's, Marty On Tue, Nov 28, 2017 at 12:30 AM, Richard H wrote: Well riding the tide just didn't work out. I was having problems Sunday the ninteenth with kisneys & such. Monday Morning all fluids stopped. My Son was in and watched over me and when I did not recover on Tuesday he took me to Doctor for testing and results sent me to hospital. We still have not found the current problem with Kidneys, but did have a severe infection. I am slowly recovering and back at home. I have Cronic Kidney desiease beaacuse of TOO Many Powerful drugs. This is the first flair up and everything the Drs. want to hear just aren't there for them to work with. Seems like I am always a speciman for them to stand and scratch their chin and always say "I've never seen anything like that!" 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Email change
I got information as well, but that AOL was not going to be a usable service as of December 15th, so I needed to change my email and am in the process of opening up a gmail account. When I do I will forward my new email address to everyone here. I also have had AOL for decades and while it became a free service years ago for anyone who wanted to add or already had an account, I too pay a monthly fee for live support and other aol services. I tried to call them this week and could not get through. I will try again this week. If anyone gets clear information about what is going on, please share it here, I will do the same. Thanks, 18's Beth -Original Message- From: 'Susan' via CMLHope To: cmlhope Sent: Sat, Nov 25, 2017 3:15 pm Subject: Re: [CMLHope] Email change DG: I'm telling you this doesn't make any sense. Call them up and complain. We've had AOL since it first began service. Hugs, Susan Rosenthal On Nov 25, 2017, at 3:18 PM, Myvety2k via CMLHope wrote: It may be free but not my email as of the 15th of Dec. dg In a message dated 11/25/2017 2:40:36 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Greenie and others: AOL is freewhat are you guys talking about? We just pay $4.99 a month to receive live support. Hugs, Susan Rosenthal On Nov 25, 2017, at 2:31 PM, 'Jeanie' via CMLHope wrote: I saw that Greenie. Makes me mad. I paid years ago and could never find any company I liked better. They are still letting me use this email and you can use email free. I'll note that. Thanks. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Nov 25, 2017, at 7:38 AM, Myvety2k via CMLHope wrote: As of December 5th I will no longer be using AOL.They have gone up to $30.00 per month and Comcast is free for me so my new email address will be (myvet...@comcast.net) Thanks to everyone, David (greenie) Greenberg -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope"
Re: [CMLHope] Well wishes
So happy you are out of the hospital Marty!!! Yeah!!! And your soup sounds fabulous! Take good care, !8's Beth -Original Message- From: Joyce Mesnarich To: cmlhope Sent: Sun, Nov 26, 2017 5:31 pm Subject: Re: [CMLHope] Well wishes So glad that you are out of the hospital and in the comfort of your own home. Your mushroom, barley and meat soup sounds delicious. I would appreciate the recipe, if you are willing to share. I don’t have a pot that large, but could cut the recipe down. Always nice to have something on hand for a quick meal. Best wishes for your continued recovery. Joyce in Southern Illinois On Nov 26, 2017, at 2:40 PM, Marty Gartenberg wrote: Hi everyone, Just to let everyone know that I am back from the hospital as of yesterday afternoon. The infection is gone but i have to stay on oral antibiotics for the next two weeks, a small price to pay i guess. In the past several weeks i have heard so many others having to be hospitalized including some of my neighbors and friends. Can't figure out what is going on lately but hopefully this will not become any worse but better in the near future. So as it stands the only after after-effects i am suffering with are some vertigo and some small headaches but they are probably from the antibiotics. But when there is also something that comes down then there is always comes something that comes good as well. Unfortunately i missed our traditional Thanksgiving dinner but there is also a bright side. Just before i had to go into the hospital i was lucky enough to make my delicious mushroom and barley soup with meat cut up into small cubes and of course bone marrow soup bones. It was only just before i started feeling ill. I usually make about 10 or 12 quarts and freeze them for later use. This recipe was past down to me by my parents who were both master cooks in Europe. Now when i was in the hospital my wife brought me some of this soup and at least i was able to get away from this "hospital food" at least for the time being. If anyone wants the recipe then just let me know. So you can see that there is more then just sitting back and feeling miserable when you occupy yourself with things that make you more productive in your live. I do this all of the time and it seems to always help me. Hot soup anyone?🍜 18's, Marty On Sun, Nov 26, 2017 at 2:05 AM, Joyce Mesnarich wrote: Marty, so sorry to hear that you have been plunked down in the hospital. But you will beat those bad germs and be back out quickly. I am praying for you. God bless and keep you. Joyce in Southern Illinois On Nov 25, 2017, at 1:38 PM, 'Jeanie' via CMLHope wrote: So sorry Marty. Prayers are being sent with lots of love. You are the bravest and you will be home soon. How did you get the infection? Hope you get lots of good care. Sending you lots of love and holiday cheer 🎄🎄🎄 My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Nov 23, 2017, at 6:31 PM, Martin Gartenberg wrote: Hi everyone Unfortunately I am back in the hospital again I have a server infection in my left leg and I am on some Antibiotics now. I wish I could be home for the thanksgiving holiday but I just do whatever I have to do. Anyway I wish all of you a happy thanksgiving 18's Marty On November 23, 2017, at 2:49 PM, bkbarney via CMLHope wrote: Warmest regards to you Susan and have a lovely Thanksgiving holiday with your family..Laying low and cozy by the fire is lovely...I wish you better health and lots of joyful moments in the New Year ahead... Thanks for being here. Love to all on this Thankful holiday 18s Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Nov 22, 2017 4:43 pm Subject: RE: [CMLHope] Well wishes Happy Thanksgiving to all! I pray you all are well enough to enjoy the holidays. Ours will be quiet and cozy by the fire. Turkey on the menu. So glad I am part of this awesome and loving group. Just got my numbers back from bcr/abl. It showed .45. Last time was .26. Not doing badly but was shocked when doc asked me if I wanted to go off med. (History of strokes caused by med.) First time she's asked me that! She does not recommend it, so I'll stay on awhile longer and then let my body rest. Toxins build up and cause stress on my blood spots in brain. 18's and Happy Thanksgiving Much love, Susan Z. On Wednesday, November 22, 2017 Myvety2k via CMLHope wrote: CML group, As of Dec 5th I will no longer be using AOL. My new email will be changed to myvet...@comcast.net. greenie -- -- [CMLHope] A support group of http://cmlhope.com ---
Re: [CMLHope] Well wishes
Warmest regards to you Susan and have a lovely Thanksgiving holiday with your family..Laying low and cozy by the fire is lovely...I wish you better health and lots of joyful moments in the New Year ahead... Thanks for being here. Love to all on this Thankful holiday 18s Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Nov 22, 2017 4:43 pm Subject: RE: [CMLHope] Well wishes Happy Thanksgiving to all! I pray you all are well enough to enjoy the holidays. Ours will be quiet and cozy by the fire. Turkey on the menu. So glad I am part of this awesome and loving group. Just got my numbers back from bcr/abl. It showed .45. Last time was .26. Not doing badly but was shocked when doc asked me if I wanted to go off med. (History of strokes caused by med.) First time she's asked me that! She does not recommend it, so I'll stay on awhile longer and then let my body rest. Toxins build up and cause stress on my blood spots in brain. 18's and Happy Thanksgiving Much love, Susan Z. On Wednesday, November 22, 2017 Myvety2k via CMLHope wrote: CML group, As of Dec 5th I will no longer be using AOL. My new email will be changed to myvet...@comcast.net. greenie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Holiday Season!
Wonderful news Richard!!! I hope you and everyone here has a lovely Thanks giving and a very healthy and peaceful holiday season.. Love and 18's to all, Beth -Original Message- From: Richard H To: CMLHope Sent: Fri, Nov 17, 2017 11:15 pm Subject: [CMLHope] Holiday Season! I wish everyone a Happy Holiday season. I am currently just traveling along this slowly(HA!) getting older path. My CML is staying undetectable and by dropping Gleevec to 200mg per day has helped me reduce my Procrit shots to check on it every 2 weeks. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Please I need your help
Your the best Marty!!! Weird eh??? That's part of your charm!!! :) -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Nov 1, 2017 10:23 am Subject: Re: [CMLHope] Please I need your help Hi Beth, Yes I have already tried it, and even added a sweeter to it but it just was so tart and very bitter tasting that i couldn't use it any more I'm sure it must be me because ever since i had my BMT with all of the radiation and chemotherapy my taste buds are never the same. Come to think of it, one of the only things that taste the same is cherry Snapple. Even Bryers cherry vanilla ice cream. However since my wife won't buy that because of the sugar content i settle for Bryers cherry yougert with little chocolate chips in it... Yummy! So maybe you might think that i am weird, well i guess that i am, at least for the time being. 18's, Marty On Tue, Oct 31, 2017 at 11:19 PM, bkbarney via CMLHope wrote: Marty, I am talking about straight cranberry juice, knudsons organic 100% cranberry. no sugars, nothing but cranberries not from concentrate. you have to dilute it, it's tart, no sugar added...since you use one ounce with 8 to 10 ounces of water , it's only 1gram of sugar per drink..so it won't hurt the diabetes at all!!! Some people add stevia...I like it tart 18's and goodnight!! Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Oct 31, 2017 7:24 pm Subject: Re: [CMLHope] Please I need your help Wow, wow Beth, just look at you, and I have only one thing to say...👋 Well, maybe one more thing to say... Now i remember I had a kidney transplant and they don't want to screw around with that. And your right about drinking Cranberry juice and that is usually the only juice i drink, but ever so often i drink V-8 juice. I am diabetic so i try to use light cranberry juice.. Less sugar but not always depending on which brand i use. Read the labels on the side of the container but sometimes they are also full of cr=p (=a) 😀 18's Marty On Tue, Oct 31, 2017 at 7:15 PM, bkbarney via CMLHope wrote: Dear Jeannie, I have had the contrast dye with an MRI on three occasions.I have had many MRI"s without contrast. The gadolinium dye is most commonly used. It is different than contrast dye used in CT scans. I had no ill side effects from the dye personally. Just a taste of metallc when it was put in through the IV. I was told to drink lots of water and water diluted with straight cranberry juice, ( 8 oz water to 1 ox cranberry juice) to flush the dye through my kidneys and out of my system. So I drank a lot the next 24 hours. Especially right after the test. If you have significant kidney function issues be sure to raise this with your doc before the test. People are far less likely to have allergic reaction to this compound, as opposed to contrast dye used in Ct scans. Still, if you have lots of allergies, and are worried, they can prep you with benadryl and or prednizone to ensure no problems. Whatever your questions and concerns, voice them!!! MRI's are ordered with and without contrast all the time. It just depends on where and what they are looking for or trying to see, whether they can truly get a full view without the contrast. Depending upon the answers to the above questions, some times docs will feel like they can get a good enough look without the dye. Others will feel strongly that the MRI would be a waste if there was no contrast used. It depends on many factors. Please express your concerns to your doctors ahead of time. If you have a scheduled MRI with contrast and you go in and refuse contrast, they usually will not perform the MRI as that was not the test that was specifically ordered by the doc. So express your concerns and fears to your doc and get your questions answered before proceeding. Good luck my friend. Take good care 18's Beth Still looking Marty...I remember who you are talking about. I feel so frustrated because I have "chemo brain" pretty significantly and I just cannot pull names up ...but I am still trying!! B . -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Oct 31, 2017 5:19 pm Subject: Re: [CMLHope] Please I need your help Hi Marty I am having a mrcp next week. What a wonderful caring man you are. I will pray that you think of his name. Sometimes things just pop into our minds. Keep our prayer circle going amazing group. I was wondering if any of you have had the mrcp(mri) with the contrast dye. I don't want the dye but don't know if they will do it without it. Any ideas anyone? Thanks Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Cen
Re: [CMLHope] Please I need your help
Marty, I am talking about straight cranberry juice, knudsons organic 100% cranberry. no sugars, nothing but cranberries not from concentrate. you have to dilute it, it's tart, no sugar added...since you use one ounce with 8 to 10 ounces of water , it's only 1gram of sugar per drink..so it won't hurt the diabetes at all!!! Some people add stevia...I like it tart 18's and goodnight!! Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Oct 31, 2017 7:24 pm Subject: Re: [CMLHope] Please I need your help Wow, wow Beth, just look at you, and I have only one thing to say...👋 Well, maybe one more thing to say... Now i remember I had a kidney transplant and they don't want to screw around with that. And your right about drinking Cranberry juice and that is usually the only juice i drink, but ever so often i drink V-8 juice. I am diabetic so i try to use light cranberry juice.. Less sugar but not always depending on which brand i use. Read the labels on the side of the container but sometimes they are also full of cr=p (=a) 😀 18's Marty On Tue, Oct 31, 2017 at 7:15 PM, bkbarney via CMLHope wrote: Dear Jeannie, I have had the contrast dye with an MRI on three occasions.I have had many MRI"s without contrast. The gadolinium dye is most commonly used. It is different than contrast dye used in CT scans. I had no ill side effects from the dye personally. Just a taste of metallc when it was put in through the IV. I was told to drink lots of water and water diluted with straight cranberry juice, ( 8 oz water to 1 ox cranberry juice) to flush the dye through my kidneys and out of my system. So I drank a lot the next 24 hours. Especially right after the test. If you have significant kidney function issues be sure to raise this with your doc before the test. People are far less likely to have allergic reaction to this compound, as opposed to contrast dye used in Ct scans. Still, if you have lots of allergies, and are worried, they can prep you with benadryl and or prednizone to ensure no problems. Whatever your questions and concerns, voice them!!! MRI's are ordered with and without contrast all the time. It just depends on where and what they are looking for or trying to see, whether they can truly get a full view without the contrast. Depending upon the answers to the above questions, some times docs will feel like they can get a good enough look without the dye. Others will feel strongly that the MRI would be a waste if there was no contrast used. It depends on many factors. Please express your concerns to your doctors ahead of time. If you have a scheduled MRI with contrast and you go in and refuse contrast, they usually will not perform the MRI as that was not the test that was specifically ordered by the doc. So express your concerns and fears to your doc and get your questions answered before proceeding. Good luck my friend. Take good care 18's Beth Still looking Marty...I remember who you are talking about. I feel so frustrated because I have "chemo brain" pretty significantly and I just cannot pull names up ...but I am still trying!! B . -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Oct 31, 2017 5:19 pm Subject: Re: [CMLHope] Please I need your help Hi Marty I am having a mrcp next week. What a wonderful caring man you are. I will pray that you think of his name. Sometimes things just pop into our minds. Keep our prayer circle going amazing group. I was wondering if any of you have had the mrcp(mri) with the contrast dye. I don't want the dye but don't know if they will do it without it. Any ideas anyone? Thanks Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Oct 30, 2017, at 6:44 PM, Marty Gartenberg wrote: Hi Jeanie, Well this was about 20 years ago and at least 6 computers ago. Maybe someone else might be able to help. It is for a young man living in Israel who recently had a BMT not a stem cell transplant that is failing and i remembered about that procedure but can't find out anything new. As I said maybe someone can help save his life. 18's Marty On Mon, Oct 30, 2017 at 6:35 PM, 'Jeanie' via CMLHope wrote: So sorry Marty don't remember it at all. Would it be on any of our old messages. You can search them on line. Happy Holidays all. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Oct 30, 2017, at 6:51 AM, Marty Gartenberg wrote: You all know me, and i have to ask all of you a favor especially
Re: [CMLHope] Please I need your help
Dear Jeannie, I have had the contrast dye with an MRI on three occasions.I have had many MRI"s without contrast. The gadolinium dye is most commonly used. It is different than contrast dye used in CT scans. I had no ill side effects from the dye personally. Just a taste of metallc when it was put in through the IV. I was told to drink lots of water and water diluted with straight cranberry juice, ( 8 oz water to 1 ox cranberry juice) to flush the dye through my kidneys and out of my system. So I drank a lot the next 24 hours. Especially right after the test. If you have significant kidney function issues be sure to raise this with your doc before the test. People are far less likely to have allergic reaction to this compound, as opposed to contrast dye used in Ct scans. Still, if you have lots of allergies, and are worried, they can prep you with benadryl and or prednizone to ensure no problems. Whatever your questions and concerns, voice them!!! MRI's are ordered with and without contrast all the time. It just depends on where and what they are looking for or trying to see, whether they can truly get a full view without the contrast. Depending upon the answers to the above questions, some times docs will feel like they can get a good enough look without the dye. Others will feel strongly that the MRI would be a waste if there was no contrast used. It depends on many factors. Please express your concerns to your doctors ahead of time. If you have a scheduled MRI with contrast and you go in and refuse contrast, they usually will not perform the MRI as that was not the test that was specifically ordered by the doc. So express your concerns and fears to your doc and get your questions answered before proceeding. Good luck my friend. Take good care 18's Beth Still looking Marty...I remember who you are talking about. I feel so frustrated because I have "chemo brain" pretty significantly and I just cannot pull names up ...but I am still trying!! B . -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Oct 31, 2017 5:19 pm Subject: Re: [CMLHope] Please I need your help Hi Marty I am having a mrcp next week. What a wonderful caring man you are. I will pray that you think of his name. Sometimes things just pop into our minds. Keep our prayer circle going amazing group. I was wondering if any of you have had the mrcp(mri) with the contrast dye. I don't want the dye but don't know if they will do it without it. Any ideas anyone? Thanks Jeanie My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Oct 30, 2017, at 6:44 PM, Marty Gartenberg wrote: Hi Jeanie, Well this was about 20 years ago and at least 6 computers ago. Maybe someone else might be able to help. It is for a young man living in Israel who recently had a BMT not a stem cell transplant that is failing and i remembered about that procedure but can't find out anything new. As I said maybe someone can help save his life. 18's Marty On Mon, Oct 30, 2017 at 6:35 PM, 'Jeanie' via CMLHope wrote: So sorry Marty don't remember it at all. Would it be on any of our old messages. You can search them on line. Happy Holidays all. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Oct 30, 2017, at 6:51 AM, Marty Gartenberg wrote: You all know me, and i have to ask all of you a favor especially some of the "old timers" of this group, like Bobby Dole, Zavie's Zero Club member 840 or Susan Zimmerman and anyone that knew Zavie Miller going back about twenty years ago. I wish that Zavie were still alive but i know that he would have remembered. I know of a man that had a BMT recently and he was doing well because his HLA match was perfect and his BMT was an Allogeneic transplant. Yes, from what I understand this man may either be relapsing or rejecting his BMT. At the time of my "travels" i heard of a man who did have an Allogeneic transplant (BMT) and relapsed, however he was given from his original donor some of their Lymphocytes and he compleatly recovered. My dilemma is I just can't remember who he was. So please if anyone can remember then i kindly ask that if anyone does remember then please get in touch with me. Also please spread my request to anyone from any other groups. Thank you. 18's Marty, Zavie's Zero club member 1 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-
Re: [CMLHope] Please I need your help
I don't remember Marty, but I will look back in our past group conversations. If it's anything saved, I will forward it to you. Hope all is well with everyone. My BCR results came back stable! A blessing!!! Dr. Druker is referring me to a colleague of his that specializes in some of my side effect issues so I am very grateful! The new doc is hard to get into, so it will be a few months, but hopefully he can help me. Much love to everyone. Thanks. Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Oct 30, 2017 5:35 pm Subject: Re: [CMLHope] Please I need your help So sorry Marty don't remember it at all. Would it be on any of our old messages. You can search them on line. Happy Holidays all. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Oct 30, 2017, at 6:51 AM, Marty Gartenberg wrote: You all know me, and i have to ask all of you a favor especially some of the "old timers" of this group, like Bobby Dole, Zavie's Zero Club member 840 or Susan Zimmerman and anyone that knew Zavie Miller going back about twenty years ago. I wish that Zavie were still alive but i know that he would have remembered. I know of a man that had a BMT recently and he was doing well because his HLA match was perfect and his BMT was an Allogeneic transplant. Yes, from what I understand this man may either be relapsing or rejecting his BMT. At the time of my "travels" i heard of a man who did have an Allogeneic transplant (BMT) and relapsed, however he was given from his original donor some of their Lymphocytes and he compleatly recovered. My dilemma is I just can't remember who he was. So please if anyone can remember then i kindly ask that if anyone does remember then please get in touch with me. Also please spread my request to anyone from any other groups. Thank you. 18's Marty, Zavie's Zero club member 1 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Right hand numb
Thanks Marty! Baruch Hashem! 18/s Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Oct 3, 2017 7:44 am Subject: Re: [CMLHope] Right hand numb Beth, 👍👋 18's, Marty On Mon, Oct 2, 2017 at 11:34 PM, bkbarney via CMLHope wrote: Good luck with your blood work Jeannie. Getting the MRI before you see your doc so he can go over any results he has with you makes sense. I have no idea about the nurse practitioner appt. But I would encourage you to always inquire about it If you are not comfortable, talk with them. My blood work was good. BCR undetectable. CPK still very high and now hypothyroid...so will adjust meds accordingly. But great news about sprycel continuing to help me! Love you all 18s Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Oct 2, 2017 2:52 pm Subject: Re: [CMLHope] Right hand numb Thanks Beth and yes thinks it's pinched nerve. I read in bed and prop up on pillows. Need to change positions. Hope every thing is good. Going Wednesday to get my blood done. Something happened to me at Moffitt that has never happened before. Moffitt called and wants me to meet with his nurse practitioner in stead of him. I've been going to Moffitt for about 8 years. Also he's having me do the mrui the week before because he wanted to discuss my side pain. Just wondering. Thanks. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 27, 2017, at 11:18 PM, bkbarney via CMLHope wrote: Jeannie, Do you wake up with this every day after sleeping? Does it lessen any time during the day, or get more intense? My first thought is that what other's have said, it could be a pinched nerve that when you lay a certain way, it impinges and causes pain. The nerve pain can move to include the hand as a whole. This could be coming off of your neck, a cervical or perhaps a shoulder issue. I am not a doctor so I have no idea, but those are my thoughts. Hope everyone is well. I went to U of C this morning to get my test results. They were not back. My doc was rather upset at the lab for taking so long..so I will share when I know more. Love to all, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Sep 27, 2017 8:57 am Subject: RE: [CMLHope] Right hand numb Sorry Jeanie, I have numbness in left side due to a stroke but never what you are describing. Hope somebody else can help! Meanwhile you are in my thoughts and prayers, as is everybody else in our group! 18's, Susan Z. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Wednesday, September 27, 2017 'Jeanie' via CMLHope wrote: Hi all I've been having anew side effect from something and was wondering if anyone else has it too. I wake up with my right hand hurting real bad-being numb and especially painful in pinkie finger. Now the whole hand hurts. Any ideas? My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com
Re: [CMLHope] Right hand numb
Good luck with your blood work Jeannie. Getting the MRI before you see your doc so he can go over any results he has with you makes sense. I have no idea about the nurse practitioner appt. But I would encourage you to always inquire about it If you are not comfortable, talk with them. My blood work was good. BCR undetectable. CPK still very high and now hypothyroid...so will adjust meds accordingly. But great news about sprycel continuing to help me! Love you all 18s Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Oct 2, 2017 2:52 pm Subject: Re: [CMLHope] Right hand numb Thanks Beth and yes thinks it's pinched nerve. I read in bed and prop up on pillows. Need to change positions. Hope every thing is good. Going Wednesday to get my blood done. Something happened to me at Moffitt that has never happened before. Moffitt called and wants me to meet with his nurse practitioner in stead of him. I've been going to Moffitt for about 8 years. Also he's having me do the mrui the week before because he wanted to discuss my side pain. Just wondering. Thanks. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 27, 2017, at 11:18 PM, bkbarney via CMLHope wrote: Jeannie, Do you wake up with this every day after sleeping? Does it lessen any time during the day, or get more intense? My first thought is that what other's have said, it could be a pinched nerve that when you lay a certain way, it impinges and causes pain. The nerve pain can move to include the hand as a whole. This could be coming off of your neck, a cervical or perhaps a shoulder issue. I am not a doctor so I have no idea, but those are my thoughts. Hope everyone is well. I went to U of C this morning to get my test results. They were not back. My doc was rather upset at the lab for taking so long..so I will share when I know more. Love to all, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Sep 27, 2017 8:57 am Subject: RE: [CMLHope] Right hand numb Sorry Jeanie, I have numbness in left side due to a stroke but never what you are describing. Hope somebody else can help! Meanwhile you are in my thoughts and prayers, as is everybody else in our group! 18's, Susan Z. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Wednesday, September 27, 2017 'Jeanie' via CMLHope wrote: Hi all I've been having anew side effect from something and was wondering if anyone else has it too. I wake up with my right hand hurting real bad-being numb and especially painful in pinkie finger. Now the whole hand hurts. Any ideas? My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com Fo
Re: [CMLHope] Right hand numb
Jeannie, Do you wake up with this every day after sleeping? Does it lessen any time during the day, or get more intense? My first thought is that what other's have said, it could be a pinched nerve that when you lay a certain way, it impinges and causes pain. The nerve pain can move to include the hand as a whole. This could be coming off of your neck, a cervical or perhaps a shoulder issue. I am not a doctor so I have no idea, but those are my thoughts. Hope everyone is well. I went to U of C this morning to get my test results. They were not back. My doc was rather upset at the lab for taking so long..so I will share when I know more. Love to all, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Sep 27, 2017 8:57 am Subject: RE: [CMLHope] Right hand numb Sorry Jeanie, I have numbness in left side due to a stroke but never what you are describing. Hope somebody else can help! Meanwhile you are in my thoughts and prayers, as is everybody else in our group! 18's, Susan Z. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Wednesday, September 27, 2017 'Jeanie' via CMLHope wrote: Hi all I've been having anew side effect from something and was wondering if anyone else has it too. I wake up with my right hand hurting real bad-being numb and especially painful in pinkie finger. Now the whole hand hurts. Any ideas? My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] A picture of me, my sister and my brother
Dear Susan, Thank you for your kind words and honest post. Sometimes we just need to exhale and complain a bit...and then move forward and carry on the best we can. Please use the pain meds as needed so your back pain is controlled. Chronic pain of any kind is miserable. If you can lessen it, it can affect your whole outlook and quality of life. Sorry to hear about the bowels and needing to stay home. Wish that could be better controlled as well ..so glad you have a loving spouse and a strong faith to sustain you. When things pile up, sometimes we just need to hallow ourselves to have a pity party for a few minutes...and then...go do something that brings you perspective, makes you belly laugh, or connects you to beauty, or to those you love Today is a catch up day for me. email, and work stuff, laundry, groceries, Walgreens...it's supposed to thunderstorm later so going to leave now and try and get the errands done. May all of you have a lovely Sunday. Talk soon. 18's and love to all, Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Sat, Sep 16, 2017 10:52 am Subject: Re: [CMLHope] A picture of me, my sister and my brother Dear sweet Beth, Accepting you back? Good grief, this group seeks to do the opposite of alienateyou are such a great contributor! If any of us are too sick to post it is totally understandable! I am glad you are able to travel to Dr. Druker. He is amazing. You are, too! My own issues seem to have magnified lately. The essential tremors are quite bad and can be embarrassing. My numbers for pcr went up a little last month. Pain in lower back has necessitated pain pills off and on which is upsetting if I look at it that way. Should be glad for some relief. Can't go out as often now due to problems w bowel. Just not worth it when certain things occur. I never have written all of this down before. Thank God I do pretty well staying in alot. My wonderful husband makes it so much better for me. Please don't take this as complaining. I am happy and thankful for all my blessings, which are many!!! Beth, I so admire you for the courageous way you fight your battles! Praying for you all every day. He still answers prayer for sure. Make it a great day! Much love and 18's, Susan Z. On Friday, September 15, 2017 bkbarney via CMLHope wrote: What a sweet picture Marty. Yep, definitely a resemblance. But as adults. I showed a friend of mine your picture and asked him: "Who is this?" And without hesitation he said. "Ron silly" . Nice to banter about sweet things. I am doing my blood work on Monday finally. It got postponed twice, but now it's here..so should know something in the next two weeks. They are doikng lots of blood work because I have just felt rather crappy. But hopefully things will pick up soon! Seeing Dr. Druker in a few weeks. Always makes me feel better. Sadly, my ritual whenever I go there, is to go and look out at the Gorge, and the area that has burned in the last week. Between Houston and Florida, aoll the Islands affected...it's been such a terrible time for natural disasters.. so I am counting my blessings.. Thank you all for accepting me back even when I had too much going on to be writing earlier in the year. It feels good to reconnect. We all do our best...so often I wish I could do more...Chemo takes away half the energy I used to have...I am still trying to figure out pacing. I imagine others feel similarly. !8's. Beth -Original Message- From: Marty Gartenberg To: CMLHope Sent: Thu, Sep 14, 2017 10:36 pm Subject: [CMLHope] A picture of me, my sister and my brother Tell me something Beth, when your friend was a little boy did he also look like me? 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://group
Re: [CMLHope] Words OF WISDOM.
Greenie, So glad you had no damage. My friend in Fort Myers, her home is uninhabitable.It's terrible! So relieved for both of you! Take care, 18's Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Sat, Sep 16, 2017 2:23 pm Subject: Re: [CMLHope] Words OF WISDOM. Sounds like a plan. greenie In a message dated 9/16/2017 11:00:36 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hi Greenie, so glad all is ok regarding your house. Maybe next time you are up you will come for dinner. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Saturday, September 16, 2017 Myvety2k via CMLHope wrote: Hi Susan, We only stayed 2 days because be found out that our electric was out less then 24 hours so we handed home to see if we had a house and it was in One Piece. No damage, very Lucky not so for many people. greenie In a message dated 9/8/2017 4:04:11 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, So glad you are coming to visit! If you want to come over and visit our underground earth home, let us know!!! Would love to see you and Grace. We are in Granger. Susan and Roy Zimmerman On Friday, September 8, 2017 myvety2k via CMLHope wrote: Hi all, Grace and I are getting out of dodge. We are heading for Indiana to stay with family. After this is over I hope we have a home in Fort Myers to live in. And my pure Corvette I hope it's still their. Stay safe. greenie In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, wa2...@gmail..com writes: Hi Marcie, Glad that you found my story interesting. I live in Boynton Beach about 90 miles north of Miami. 18's, Marty On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope wrote: Marty, Such a beautiful story which brought me to tears. Thanks, as always, for sharing. By the way, you aren't in Miami now are you? Marcie Sent from my iPad On Sep 7, 2017, at 9:11 PM, Marty Gartenberg wrote: Joyce, Jeanie and everyone here, I learned something a very long time ago. If you or someone else looks out of a window then it is what they see that can make a big difference in their lives. I wrote this story a very long time ago and i always remembered it. It wasn't necessarily what this person would see but it was something that was explained to make "someone" happy for what they were able to "see" Now over the years that followed i have seen this plagiarized and it really hurt me, but i assure you that i am it's original author. There are many details in it that i personally went through. The Window There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die. One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window. The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park. He would tell about the green grass and the people who were having a picnic, and the dogs that were running around, as well as the ice cream truck with the man selling ice cream pops to the little children, and the hot dog vendor also selling hot dogs with mustard and sour kraut. He would tell the other man that he would be able to see all of this for himself once he was healed. This went on for about two weeks, and one morning the nurse came into the room as she usually did, and presented these two men with their sponge baths. She first went over to the man who was by the window to find that he had passed away in his sleep. She then covered him up and left the room for a couple of minutes. When she returned, there was a doctor with her. This was a fairly new you
Re: [CMLHope] Me or the icon?
:) -Original Message- From: Marty Gartenberg To: CMLHope Sent: Thu, Sep 14, 2017 10:32 pm Subject: [CMLHope] Me or the icon? Love you Beth🌷By the way Beth are you talking about me or the icon? 18's Sweetheart Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] A picture of me, my sister and my brother
What a sweet picture Marty. Yep, definitely a resemblance. But as adults. I showed a friend of mine your picture and asked him: "Who is this?" And without hesitation he said. "Ron silly" . Nice to banter about sweet things. I am doing my blood work on Monday finally. It got postponed twice, but now it's here..so should know something in the next two weeks. They are doikng lots of blood work because I have just felt rather crappy. But hopefully things will pick up soon! Seeing Dr. Druker in a few weeks. Always makes me feel better. Sadly, my ritual whenever I go there, is to go and look out at the Gorge, and the area that has burned in the last week. Between Houston and Florida, aoll the Islands affected...it's been such a terrible time for natural disasters.. so I am counting my blessings.. Thank you all for accepting me back even when I had too much going on to be writing earlier in the year. It feels good to reconnect. We all do our best...so often I wish I could do more...Chemo takes away half the energy I used to have...I am still trying to figure out pacing. I imagine others feel similarly. !8's. Beth -Original Message- From: Marty Gartenberg To: CMLHope Sent: Thu, Sep 14, 2017 10:36 pm Subject: [CMLHope] A picture of me, my sister and my brother Tell me something Beth, when your friend was a little boy did he also look like me? 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] A butterfly's lesson
Marty I could not open this. Could you put it in the body of an email? Thanks. 18's Beth -Original Message- From: Marty Gartenberg To: undisclosed-recipients:; Sent: Wed, Sep 13, 2017 8:45 pm Subject: [CMLHope] A butterfly's lesson Things happen for a reason, and it's for us to listen. I hope this brings joy into your life as it did for me. Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Words OF WISDOM.
Greenie, I am behind in emails so I just read this. I am very relieved to hear that you and Grace are in Indiana. I am thinking of youhope your home and car will be in good shape when you return. Fingers crossed. Sending love and prayers to you and to everyone else out there who is being or might be directly affected by Irma... Warmest regards, and 18's. Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Sep 8, 2017 10:35 pm Subject: Re: Re: [CMLHope] Words OF WISDOM. Richard, Yes your son only lives less then an hour away from me, and i know the area very well because that is where i got my kidney transplant in The Cleveland Clinic. Praying for him and everyone else. 18's, Marty On Fri, Sep 8, 2017 at 11:28 PM, Richard H wrote: Marti, my son lives in Weston, FL and is hunkerd down also.. I was surprised you are so close to him. He works for the Boy Scouts so he "is prepared". On Friday, September 8, 2017 at 1:50:41 PM UTC-5, wa2yyx wrote: Hi Greenie, Go West young man, go West... May i ask you what is a pure Corvette? And can you still get into it comfortably? Last time i tried to get into a vet I had a lot of difficulty. I am 6' + I guess that you must be some ware in Florida as i am also in Boynton Beach all hunkered down. 18's, Marty On Fri, Sep 8, 2017 at 9:39 AM, myvety2k via CMLHope wrote: Hi all, Grace and I are getting out of dodge. We are heading for Indiana to stay with family. After this is over I hope we have a home in Fort Myers to live in. And my pure Corvette I hope it's still their. Stay safe. greenie In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, wa2...@gmail..com writes: Hi Marcie, Glad that you found my story interesting. I live in Boynton Beach about 90 miles north of Miami. 18's, Marty On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope wrote: Marty, Such a beautiful story which brought me to tears. Thanks, as always, for sharing. By the way, you aren't in Miami now are you? Marcie Sent from my iPad On Sep 7, 2017, at 9:11 PM, Marty Gartenberg wrote: Joyce, Jeanie and everyone here, I learned something a very long time ago. If you or someone else looks out of a window then it is what they see that can make a big difference in their lives. I wrote this story a very long time ago and i always remembered it. It wasn't necessarily what this person would see but it was something that was explained to make "someone" happy for what they were able to "see" Now over the years that followed i have seen this plagiarized and it really hurt me, but i assure you that i am it's original author. There are many details in it that i personally went through. The Window There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die. One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window. The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park. He would tell about the green grass and the people who were having a picnic, and the dogs that were running around, as well as the ice cream truck with the man selling ice cream pops to the little children, and the hot dog vendor also selling hot dogs with mustard and sour kraut. He would tell the other man that he would be able to see all of this for himself once he was healed. This went on for about two weeks, and one morning the nurse came into the room as she usually did, and presented these two men with their sponge baths. She first went over to the man who was by the window to find that he had passed away in his sleep. She then covered him up and left the room for a couple of minutes. When she returned, there was a doctor with her. This was a fairly new young doctor who would pronounce the man dead, and at that particular time, 8:40 a.m. even though he had obviously passed away some time during the night. The other man across the room with tears running down his cheeks became quite depressed at seeing his roommate wheeled out of the room, declared dead. He thought about how this man would always try to make him happy with him describing all of the nice things he was able to see outside. Later on that day the nurse returned and made up the bed in the room that was now unoccupied. The man in the other bed asked if by any chance he would be able to be put by the window. The nurse was a very kind and compassionate woman besides being a very co
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 5 updates in 1 topic
Thinking about you Marty, and your sweet wife and everyone in Florida being hit right now. I assume you cannot see this because of power outages but I wanted you to know that all of us are with you...my heart goes out to you... 18''s Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Sep 10, 2017 10:04 am Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 5 updates in 1 topic Dear all I'm an old hurricane survivor. Let's pray God keeps his Angels surrounding us. 🐝safe My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 9, 2017, at 9:25 PM, Marty Gartenberg wrote: Shelia, we didn't leave. Hear what's happening now... At 8:17 a tornado hit my area but not directly around my house. It caused all power in my area to black out. Then within 28 minutes it suddenly turned back on and everyone in my community has power restored. Got to hand to Florida power and light... Since the tornado is just beginning and later on Sunday morning the hurricane should be upon us. However the "good news" is that it had turned to the North West and the West coast of Florida should get the brunt of it around such as Ft. Meyers and Northward.. After it's finished with Florida it will head directly to Atlanta Georgia and North. Now that doesn't necessary mean that we are out of the woods because this Hurricane is the size of Texas and it will probably engulf both the West and East coasts of the Sunshine State but as i mentioned the center is located on the West coast, and that should be sometime early Sunday morning. Lets hope for the best. So far we still have power but it will probably go out again sometime this morning. I will try to keep everyone notified if I can. Please be safe everyone. 18's, Marty Marty On Sat, Sep 9, 2017 at 9:12 PM, Sheila Watson wrote: Marty, I am glad to hear that. I was worrying over ya'll earlier today. My brother is still in Hudson (up above Tampa about 30 or 40 miles. I worry about him, but he is suppose to be going to a friend's home that is safer than his doublewide. Glad ya'll left. SuzieQ On Sat, Sep 9, 2017 at 5:15 AM, wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics Words OF WISDOM. - 5 Updates Words OF WISDOM. myvet...@aol.com: Sep 08 09:39AM -0400 Hi all, Grace and I are getting out of dodge. We are heading for Indiana to stay with family. After this is over I hope we have a home in Fort Myers to live in. And my pure Corvette I hope it's still their. Stay safe. greenie In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, wa2...@gmail..com writes: Hi Marcie, Glad that you found my story interesting. I live in Boynton Beach about 90 miles north of Miami. 18's, Marty On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope wrote: Marty, Such a beautiful story which brought me to tears. Thanks, as always, for sharing. By the way, you aren't in Miami now are you? Marcie Sent from my iPad On Sep 7, 2017, at 9:11 PM, Marty Gartenberg wrote: Joyce, Jeanie and everyone here, I learned something a very long time ago. If you or someone else looks out of a window then it is what they see that can make a big difference in their lives. I wrote this story a very long time ago and i always remembered it. It wasn't necessarily what this person would see but it was something that was explained to make "someone" happy for what they were able to "see" Now over the years that followed i have seen this plagiarized and it really hurt me, but i assure you that i am it's original author. There are many details in it that i personally went through. The Window There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die. One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window. The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park. He would tell about the green grass and the people who were having
Re: [CMLHope] Greetings from the land of Harvey
Dear Norm, Thanks for your post. And to Greenie and your wife in Fort Myers. I hope you both are safe, and to everyone else who is in Houston, or Florida or wherever this storm passes through Just know that lots of people are thinking about you and praying for you. I know I am. These natural disasters are and can be so devastating. Then, if you are medically fragile or ill etc.unable to be moved, it is even more traumatic. Thinking of all my cml buddies here and sending you love. 18's Beth -Original Message- From: Norm To: CMLHope Sent: Sun, Sep 10, 2017 9:30 am Subject: [CMLHope] Greetings from the land of Harvey I do not get to post often but wanted to wish all of the group the best and to check on Jeanie and the rest of the Floridians. We did not flood at my home or office but there are still areas that are not accessible because of flood waters. You would think that the flood waters would be gone by now but the reality is that we had 40" of rain as measured at our rain gunge and some areas had much more. There was very little wind damage here in Houston but I now have a much better understanding of the 40 days and 40 nights that Noah experienced. We have two lakes that supply our drinking water, Lake Conroe which is upstream from the second which is Lake Houston. Lake Conroe is north of Houston and Lake Houston is northeast of Houston. There are two flood control dams, Addicks and Barker Cypress that are to the West of Houston. Much of the worst flooding was caused by the release of water from the dams at Lake Conroe, Addicks, and Barker Cypress. People that had never flooded ever, flooded. Addicks and Barker Cypress was within about a foot of being over-topped. They had no choice but to release the water. Some talking heads have criticized our mayor for not evacuating people but historically more people have died from being in their vehicles than from being at home during a flood. A comparison would be to evacuate the whole state of Florida that would be concentrated in our metropolitan area. He did the correct thing. People that live in areas that are known to flood generally will self evacuate after putting as much of their belongings out of harms way. Unfortunately for many the floods were so much worse than ever before. You are all in my prayers. Houston strong Norm -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] 3 months off Gleevec
Great news Susan. I too have attempted going off several times, but numbers creep up...Will discuss the possibility of riding it out for a bit longer time off, the next time I go off for a holiday and see if this is an option for me. I know it does not work for everyone, but am very grateful it works for many people I think more than half who try succeed. The good news is that it seems if your numbers do go up and you go back on your meds, things usually return to status quo without issue. I have been on sprycel now for 7 years. Hard to believe it's been that long! Take good care! Love to all. 18's Beth -Original Message- From: Tony Lanoue To: cmlhope Sent: Sun, Sep 3, 2017 12:39 pm Subject: Re: [CMLHope] 3 months off Gleevec That's great Susan, maybe I gave up too soon! That's good to know when I try going off Sprycel if my numbers come up a little bit I will try to ride it out and see if they start coming back down, thanks so much for the info! Sent from my iPhone On Sep 3, 2017, at 11:38 AM, 'Susan Rosenthal' via CMLHope wrote: Tony: This Oct. 2, 2017, I will have been off Gleevec for two years. So far, I've remained undetectable-had on blip February 2015, but Dr. Druker assured me that happens about 4 months out and that the next month would show undetectable again. Been undetectable since just like he said😀 Had my last PCR test in June at his office. I live in Miami and will be getting another PCR test this month! Keeping fingers crossed! Hugs, Susan Rosenthal On Sep 2, 2017, at 11:45 PM, Tony Lanoue wrote: I just read last week on one of the Facebook groups that somebody has been off Gleevec for two years now and their counter remain stable. I am your other hand tried going off last year and my counts started coming back up. So this year I switched to Sprycel, going to stay on the Sprycel for one year then try to discontinue use. The studies show that people are having more success staying in remission after being on Sprycel. But like I said before some people are having success after being treated with Gleevec also! Sent from my iPhone On Sep 2, 2017, at 8:30 PM, Marty Gartenberg wrote: Do you see just what the meaning of 18's is... Well all that counts is that your finally off of Gleevec. GOOD FOR YOU 18's, Marty On Sat, Sep 2, 2017 at 3:58 PM, nycotb176 wrote: Going on 16 yrs on 400 gm of Gleevec, when I was diagnosed with sclerosis of the Liver. My Oncologist at Moffitt Cancer Center lowered my dosage to 200. After a year, I was still in remission.No Philadelphia Bug found in the last 15 yrs. Six months ago I was told I may be a candidate for a clinical trial for individuals like me. I had to go thru a list of questions and when I was done I was told the trial had closed. I decided to take my self of the Gleevec and spoke to my oncologist and he told me that he felt I may be CURED (Which I don't like that word) Well its been 3 months so far and no changes. Looking forward to the future. I was also told I would have to be off Gleevec for two years before they would be able to tell me the good news. Has anyone else tried to go off Gleevec -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email tocmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email tocmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at ht
Re: [CMLHope] Aug CML update.
Thanks for sharing such good news Richard. I am very very happy for you, No news here.. going next week for testing. will share results when I have them. Hope everyone is hanging in there and feeling good. Warm regards' 18's Beth -Original Message- From: Richard H To: CMLHope Sent: Mon, Aug 28, 2017 10:22 pm Subject: [CMLHope] Aug CML update. Just received my latest BCR-ABL report. Shall we rejoice with no fusions detected As I thank my God every morning for another day, I am settling in using 200mg Gleevec and have not had to take a procrit to build my anemia for weeks at a time 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Gleevec
Oh my gosh Marty, Unbelievable. I am so sorry you fell... but glad you have Shelly and she has you. Glad you are in rehab..two weeks to go..hopefully you will be home safe and sound soon. And the same exact place your wife fell 15 years ago. Quite a coincidence. Please take good care. Prayers and hugs, !8's and love, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Thu, Aug 10, 2017 6:10 pm Subject: Re: [CMLHope] Gleevec You see something Susan,It's this site that makes a real difference because we seem to care for each other. Yes i fell from a defective threshold in the homeowners office. the same one that Shelly fell on 15 years ago but than she didn't injure herself. And the fractures are in my knee and in the tibia. All of you already know how i love and care about you. 18's, Marty On Thu, Aug 10, 2017 at 5:38 PM, 'Susan Zimmerman' via CMLHope wrote: So sorry Marty has been in hospital and now rehab. A broken knee and tibia? Maybe you fell again? Sounds like things are looking up regarding release from rehab and selling your house. God bless you for keeping a positive attitude. We all love you, Marty. Tell Shelly we are praying for her, too! You know it will work out. Main thing is to enjoy every day, even if you are in rehab. Muuuwwwh! Hugs and kisses. 18'S, Susan Z. On Thursday, August 10, 2017 Myvety2k via CMLHope wrote: Marty, glad to here your doing O. K. greenie In a message dated 8/10/2017 11:36:53 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Beth and everyone First glad no dialysis. Been there and done all of that. I have been in the hospital for two weeks due to a broken knee and a tibia finally in rehab now for the past three weeks with two weeks left. I am now in PA because we are trying to sell our house up here. I feel sorry for my wife Shelly because all of this in on her now. but she is a very strong woman. On Oct 21 we will be leaving the rehab felicity go back to our houseand stay there for about a week and drive back to Florida with my wife and son who will share the driving. Our daughter Meredith will be flying back to Florida.just before we leave PA. Anyway i have been reading all of your posts so i basically know what is going on. Please say hello to everyone for me. 18's, Marty On Wed, Aug 9, 2017 at 11:48 PM, bkbarney via CMLHope wrote: Thanks Susan, No dialysis. Just navigating muscle deterioration at an accelerated rate which makes it hard to move, let alone exercise...just a significant rough patch, but trying to navigate it the best I can. I had little to give anyone for a while, but feel better able to be a contributing part of our community again. I know many do not write, but feel less alone just reading..I just became one of those people for a time.. I will try to be better about speaking up when I am struggling. Love to all, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: rbhuffman1 ; cmlhope Sent: Wed, Aug 9, 2017 6:38 pm Subject: Re: [CMLHope] Gleevec Beth, my heart goes out to you from all you've gone through since last September. You have always been a great encourager to all of us. I am sure I speak for all in saying we missed you tremendously and hope you will have no more setbacks. Obviously those kidneys are so important to function properly. I hope you've not had to go on dialysis? Hoping and believing you continue to get better. You are so right about Dr. Druker and glad you are going to see him. Hang in there, we really really love you! Richard, trying hard not to preach! Prayers, though! 18's, xoxo Susan Z. On Tuesday, August 8, 2017 Richard H wrote: Thanks for the update. I hope all keeps going well. No preaching today, you are under control and I hope you continue to get better. Richard H. On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote: Dear Susan, Jeanie, Marty, Richard, Greenie et all, So sorry I have not been communicative for a long while. I am coming up after a really hard year physically and with many losses...sifting through 6000 emails...I realize how much I have missed just our groups banter, and love Hope each one of you is enjoying moments of sunshine...and holding on to the love that is in our group. I rely so often on the stories of others to inspire me, give me perspective...to hold hope for a better tomorrow and to stand tall in the belief that "This too shall pass" as my dad used to say...when things
Re: [CMLHope] Gleevec
Thanks Susan, No dialysis. Just navigating muscle deterioration at an accelerated rate which makes it hard to move, let alone exercise...just a significant rough patch, but trying to navigate it the best I can. I had little to give anyone for a while, but feel better able to be a contributing part of our community again. I know many do not write, but feel less alone just reading..I just became one of those people for a time.. I will try to be better about speaking up when I am struggling. Love to all, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: rbhuffman1 ; cmlhope Sent: Wed, Aug 9, 2017 6:38 pm Subject: Re: [CMLHope] Gleevec Beth, my heart goes out to you from all you've gone through since last September. You have always been a great encourager to all of us. I am sure I speak for all in saying we missed you tremendously and hope you will have no more setbacks. Obviously those kidneys are so important to function properly. I hope you've not had to go on dialysis? Hoping and believing you continue to get better. You are so right about Dr. Druker and glad you are going to see him. Hang in there, we really really love you! Richard, trying hard not to preach! Prayers, though! 18's, xoxo Susan Z. On Tuesday, August 8, 2017 Richard H wrote: Thanks for the update. I hope all keeps going well. No preaching today, you are under control and I hope you continue to get better. Richard H. On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote: Dear Susan, Jeanie, Marty, Richard, Greenie et all, So sorry I have not been communicative for a long while. I am coming up after a really hard year physically and with many losses...sifting through 6000 emails...I realize how much I have missed just our groups banter, and love Hope each one of you is enjoying moments of sunshine...and holding on to the love that is in our group. I rely so often on the stories of others to inspire me, give me perspective...to hold hope for a better tomorrow and to stand tall in the belief that "This too shall pass" as my dad used to say...when things were really bad.. I had a rough year starting last September with heart issues, then got worse in December...and stayed struggling through the spring...starting to feel a bit strongerstill vulnerable, but fighting spirit is back...and I am here...to see the hummingbirds out my window...flox is in full bloom75 degrees and sunny today.so life is good for now...later today seeing the cardiologist to swap medicines...then oncologist Friday. CPK stil supper high so muscle continues to waste..I hardly recognize myself and its affected my kidneys..all the protein going through them...Will get blood work done in a couple of weeks at U of C...last test in June had cancer showing...at low levels...had to go off for a drug holiday because of toxicity...so only back on for three weeks. We shall see how I am doingI am seeing Dr. Druker in October...he always makes me feel hopeful and calmhe has a way about him that invites this...and for which I am always so grateful.. I know each of you has had your strugglesphysically and emotionally...I think of you often and pray for each of you every nightGreenie, especially you and your wife,this first year of grieving Derek...your anniversary.so hard to bare...I m holding 7 clients who have lost adult children in my practice. I brought them together in a group to so they could meet one another and share their stories, introduce their children and share their grief. I thought of you and wondered if something like that might be helpful to you..I know there are many supports in your area through local hospices and I think Health Park...God willing I will be down by you in December as I was supposed to be last year before everything erupted.. Hope to one day give you a big hug. and to the rest of you..love, hugs and 18'sit feels good to write something... Beth -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com
Re: [CMLHope] Gleevec
Thanks Richard. You can preach whenever you want. :) Beth. -Original Message- From: Richard H To: CMLHope Sent: Tue, Aug 8, 2017 10:30 pm Subject: Re: [CMLHope] Gleevec Thanks for the update. I hope all keeps going well. No preaching today, you are under control and I hope you continue to get better. Richard H. On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote: Dear Susan, Jeanie, Marty, Richard, Greenie et all, So sorry I have not been communicative for a long while. I am coming up after a really hard year physically and with many losses...sifting through 6000 emails...I realize how much I have missed just our groups banter, and love Hope each one of you is enjoying moments of sunshine...and holding on to the love that is in our group. I rely so often on the stories of others to inspire me, give me perspective...to hold hope for a better tomorrow and to stand tall in the belief that "This too shall pass" as my dad used to say...when things were really bad.. I had a rough year starting last September with heart issues, then got worse in December...and stayed struggling through the spring...starting to feel a bit strongerstill vulnerable, but fighting spirit is back...and I am here...to see the hummingbirds out my window...flox is in full bloom75 degrees and sunny today.so life is good for now...later today seeing the cardiologist to swap medicines...then oncologist Friday. CPK stil supper high so muscle continues to waste..I hardly recognize myself and its affected my kidneys..all the protein going through them...Will get blood work done in a couple of weeks at U of C...last test in June had cancer showing...at low levels...had to go off for a drug holiday because of toxicity...so only back on for three weeks. We shall see how I am doingI am seeing Dr. Druker in October...he always makes me feel hopeful and calmhe has a way about him that invites this...and for which I am always so grateful.. I know each of you has had your strugglesphysically and emotionally...I think of you often and pray for each of you every nightGreenie, especially you and your wife,this first year of grieving Derek...your anniversary.so hard to bare...I m holding 7 clients who have lost adult children in my practice. I brought them together in a group to so they could meet one another and share their stories, introduce their children and share their grief. I thought of you and wondered if something like that might be helpful to you..I know there are many supports in your area through local hospices and I think Health Park...God willing I will be down by you in December as I was supposed to be last year before everything erupted.. Hope to one day give you a big hug. and to the rest of you..love, hugs and 18'sit feels good to write something... Beth -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Gleevec
Dear Jeanie, That pain in your side sure is miserable. ERCP to take a look might be helpful...I do understand the stress of ore tests...and that "what if they find something" that looms...but better to know what you are dealing with if possible..because at least you have some clarity and then can decide how you want to proceed. Your heart beat down 40?? Do you know what that is about??? Jeanie you have been through so much...yet your spirit, your faith "and pills" :) keep you going...let us know what happens with the ERCP. It doesn't hurt...twilight medsthat's it. Take good care.. love you all, 18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Wed, Aug 9, 2017 10:01 am Subject: Re: [CMLHope] Gleevec Hi Beth I have really missed your uplifts but knew you were going through some trials and tribulations. My heartbeat is down to 40 and sometimes lower but not too concerned yet. I had a three day stay in hospital to see if they could find out the source of the pain in my side. No luck. No my onc wants to try mrcp where they take a closer look at pancreas and ect. Then if they find something you wonder if you want to do something else. Hang in there Beth. Each day at a time. ❤️ My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Aug 8, 2017, at 11:30 PM, Richard H wrote: Thanks for the update. I hope all keeps going well. No preaching today, you are under control and I hope you continue to get better. Richard H. On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote: Dear Susan, Jeanie, Marty, Richard, Greenie et all, So sorry I have not been communicative for a long while. I am coming up after a really hard year physically and with many losses...sifting through 6000 emails...I realize how much I have missed just our groups banter, and love Hope each one of you is enjoying moments of sunshine...and holding on to the love that is in our group. I rely so often on the stories of others to inspire me, give me perspective...to hold hope for a better tomorrow and to stand tall in the belief that "This too shall pass" as my dad used to say...when things were really bad.. I had a rough year starting last September with heart issues, then got worse in December...and stayed struggling through the spring...starting to feel a bit strongerstill vulnerable, but fighting spirit is back...and I am here...to see the hummingbirds out my window...flox is in full bloom75 degrees and sunny today.so life is good for now...later today seeing the cardiologist to swap medicines...then oncologist Friday. CPK stil supper high so muscle continues to waste..I hardly recognize myself and its affected my kidneys..all the protein going through them...Will get blood work done in a couple of weeks at U of C...last test in June had cancer showing...at low levels...had to go off for a drug holiday because of toxicity...so only back on for three weeks. We shall see how I am doingI am seeing Dr. Druker in October...he always makes me feel hopeful and calmhe has a way about him that invites this...and for which I am always so grateful.. I know each of you has had your strugglesphysically and emotionally...I think of you often and pray for each of you every nightGreenie, especially you and your wife,this first year of grieving Derek...your anniversary.so hard to bare...I m holding 7 clients who have lost adult children in my practice. I brought them together in a group to so they could meet one another and share their stories, introduce their children and share their grief. I thought of you and wondered if something like that might be helpful to you..I know there are many supports in your area through local hospices and I think Health Park...God willing I will be down by you in December as I was supposed to be last year before everything erupted.. Hope to one day give you a big hug. and to the rest of you..love, hugs and 18'sit feels good to write something... Beth -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com --
Re: [CMLHope] Gleevec
Dear Susan, Jeanie, Marty, Richard, Greenie et all, So sorry I have not been communicative for a long while. I am coming up after a really hard year physically and with many losses...sifting through 6000 emails...I realize how much I have missed just our groups banter, and love Hope each one of you is enjoying moments of sunshine...and holding on to the love that is in our group. I rely so often on the stories of others to inspire me, give me perspective...to hold hope for a better tomorrow and to stand tall in the belief that "This too shall pass" as my dad used to say...when things were really bad.. I had a rough year starting last September with heart issues, then got worse in December...and stayed struggling through the spring...starting to feel a bit strongerstill vulnerable, but fighting spirit is back...and I am here...to see the hummingbirds out my window...flox is in full bloom75 degrees and sunny today.so life is good for now...later today seeing the cardiologist to swap medicines...then oncologist Friday. CPK stil supper high so muscle continues to waste..I hardly recognize myself and its affected my kidneys..all the protein going through them...Will get blood work done in a couple of weeks at U of C...last test in June had cancer showing...at low levels...had to go off for a drug holiday because of toxicity...so only back on for three weeks. We shall see how I am doingI am seeing Dr. Druker in October...he always makes me feel hopeful and calmhe has a way about him that invites this...and for which I am always so grateful.. I know each of you has had your strugglesphysically and emotionally...I think of you often and pray for each of you every nightGreenie, especially you and your wife,this first year of grieving Derek...your anniversary.so hard to bare...I m holding 7 clients who have lost adult children in my practice. I brought them together in a group to so they could meet one another and share their stories, introduce their children and share their grief. I thought of you and wondered if something like that might be helpful to you..I know there are many supports in your area through local hospices and I think Health Park...God willing I will be down by you in December as I was supposed to be last year before everything erupted.. Hope to one day give you a big hug. and to the rest of you..love, hugs and 18'sit feels good to write something... Beth -Original Message- From: 'Susan Rosenthal' via CMLHope To: cmlhope Sent: Tue, Aug 8, 2017 6:49 am Subject: Re: [CMLHope] Gleevec Contact Dr. Druker in Portland, Oregon. Hugs, Susan Rosenthal > On Aug 8, 2017, at 6:57 AM, Ken Roberson wrote: > > Good morning everyone, > I just discovered that this site is still active. > I have been on Gleevec for 17 years with good results, but have had > additional medical challenges. > I was a member of the original participants for the STI571(Gleevec) at Johns > Hopkins Hospitals in Baltimore after trying everything else on the market for > CML with no success. > I am now 75 and thanks to God, family, and numerous medical staff I have been > around long enough to have become a grandfather. > Very best wishes to everyone in their battle with cancer. > Ken Roberson > > Sent from my iPad > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To po
Re: [CMLHope] Gleevec
Dear Ken, Welcome back. 17 years and still going strong! Thank you for sharing your story...what a wonderful gift you shared with all of us here. People here are very kind and also, very resilient. Many of us have had additional medical challenges because of our treatments. We are simply more vulnerable to other issues happening over time...I guess our genetics combined with the effects of the long term use of these TKI's... I do not know what your other health issues are, but I agree with Susan. It's worth putting in a call to Dr. Brian Druker in Portland Oregon and just seeing his thoughts 17 years later...so much progress has been made and many people find one TKI over another is easier for them to tolerate. Dr. Druker's number is: 503-494-5596 My best to you... Beth -Original Message- From: 'Susan Rosenthal' via CMLHope To: cmlhope Sent: Tue, Aug 8, 2017 6:49 am Subject: Re: [CMLHope] Gleevec Contact Dr. Druker in Portland, Oregon. Hugs, Susan Rosenthal > On Aug 8, 2017, at 6:57 AM, Ken Roberson wrote: > > Good morning everyone, > I just discovered that this site is still active. > I have been on Gleevec for 17 years with good results, but have had > additional medical challenges. > I was a member of the original participants for the STI571(Gleevec) at Johns > Hopkins Hospitals in Baltimore after trying everything else on the market for > CML with no success. > I am now 75 and thanks to God, family, and numerous medical staff I have been > around long enough to have become a grandfather. > Very best wishes to everyone in their battle with cancer. > Ken Roberson > > Sent from my iPad > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Blood work results
What great memories Marty And thanks Greenie for letting me know you are O.K., I will be down by you Greenie next week...leaving this Saturday for the week. So, if you would like to get together..would love to meet you! email.bkbar...@aol.com. Take care, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Dec 14, 2016 10:46 am Subject: Re: [CMLHope] Blood work results Hi Beth, You being a Jewish mother I'll bet you were brought up by a Jewish mother who always used at least two Jewish staples. One being Schmaltz and the other graveness. In those times we used to live into our 40s or 50s then plots... Although my father lived until 88 and enjoyed both of these Jewish staples. Oy Vei... When I was a kid it was Schmaltz on fresh hot rye bread with Caraway seeds imbedded in it. My father was a baker for more then fifty years. Brings back those taste buds, doesn't it... Not to mention those crispy critters, graveness 18's, Marty On Wed, Dec 14, 2016 at 11:20 AM, bkbarney via CMLHope wrote: Dear Greenie, Another thought...please make sure, this is the Jewish mom in me to be sure.that your heart is working well...sometimes we blame everything on our chemo's...if it's a new symptom, and you have been on a med for a long time, it could be something else that is causing symptoms...are you short of breath when you walk up stairs, tire more easily when you take a long walk? Have you had a stress test anytime??? or recently??? Remember, the blow to you when you have the kind of loss you have sustained is felt not just emotionally, but in the body as well..it is not uncommon to have health issues post such a trauma I know you have an amazing spirit just worried about you.. Take good care! Beth -Original Message- From: myvety2k via CMLHope To: cmlhope Sent: Wed, Dec 14, 2016 6:23 am Subject: [CMLHope] Blood work results Hi Group, I have some good news and then some not so good news. I received my blood work back from 10-07-2016 and my BCR-ABL1 fusion transcripts are NOT detected. The bad news is that my creatinine level and gone up from 1.56 to 1.82. I have always been on the high side going back to 1998. It was 1.3 back then. It was 1.58 in 6/01/2016. The other item is I'm retaining water in my feet and lower legs. Had some Polish sausage on Friday night and within 2 to 3 hours my feet, ankles and calves blew up like the Pillsbury Doughboy so no salt for me. Grace dose not use saw and when we go out for dinner I tell them NO SALT on anything but the sausage caught me by surprise. So Marty if you read this email me back or anyone and tell me what my options are because I am lost on what to do.. Have not heard from Doctor yet because she probably hasn't received a fax yet from Quest. Otherwise I doing find. Always get cramps that's been from day one when I started Gleevec the first week in Jan 2000. WBC is 4.7 and platelet court is 202 and RBC is 3.61 and it's been low ever since i started Gleevec. So other then that I want everyone to drive safe and have a Happy Holiday and a Happy New Year. David (greenie) Greenberg Sunny Fort Myers, Florida -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send em
Re: [CMLHope] Blood work results
Dear Greenie, Another thought...please make sure, this is the Jewish mom in me to be sure.that your heart is working well...sometimes we blame everything on our chemo's...if it's a new symptom, and you have been on a med for a long time, it could be something else that is causing symptoms...are you short of breath when you walk up stairs, tire more easily when you take a long walk? Have you had a stress test anytime??? or recently??? Remember, the blow to you when you have the kind of loss you have sustained is felt not just emotionally, but in the body as well..it is not uncommon to have health issues post such a trauma I know you have an amazing spirit just worried about you.. Take good care! Beth -Original Message- From: myvety2k via CMLHope To: cmlhope Sent: Wed, Dec 14, 2016 6:23 am Subject: [CMLHope] Blood work results Hi Group, I have some good news and then some not so good news. I received my blood work back from 10-07-2016 and my BCR-ABL1 fusion transcripts are NOT detected. The bad news is that my creatinine level and gone up from 1.56 to 1.82. I have always been on the high side going back to 1998. It was 1.3 back then. It was 1.58 in 6/01/2016. The other item is I'm retaining water in my feet and lower legs. Had some Polish sausage on Friday night and within 2 to 3 hours my feet, ankles and calves blew up like the Pillsbury Doughboy so no salt for me. Grace dose not use saw and when we go out for dinner I tell them NO SALT on anything but the sausage caught me by surprise. So Marty if you read this email me back or anyone and tell me what my options are because I am lost on what to do.. Have not heard from Doctor yet because she probably hasn't received a fax yet from Quest. Otherwise I doing find. Always get cramps that's been from day one when I started Gleevec the first week in Jan 2000. WBC is 4.7 and platelet court is 202 and RBC is 3.61 and it's been low ever since i started Gleevec. So other then that I want everyone to drive safe and have a Happy Holiday and a Happy New Year. David (greenie) Greenberg Sunny Fort Myers, Florida -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Blood work results
Dear Greenie, I had the same problem with creatine creeping up...but it was and continues to be helped by staying well hydrated, avoiding added salt and drinking 1` oz of pure unsweetened cranberry juice with 8 oz of water...throughout the day I have at least three glasses of this..and my creatine has returned to and remained normal now for some time..Kundson's organic "just Cranberry" Low in sugar when you are doing one ounce per glass. Will not affect sugars. As Marty says, the occasional splurge is a part of a quality of life, but overall...the peace of mind that you are doing good things for your body...helping it along..really supports your health.. As you come to another set of holidays and year's end, I want you and your sweetie to know, along with anyone else out there who is grieving the loss of a loved one...that you are loved, and thought of and not alone..I cannot imagine how much you miss your son I take comfort in the thought that we have each other, and together we will get through this life... Love, Beth -Original Message- From: myvety2k via CMLHope To: cmlhope Sent: Wed, Dec 14, 2016 8:09 am Subject: Re: Re: [CMLHope] Blood work results Marty you are a prince, thank you for your email I had eight or nine olives a few weeks ago and they must have had a ton of sodium in them and I paided the price so that's a no, no. Thanks for your fast reply, greenie In a message dated 12/14/2016 8:57:48 AM Eastern Standard Time, wa2...@gmail.com writes: So, David (greenie) Greenberg, hey now that's what I call a catchy name... You say that your Creatnine has slightly gone up, well I think it has a lot to do with Gleevec and I think that you had better stop eating those Polish Sausages. Salt is a big part of retaining water, and as we get older so does our kidney function. Believe me I know. When I was much younger I would think that I was invincible and twenty some odd years later Mother nature slapped me in my face and told me not to eat that crap that I was putting down my throat. But of course I didn't listen and ended up on dialysis and four years later with a kidney transplant. But I notice that you have become accustomed to trying to stop salt in your diet, and that is a very big plus for yourself. Also if your not diabetic try drinking Cranberry juice, it really cleans your kidneys out. Now just to be honest with you, every once in a while I like to eat Polish Sausages, and I pay dearly the next day. When I was on a cruise about twenty years ago I would like to eat Creaser salad, only this time the waiter brought over a bowl of anchovies and I put them on that salad. The next day I suffered with my legs stuffed with water, and the very worst part of it was the gout attack. I had to do to the ships doctor and get a shot of Prednisone. NEVER AGAIN!!! So my dear friend stop harassing your kidneys, you will feel much better for it... 18's Marty On Wed, Dec 14, 2016 at 7:23 AM, myvety2k via CMLHope wrote: Hi Group, I have some good news and then some not so good news. I received my blood work back from 10-07-2016 and my BCR-ABL1 fusion transcripts are NOT detected. The bad news is that my creatinine level and gone up from 1.56 to 1.82. I have always been on the high side going back to 1998. It was 1.3 back then. It was 1.58 in 6/01/2016. The other item is I'm retaining water in my feet and lower legs. Had some Polish sausage on Friday night and within 2 to 3 hours my feet, ankles and calves blew up like the Pillsbury Doughboy so no salt for me. Grace dose not use saw and when we go out for dinner I tell them NO SALT on anything but the sausage caught me by surprise. So Marty if you read this email me back or anyone and tell me what my options are because I am lost on what to do.. Have not heard from Doctor yet because she probably hasn't received a fax yet from Quest. Otherwise I doing find. Always get cramps that's been from day one when I started Gleevec the first week in Jan 2000. WBC is 4.7 and platelet court is 202 and RBC is 3.61 and it's been low ever since i started Gleevec. So other then that I want everyone to drive safe and have a Happy Holiday and a Happy New Year. David (greenie) Greenberg Sunny Fort Myers, Florida -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For
Re: [CMLHope] Got a brand new Hip!
Dear Suzieq, So very sorry to hear about your mother's death. My heart goes out to you. I am glad there will be a memorial next year in Kentucky that you can be a part of..sounds like the time you spent caring for here last spring will always be a precious memory for youand your hip replacement...I am happy it is going so well, sad for such severe pain, but seems like you will be as good as new in a few weeks. ..keep that warrior spirit up! Keep taking good care and know that I and all of us here are thinking about you and sending you love. 18's and a big hug.. Love, Beth -Original Message- From: Suzieq To: CMLHope Sent: Sun, Nov 27, 2016 7:17 pm Subject: [CMLHope] Got a brand new Hip! Hello to my CML Survivors! Hope everyone had a very nice Thanksgiving. I know it's been a while since I posted anything, but I haven't been on line very much for a few weeks. I come today to let y'all know that I had to have a total hip replacement of my left hip which was done on October 20th and was in the hospital (St.Louis) for 5 days till they moved me to a hospital closer to our home for almost 2 weeks of Rehab. I have one more week of restrictions left and then I'm home-free! Yea!!! This has been about the worst (I should say the longest) recovery from surgery that I have ever faced. I am not a patient person, but I have obeyed & not being doing the things I was told not to do. The reason for the replacement, it was bone on bone (the two weeks leading up to surgery were the most painful I have ever experienced). I had a major case of Arthritis according to the Orth. Surgeon of which he cleaned out as best he could while in there. He did say that I would probably have to have the other one replaced later on down the road (of which I thought to myself, it will have to be a long time down the road as far as I am concerned, lol), but it's not bothering me for now so we will leave it alone. He was very surprised that I have such a case of Osteo Arthritis as my age (63). Seems the left side has been the worse. Not only was it in the hip, but it's in the left Sacroiliac Joint just as bad. The right side has a bit, just not as bad. He made me go off the Gleevec for 30 days starting 7 days prior to the operation. That long wasn't mentioned in the beginning, I thought it was going to only be 15 days, but he said to stay off of it for the full 30 days. I am hoping all will be well when I see my Hem/Onc on the 19th.sure hate to lose my "non-detected", but even so, shouldn't take too long before it's back to 0. Oh, and one more thing..I had my surgery on Thursday and my Mom passed away Saturday night at 11:15 (Florida time). Needless to say, no way was I able to travel the 1025 miles (one way) to be with my oldest brother and for the funeral. I still grieve for her. I am now very thankful that I had last spring with her when I went down to care for her once she came out of the hospital. Got to spend 2 & 1/2 months as her total caregiver until we placed her back in the rehab/residential home where she wanted to go. She knew I was going in for surgery and she knew it went well. I told my husband I feel she planned her death perfectly cause she knew I would put off the surgery no matter how bad my pain was and come down there to be with her. She never wanted to be a "burden" to us and she always was worrying about me with the CML even though I told her that I was just fine, that it was not a problem, that the Gleevec was doing it's job and all was well. Since I wasn't able to be there, I told my brother that maybe we could maybe have a special Memorial Service for her back in the hometown in Kentucky where most of the family still lives later sometime after the 1st of the year. Everyone seemed to be okay with that. Okay, I hope you all have a very Merry Christmas & the Happiest New Year! Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cml
Re: [CMLHope] Happy Thanksgiving to all.
Ditto. Hope all my CML buddies have a peaceful and happy Thanksgiving. !8's,and love, Beth -Original Message- From: Richard H To: CMLHope Sent: Mon, Nov 21, 2016 10:54 pm Subject: [CMLHope] Happy Thanksgiving to all. I hope everyone has a great weekend. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Marty
Dear Marty, I am al;ways so glad to see your writing here. Like Richard, I am hoping always for the best for you... And you are right, while you have every right to complain considering all the pain and suffering you have endured, you instead lead us with your steadfast light, inspire us with your endurance...your determination to carry on, and amazing attitude ...one day at a time...I think of you often and keep you in my prayers. When I am down, I think of you in the "bubble", and the life you have had the privilege to live all these years later, still touching people's lives and hearts, inspiring them with your genuine care and deep spiritual beliefs. You are amazing Marty. Warmest regards, 18's Beth -Original Message- From: Richard H To: CMLHope Sent: Tue, Nov 8, 2016 10:58 pm Subject: Re: [CMLHope] Marty I'm still thinking about you every day. Hoping for the best. I don't see any complaining, just a lot of things to work on. The best to you each day and hope tomorrow will always be better. 18's Richard H. On Tuesday, November 8, 2016 at 9:35:26 PM UTC-6, wa2yyx wrote: Hi Angie, I am still not feeling well because one of the physical therapists was a bit to aggressive and that was a few weeks ago. From then on I have been suffering from swelling and pain so I told him that he is not what I need. I just went to a wonderful physical therapist and I had my first meeting with her. I less then one hour she was able to get some swelling down, so that is a plus. I'm not able to jitterbug but I have no desire to do that. What I would want is to be able to wash my face with both of my hands or feed myself without being able to lift the spoon or fork to get them into my mouth, but I can although it hurts. Since I am left handed I usually feel more comfortable using my left hand and arm. My neck is getting better but I still have a very long time to go and my range of motion has declined and probably will not get any better. Now I am getting over with some basil skin cancer. The dermatologist did the Moes surgery in his office. The stitches will come out on this Thursday morning. You have to understand that I received total body radiation and have been on immune suppressive drugs so that is why my kidneys failed and I received a kidney transplant as well as a cataract operation. All of these can cause skin cancers and anywhere on the head or face they require moes surgery. I have a friend living in this community who had a kidney transplant and in the past sixteen years he had many moes procedures. This may be graphic but is what it looks like. At least they can usually get these things out. But you already know me and I usually don't like to complain. 18's, Marty On Tue, Nov 8, 2016 at 8:47 PM, ANGELYN ESDERS wrote: How are you doing, Marty? Feeling better? Ready to jitterbug yet? -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic
HI Elizabeth, Just a note about muscle wasting and the TKI's. While they affect each of us differently, there is a clear connection between these meds and muscle wasting, cramping as well with Gleevec, sprycel and others. so, Nick is not alone...you might want to ask his doc to do a CPK blood test to see if it is elevated. There are meds, and things one can do and take to inhibit the inflammatory process. If muscle is wasting it is processed through the kidneys, so long term, this can effect the kidneys so they need to be watched as well... I like to be on the preventative side of things if possible...This is not meant to scare anyone, knowledge is power to us all, and it helps us to advocate for ourselves with our doctors.. Love and blessings to all, happy New Year to those who are celebrating. "'Shana Tova" to each one of you. We truly are blessed to still be here and to have one another.. I continue to go through hard times, like some others..just had angioplasty. They informed me at U of C that they are now studying the effects of TKI's on advancing coronary artery disease...I have normal cholesterol and I am young. But I do have a bad family history.. More later when I feel better.. Have a great weekend everyone.. 18's..Beth -Original Message- From: NICK WOODS To: cmlhope Sent: Fri, Sep 30, 2016 10:42 am Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic We're happy to hear you're on the mend, Marty. It's been good to read other persons updates in their lives of CML and family changes, etc. Sending sympathy to those whose family members have died within the past few months. It's been so tough on each CMLer as we age or our family members are diagnosed with other types of cancers. Nick's got a Zauve's O Club number, but it's been a while since we've posted it. Does anyone have a list? Wondered if any other persons with CML on Gleevec are experiencing multiple muscle cramps? Or have large muscle wasting? Thanks, Elizabeth Woods Nick's wife On Friday, September 30, 2016 5:18 AM, "cmlhope@googlegroups.com" wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics Angie, your card - 2 Updates Angie, your card ANGELYN ESDERS : Sep 30 12:20AM You are most welcome.I fractured my 9th vertebra a month ago. I have had to give up almost everything I do. I understand pain.May we BOTH be dancing on tabletops by this time next year!Angie From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Thursday, September 29, 2016 12:05 AM Subject: [CMLHope] Angie, your card Hi Angie, you were so thoughtful to send me a get well card, and I wanted to thank you for your kindness. 18's, Marty-- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. Marty Gartenberg : Sep 29 08:45PM -0400 Angie, There is a saying in the Aramaic Hebrew language Alivay Meaning Thank you GOD for what you have done for me. Also I am not looking to dance on any tabletops because both of us would probably fall off and break something. Lets just both of us dance on the floor together. Oh Angie don't worry we will get there. 18's Marty Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://
Re: [CMLHope] Just checking in
Still navigating side effects from antibiotic for the bitenot sure what is bite and what is antibiotic related but I still feel " off" and crappy...but, tomorrow is another day and I am sure it will get better... I just hate your mystery pain...I know you have had so many tests..maybe a hernia they cannot see??? something is hiding..but not life threatening..just a serious nuisance. I am thinking of you.. Love, B -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Sep 12, 2016 6:12 pm Subject: Re: [CMLHope] Just checking in Hi Beth and so good to hear from you. My liver test all come back good. This is a mystery pain and they can't find out what it is. Would probably have to have surgery to find it and I haven't wanted to risk it. I just take it day by day. Did your bite get better? Hope you are good. Blessings My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 12, 2016, at 7:00 PM, bkbarney via CMLHope wrote: so sorry jeannie, my mistake. Under right rib..would that be liver pain???who knows I feel for you, whatever it is...you have such a great disposition, and sense of humor..hehe...that just makes me smile...so you take care and have ag reat day. Love, Beth. -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Sep 11, 2016 4:04 pm Subject: Re: [CMLHope] Just checking in Hi Beth and so sorry you got bitten. I was once bitten by a scorpion. That really hurt. Yes it's good to hear from everyone so keep posting. My ct scan showed several things wrong but this old body is aging and I'm taking a powerful chemo. Some times I wonder if I really want to know what's inside my body. Hehe Don't know what to do about my pancreas. I've read that diet is really the only thing you can do so I'm on low fat diet and low sugar. I had my pain before the pancreas showed up bad do unless my pancreas is under my right rib I don't think that's the pain problem. I have no in digestive problems. Strange. Well day by day trusting in our Light. Blessings. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 10, 2016, at 12:37 PM, bkbarney via CMLHope wrote: Dear Norm, Long time know hear from you!!! It was wonderful to catch up and be reminded of your history...I hope that you can retire well when the time comes. Good news about your son...I remember you sharing about Mr. Hansso sadMr Buster sounds like a stitch..hopefully he both trainable and lovable. What an amazing thing that you have been on Tasigna for 12 years...I know you have had your ups and downs...but it is still inspiring to hearso thanks... I needed the inspiration today..and Marty...we are all here..cheering you on! for everyone out there today who might read this...all the usual suspects, as well as those who read but don't post...thanks for being here... my news is that I got bitten by a poisonous spider in the leg... blew up...huge red swollen..then antibiotics for the infection which I had a bad arthritic reaction to..I think personally it was an interaction with sprycel...but anyway, I have so much pain the last three days in my knees and legs.. I can hardly walk...so, off the antibiotic today..and hopefully the infection will get better with time...or they will put me on a new one to try...always something...but I still am blessed..and happy for my sprycel..keeps me here...enjoying the sunsets..and the coming fall...and my 17 year old pouch.. Graciejust adore here to pieces... so understand Norm, your comments about Hans. Love to all, 18's Beth -Original Message- From: Norm To: CMLHope Sent: Sat, Sep 10, 2016 9:14 am Subject: [CMLHope] Just checking in Just wanted to check in with the group. I miss Millie too. We both owned dachshunds. We lost Mr. Hans to lymphoma earlier this year which was one of the hardest things I have ever had to do. It was the first time in my life that I had the responsibility for ending his suffering. The vet was just awesome with his gentleness, understanding and care. Mr. Hans was 12. It was harder than making funeral arrangements for my mother, she was still living at the time which makes it easier I suppose. My mother had a great sense of humor. When we returned to her hospice care room she woke up and remarked that we were not gone long. She had a great laugh when I told her that all they wanted to know was paper or plastic. We got a new dachshund from a rescue organization. His name is Buster and he seems to like readi
Re: [CMLHope] Just checking in
so sorry jeannie, my mistake. Under right rib..would that be liver pain???who knows I feel for you, whatever it is...you have such a great disposition, and sense of humor..hehe...that just makes me smile...so you take care and have ag reat day. Love, Beth. -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Sun, Sep 11, 2016 4:04 pm Subject: Re: [CMLHope] Just checking in Hi Beth and so sorry you got bitten. I was once bitten by a scorpion. That really hurt. Yes it's good to hear from everyone so keep posting. My ct scan showed several things wrong but this old body is aging and I'm taking a powerful chemo. Some times I wonder if I really want to know what's inside my body. Hehe Don't know what to do about my pancreas. I've read that diet is really the only thing you can do so I'm on low fat diet and low sugar. I had my pain before the pancreas showed up bad do unless my pancreas is under my right rib I don't think that's the pain problem. I have no in digestive problems. Strange. Well day by day trusting in our Light. Blessings. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Sep 10, 2016, at 12:37 PM, bkbarney via CMLHope wrote: Dear Norm, Long time know hear from you!!! It was wonderful to catch up and be reminded of your history...I hope that you can retire well when the time comes. Good news about your son...I remember you sharing about Mr. Hansso sadMr Buster sounds like a stitch..hopefully he both trainable and lovable. What an amazing thing that you have been on Tasigna for 12 years...I know you have had your ups and downs...but it is still inspiring to hearso thanks... I needed the inspiration today..and Marty...we are all here..cheering you on! for everyone out there today who might read this...all the usual suspects, as well as those who read but don't post...thanks for being here... my news is that I got bitten by a poisonous spider in the leg... blew up...huge red swollen..then antibiotics for the infection which I had a bad arthritic reaction to..I think personally it was an interaction with sprycel...but anyway, I have so much pain the last three days in my knees and legs.. I can hardly walk...so, off the antibiotic today..and hopefully the infection will get better with time...or they will put me on a new one to try...always something...but I still am blessed..and happy for my sprycel..keeps me here...enjoying the sunsets..and the coming fall...and my 17 year old pouch.. Graciejust adore here to pieces... so understand Norm, your comments about Hans. Love to all, 18's Beth -Original Message- From: Norm To: CMLHope Sent: Sat, Sep 10, 2016 9:14 am Subject: [CMLHope] Just checking in Just wanted to check in with the group. I miss Millie too. We both owned dachshunds. We lost Mr. Hans to lymphoma earlier this year which was one of the hardest things I have ever had to do. It was the first time in my life that I had the responsibility for ending his suffering. The vet was just awesome with his gentleness, understanding and care. Mr. Hans was 12. It was harder than making funeral arrangements for my mother, she was still living at the time which makes it easier I suppose. My mother had a great sense of humor. When we returned to her hospice care room she woke up and remarked that we were not gone long. She had a great laugh when I told her that all they wanted to know was paper or plastic. We got a new dachshund from a rescue organization. His name is Buster and he seems to like reading. He has devoured about 5 books from our coffee table and tears through the pages. I really liked some of those books and he thought they were quite tasty. Bad Buster. For those that are new or do not know my history: I was dropped on my head when I was a baby and cracked my skull. When I was in the fourth grade, I rode my bicycle into an intersection and was hit by a speeding car driven by a 14 year old girl that was being chased by her brother. She hit me then a tree. The tree died. I t was a teenager during the late 60s and early 70s. I lost a kidney to cancer in 99. Diagnosed with CML on April fools day 2003 with a WBC of 250,000. Started Gleevec and chemo with apherisis. Remission until the fall of 2004. Entered a phase 1 clinical trial for AMN107 which became Tasigna in early December. My blood counts bottomed out and the drug was withheld for about a month. January of 2005 I entered the blast phase and the drug company allowed the doctors at MDACC to restart the drug. Had to have blood and platelets infused a number of times before my counts started coming back up. While in the hospital I determined that one eye was not as bright as the other a
Re: [CMLHope] Just checking in
we love you Marty. So great to hear from you.. Rest up and keep healing.. WE miss you! Type when you can don't stresslots of prayers going out in your direction... Love and 18's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Sun, Sep 11, 2016 9:01 am Subject: Re: [CMLHope] Just checking in very hard to type so if you could let everyone know I could save the time trying to contact everyone don't worry I will be back 18's Marty On Sun, Sep 11, 2016 at 12:02 AM, Richard H wrote: Great to see your post. Positive thoughts for you and prayers still going your way. I understand your struggle, just say hi on occasion and my concerns about you will ease. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Just checking in
Dear Norm, \Long time know hear from you!!! It was wonderful to catch up and be reminded of your history...I hope that you can retire well when the time comes. Good news about your son...I remember you sharing about Mr. Hansso sadMr Buster sounds like a stitch..hopefully he both trainable and lovable. What an amazing thing that you have been on Tasigna for 12 years...I know you have had your ups and downs...but it is still inspiring to hearso thanks... I needed the inspiration today..and Marty...we are all here..cheering you on! for everyone out there today who might read this...all the usual suspects, as well as those who read but don't post...thanks for being here... my news is that I got bitten by a poisonous spider in the leg... blew up...huge red swollen..then antibiotics for the infection which I had a bad arthritic reaction to..I think personally it was an interaction with sprycel...but anyway, I have so much pain the last three days in my knees and legs.. I can hardly walk...so, off the antibiotic today..and hopefully the infection will get better with time...or they will put me on a new one to try...always something...but I still am blessed..and happy for my sprycel..keeps me here...enjoying the sunsets..and the coming fall...and my 17 year old pouch.. Graciejust adore here to pieces... so understand Norm, your comments about Hans. Love to all, 18's Beth -Original Message- From: Norm To: CMLHope Sent: Sat, Sep 10, 2016 9:14 am Subject: [CMLHope] Just checking in Just wanted to check in with the group. I miss Millie too. We both owned dachshunds. We lost Mr. Hans to lymphoma earlier this year which was one of the hardest things I have ever had to do. It was the first time in my life that I had the responsibility for ending his suffering. The vet was just awesome with his gentleness, understanding and care. Mr. Hans was 12. It was harder than making funeral arrangements for my mother, she was still living at the time which makes it easier I suppose. My mother had a great sense of humor. When we returned to her hospice care room she woke up and remarked that we were not gone long. She had a great laugh when I told her that all they wanted to know was paper or plastic. We got a new dachshund from a rescue organization. His name is Buster and he seems to like reading. He has devoured about 5 books from our coffee table and tears through the pages. I really liked some of those books and he thought they were quite tasty. Bad Buster. For those that are new or do not know my history: I was dropped on my head when I was a baby and cracked my skull. When I was in the fourth grade, I rode my bicycle into an intersection and was hit by a speeding car driven by a 14 year old girl that was being chased by her brother. She hit me then a tree. The tree died. I t was a teenager during the late 60s and early 70s. I lost a kidney to cancer in 99. Diagnosed with CML on April fools day 2003 with a WBC of 250,000. Started Gleevec and chemo with apherisis. Remission until the fall of 2004. Entered a phase 1 clinical trial for AMN107 which became Tasigna in early December. My blood counts bottomed out and the drug was withheld for about a month. January of 2005 I entered the blast phase and the drug company allowed the doctors at MDACC to restart the drug. Had to have blood and platelets infused a number of times before my counts started coming back up. While in the hospital I determined that one eye was not as bright as the other and found out I had cataracts which turned out to not be the cause but it was an issue with my retinas. I saw 5 different eye specialist and the best they could come up with was a leukemic cell intrusion into my eyes. I had radiation treatment on my eyes. It turned out it was not a leukemic cells issue but wet macular degeneration. Started Avastin shots in my right eye and by that time had lost my central vision in my left eye due to the scarring from the leakage. Vision is now fixed with contact lens correction of 20/400 left and 20/200 right. I still work, but do not tell anyone I am still driving (much better than those idiots on their cell phones texting I should add). I should probably change my nickname from Bubba to Lucky. I played a lot of golf earlier this year, I know a blind golfer but I love the game, until I got severe tendonitis in both arms. It was my own fault for not warming up and stretching and thinking I am as young as I think and not as old as I am. I can still break 90 and almost broke 80 on a day the putts could not miss the hole. beats me. My son is home from the Marines after 4 years and achieving the rank of Sargent. He is now in college part time to get his GPA up so he can transfer his credits to a four year college. I am hoping U of H, go Cougars. I apologize for such a long post but I try to keep up with all of the groups posts. I have been watching Jeanie's progress
Re: [CMLHope] Haven't gotten any e-mail notifications
Dear Jeanie, I too was stunned that you have been in so much pain for so long and that the pancreatitis was not found sooner. Eating fats definitely triggers it and makes it worse. The good news is with proper meds, and a diet to calm it down, you very well may have that pain go away forever.. That would be wonderful!! I don't know a thing about a pancreatitis that has gone on for so long without diagnosis or treatment..but I hope and pray that you feel much better very very soon. Joyce, and ERCP is a test where they put you under twilight meds, like a colonoscopy, and take a small tube with a camera on the end of it and go down your throat into your tummy etc to have a lookthey sometimes will take a small biopsy to assess the cells in the area...look for inflammation or infection, etc...it doesn't hurt.. may have a tiny sore throat for a day afterwards...but that's about it...painless. worth a look Jeannie- it also can help to rule in or out other possible causes of pain. Beth -Original Message- From: Joyce Mesnarich To: cmlhope Sent: Wed, Sep 7, 2016 6:09 pm Subject: Re: [CMLHope] Haven't gotten any e-mail notifications Jeanie, Any restricted diet is a challenge; but if you are motivated it is very possible. And I know you will be motivated. I think this may, in fact, be the cause of your pain in the side. Seems almost unthinkable that it took doctors this long to find your pancreas problem. My husband, Wayne, is still on Bosulif since Sept 2015. Was on Sprycel before that but had problems with pleural effusion. Was on vacation about 3 months. But in spite of the fact that he had been in a deep MMR his PRC counts went up. Dr Talpaz was hoping maybe he would be one of the lucky ones who could quit treatment. Not so. He has again achieved MMR. What concerns me is that each test his counts go up a bit. He is a 0.0321. Dr says not to worry. He is still in MMR. So I will try to put it out of mind. We learn so much from each other. Maybe you can enlighten me as to what a ERCP is. God bless and keep you. Joyce in IL > On Sep 6, 2016, at 1:48 PM, 'Jeanie' via CMLHope > wrote: > > Thanks Joyce, > Yes a low fat diet is recommended for pancreatic problems. About 7 months > into Ponatinib treatment the pain in my side became bad. One of the side > effects is pancreatitis. They say it is caused by drinking and smoking and I > don't do either so it has to be the tki. > They say you can heal it with diet so I'll take that step but don't know what > the doctor will say. See him the end of the month. > He might want a ERCP. Don't know if I want that. > Blessings to all. > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > >> On Sep 6, 2016, at 2:24 PM, Joyce Mesnarich wrote: >> >> Jeanie, >> So sorry to hear of your pancreas problem. I guess we learn something new >> every day. I never knew the pancreas had anything to do with fat. I >> thought it handled sugar. Whatever, we have to do what the doctors tell us. >> As time goes on, I fear that they will find out that most of the TKIs have >> bad side effects when used for a longer amount of time. But we are all >> thankful for the extra length of time they give CML warriors “on the right >> side of the grass”, as they say. I will keep you in my prayers. >> Joyce in IL >> >> >>> On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope >>> wrote: >>> >>> Me either. Think everyone is on vacation. >>> I had my cat scan. Some bad news. My pancreas has atrophied. Got to cut >>> down on fat. I wonder if that is what is causing my pain. I know >>> Ponatinib causes pancreatitis. Dr never says anything about it. >>> Everything else was the same except for a little fatty liver. >>> Hope everyone is good. >>> Still no Marty >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> 🐠18's >>> Dx 1/2004 CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib 1/2015 >>> Doctor Balducci Moffitt Cancer Center >>> On Sep 5, 2016, at 7:06 PM, 'LadyRx' via CMLHope wrote: I haven't received any notifications in my e-mail for the past 3 weeks or so. Just checking to see if the group is still active. If so, please leave a comment. Thank you! -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at ht
Re: [CMLHope] Re: About Marty
Ditto from me. Thank you so much for checking on Marty. Glad to know his story..and that his amazing spirit is still intact to inspire all of us. HOPe everyoneis doing OK. Greenie , thinking of you and your wife as you live through the loss of your son. While there are no words adequate to express my sadness for you, I want you to know I and all of us here, continue to think of you each day. Take good care. Love, Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Thu, Sep 8, 2016 9:38 am Subject: Re: [CMLHope] Re: About Marty Thank you so much for checking out how Marty is doing for all of us. greenie In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: > On Sep 7, 2016, at 6:04 PM, LadyRxwrote: > > Because everyone has been worried about our suddenly absent friend, Marty, > I decided to look him up and call. Our dear friend is recovering from a > fall in which he broke his neck in three places and broke some bones in his > shoulder. Due to complications from surgery, he developed pneumonia and was > in the hospital. After recuperating from that and being in a rehab > facility, he is at home now. He seems to have a very positive attitude. > What an amazingly kind, warm, intelligent man he is! He sends warmest > regards to all and looks forward to reconnecting with everyone when he's > able to do so. > 18's for our friend, Marty! -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Haven't gotten any e-mail notifications
Dear Jeanie, I am still here. Sorry to hear about the pancreas issue. That would explain the pain in your side you have been dealing with for so long...let me know what happens. I am OKworried about Marty and others..had a rough summer health wise, but trying to stay positive, and figure things out with the docs. Was off sprycel for a holiday, now back on for about three weeks..I agree with Joyce, so happy to be on the upside of the grass..we warriors need to keep on uniting...stay stronger together... I will write more soon. Take good care and know that you are loved and thought of18's Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Sep 6, 2016 12:48 pm Subject: Re: [CMLHope] Haven't gotten any e-mail notifications Thanks Joyce, Yes a low fat diet is recommended for pancreatic problems. About 7 months into Ponatinib treatment the pain in my side became bad. One of the side effects is pancreatitis. They say it is caused by drinking and smoking and I don't do either so it has to be the tki. They say you can heal it with diet so I'll take that step but don't know what the doctor will say. See him the end of the month. He might want a ERCP. Don't know if I want that. Blessings to all. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Sep 6, 2016, at 2:24 PM, Joyce Mesnarich wrote: > > Jeanie, > So sorry to hear of your pancreas problem. I guess we learn something new > every day. I never knew the pancreas had anything to do with fat. I thought > it handled sugar. Whatever, we have to do what the doctors tell us. As time > goes on, I fear that they will find out that most of the TKIs have bad side > effects when used for a longer amount of time. But we are all thankful for > the extra length of time they give CML warriors “on the right side of the > grass”, as they say. I will keep you in my prayers. >Joyce in IL > > >> On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope >> wrote: >> >> Me either. Think everyone is on vacation. >> I had my cat scan. Some bad news. My pancreas has atrophied. Got to cut >> down on fat. I wonder if that is what is causing my pain. I know Ponatinib >> causes pancreatitis. Dr never says anything about it. Everything else was >> the same except for a little fatty liver. >> Hope everyone is good. >> Still no Marty >> >> My Motto: >> Faith and Pills >> With Love >> 🐠18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/2015 >> Doctor Balducci Moffitt Cancer Center >> >>> On Sep 5, 2016, at 7:06 PM, 'LadyRx' via CMLHope >>> wrote: >>> >>> I haven't received any notifications in my e-mail for the past 3 weeks or >>> so. Just checking to see if the group is still active. If so, please leave >>> a comment. >>> >>> Thank you! >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> - >>> >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To post to this group, send email to CMLHope@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-unsubscr...@googlegroups.com >>> For more options, visit this group at http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send an >>> email to cmlhope+unsubscr...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> - >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at
Re: [CMLHope] How Am I Doing?
Susan, I am so deeply happy for you! thanks for sharing such good news. Love, Beth -Original Message- From: 'Susan Rosenthal' via CMLHope To: cmlhope Sent: Wed, Aug 3, 2016 7:54 pm Subject: [CMLHope] How Am I Doing? Jeanie and others: I am doing great...I hope I just sent in my 10 month (since October 2, 2015) TKI-free 6 week PCR test. My fingers are crossed. When we don’t hear from Marty, we know that something is going on. Hugs, Susan Rosenthal -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Fatigue side effect testing nilotinib
Thanks JeanieMarty..please respond so we know what is going on. we are thinking of you!!! Hope all is well with everyone...still dragging with this ongoing virus..am going to restart sprycel cell very soon...will keep everyone updated..love, Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Fri, Jul 15, 2016 11:30 am Subject: Re: [CMLHope] Fatigue side effect testing nilotinib Hi Beth and so sorry you have been so ill. I too had an awful virus that started with a sore throat. I had to take round of antibiotics but was so full of mucus and sick for weeks. Maybe it's a new type of virus because I had all my flu shots. I still have this awful side pain so another rounds of scans soon. They show nothing so far. I'm in MMR but still have some detectable cells. Fight in sweet warrior. We are worried about Marty. Marty are you there??? My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jul 13, 2016, at 1:36 PM, bkbarney via CMLHope wrote: Dear Jeanie, Hope you are feeling better...and staying positive! Sorry it took so long for me to write back to you and everyone. I got really sickvirus that morphed into a bacterial infection...it was scary...103 fever for close to a week. I am at week five, and finally feel about 80 percent better. My BCR Abl results came back not showing on June 6th and on June 8th I got sick..so I went off sprycel for a drug holiday during this illnessnow preparing to re-uptake meds this weekend. I did another BCR-ABl one month later..last week..still waiting to see the results of that one..wondering if this illness could have any effect on cancer. We will find out... Otherwise, status quo, very high CPK, exhausted all the time from it...but choosing not to go on high dose steroids or immune suppressing drugs at this time...so, while I may change my mind in the future, for now...I remain positive and trying to fight the good fight. If CPK goes over 1000 then it starts kidney damage and thus, I will have no choice but to do one of the above interventions. that's my story, trying to stay cool, and feel better from this virus and get back to work. I have 6000 emails waiting...unbelievable...I lost 6 weeks in a blink! Hope life has calmed down for those struggling this summer and that we all can find some joy in the weeks to come! I hear there are some sweet movies out guaranteed to make you smile...so I am going to look into this...:) Warmest regards and 18'as Beth. -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Jul 12, 2016 11:04 am Subject: Re: [CMLHope] Fatigue side effect testing nilotinib Anyone there. Testing My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jul 6, 2016, at 7:12 PM, Ricardo Gadelha wrote: Thank you all for the feedback. I am trying acupunture and guaraná. Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" escreveu: When I was first in Gleevec I wanted to go visit my daughter. She called and I told her I was too tired to pack. She said don't pack get some rest. So my advise to you is don't do anything you don't have to do. Rest as much as you can. Your body is fighting a horrible disease and its tired. Listen to your body. Try to exercise some it don't over due. Good luck. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 27, 2016, at 8:39 PM, kathy walls wrote: I hear you!!! I had the fatigue the whole time I was on the drug. When I changed drugs because of the multitude of side effects I had the fatigue lessened dramatically. I'm on gleevec 200mg daily and while I'm not considered in remission I feel s much better I'll take the #'s I got and run Sent from my iPhone On Jun 27, 2016, at 7:54 PM, Ricardo Gadelha wrote: Hi folks, Does anyone know how to deal with fatigue that comes with nilotinib 400 mg bid? -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google
Re: [CMLHope] Fatigue side effect testing nilotinib
Dear Jeanie, Hope you are feeling better...and staying positive! Sorry it took so long for me to write back to you and everyone. I got really sickvirus that morphed into a bacterial infection...it was scary...103 fever for close to a week. I am at week five, and finally feel about 80 percent better. My BCR Abl results came back not showing on June 6th and on June 8th I got sick..so I went off sprycel for a drug holiday during this illnessnow preparing to re-uptake meds this weekend. I did another BCR-ABl one month later..last week..still waiting to see the results of that one..wondering if this illness could have any effect on cancer. We will find out... Otherwise, status quo, very high CPK, exhausted all the time from it...but choosing not to go on high dose steroids or immune suppressing drugs at this time...so, while I may change my mind in the future, for now...I remain positive and trying to fight the good fight. If CPK goes over 1000 then it starts kidney damage and thus, I will have no choice but to do one of the above interventions. that's my story, trying to stay cool, and feel better from this virus and get back to work. I have 6000 emails waiting...unbelievable...I lost 6 weeks in a blink! Hope life has calmed down for those struggling this summer and that we all can find some joy in the weeks to come! I hear there are some sweet movies out guaranteed to make you smile...so I am going to look into this...:) Warmest regards and 18'as Beth. -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Tue, Jul 12, 2016 11:04 am Subject: Re: [CMLHope] Fatigue side effect testing nilotinib Anyone there. Testing My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jul 6, 2016, at 7:12 PM, Ricardo Gadelha wrote: Thank you all for the feedback. I am trying acupunture and guaraná. Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" escreveu: When I was first in Gleevec I wanted to go visit my daughter. She called and I told her I was too tired to pack. She said don't pack get some rest. So my advise to you is don't do anything you don't have to do. Rest as much as you can. Your body is fighting a horrible disease and its tired. Listen to your body. Try to exercise some it don't over due. Good luck. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 27, 2016, at 8:39 PM, kathy walls wrote: I hear you!!! I had the fatigue the whole time I was on the drug. When I changed drugs because of the multitude of side effects I had the fatigue lessened dramatically. I'm on gleevec 200mg daily and while I'm not considered in remission I feel s much better I'll take the #'s I got and run Sent from my iPhone On Jun 27, 2016, at 7:54 PM, Ricardo Gadelha wrote: Hi folks, Does anyone know how to deal with fatigue that comes with nilotinib 400 mg bid? -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://gro
Re: [CMLHope] New BCR-ABL test in
Great news Richard!!! Happy. Keep cool in the heat. Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Wed, Jul 13, 2016 5:56 am Subject: Re: [CMLHope] New BCR-ABL test in Glad to read about your report Richard H. greenie In a message dated 7/13/2016 12:03:21 A.M. Eastern Daylight Time, rbhuffm...@gmail.com writes: I have another Good Report foe this 6 month test. My count is ..1% or less. Great News for me. I am still t checking weekly for low hemoglobin and still have times that I use Procrit to build it back up. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] About John Hopkins Cancer Update
Dear Greenie, So glad to hear that Joyce is home. Greenie, as I am in Chicago..if I can help you in any way..please let me know. Thinking of you and your family sending warmth and prayers to you. Beth -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Thu, Jun 16, 2016 5:13 am Subject: Re: [CMLHope] About John Hopkins Cancer Update Glad she's home Greenie and sorry she can't go with you. Tell her I said to take care of herself and everything else will take care of itself. I know personally what I can do and what I can't and even though I want to do somethings I understand I can't. Grief will take its tole on you so take care of yourself too. Love and blessing to you in time of sorrow. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 16, 2016, at 4:52 AM, Myvety2k via CMLHope wrote: Thank you Joyce and to everyone else. Grace came home yesterday afternoon and she is O. K. but needs to rest. Doctor told her she's not to go to Chicago with me. greenie In a message dated 6/16/2016 2:41:46 A.M. Eastern Daylight Time, joy...@htc.net writes: Greenie, So sorry to hear about your son. I hope Grace is back at home and recovering. It is very hard to lose a child. You are in my thoughts and prayers. Joyce in IL On Jun 14, 2016, at 12:05 PM, 'Jeanie' via CMLHope wrote: Thanks Marty, My hubby died in 1998 in his sleep right beside me. We had been married almost 43 years and dated for a year and half before we got married. He had his first heart attack when he was 52. It was a very hard loss. But life goes on and we must live it the very best we can. Thanks. 😇❤️ My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 14, 2016, at 12:25 PM, Marty Gartenberg wrote: But Jeanie, you now can see what my father taught me and just look right into your heart and mind... By the way Jeannie, your heart and your mind are very powerful tools. Sorry about the loss of your "Hubby" 18's Marty On Tue, Jun 14, 2016 at 11:26 AM, 'Jeanie' via CMLHope wrote: So true Marty. When I lost my Hubbie I could feel him everywhere. I even saw him standing at the refrigerator door where I had seen him so many times. Love will sustain you and yours. ❤️💋 My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 14, 2016, at 10:59 AM, Marty Gartenberg wrote: I am so sorry to hear about the tragic loss of your son. Please try to take care of Grace. It seems that life has it's twists and turns. but Grace will get through with this, just so much aggravation and grief. My deepest condolences to you, Grace, and your daughter-in-law and the rest of your family and friends I still remain sending out my 18's and there is a good reason. My father once taught me that when a loved one passes on that the loved person may no longer be physically there, but that person will always be there in your hearts and minds. Please take comfort in that. My prayers are with you. 18's Marty On Mon, Jun 13, 2016 at 10:52 PM, Myvety2k via CMLHope wrote: With heavy heart I received word from my daughter-in-law this afternoon that my 31 year son Derek passed away from a heart attack, he was at the gym working out. Grace and I are lost for words and I had to take Grace to the hosp. from chest pains put she will be alright but will have to stay their for a few days before they let her come home. greenie In a message dated 6/13/2016 6:07:27 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Our food today is full of junk. You would have to grow everything yourself and use no fertilizer or pesticides. You can't even buy gum or toothp
Re: [CMLHope] About John Hopkins Cancer Update
thinking about you Marty. Glad you are out. Sorry to hear about your "bump in the road.." We need smoother roads! Take good care and keep us updated.. 18's and love, Beth -Original Message- From: Richard H To: CMLHope Sent: Mon, Jun 13, 2016 9:41 pm Subject: Re: [CMLHope] About John Hopkins Cancer Update I am always concerned when you aren't posting, but the prayers are still there daily for you. Richard H. On Monday, June 13, 2016 at 8:23:21 PM UTC-5, wa2yyx wrote: Hi Jeanie and everyone else. Just to let all of you know I had to go to the hospital for an infection on the lower part of my left leg, that I got I got last week. They had to admit me and I was started on Vankromycen IV for the last week and just got home today. Just another small bump in the road for me. I hope that everyone is doing well. 18's, Marty On Mon, Jun 13, 2016 at 6:07 PM, 'Jeanie' via CMLHope wrote: Our food today is full of junk. You would have to grow everything yourself and use no fertilizer or pesticides. You can't even buy gum or toothpaste without artificial sweetener. I was a health nut before I got cancer. Go figure. I think moderation is the key and variety. Try to get organic if possible. Blessings. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 10, 2016, at 2:04 PM, 'Susan Zimmerman' via CMLHope wrote: I still know that every bit of Marty's article is true re. avoiding carcinogens. Snopes is not always right. Any naturopathic doc would agree w the article. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Friday, June 10, 2016 'Susan Rosenthal' via CMLHope wrote: Before sending anything to anyone, I always check this site first: http://www.snopes.com/medical/disease/cancerupdate.asp Have a wonderful day -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsub...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Gro
Re: [CMLHope] About John Hopkins Cancer Update
Dearest Greenie, I am so deeply saddened to hear of your and Grace's news about your son Derek. My heart goes out to you and your family now and in the future. I do not believe there are words that can begin to express the devastation and loss you must feel. I hope you and Grace, your daughter in law and the rest of your family can find a little bit of comfort in the deep love and support that is here for you, whenever you need it. We love you. We care. We want to be here to listen and to comfort. Surrounding you with prayers and love, Beth -Original Message- From: Richard H To: CMLHope Sent: Mon, Jun 13, 2016 9:50 pm Subject: Re: [CMLHope] About John Hopkins Cancer Update Sorry to hear this news. I am praying for you and your family. A special prayer for Grace so the family can be together to remember the good things. Richard h. On Monday, June 13, 2016 at 9:52:12 PM UTC-5, greenie wrote: With heavy heart I received word from my daughter-in-law this afternoon that my 31 year son Derek passed away from a heart attack, he was at the gym working out. Grace and I are lost for words and I had to take Grace to the hosp. from chest pains put she will be alright but will have to stay their for a few days before they let her come home. greenie In a message dated 6/13/2016 6:07:27 P.M. Eastern Daylight Time, cml...@googlegroups.com writes: Our food today is full of junk. You would have to grow everything yourself and use no fertilizer or pesticides. You can't even buy gum or toothpaste without artificial sweetener. I was a health nut before I got cancer. Go figure. I think moderation is the key and variety.Try to get organic if possible. Blessings. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 10, 2016, at 2:04 PM, 'Susan Zimmerman' via CMLHope wrote: I still know that every bit of Marty's article is true re. avoiding carcinogens. Snopes is not always right. Any naturopathic doc would agree w the article. Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Friday, June 10, 2016 'Susan Rosenthal' via CMLHope wrote: Before sending anything to anyone, I always check this site first: http://www.snopes.com/medical/disease/cancerupdate.asp Have a wonderful day -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsub...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group,
Re: [CMLHope] Pictures
Dear Kathy, I just wanted to say hello and let you know that many of us are out here, following your posts and are cheering for you...The beginning years are often the hardest for many with CML as finding the right TKI for you at just the right dose which helps to keep the cancer under control..( chronic) while at the same time enabling you to have a quality of lifethat's not always easy at first..but it does get better usually with time and patience..It sounds like Tasigna worked well for the cancer, but your dosage was too high for your system to handle. Since Tasigna is many many times more powerful than Gleevec...it makes sense that you may have to take more Gleevec to maintain a stable range for your BCR-ABL. There seem to always be trade offsin any case, try to keep your chin up...and stay close here so you don't feel alone... thinking of you,, 18's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, May 31, 2016 12:15 pm Subject: Re: [CMLHope] Pictures Hi Kathy, Well that is the story, living rather then existing, and we all have that in common, although sometimes we feel that we are existing, but that is another story that most of us have been through myself included... Anyway, since your counts are slowly rising and you seem to be tolerating the 200 mg of Gleevec except for your counts going up then your doctor may subscribe a higher dose probably 400mg which is the usual dose when your dealing with Gleevec first starting out but not necessary because we are all different. It just has to find the "happy range" to try and keep on the right track, or maybe he will do some changes with your TKI's? I remember asking you if your oncologist specializes in CML? You remember something... Yes it is those two numbers.. 18's, Marty Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it mild!! Horrible rash and cysts. I then started 300mg daily of gleevec(tasigna was 490mg) all my numbers looked great 3 mo out with the gleevec but still had some skin issues so he reduced the dose to 200 my daily and that has made a big improvement for my skin and of course self esteem. But the down side I guess is that all magical cancer cells per billion is creeping up. So far he's not worried but he said we will have talk about increasing or changing meds. But for now I'm living not just exsiting!!! On Tue, May 31, 2016 at 11:35 AM, kathy walls wrote: Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it mild!! Horrible rash and cysts. I then started 300mg daily of gleevec(tasigna was 490mg) all my numbers looked great 3 mo out with the gleevec but still had some skin issues so he reduced the dose to 200 my daily and that has made a big improvement for my skin and of course self esteem. But the down side I guess is that all magical cancer cells per billion is creeping up. So far he's not worried but he said we will have talk about increasing or changing meds. But for now I'm living not just exsiting!!! 18's Kate Sent from my iPhone On May 31, 2016, at 9:41 AM, Marty Gartenberg wrote: Hi Cathy, Please refresh my mind... Why did you have to stop Tasigna in the first place. If my memory serves me correctly was it because of some skin problems? Which ever way it is has your doctor suggested that you should try another TKI? and how long are you using Tasigna? 18's, Marty On Tue, May 31, 2016 at 8:41 AM, kathy walls wrote: On the tasigna my molecular level was 0.04. Since I changed to gleevec that level has risen to 3.98. So that's where I'm at Sent from my iPhone On May 30, 2016, at 10:18 PM, Marty Gartenberg wrote: Hi Kate, First of all if you have CML then you have the Philadelphia Chromosome. What bothers me is if the oncologist told you about you never reaching remission, then what level was he talking about? Have you taken any PCR tests yet? And if you did then what were the results? But since you are a " newbie" you may have not taken any, and also is your doctor a CML specialist? There is a lot to think about, trust me you will learn to ask questions. Remember the more ask the more that you will learn. Glad to see that your sporting the 18's 18's to you as well. Marty On Mon, May 30, 2016 at 9:27 PM, kathy walls wrote: I'm still a newbie was diagnosed 1/9 and started tasigna on the 23rd, oh yeah I'm lucky enough to have the ph chromosome to boot. I stopped tasigna in December because of horrible side effects, I got an awful rash and cysts. Switched to Gleevev and I feel much better, but did dr said at this level i will never see remission. I'm ok with that. Quality of like is much important to me than quantity. I'm 56 I have a 4 yr old grandson and 3 month old grandson. I'd much rather a little pep in my step than being in remission but to sick to anything! Just my thoughts. We all are fighting the sa
Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so
Glad you are feeling better Jeanie. Thinking of you...Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Thu, May 12, 2016 6:14 am Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so Hi Jeanie and Beth, Hey both of you seem to be raining down on us with your love and thoughtfulness. I have been a member of many groups but have never seen such compassion for anyone in this group and that means everyone! This result of having such a miserable time with what you had can not be a virus but rather a bacterial infection because the antibiotics are doing their job. Now make sure that you start using that Spirometer that I mentioned because you will see the congestion that is in your lungs will start subsiding very soon. It would always work for me. Love, and as usual 18's, Marty On Wed, May 11, 2016 at 6:54 PM, 'Icandoallttc' via CMLHope wrote: Hi Beth and thank you so much for your love and concern. II am taking antibiotics and this is my sixth day. My throat has cleared up but I have a deep congestive cough. I am getting better. Each day I feel a little stronger. I think there is a virus going around that no one has identified yet. Anyway have a wonderful weekand thanks again. This group has really boosted my morale Greatly. Love you On May 11, 2016, at 5:26 PM, bkbarney via CMLHope wrote: Jeanie, thinking of you and hoping you feel better soon. I agree with others here, please act swiftly and see your doc. If you do need antibiotics you can get on them sooner verses later...it seems like once something gets through our immune systems, it's harder to recover because of the meds...you take good care and keep us posted. Love, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, May 10, 2016 8:41 pm Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so Hi Jeannie, Sorry to hear this. You like I am immunocomprimised and that is probably why your flu like symptoms are persisting. As far as antibiotics go if in fact you are suffering from a viral infection then antibiotics are probably useless however if your suffering from a bacterial infection then antibiotics will usually work, but I would suggest that you run it by your doctor. He or she will probably take a culture to see exactly what is going on and will know what to treat you with. By the way sometimes it takes more then a few days to grow the culture so it will probably be a good idea to act on it ASAP. Do you know what a Spirometer is? Read below, and believe me it really works. It will help keep your lungs clear. I use it anytime that my lungs are having any problems. I hope that you start feeling better. 18's, Marty How to use an Incentive Spirometer Sit up and hold the incentive spirometer. Place the mouthpiece of the incentive spirometer in your mouth. Make sure you make a good seal over the mouthpiece with your lips. Breathe out (exhale) normally. Breathe in (inhale) SLOWLY. A piece in the incentive spirometer will rise as you breathe in. Try to get this piece to rise as high as you can. Usually, there is a marker placed by your doctor that tells you how big of a breath you should take. A smaller piece in the incentive spirometer looks like a ball or disc. Your goal should be to make sure this ball stays in the middle of the chamber while you breathe in. If you breathe in too fast, the ball will shoot to the top. If you breathe in too slowly, the ball will stay at the bottom. Hold your breath for 3 to 5 seconds. Then slowly exhale. Take 10 to 15 breaths with your spirometer every 1 to 2 hours, or as often as instructed by your nurse or doctor. On Tue, May 10, 2016 at 11:39 AM, 'Icandoallttc' via CMLHope wrote: Hello all I pray that everyone is good today and just wanted to let you know I am really sick with a sore throat and flu. I had my flu shots and never get the flu after receiving them. I was wondering if any of you have taken antibiotics while sick and on chemo. I am taking amoxicillin and Clarimicin. Thank you guys for all your wonderful support. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" g
Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so
Jeanie, thinking of you and hoping you feel better soon. I agree with others here, please act swiftly and see your doc. If you do need antibiotics you can get on them sooner verses later...it seems like once something gets through our immune systems, it's harder to recover because of the meds...you take good care and keep us posted. Love, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, May 10, 2016 8:41 pm Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so Hi Jeannie, Sorry to hear this. You like I am immunocomprimised and that is probably why your flu like symptoms are persisting. As far as antibiotics go if in fact you are suffering from a viral infection then antibiotics are probably useless however if your suffering from a bacterial infection then antibiotics will usually work, but I would suggest that you run it by your doctor. He or she will probably take a culture to see exactly what is going on and will know what to treat you with. By the way sometimes it takes more then a few days to grow the culture so it will probably be a good idea to act on it ASAP. Do you know what a Spirometer is? Read below, and believe me it really works. It will help keep your lungs clear. I use it anytime that my lungs are having any problems. I hope that you start feeling better. 18's, Marty How to use an Incentive Spirometer Sit up and hold the incentive spirometer. Place the mouthpiece of the incentive spirometer in your mouth. Make sure you make a good seal over the mouthpiece with your lips. Breathe out (exhale) normally. Breathe in (inhale) SLOWLY. A piece in the incentive spirometer will rise as you breathe in. Try to get this piece to rise as high as you can. Usually, there is a marker placed by your doctor that tells you how big of a breath you should take. A smaller piece in the incentive spirometer looks like a ball or disc. Your goal should be to make sure this ball stays in the middle of the chamber while you breathe in. If you breathe in too fast, the ball will shoot to the top. If you breathe in too slowly, the ball will stay at the bottom. Hold your breath for 3 to 5 seconds. Then slowly exhale. Take 10 to 15 breaths with your spirometer every 1 to 2 hours, or as often as instructed by your nurse or doctor. On Tue, May 10, 2016 at 11:39 AM, 'Icandoallttc' via CMLHope wrote: Hello all I pray that everyone is good today and just wanted to let you know I am really sick with a sore throat and flu. I had my flu shots and never get the flu after receiving them. I was wondering if any of you have taken antibiotics while sick and on chemo. I am taking amoxicillin and Clarimicin. Thank you guys for all your wonderful support. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails
Re: [CMLHope] Prayers are offered.
CPK doubled in the last two months to 700. Monoclonal protein they had been tracking for the last two years is up...BCR abl will hopefully be a good result... Then we plan from there... Marty, I just went to the national Bone Marrow Transplant Survivors conference this weekend...I went as the caregiver and helper to my best friend who is now 2.5 years out and struggling with graft vs host. I went to 9 seminars and met lots of people ..wow...so humbling, inspiring, overwhelming...and I thought of you.all those years agobefore all these advances have been made.hope you are feeling better...I know you will stay positive, and strong..I am thinking of you.. and Jeanie, the session I went to on faith, spirituality and illness was right up your alley...you and many other's here.. also did a nice piece on yoga and meditation, complementary medicines, nutritionpain management, sleep issues...etc..etc..really well done weekend. and the importance of not getting lost in our heads, in fear, and ruminating...but instead, staying anchored, and reaching out so we are not in isolation Thinking of all of you.. Love, Beth 18's.. -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Tue, May 3, 2016 12:12 pm Subject: Re: [CMLHope] Prayers are offered. What are the changes in your blood work if u don't mind sharing Beth?I have several things out of range but just slightly. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope wrote: Beth, yes, a long time since you've posted. Please let us know your results. Sending prayers and hugs. Marcie Sent from my iPhone On May 2, 2016, at 2:05 PM, bkbarney via CMLHope wrote: Thank you Richard for your kind words and prayers. They are always so appreciated. You are such a stable presence here. I so appreciate your thoughts and help. I hope everyone is navigating the best they can. Know that I think of all of you often...haven't written much because of my own journey...I am sorry if I missed out on communicating with those who are struggling recently. All of you are in my heart. I do BCR abl next week..so please keep your fingers crossed. I have more anxiety about this one for some reason... My basic blood work shows some changes that are in the wrong direction...hopefully things are stable in the CML realm. Will keep you posted.. Much love and 18's, Beth -Original Message- From: Richard H To: CMLHope Sent: Sun, May 1, 2016 11:11 pm Subject: Re: [CMLHope] Prayers are offered. Thank you. Richard On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote: Just one thing to say Richard H. Your like the rock of Gibraltar. 18's to you! Marty On Sat, Apr 30, 2016 at 12:07 AM, Richard H wrote: I am sorry to hear about all the problems everyone is reporting. I am lifting prayers for healing to those with problems and for the caregivers prayers of understanding and strength to help them be the support they want and need to be. I am just coasting with all my problems and trying to deal with lower strength because of them. I have changed a couple of Doctors because they started practicing too far away. They have reviewed my records and have updated me on things that I don't remember being told about and clarified some things that were given as side inference. I am also adding a new heart med and will be monitored to see if I need to change others on my list. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to th
Re: [CMLHope] Prayers are offered.
Thank you Richard for your kind words and prayers. They are always so appreciated. You are such a stable presence here. I so appreciate your thoughts and help. I hope everyone is navigating the best they can. Know that I think of all of you often...haven't written much because of my own journey...I am sorry if I missed out on communicating with those who are struggling recently. All of you are in my heart. I do BCR abl next week..so please keep your fingers crossed. I have more anxiety about this one for some reason... My basic blood work shows some changes that are in the wrong direction...hopefully things are stable in the CML realm. Will keep you posted.. Much love and 18's, Beth -Original Message- From: Richard H To: CMLHope Sent: Sun, May 1, 2016 11:11 pm Subject: Re: [CMLHope] Prayers are offered. Thank you. Richard On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote: Just one thing to say Richard H. Your like the rock of Gibraltar. 18's to you! Marty On Sat, Apr 30, 2016 at 12:07 AM, Richard H wrote: I am sorry to hear about all the problems everyone is reporting. I am lifting prayers for healing to those with problems and for the caregivers prayers of understanding and strength to help them be the support they want and need to be. I am just coasting with all my problems and trying to deal with lower strength because of them. I have changed a couple of Doctors because they started practicing too far away. They have reviewed my records and have updated me on things that I don't remember being told about and clarified some things that were given as side inference. I am also adding a new heart med and will be monitored to see if I need to change others on my list. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] To Susan Zimmerman
Dear Kate, Sorry it has taken a a little while for me to write to you, but I want to welcome you to our groupalong with all the others here, it is a very special place to give and receive support...so do stay close, and hopefully, we can all continue to learn from one another...regarding your question..I was diagnosed at 48, and several others here are younger than me, so I am not sure if your skin conditions are related to age verses medication side effects or/ and toxicity...I know that sometimes changing doses helped as long as CML is managed well...also, sometimes, if it is in response to a new medication uptake it can be an allergic response, or even an auto immune response..which sometimes is helped with short term steroids..of course they can cause their own side effects..as it is medication induced, the rashes, raised bumps, even large red raised look like acne but are not...areas, are a part of the side effect profiles of several of the cml meds...I would keep working with your doc around this, don't hesitate to ask questions, like has he or she ever seen this before with gleevec etc...??Has it been successfully been treated on others???with what??? Take care, my best, 18 s Beth -Original Message- From: kathy walls To: cmlhope Sent: Tue, Mar 29, 2016 12:42 pm Subject: Re: [CMLHope] To Susan Zimmerman Hi all, I am real new to the CML world only 14 months out from diagnosis. I have learned a lot from reading posts here. It's been helpful. My dr is a CML dr and I've had very good results medicine wise but he has no answers for side effects Specially bad acne break outs. All he says it's because I'm on the young side to have developed CML. I'm almost 57. Been seeing a dermatologist but results have been minimal. Anyone out there got any suggestions? I'm taking 200mg daily of gleevec. Was on 400 of tasigna which was hell on earth. Anything would be helpful. 18's Kate Sent from my iPhone On Mar 28, 2016, at 9:51 PM, 'Susan Zimmerman' via CMLHope wrote: Marcie, So glad the gall bladder settled down. I give our God ALL the credit for that! So sorry to hear about your husband's issues as well. Is he doing ok now? Not sposed to take turns at the hospital. How will you ever get in a vacation? Blessings at Passover time. Love, Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Saturday, March 26, 2016 'Marcie Goodman' via CMLHope wrote: Thanks, Susan. I missed an appointment for blood labs because my husband was in the hospital and having complications from his medical issues. No one to blame but myself. The pain on side has gone so at least for now I'm not going to worry about it. I'll be following up this week with my doctor for more labs and tests. So glad you are doing well. This is the season for miracles and I wish you and Roy and the family a happy and very blessed Easter. Marcie Sent from my iPhone On Mar 24, 2016, at 5:25 PM, 'Susan Zimmerman' via CMLHope wrote: So sorry to hear about a hospital stay. These are not places we want to hang outlow red cells does not sound good, but I'm sure you have great docs. Was that low a gradual thing or quick? Seems they should or could have caught it before you bottomed out if it was gradual. I sure hope it turns out the gallbladder is fine. He still heals today so I'll pray! You could have gotten time off work in an easier way, I'm sure. Hope you gets lots of extra tlc and consider this part of it!!! You are special to me and many others on here! Keep us updated!!! 18's and fight on, Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 24, 2016 'Marcie Goodman' via CMLHope wrote: Susan, as always, I have you and Roy in my prayers. Please let us know how your test turns out. I just got out of hospital because my red cells bottomed out and I became very sick. So some transfusions and several days later, just came home. I will be undergoing more tests, might have gallbladder problem which arose after I was discharged, naturally! Ultrasound tomorrow. Never dull but always interesting! Marcie Sent from my iPhone On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope wrote: Thanks for the encouragement. I may write him but not confident he would have any different answers. Dr. Jessica Altman is completely on top of things for me. I"ve been to two other specialists at Nwestern to dig into causesnothing unusual except cavernous malformations turns up. Have checked everything at least three times over the yrs. So again off meds hopefully for a long time unless #'s go high. Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!! Hope all is well with you! Susan F. Zimmerman "All who humble themselves before the
Re: [CMLHope] Re: An update
Dear Suzieq, Thinking of you with your momplease try to remember to take care of yourself while taking care of others...our hearts of with you...warmest regards, Beth. -Original Message- From: Shannon L To: CMLHope Sent: Tue, Apr 5, 2016 4:47 am Subject: [CMLHope] Re: An update Hi Suzieq Sorry to hear the news of your Mum and also hope your readings stay low or 0 take care Best wished Shannon Levanos On Tuesday, April 5, 2016 at 4:11:37 AM UTC+10, Suzieq wrote: Hello CML survivors: just wanted to tell everyone my recent life changes. I had my check up back the end of January & it showed a .01% positive. I didn't freak out, after 12 years, I expect this up & down roller coaster. As my doctor keeps telling me, that's a very minute number & you can live a long life with that number. The big change came about three weeks ago. My 87 yr. old mother was dx'ed with Lymphoma of the Red Blood Cells. She quit all treatment & asked to come home & let nature take its course. So, I am here in Florida being her caregiver for now. I find it ironic that her brother had Multiple Myeloma, (died in late 90's), I have CML, & now Mom has Lymphoma. Could there be a pattern unfolding here?? Makes one wonder, doesn't it! She also has an autoimmune disease of her platelets. We are just trying to keep her comfortable as possible. So far, she's just weak. Doesn't eat enough to keep a bird alive. Not sure how much longer she will have, but we are making every moment count. Thank you, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My March UPdate
Great news Richard! I am so happy for your news! Beth -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sun, Mar 27, 2016 9:08 am Subject: Re: [CMLHope] My March UPdate Yes and yahoo!!!'blessings My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Mar 27, 2016, at 1:30 AM, Richard H wrote: I received my BCR-ABL report today with good news. My count was down to .001%. I am still taking a CBC weekly and take Procrit most of the time to build back my hemoglobin. In my CML world of 14 years, remaining at a low consistent count is a Hallelujah or YIPPIEE!!! In this religious season of the year, I wish blessings to each one of my CML friends. 18's Richard H. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Re: Dizzy all day
Dear Marty, So glad you are out of the hospital! And Peg, you are so right about what you said to Jeanie...Hope everyone is doing as well as possible. Thinking of all of you...love, and 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope To: peg Cc: CMLHope Sent: Fri, Mar 18, 2016 11:19 am Subject: [CMLHope] Re: Dizzy all day Thanks Peg, You are so right. I was reading the side effects of ponatinib and i was thinking I have to take this??! Well yes I do and blood clots and heart problems are right up there high on the list. My potassium tends to be high also and you can get heart problems from that. Just have to fight on and thanks again. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Mar 18, 2016, at 12:00 PM, peg wrote: Hi Jeanie, I was traveling on business this week and just checked in and am wondering if you are feeling better? I had to caution another cancer patient recently not to write off sudden changes as normal...caused by treatment, age, etc. The new generation of meds to treat CML and other cancers can have side effects that can be deadly if not caught in time. Sprycel was a really good example of this. Prior to the FDA warning that it can cause deadly pulmonary hypertension no one was paying attention to folks that were already on it. When one of our CML warriors started feeling weak and dizzy, even her doctor dismissed it, for months, until she collapsed and woke up in the cardiac care unit. She almost died, and had a long road to recovery. Her spreading the word saved other lives! Everyone should know their meds, know what the symptoms are of the dangerous side effects and alert their doctor if those symptoms present. It doesn't hurt to tell the doctor you are concerned it is a side effect of your meds, you would be surprised how many doctors are not familiar with the side effects of the meds they are prescribing! I think those of us living with cancer or any other chronic disease are kind of stoic and don't whine a lot...but sometimes we should. Note to Marty...since I am sure you are reading this...you are in my prayers!! Fight on, Peg -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Hey, what happened to everyone?
Hi Sherri! Glad to hear from you. I hope they get to the bottom of the swelling for you...Lymphedema clinic might be a good idea...they can even teach you some home massage things to do to try and reduce the swelling..but finding the source first seems like the best idea..hang in there...I will keep you in my thoughts and prayers that the swelling abates soon! Warm regards, !8's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Mar 2, 2016 10:11 am Subject: Re: [CMLHope] Hey, what happened to everyone? Hi Sherri, That's very strange that none of those diuretics haven't worked, who knows maybe your a "late bloomer" so how long were you on them? And are you elevating your legs when you sleep? How about your salt intake? I also drink some seltzer water during the day and it seems to help me. No soda or anything that has any sugar or salt, even if it says that it is sugar free. I also have these diabetic socks that really help but you mentioned that your legs were very swollen so that probably won't work. Have you tried a lymphedemas clinic? One of my friends uses one and they usually wrap your legs in special pressure bandages and even though it may be an ongoing problem at least it works. You may also want to try some Ace bandages when you go to sleep but at first try not to make then to tight. I hope that some of these suggestions may free you into helping you along. Good luck, 18's Marty On Wed, Mar 2, 2016 at 4:20 AM, sherri swanson wrote: Hi Marty, My doctor put me on Furosemide 20mg & potassium as I have low potassium to begin with, and at 20mg it did nothing. SO of course, he increased it to 40mg and still nothing. He switched me to a different drug Spironalactone, generic for Aldactone and still no trips to the bathroom and the swelling did not abate. My legs are just stubborn. So that is when all the testing started and current I am not on any diuretic as none of them have produced a result. Strange huh? Leave it to me to be difficult. But with all the other medical issues I have some not so common, the doctors are doing a bunch of tests with the hopes of find the culprit. I have to tell ya, I would welcome a run for the bathroom about now. LOL😁 Anything to get rid of this excess water. As always, your input is most welcome. Cheers, Sherri On Tue, Mar 1, 2016 at 10:12 PM, 'judy' via CMLHope wrote: Hello This is Judy I forgot my password s I ave to wait till some one writes all is good t this end we got about a foot of snow and its beautiful Just love it. Have been off Gleevec for a few years and stillgoing Good Keeping up with blood tests because of other things buT all is Good with the counts. Take care and if you want some snow come and get it HAha JUDY On Monday, February 29, 2016 10:00 AM, Marty Gartenberg wrote: Why the silence? I miss everyone. 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, s
Re: [CMLHope] Re: Hey, what happened to everyone?
Norm, it is so nice to hear from you and get caught up! I am so glad to hear that you are still holding your own with ...Tasigna..that is great news Elevel years So sorry about the death of your cousin. sounds so hard and sad... and that your Hans is sick...that is a heart breaker as wellglad he is being spoiled rotten by his parents Happy you got to go cruising!!! Sounds wonderful...do keep in touch with us here!!! I miss Millie and Zavie too... Take good care, love and care, 18's Beth. -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Wed, Mar 2, 2016 10:30 am Subject: Re: [CMLHope] Re: Hey, what happened to everyone? Hi Norm and so happy to hear from you. I miss our Tasigna group. I lost my remission last year and am now on Ponatinib. It has my blood doing good with few side effect. That foot problem can hurt!!! Rub a lot of castor oil on it and soak in Epsom salts. I had the heel probably a few years ago and it lasted for 2 years. Put a castor oil pack on at night. I haven't been able to cruise lately and miss it. We are planning a Christmas cruise if my health holds up. Do you hear from our Tasigna group?? Sounds like you are doing great!!! I'm glad your eyes are better. Stay in touch and yes, I sure miss Millie Love My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Mar 1, 2016, at 8:16 AM, Norm wrote: I am still alive and kicking but one of my kickers is giving me fits. I think it is plantar fasciitis. I haven't posted in awhile and miss Millie may she rest in peace. Jeanie is my cruise mentor and my wife and I along with a few other friends just got back a couple of weeks ago from a 7 day cruise to Jamaica, Cayman, and Cozumel. We were busy with one of my cousin staying here quite often while he was being treated for stage 4 Melanoma, he passed and is walking with Jesus now. Way too young and such a very good person. My beloved dachshund, Hans, turned 12 yesterday. About a month ago we were given the devastating news that he has lymphoma. I never knew it would be so difficult to have to deal with the knowledge that one day, much sooner than expected, I would have to ease his way to a comfortable ending. I dread this as he was my buddy and comfort while I was recovering from my relapse of CML. He is being spoiled even more than ever now and will be until that time comes. Millie would understand. April 1st will mark 13 years since my diagnosis and the start of Gleevec. As some know, I relapsed and Gleevec no longer worked. I was fortunate enough to get in the clinical trial for AMN107 during the phase 1 study. As you can tell, it worked but not before I entered blast and was one very sick puppy. I believe that one night the angel of death came for me and for some reason let me stay. All I know is Dr Kantarjian tells me to thank God and I do. My son has finished his tour of duty with the USMC and has been discharged as a Sargent with the Achievement medal. We are extremely proud of our son, and our daughter who is still teaching photography to high schoolers. I have been training my replacements at work so I can eventually retire. I am ready but they are not.lol.. My macular degeneration is stable and I have not had any shots in my eye for almost 6 months. Still legally blind and that will not change during my lifetime I suppose. I have been playing a lot of golf with my younger brother and we are having a great time together. He is a good brother that will come and pick me up and take me golfing even if it means spending the whole day with me. Life is good. This past December marked 11 years that I have been on Tasigna. I have never been undetectable but it is generally only a few cells in 10 thousand. I will try to check in more often but life has been keeping me so busy. Blessings to all Norm On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote: Why the silence? I miss everyone. 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You
Re: [CMLHope] Hey, what happened to everyone?
Sounds like overall pretty good news Jeanie. How is the side pain? 18's and hugs, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Mon, Feb 29, 2016 6:35 pm Subject: Re: [CMLHope] Hey, what happened to everyone? Hi Jeanie, Good to hear that your counts were good, and don't worry about your platelets or WBC. It all works out in the wash. My WBC was two weeks ago 1.8 and last week it was 2.1 So like I said it all works out in the wash. As far as faith and pills go, yes the faith always works out but which one of the pills that I take about 63 of them a week can I count on for bringing me the combination of both faith and those pills? Well I do have to say that without most of them my new kidney would shrivel up and reject, so I guess that your absolutely right. You see Jeanie I learned a valuable lesson from you😃 18's Marty On Mon, Feb 29, 2016 at 7:32 PM, Marty Gartenberg wrote: Hi Jeanie, Good to hear that your counts were good, and don't worry about your platelets or WBC. It all works out in the wash. My WBC was two weeks ago 1.8 and last week it was 2.1 So like I said it all works out in the wash. As far as faith and pills go, yes the faith always works out but which one of the pills that I take about 63 of them a week can I count on for bringing me the combination of both faith and those pills? Well I do have to say that without most of them my new kidney would shrivel up and reject, so I guess that your absolutely right. You see Jeanie I learned a valuable lesson from you😃 18's Marty On Mon, Feb 29, 2016 at 5:53 PM, 'Icandoallttc' via CMLHope wrote: Hi Marty and everyone, I hope everyone is good. My blood was good last check up. Platelets were a little lower than I like: 177. WBC was higher than I like: 9. However I am thankful for Ponatinib for putting me in remission once more. Faith and pills. God bless My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Feb 29, 2016, at 10:00 AM, Marty Gartenberg wrote: Why the silence? I miss everyone. 18's, Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cml
Re: [CMLHope] Info update
Dear Susan, Thank you for the kind words. As I just read Jeanie's post...and Marty's, and yours and Jon's, .etc...I feel blessed that we all have access to good docs, who seem to care a lot..even if they cannot always solve or figure out what the problems are..(Jeanie's pain).and that we have each other...companions on this journey,I am beyond grateful for each one of you... Jeanie, I so hope they can figure out where this pain is coming from and help ease it for you... It's miserable to always walk in pain like that...although you have a great attitude as always. Jon, wow...no blast phase...I am relieved for you and happy that your counts are coming down... seems like you are well watched over...hope you are on your feet and feeling better very soon!!! and Susan, so glad you are smothered in love and valentines by your sweetie...at the end of the day...somehow, I think that is what sustains us... love, and hope for another day of loving...of hoping for a cure, or just a "good" day...I think everyone here knows what that means... and Marty...I wish you respite from the enormous trials you have been going through...that you continue to send positive uplifting emails that make us hold hope...well, it's awe inspiring.. my best friend is now two and a half years out post bone marrow transplant...she still struggles mightily with graft verses host...but has a resiliency and endurance that always astounds, inspires and humbles mestill..she has her good days and her "darker days" as she calls them...she just wrote a lovely piece on Lent..wish I could find a way to share it with you..it's on a private bloganyway,it was about the darkness and the light, choosing to go without something for 40 days...and then return to it...with deeper appreciationso I am focusing on what I do have, rather than what I don't as for my check inthe New Year has been a hard one for me thus far, filled with insurance challenges, actually nightmares..but at least I have insurance..so my BCR-ABL was pushed back three weeks so I have never gone so long without..but will do one in March. Back on sprycel for 7 weeks now. more muscle fatigue and weakness than ever before... I had to go on steroids for my back, and thus try the CPK lowering steroid protocol as long as I had to start them anyway..but went off after ten days because of side effects to serious to continue.so CPK remails very high, muscle wasting, and the desire to be active and feel stronger, gets overshadowed by the pain and fatigue in my body...so, that's the truthbut... my goals, which are hard when one feels so shitty, are to exercise more, eat super healthy, lose some weight, say my prayers, and try and find ways to help myself feel better.staying positivejust staying positive and hopefully will see Dr. Druker in the near future. Big hug and love to all of you reading out there..whether you post or notI hope you feel the community's love and support. 18's Beth . -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Mon, Feb 15, 2016 3:14 pm Subject: Re: [CMLHope] Info update Hi Susan and all, Good to hear your uplifting voice of hope and love. I had my annual checkup with my PCD today. Every thing is pretty much the same. I Had blood drawn and will get the results tomorrow. Also they found some nodes on my lungs a few months ago so I will do a chest X-ray tomorrow. I have no trouble breathing so I don't think anything is wrong. Pain is still bad but I'm hoping they can find the cause soon. I hope every one is good tonight. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Feb 13, 2016, at 3:27 PM, 'Susan Zimmerman' via CMLHope wrote: Dear Beth and Marty, Sweet Beth is one of my inspirations, in case you didn't know. I pray all is well with you?! We need an update. Happy Valentine's Day. Marty, I sure hope your dire circumstances have improved this week, even just a tiny little bit. A tiny bit is to rejoice over! I love all you guys so much, and we truly are family. Happy Valentine's Day and get your wife something special. Jeanie, I sure do hope your side pain is better, too. Even just a tiny bit! That V.Day will lift your spirits and that you know you are loved! Jon, I'm expecting good results for your next testing. I've gotta go soon myself to find out if my numbers are staying low. Happy Vday! The rest that we haven't heard from latelykeep in touch with us! I don't read posts every day, but will eventually! So far I've gotten a birthday balloon, a big neat card, and many kisses and vows of love from my hubby. Oh, also flowers! We've been celebrating for two weeks. e-cards are so easy to
Re: [CMLHope] Info update
Dear Marty and Susan, Just a note to thank you for your posts, and for keeping us informed so we can stay connected, and keep you both in our hearts and prayers. You both have been through so muchyet your attitudes and spirits really are remarkableI think your faiths seem to play an important role. Thanks for being inspirations to us... happy V day to all...stay warm..where ever you are... warm hug18's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 12, 2016 8:29 pm Subject: Re: [CMLHope] Info update Susan, Susan what am I to do with you? you are so sweet and for this. I have no doubt that everything will turn out well for you and your family just as is has been doing for me, Shelly and our children. I'm sure that you can imagine everything that I have been through and also so have you. I also see that you are using 18"s as you end all of your posts. Do you know why? Because we and a lot of others share something. Life 18's again. Marty On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope wrote: Dear Marty, So sorry to hear about the mouth sores and low wbc. UGH!!! We are all rooting for you to beat this problem with immunity ASAP. You are not complaining, just stating a reason for us to pray for you! If we don't know about it we can't zero in on it in intercessory prayer. You've got my prayers and I know those of everyone on here who prays to the most High God.. Two trips to Chicago have so far found nothing really wrong with my blood that would cause the stroke. This time they know it's from the bosulif, but waiting for results from the MRA and MRI that also happened. So I'm enjoying time off the TKI, and living life to the fullest every daY. EVERYONE have a wonderful Valentine weekend, please. If ya don't have a sweetie, know that you can treat yourself better than usual for the occasion! (Bubble bath, massage, favorite meal, etc. just for you). The rest of ya try to take good care of your significant other! (Of course don't fall for the media's need to spend lots of money...lol) Heartfelt love and 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 12, 2016 4:04 pm Subject: Re: [CMLHope] Info update Ok, let's see what happens at your next blood test. I just had one this morning and sorry to say my WBC was only 1.87 so that puts me having a problem with immunity but I know that it is coming from the CMV virus that I am having so I have to be very careful until the reduced medication starts to work again. In the mean time I have gotten some terrible mouth sores just like I got when I had the bone marrow transplant caused by all of the Chemo and radiation. Something that I will never forget. Believe it or not that was by far the worst part of it. However I just try not to complain about it. And do you know why? I'm still alive today. And now you know what 18's stands for... Life! So I bid you many more 18's. Marty On Fri, Feb 12, 2016 at 5:49 AM, John Barrons wrote: Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a cbc a week this Tuesday. John Sent from my iPad On Feb 12, 2016, at 6:59 AM, Marty Gartenberg wrote: Hi John, What are your WBC now? I know a man who lives in Canada a very long time ago actually more then 35 years ago and he never took any TKI's but he did take something and it did "burn out his Leukemia" but unfortunately he has to have blood transfusions I think every two weeks. He is the longest surviving person in this world. I probably am in there as well logging in going on 27 years after having a bone marrow transplant. Different people react to different things and sometimes some of them defies the logic of these things that are just meant to be. Hey you seem to be one of them👍 Good luck to you! Remember what 18's stands for. Marty On Thu, Feb 11, 2016 at 8:01 AM, wrote: I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a week to keep the counts low. the counts do fluctuate from time to time. There does not seem to an answer for the white blood cells to have increased so suddenly. My oncologist did not think it was a change to blast phase. So I go once a week or once every two weeks to check them. John B. On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg wrote: Hi John, First let me say hello to your wife, and believe me I personally know what she has been going through. Now what I can't understand why your white blood count went over 100,000. And what pill have you been taking? Usually you need to be taking more then 1 pill and that should be every day. So John I am really puzzled. I wish you as well as your wife the very best, because of mainly what you wrote. Yes, life is good. If you have been reading any of my posts I always end th
Re: [CMLHope] Info update
So glad you are back home John! What an ordeal...I hope and pray that you get better and better and regain your strength and the weight you want to to feel healthy and strong. Glad the CML is under control...and still with one pill a week...wow! Take good care of yourself. I am, sure your sweet wife is happy to have you home again... 18's and my best, Beth -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Thu, Feb 11, 2016 2:23 pm Subject: Re: [CMLHope] Info update Hi John and I felt like something was wrong as we hadn't heard from you. I'm glad you are back home and cml is good. Have you had a pneumonia shot. I got mine many years ago and a booster when I was in the hospital a few years ago. I am still on 1 15 meg pill daily. You are the first person I ever met that only takes 1 pill weekly so that is why Marty was wondering. That was a long hospital stay. Was that all for the pneumonia? Give your wife good wishes from me and hang in there. My Motto: Faith and Pills❤️ With Jeanie 18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Feb 10, 2016, at 7:45 PM, John Barrons wrote: > > Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was > not feeling very well. My oncologist said if I felt worse go to emergency, > which I did on Dec 26. I had pneumonia and as I result my heart was having > trouble. In addition, my white blood count went over 100,000. I was in > hospital until Jan 16 when I was transferred to a rehab centre to gain back > some strength. I arrived back at home last Saturday, so glad to be home I > can't begin to say. All is well as far as the things that were wrong. Mind > you I have to gain a lot of weight back. The leukemia is back to normal and I > am on 1 pill per week. That was along time to be away and I was difficult for > my wife also. Life is good John B > > Sent from my iPad > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Just wanted to check in with folks I remember
Thanks for the update Peg..I am glad that things sound a bit more stable for you...I do understand about not wanting to share with others if your road is hard so as to not scare us, ..but truly, each of us is unique, and our bodies respond very differently to treatments..so, please don't worry. Getting good support is also key to quality of life, as it's a lot less lonely...and together we can persevere... I am so sorry you have had to go through all that you didI hope and pray that it somehow gets easier for you...wow...2 years at zero is marvelous, but the price you have paidI don't have words for that..except you are so resilient, so amazingtake good care and know that you are cared for and loved here... 18's, love and hugs, Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Feb 2, 2016 2:24 pm Subject: Re: [CMLHope] Just wanted to check in with folks I remember Peg, that was my Aunt's name. Anyway, don't be a stranger. All of us that have CML are in the same boat but taking different drugs. I've been on Gleevec 16 years 1 month, yes their are side effects but done that I can't handle. Cramps are the worse but I'm still here driving my wife crazy and she love's every second of it :) greenie club member #48 In a message dated 2/2/2016 1:55:33 P.M. Eastern Standard Time, peg@live.com writes: Hi all, Thought I would check in today...it has been a while. I see lots of new names, but still a few that I remember. I am now two years at zero detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage. It got a bit rocky for a while, not from the CML, but along that course they diagnosed me with five other, assume-ably unrelated, cancers including skin, gastric, thyroid and lungs! While I never lost my hope, I didn't wanted to dim anyone else's hope by sharing news from my scary corner. However, as of last month, all cancers are regressing, some we know for certain are also due to Tasigna, and well, the others they are not sure why, so I choose to believe it is also because of the Tasigna...and faith! I am battling some malnutrition issues that were from a severe reaction I had to Gleevec when I was first diagnosed six years ago, but now knowing what those are we are slowly making improvement towards gaining back a quality of life.You can never underestimate the value of quality of life! I hope you are all finding your own quality, never give up on that. You are never far from my thoughts and prayers! Six years and still here! Fight on!!! peg -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] rob's message long ago
Dear Rob, Deeply sorry to hear about your mom's death. thinking of you..and sending you healing peaceful thoughts as you move through the beginning of your grief...take good care...Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Tue, Jan 19, 2016 11:39 am Subject: Re: [CMLHope] rob's message long ago Dear Rob, So sorry to hear of your father's passing. I'll remember you in my prayers. Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Marty Gartenberg To: cmlhope Sent: Mon, Jan 18, 2016 6:12 pm Subject: Re: [CMLHope] rob's message long ago Rob, I'm sorry to hear about your father. Now I am kind of confused you mention that your mother had or has CML? 18's, M wrote: I wanted to let all of you in the CML group know that my father Robert Wood Neill has passed away. Many of you who are long term members know that the CML group was started many years in the days long before Gleevec when my mother Laquita was diagnosed with CML. In a message dated 1/16/2016 7:39:14 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Richard H. I agree, well said. I started Gleevec the first week in Janurary 2000 16 years ago and I'm still pumping blood. Of course the way these people drive here in Southwest Florida it's like driving in the Indy 500 with blindfolds on. greenie In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time, rbhuffm...@gmail.com writes: Marti it is good to hear your (voice) and see you here. I agree with you and Jeanie. I'll start my 14th year the first of March with this wonderful group of loving and caring friends. This history we give can only be given thru leadership of having been there fighting the fight. But leadership always needs a significant special leader (General, Admiral) too narrow our path so that we can win the current battle. Thanks for keeping us looking up to the sunrise of a new day and helping wash away all the doubt, fear, and other dark thoughts that detract us from fulfilling this life we have on Planet Earth. 18's Richard H. On Friday, January 15, 2016 at 6:03:03 AM UTC-6, Icandoallttc wrote: Hi Marty and good to hear from you. We were wondering what happened. I believe the founder and narrator of this group is Rob. His mother had leukemia. Are you there Rob??? Most of us have been here a long time. I believe the group was once a yahoo group. We are all warriors and help each other when we can. This makes my 12 th year and I joined the group early on. And yes we are all leaders in our own way and pioneers with the tkis so that've can give our knowledge to the new warriors. I fight with faith and pills and I am a Christian. Much love. 💋😇❤️💝💗 My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Jan 13, 2016, at 12:38 AM, Marty Gartenbergwrote: For some reason my message did not come out so I am trying it once more, I do hope it does come through This is directed to Sandi and everyone else. Dearest Sandi, and I really mean that, but for a very special reason. It is not the words that I wright but it is my meaning. You and everyone else here are only here because all of us are meant to be here. Am I strong well maybe I am or I probably wouldn't be here right now. My question to you and everyone else that may be reading this are you also strong. You know what? You have to be because you are battling an awful disease, but my friends just like me am I still here, and are you. You bet we are. So no matter how strong I may be and no matter how strong any of you may be, guess what? We are still here together and until "uncle GOD" determinants otherwise this is where we stay. How many times have I been at deaths door? Now look at what you have. You have life, just as I do and do you know why it's really very simple because about a bit more then a decade ago some mortal man discovered a pill that changed the course of your lives. You, all of you are living proof. So I am not what anyone thinks about me because your living proof just as I am we are all strong in spite of what you think. Am I a leader of this group perhaps I am,
Re: [CMLHope] Re: stroke
Susan, you are a strong and amazingly positive woman...I am so sorry this happened..but trust you will heal.I think it's so hard to know what to do..regarding dosages and changing meds.trust your own knowing about your body and your own knowing about what may work best for you.. Much love and healing energy... Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Wed, Dec 30, 2015 11:50 pm Subject: Re: [CMLHope] Re: stroke Dear all, Just a note to say I'm in my local hospital. It did turn out to be a small stroke which started last Sat. In morning I will learn if 2nd cat svan showed the bleeding stopped. Prayers are appreciated. I am agitated w myself for agreeing to up the bosulif when my numbers increased just a little. If I had followed the doc's suggestion of an even higher dose I would be dead now. After 10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for several months...dont need another one! God is in charge...Jeannie, without pills this time lol. You all mean so much to me. I'm feeling fine now. God bless and stay safe on new year's eve! Thanks for yr. prayers. 18's and love, Sz Sent from my Sprint phone -- Original message-- From: Myvety2k via CMLHope Date: Wed, Dec 30, 2015 3:34 PM To: cmlhope@googlegroups.com; Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
