[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.
Re: [CMLHope] Update on Marty G
Dear Jeanie, I had the same reaction about Marty's passing and was imagining how many others reacted or acted to the news. My heart goes out to you as you struggle with this pain and thyroid problem. You know Who is in charge. Lean into Him and He will give you peace. We are all in the same group here to lift each other up and keep on fighting, as Marty showed us so many times. Let's only get closer as those who feel a nudge about sharing will give us an encouraging word. Blessings and 18's, Susan Z -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Mon, Nov 12, 2018 9:26 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 adjust the rod, and add a plate. After having more therapy, a MRSA infection was discovered in the incision wound. He also contracted pneumonia. In order to combat the infection, he had a third surgery on the incision to perform a debridement of the wound and was put on course of several antibiotics. He was admitted to the ICU to be treated for the complications of the infection. Unfortunately, all of this became just too much for him to take. While he did show improvement medically, and eventually went from the ICU into a regular hospital room, he was in a lot of pain, which got progressively worse each day all over his body, and discomfort from the effects of the antibiotics. Eventually, he began denying his food and medication and reached a point where he did not want to continue to fight. Moving to hospice was a painful decision to make, especially knowing how much of a fighter my Dad was through all of the struggles he's been through in his life. But, those were his wishes and
Re: [CMLHope] Please answer to see if I’m getting my mail
Hey Greenie! I come also on Dec. 5th to see Dr. Altman in Chicago. Let's meet up again! I am also scheduled to see Dr. Kumthekar, a neurologist right around the same time that day. Mine is around 1:00 Chicago time, so let's discuss privately. Right now I am going out of town for two weeksbe back after Thanksgiving. I have seen so many docs lately with severe pain in lower back and this essential tremor. Also just got put on insulin for diabetes. Very small dosage. None are really related to cml, but they keep me hopping. I fell off the chiropractor's table on Monday and really bruised and scraped myself up good on my left side. Keeps life interesting! Sorry I am in a hurry this morningwill catch up with you all very soon! Thinking about you all 18's and love, Susan Z -Original Message- From: myvety2k via CMLHope To: cmlhope Sent: Thu, Nov 8, 2018 7:46 am Subject: Re: [CMLHope] Please answer to see if I’m getting my mail Jeanie, That's a yes on Sebring. Slower way of life, to much crime, to many hit and runs, to many people, can't drive anywhere without someone trying to run you off the road, cutting in front of you, etc. The list is long. I have nothing against snow birds but when they come down to Fort Myers and the beach is near they just take over everything. A ride to Lowes in the summer time takes 5 min. winter its takes 15 to 20 min. because of so many cars. It was time to move and NOW I can go Bass Fishing. greenie -Original Message- From: 'Jeanie' via CMLHope To: cmlhope Sent: Wed, Nov 7, 2018 1:18 pm Subject: Re: [CMLHope] Please answer to see if I’m getting my mail Hi all Good to hear from you. Has anyone heard from Marty? Do you like Sebring Greenie? This thyroid disease is getting me down. I want to sleep all day and wake up around midnight. It’s awful!!! Pray that I will get it straightened out soon Have a safe trip Greenie and I hope you can get together with Beth. Love you so very much. 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 6, 2018, at 3:29 PM, bkbarney via CMLHope wrote: 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
Re: [CMLHope] Bosulif and high blood pressure
Hi Ann, I have slightly elevated blood pressure and am on bosulif (very low dose...100mg every other day). Also take lisinopril 20 mg every day. It keeps me normalized. Just fyi. I sincerely hope your mom can find the right dosages. Prayer applied, too! 18's, Susan F. Zimmerman On Friday, July 27, 2018 'Jeanie' via CMLHope wrote: Hi Ann I have high blood pressure. I’ve been in tki for years. I have tried all the blood pressure pills with no luck. They all make my heart hurt. He is probably under a lot of stress. Try yoga and other calming exercises. They help some. 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 26, 2018, at 12:47 PM, Ana Burgos wrote: Anyone on Bosulif is getting high blood pressure? Since my mum started Bosulif she has gone to emergency 3 times with very high pressure! -- -- [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] Fantastic cabin.
Beautiful!!! So glad yoy're enjoying. Susan F. Zimmerman On Saturday, June 9, 2018 'Jeanie' via CMLHope wrote: 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 -- -- [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
What a great picture of you and your watermelon! Thanks for the beautiful pics of your vacay. Never been there! We go to the Shenandoah mountains every couple of years ourselves. Seize the day, Jeanie! Love ya and 18's, On Friday, June 8, 2018 'Jeanie' via CMLHope wrote: 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 -- -- [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. Susan Z. -- -- [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] New Canary hatchings
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 to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. <0602181651_Burst03.jpg><0602181651a_Burst01.jpg> -- -- [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 receivin
Re: [CMLHope] Peppers
Hi Jeanie and Marty and all, Just ckg. in since been absent awhile. Loved the pepper picture but you can have them all! My eyebrows start sweating just looking at them! So thankful it's finally spring. Worked outside for 2 hours with hedgetrimmers and pulled all kinda muscles trying to do it. Got so much work to do outside. Little by little. Is that inch by inch it's a cinch? Not sure they are talking about yard work thoughlol My numbers were good 3 months ago...another test coming up next week in Chicago. All good. I read an article today published from the UK that said an antibiotic and gleevec mixed is a cure. Never heard of the antibiotic but sounds interesting. Will ask my specialist next week. Couldn't retrieve the article when phone rang, etc. Jeanie I pray your pain has let up. So glad Marty got to do the cruisin...and was not on the ship where pipes broke. And thankful no flu broke out on the ship! Enjoy every day as if it's your last, even tho of course it's not! Thankful I am in Indiana instead of Fla. for next 6 months! Blessings everybody, Love and hugs, On Monday, May 7, 2018 Marty Gartenberg wrote: Hi Jeanie, Nice picture, but it's to bad that you have to post it under the circumstances. What i mean is that they aren't hear today standing with you in that picture. Although my farther once taught me that when a loved one passes on then they are still always with you especially in your mind and those that love you and everyone in your family. Yes i do miss my parents, and brother and sister. She was the one that donated the bone marrow for me. We were only eleven years apart. My brother was four years older then me and when he past is was like the head of the family suddenly was gone. Very sad story but i know that they are still in me... Jeanie, you mention that it takes a stick of explosives to get you going? Well at one time it also did for me but then i discovered that i may have been full of S**T😁 Humm am I getting to be a dirty old man? 18's, my dear Jeanie. Marty On Mon, May 7, 2018 at 5:11 AM, 'Jeanie' via CMLHope wrote: Hi Marty Hehe that’s funny me I’m just the opposite. Takes a stick of dynamite to get it working. I discovered miralax and finally found something that works. Anybody else have that problem? I read somewhere you are supposed to go after each meal. Good luck with that. 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 May 4, 2018, at 5:10 PM, Marty Gartenberg wrote: Hi Jeanie, Again your pictures just amaze me, but i am not into HOT things.👿 If i ever eat any of them i will get up from sleep and dig into my bottle of magic flavored Tums or Rolaids, and depending on how hot it is i will usually run myself to the Porcelain Princess and bow my head and give her a shot of... Well you know what. Me and hot just don't get along. 18's, Marty On Fri, May 4, 2018 at 7:17 AM, 'Jeanie' via CMLHope wrote: Hi all Just picked peppers. I’m going to pickle them for hot sauce. Growing up my mom kept a bottle of green pepper hot sauce on the table. We sprinkled it on our collard greens and other greens my dad grew fresh. Yummy. 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 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.goog
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 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
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.
Re: [CMLHope] anemia
I am on bosutinib for over 2 years now. There are absolutely no side effects except diarrhea. This can be controlled with medicine. I am happy to be on this drug. 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, January 25, 2018 Jamie Tufariello wrote: On Friday, December 22, 2017, Ana Burgos wrote: Hello, my mum is suffering from very low hemoglobine and very low iron. any of you happen the same? another question is what do you think about bosutinib, after 14 years in gleevec the doc. is thinking of changing to bosutinib what about side effects comparing it to gleevec? thanks in advance . -- -- [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] Stating
Thanks for answering, Jeanie. Was reading abt. your terrible side pain and doc cutting you offso maddening! I feel so bad for you and angry with these docs. Know i am praying for you. 18's and love, Susan Z. On Monday, December 25, 2017 'Jeanie' via CMLHope wrote: Hi Susan and no I never could take statins or blood pressure meds. Hurts my heart. I read where mustard is good for you and it had tumeric. I love mustard so I'll increase it. One thing I can be thankful for is Ponatinib leaves me with few side effects but it is so dangerous a drug to take. Blood clots and heart attacks. God is taking care of me for sure. I take 1 aspirin daily with my chemo. If you read the side effects of Ponatinib you would wonder why they are worried about what else you take. Have a fun New Years. 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 22, 2017, at 5:19 PM, 'Susan Zimmerman' via CMLHope wrote: Hi Jeanie! Was wondering if you are on a statin drug for high cholesterol. Every statin drug causes achy joints in varying degrees for people. This is the biggest side effect of statin drugs. I refuse to go on them. Was on lipitor for awhile until I did some research. But of course everyone can do their own thing. I also take turmeric (a simple spice) with pepper combined to keep my inflammation in general down. It is very effective. Without something in pepper that helps the turmeric digest, you are wasting your turmeric. It does not absorb into your body without it. Everyone fights inflammation for one reason or another. Just a tip. Also fighting essential tremors and other things, besides the cml. Beginning another new drug today to help tremors. In reference to Marty saying we can all feed ourselves, pee, etc. Funny, but I am trying to learn to eat with my other hand because I shake too bad with the usual hand. S thankful I am somewhat ambidextrous! But typing has become a problem. Did I mention I am so thankful I can pee, sleep, chew food, walk, talk and especially laugh? My husband makes sure of that. Have wonderful holidays and enjoy every day!!! Thanks Marty for making us all laugh!!! 18's, Love and prayers, 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 Friday, December 22, 2017 'Jeanie' via CMLHope wrote: Hi all, Have you considered Moffitt cancer center. I go there and like it. You go to the blood center and get your blood checked and then in about an hour they are faxed over to doctor and you see him. I go every three months. I was wonder if any of you have your bones aching? My right little finger and hand ache and legs hurt sometimes at night. I've been fighting cml for almost 14 years and never had this. Blood counts are all good. Thanks 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 Dec 21, 2017, at 6:56 PM, Marty Gartenberg wrote: Listen Greenie, This is what i do because of a promise that i once made to GOD. Let me tell you about this. When i was about to receive my total body radiation almost 30 years ago, just before they were about to close and lock that radiation chamber door i got down on my knees clasped my hands in front of me and prayed to GOD asking HIM if he would spare me i would help people that were in my situation that i would try to help them. So far i have helped 1,286 people in the past 30 years, and wrote my journal about each and every one of them. This will never be published because of confidentiality reasons, but on occasion i will send some of them parts of my book in order to try and help them. Listen i am no saint just a plain human being but someone that once made a promise to GOD and i am still here after many many death defying things that i have gone trough. And that is why i do what i promised to do. I hope that you understand why i do what i do... There is also why i write 18's when ever i end any posts that i make, because that is what i believe. 18's to me represents LIFE. If you care to send me your personal email address i would like to send you something. Mine is wa2yyx@gmail,com 18's, Marty On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope wrote: Marty, I want to thank you for your fast reply, I hear you. I do have a Nephrologist and he had me get some blood work last month and he seems to be O.K. with the results. I do have the paper work and will scan it and send it out so you can check it out. I want to thank you so much, you ha
Re: [CMLHope] Questions,
Hi Jeanie! Was wondering if you are on a statin drug for high cholesterol. Every statin drug causes achy joints in varying degrees for people. This is the biggest side effect of statin drugs. I refuse to go on them. Was on lipitor for awhile until I did some research. But of course everyone can do their own thing. I also take turmeric (a simple spice) with pepper combined to keep my inflammation in general down. It is very effective. Without something in pepper that helps the turmeric digest, you are wasting your turmeric. It does not absorb into your body without it. Everyone fights inflammation for one reason or another. Just a tip. Also fighting essential tremors and other things, besides the cml. Beginning another new drug today to help tremors. In reference to Marty saying we can all feed ourselves, pee, etc. Funny, but I am trying to learn to eat with my other hand because I shake too bad with the usual hand. S thankful I am somewhat ambidextrous! But typing has become a problem. Did I mention I am so thankful I can pee, sleep, chew food, walk, talk and especially laugh? My husband makes sure of that. Have wonderful holidays and enjoy every day!!! Thanks Marty for making us all laugh!!! 18's, Love and prayers, 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 Friday, December 22, 2017 'Jeanie' via CMLHope wrote: Hi all, Have you considered Moffitt cancer center. I go there and like it. You go to the blood center and get your blood checked and then in about an hour they are faxed over to doctor and you see him. I go every three months. I was wonder if any of you have your bones aching? My right little finger and hand ache and legs hurt sometimes at night. I've been fighting cml for almost 14 years and never had this. Blood counts are all good. Thanks 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 Dec 21, 2017, at 6:56 PM, Marty Gartenberg wrote: Listen Greenie, This is what i do because of a promise that i once made to GOD. Let me tell you about this. When i was about to receive my total body radiation almost 30 years ago, just before they were about to close and lock that radiation chamber door i got down on my knees clasped my hands in front of me and prayed to GOD asking HIM if he would spare me i would help people that were in my situation that i would try to help them. So far i have helped 1,286 people in the past 30 years, and wrote my journal about each and every one of them. This will never be published because of confidentiality reasons, but on occasion i will send some of them parts of my book in order to try and help them. Listen i am no saint just a plain human being but someone that once made a promise to GOD and i am still here after many many death defying things that i have gone trough. And that is why i do what i promised to do. I hope that you understand why i do what i do... There is also why i write 18's when ever i end any posts that i make, because that is what i believe. 18's to me represents LIFE. If you care to send me your personal email address i would like to send you something. Mine is wa2yyx@gmail,com 18's, Marty On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope wrote: Marty, I want to thank you for your fast reply, I hear you. I do have a Nephrologist and he had me get some blood work last month and he seems to be O.K. with the results. I do have the paper work and will scan it and send it out so you can check it out. I want to thank you so much, you have made me feel so much better and I will listen to what you wrote me. Again I want to thank you. Greenie In a message dated 12/21/2017 11:31:29 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, First of all, you mention that you are worried. Why may i ask are you so worried? When people worry about things that they have little or no control over then it not only effects your mind but also your body. I know all about this because that is exactly what i used to do and i learned to direct my mind in more productive ways. Now just try to relax and get yourself going in the right direction. Now you mention about CRI so read this.. CRI (color rendering index) is a measure of how accurately a light source illuminates objects' true colors. Our LED lights have CRI values of up to 98, indicating that our LED lights are able to produce white light that approximates halogen or incandescent lighting and natural daylight. It however has some effect on your kidneys because if they are having problems than it is a very simple thing to just go to a Nephrologist and see what is happening and why. As you mentioned the normal Hemoglobin cou
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.
Re: [CMLHope] Well wishes
So thrilled that infection is gone, Marty! No place like home. And yes, I would also like that recipe! Love and 18's, Susan Z On Sunday, November 26, 2017 Joyce Mesnarich wrote: 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 - You received this message becaus
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.
Re: [CMLHope] Please I need your help
Sorry, don't think I ever heard this man's name. God bless you Marty, and all are in my prayers. Don't anybody wear themselves out on Thanksgiving. Keep away from today's goblins, they may spook you! "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 We are very near a cure! Going to Northwestern tomorrow for my 3 month testing. So happy for you, Beth! Give thanks, Susan Z -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Mon, Oct 30, 2017 9:50 pm Subject: 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. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CM
Re: [CMLHope] Right hand numb
Hi All, Jeannie, in response to your question. I was on gleevec 400 mg for 2 yrs...then my face and arm went numb while I was in a doc's office- taking someone else for their appt. I was ambulanced across the street to the hospital. After many visits to neurosurgeons, they could only come up with cavernous malformations on my brain. They should not cause strokes. It was not the blood clot type of stroke, btw. At that point in 2007 I went off all meds for cml. I decided better to let numbers slowly rise than die or drool from strokes. So thank God my vision returned to normal and hearing after 3 mos. I did have another stroke in 2010 without being on a tki. I was exercising at the time. I stayed off meds for 7 years. They tell me at Northwestern I have pinpoints of blood in all parts of my brain. They are just waiting to burst. I must tell you i tried all of the tki's except ponatinib and they all gave symptoms of stroke. In bcr/abl tests i stayed below 10 for those yrs. Until 2014 when I agreed to get on bosulif at only 100 mg. a day instead of standard 400 mg. All went fine and I was blessed to stay undetectable. Then in Dec. Of 2015 my numbers jumped just a bit. Still under 1.0 but I agreed to go up to 200mg a day. 10 days later I had another stroke. No major damage remained. I stayed off bosulif for 8 months. Now I take 100mg every other day. So far so good! Sorry for such a long letter. Thanks to my blood buddies for all yr. prayers. You do have mine! Jeanie, sure hope the elbow adjustment will right all the wrongs! Another gentleman wrote that this corrected his problem. We hope!!! You always have a great attitude, Jeanie. 18's Susan f. On Monday, October 2, 2017 'Jeanie' via CMLHope wrote: Hi Susan and thanks Can you explain how you went through your stroke? Thank you ❤️❤️❤️❤️ 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 9:57 AM, 'Susan Zimmerman' via CMLHope wrote: 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 ar
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.
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://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.
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 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 competent nurse, and she wheeled him over. Although this man was unable to prop himself up to see the outside because he had recently had his Spleen surgically removed, he tried but finding it was just impossible. The next day came, and he again tried and although he was in a great deal of pain he managed to very slowly prop himself up and peer out of that most appealing window. He was absolutely shocked at what he was able to see, or to put it another way, what he was unable to see. There was nothing
Re: Re: [CMLHope] Words OF WISDOM.
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 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 competent nurse, and she wheeled him over. Although this man was unable to prop himself up to see the outside because he had recently had his Spleen surgically removed, he tried but finding it was just impossible. The next day came, and he again tried and although he was in a great deal of pain he managed to very slowly prop himself up and peer out of that most appealing window. He was absolutely shocked at what he was able to see, or to put it another way, what he was unable to see. There was nothing there but a brick wall! He wondered why that man would always tell him about what a beautiful world it was out there when in fact there was nothing but that brick wall. At about that time the nurse came in with his sponge bath. He immediately without any reservation asked her why the man would always tell him about what was happening outside when in fact he wasn't able to see anything. The nurse then told him that he was correct. The man who had been by that window was in fact not able to see anything because he was blind. The man then realized that the other man was trying to make him feel good, and try to become we
Re: [CMLHope] Gleevec
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 house and 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 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 l
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 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
Hello and welcome back Ken! Congrats on becoming a grandfather. It's a great experience, eh? I have four, only two of which are still children. Glad you are still in the battle. Whatever the outcome, we win the war! Susan F. Zimmerman On Tuesday, August 8, 2017 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.
Re: [CMLHope] Stopping Gleevec
Dear Greenie, I do sympathize with you so much about losing your son. I remember when you had to go to the funeral without your lovely wife. It must have been very hard on her, too. They say grief has no definite time frame. Praying for you. So glad we were able to meet in New Carlisle that time. You helped Roy and I with the shortcut through chicago. Love ya more later Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, August 7, 2017 Myvety2k via CMLHope wrote: Thank you for the info Susan, hope all is well with you. I'm still waiting for a call from them to let me know what they plan to do for me. I'm sure I will here from them within a week or so. I'm hoping for the best after over 17 years in their study. For all you know I may be the last of the 8 that started in the study, I asked one time but they won't tell me. I can make it their ever 6 months but it would be hard for me every 3 months as my blood work here at Quest is free with Humana. The only reason I moved to Florida because they made the change to once a year, Grace and I just could not take the cold weather any more it was very hard on both of us. She had a stroke in Sept. of 2015 and then when Derek passed away June 13 of last year within 10 min. she had a heart attack after we found out. So I went to the funnel by myself. I'm still having a very hard time dealing with him gone their's not a day that goes by that I think about him. Very sad. I still can't look at a picture of him without breaking down as they say time heals all wounds I'll just have to wait. Thanks for the info. greenie In a message dated 8/6/2017 9:15:20 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their. greenie In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. 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 Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec.. Last week I received a call telling me that for me to receive the drug
Re: [CMLHope] Stopping Gleevec
Greenie, I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u get your medicine. A lot less expensive to go there!!! Blessings, Susan F. Zimmerman On Sunday, August 6, 2017 Myvety2k via CMLHope wrote: Jeanie thank you I wait and see what happens if things don't work out for me I will go their. greenie In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hey Greenie, I would like to suggest Moffitt cancer center here in Tampa. They will do everything to help you to get your meds. It's where I go and they have saved my life twice. They accept Medicare and medicate assignment. If you need help with copayment a there is a cancer copayment company called PSI. They paid my copayment for several years. You just need to start making calls and get the ball rolling. However I pray they keep sending the meds. You and I have been fighting this for years. I go to dr Balducci head of senior oncology center in Moffitt but the head of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of Drs meeting for bloodwork right at hospital and by the time you meet your dr your blood work is done for him. Every three months they do a PCR. They have vallet parking. Praying for you. 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 Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope wrote: Hi Rien, I started a study the first week in Jan. 2000 at Northwestern Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 and stopped Gleevec for 26 days because of sinus infection and the Doctor at home put me on an antibiotic which made me sick so I stopped for those 26 days. Then I started up again and had my blood work done at Northwestern and started on a trip out west. My Cancer Doctor called me while driving and said," David your blood work showed that their are cancer cells back in your blood". I told him remember I quit for 26 days and he replied that's right I forgot, did you start Gleevec again I told him yes and he said " well if it worked before it will work again and hung up and I never heard from again. I later received a letter from him that he moved on to a different Hosp. in New York, NY. and that was the end of that. So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to get my blood work see my new Doctor pick up my drugs and be on my way home. But instead I was told their no longer a study and you won't be getting the drug any longer. That took my breath away. Before I left they then told me that they changed their mind and would give me the drug and 7 month supply and would sent the rest later because they were short on Gleevec.. Last week I received a call telling me that for me to receive the drug that I would have to fly in every 3 months, that's not going to happen with the cost of flights, car rental, etc., not with my income at 78 years old. They called me last week and they are suppose to have a meeting and let me know. When I started this study their were 8 of us out of 200 people nation way and that I would receive the drug STI571 for as long and I could tolerated it or stay alive. Well that changed. I am waiting for a phone call and I'm afraid it's not going to be good news, So, my question is should I take a chance and stop the drug and get blood work in 3 months and see was happens with my blood count? I am a basket case waiting to see what happens. If you have some answers please let met know. Thank you, David (greenie) Greenberg South Fort Myers, Florida In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, rien16...@gmail.com writes: Hello! I stopped taking Gleevec after 13 years. I had my checkups every month, but only in the first year. In the second year every two months and from now on every three months for the rest of my life. It seems that everybody reacts in a different way. I myself had more bonecramps after having stopped than while taking Gleevec; but after the first year it gradually went better and now I have these cramps only a few times per year during the night. The swallen eyelids completely disappeared and unfortunately, my face became a lot thinner. Another side-effect: my hair was not grey anymore after havinig stopped, it is still dark, which was not the case before. After all I am glad that I took the decision, the problems of the first year will disappear, so I strongly advise you to do like I did. Feel free to contact me for further information. Greetings from the Netherlands - and
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic
Great great GREAT word, Greenie!!! 18's, 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, May 31, 2017 Myvety2k via CMLHope wrote: Hi Susan, If I were to pick a word it would have to be "LOVE" that's something that everyone needs. greenie In a message dated 5/31/2017 12:07:37 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hi Marty and Jean, I am glad your word is "blessed", Jean. Sorry I forgot to mention that in the last email. I often use that word, too! We really are all blessed every day. I belong to a couple of other groups that are not nearly so positive. I try to encourage! Marty, your word is "watch". With the description about reminding you of waking up every day, that is perfect!!! Richard, I wonder if one word could be a motivational word that has personal meaning for you throughout the remainder of the year. To think of it often and be encouraged by it! What is your word? I think we heard from Greenie, too. What's your word for the year? Mine was picked in January. It is "DELIGHTED", and I wear it imprinted on a bracelet around my wrist. It reminds me to be delighted with life, as there are so many good and great things along the journey. How bout all those others out there who haven't picked a word that will always get you closer to your purpose? Just watched The Fugitives as a comedy on netflix. Nick Nolte and Martin Short w James Earl Jones took my mind off my pain. I recommend it. Thanks for letting me share. Hope your holiday was great and the wind is always at your back! Also that your pain is minimal and energy is abounding! 18's, Susan Zimmerman Xoxoxo Praying for you. On Monday, May 29, 2017 'Jeanie' via CMLHope wrote: Hi Marty. Glad you are good. The watch sounds wonderful! Happy Memorial Day to all. Yes you are special and we are all a special Group of cml Warriors. I read this recently and it touched me. I don't even know if I will wake up tomorrow. I do know if my pain is managed I will sleep Well. I Need to keep myself in the here and now. So happiness to all and give us a line now and then. 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 Apr 21, 2017, at 11:15 AM, Marty Gartenberg wrote: Hi Susan, Very good on your necklace reminding you of your health and happiness of whatever you want it to remind you of. Yes, i think that would be a good idea and everyone could take part in. Now saying that, i would like you to hear what my choice is... I needed a new watch and when Shelly (my wife of 41 years) went on a cruise with me several weeks ago because it was right on our anniversary. We went to St Thomas and I bought her some very nice jewelry and she asked me what i also wanted. So not being a vain person i mentioned that it is okay i don't really need anything. But in my mind i did want a special watch that no one carried in St Thomas but i knew it was available in the U.S. It is a watch that looks like a bracelet with a black polished stainless band but you can't tell that it is a watch until you push a little button on it's side and then it's led's light up. Push once for the time, twice for date and month and three times for seconds. In fact i just purchased a second one in polished silver stainless. And do you know why i did it? Well they both remind my that time keeps going on and i am still alive every time that i push that little button on it's side. Now, am i unusual? Perhaps, but it is the thing that makes me really happy to know that is the reason that keeps me going... Unless of course the battery goes bad, and that is for what the second watch is for. 👋🖖 18's, Marty On Fri, Apr 21, 2017 at 9:51 AM, 'Susan Zimmerman' via CMLHope wrote: I am still here, too. I'm on fb more than email. All is well, waiting for my bcr/abl test results. Praying for all you wonderful people. Enjoy each day. I wear a bracelet most days that has "Delighted" imprinted on it. That reminds me to be delighted in God every day of my life. What is your chosen word for the year that will remind you to be positive at all times? Would love to hear the responses. Hang in there, Susan F. Zimmerman On Friday, April 21, 2017 'LadyRx' via CMLHope wrote: I'm still here, too! I was wondering where everyone went! Hopefully, everyone is healthy and just taking a break! Greenie, in case you are taking Ibuprofen (for arthritis and pain) you should let your doctor know. He or she might want you to discontinue it. It drastically lowers ki
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic
Hi Marty and Jean, I am glad your word is "blessed", Jean. Sorry I forgot to mention that in the last email. I often use that word, too! We really are all blessed every day. I belong to a couple of other groups that are not nearly so positive. I try to encourage! Marty, your word is "watch". With the description about reminding you of waking up every day, that is perfect!!! Richard, I wonder if one word could be a motivational word that has personal meaning for you throughout the remainder of the year. To think of it often and be encouraged by it! What is your word? I think we heard from Greenie, too. What's your word for the year? Mine was picked in January. It is "DELIGHTED", and I wear it imprinted on a bracelet around my wrist. It reminds me to be delighted with life, as there are so many good and great things along the journey. How bout all those others out there who haven't picked a word that will always get you closer to your purpose? Just watched The Fugitives as a comedy on netflix. Nick Nolte and Martin Short w James Earl Jones took my mind off my pain. I recommend it. Thanks for letting me share. Hope your holiday was great and the wind is always at your back! Also that your pain is minimal and energy is abounding! 18's, Susan Zimmerman Xoxoxo Praying for you. On Monday, May 29, 2017 'Jeanie' via CMLHope wrote: Hi Marty. Glad you are good. The watch sounds wonderful! Happy Memorial Day to all. Yes you are special and we are all a special Group of cml Warriors. I read this recently and it touched me. I don't even know if I will wake up tomorrow. I do know if my pain is managed I will sleep Well. I Need to keep myself in the here and now. So happiness to all and give us a line now and then. 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 Apr 21, 2017, at 11:15 AM, Marty Gartenberg wrote: Hi Susan, Very good on your necklace reminding you of your health and happiness of whatever you want it to remind you of. Yes, i think that would be a good idea and everyone could take part in. Now saying that, i would like you to hear what my choice is... I needed a new watch and when Shelly (my wife of 41 years) went on a cruise with me several weeks ago because it was right on our anniversary. We went to St Thomas and I bought her some very nice jewelry and she asked me what i also wanted. So not being a vain person i mentioned that it is okay i don't really need anything. But in my mind i did want a special watch that no one carried in St Thomas but i knew it was available in the U.S. It is a watch that looks like a bracelet with a black polished stainless band but you can't tell that it is a watch until you push a little button on it's side and then it's led's light up. Push once for the time, twice for date and month and three times for seconds. In fact i just purchased a second one in polished silver stainless. And do you know why i did it? Well they both remind my that time keeps going on and i am still alive every time that i push that little button on it's side. Now, am i unusual? Perhaps, but it is the thing that makes me really happy to know that is the reason that keeps me going... Unless of course the battery goes bad, and that is for what the second watch is for. 👋🖖 18's, Marty On Fri, Apr 21, 2017 at 9:51 AM, 'Susan Zimmerman' via CMLHope wrote: I am still here, too. I'm on fb more than email. All is well, waiting for my bcr/abl test results. Praying for all you wonderful people. Enjoy each day. I wear a bracelet most days that has "Delighted" imprinted on it. That reminds me to be delighted in God every day of my life. What is your chosen word for the year that will remind you to be positive at all times? Would love to hear the responses. Hang in there, Susan F. Zimmerman On Friday, April 21, 2017 'LadyRx' via CMLHope wrote: I'm still here, too! I was wondering where everyone went! Hopefully, everyone is healthy and just taking a break! Greenie, in case you are taking Ibuprofen (for arthritis and pain) you should let your doctor know. He or she might want you to discontinue it. It drastically lowers kidney function. Have a nice weekend, all! 18's Lee On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups  Topic digest View all topics Fun thing to do - 8 Updates Fun thing to do myvet...@aol.com: Apr 20 08:14AM -0400 Hi Group, is anyone home. Their seems to no posts anymore? I noticed that my name is off Zavie's list and he gave me number 48 and it's gone. Hope all is well with everyone. greenie
Re: [CMLHope] Digest for cml...@googlegroups.com - 8 updates in 1 topic
Ah, Richard! I am getting reports of kidney not as healthy as it used to be, also. Sz Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, May 29, 2017 'Jeanie' via CMLHope wrote: Hi Richard and good to hear from you and all. I get pcr every 3 months. Very good reports So staying positive. Prayers 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 Apr 21, 2017, at 11:52 PM, Richard H wrote: Yes. I have had to discontinue all over the counter because of my starting of kidney problems. Most of us long timers of these heavy duty medications are doing damage while we are taking them. I took a heart med for 20 years that was 2x the recommended dosage and Gleevec (15 years) has also contributed to the damage. But I am doing the best I can for the shape I'm in. All my various Dr.s are giving me great reports the last month. Blood work is Great, Kidney's are staying about the same. I will be taking the the big blood test in the next week or two. I am to get the results May 23. Spring has sprung, flowers blooming, nose dripping, and all is well. Richard H. On Friday, April 21, 2017 at 6:34:40 AM UTC-5, Lee wrote: I'm still here, too! I was wondering where everyone went! Hopefully, everyone is healthy and just taking a break! Greenie, in case you are taking Ibuprofen (for arthritis and pain) you should let your doctor know. He or she might want you to discontinue it. It drastically lowers kidney function. Have a nice weekend, all! 18's Lee On Apr 21, 2017, at 6:13 AM, cml...@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups  Topic digest View all topics Fun thing to do - 8 Updates Fun thing to do myve...@aol.com: Apr 20 08:14AM -0400 Hi Group, is anyone home. Their seems to no posts anymore? I noticed that my name is off Zavie's list and he gave me number 48 and it's gone. Hope all is well with everyone. greenie In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, pksc...@gmail.com writes: For 32 years. I commuted two hours each day in the Toronto traffic (exposure to benzine) and then sat in front of a computer terminal all day long (prolonged exposure to electromagnetic radiation). Had I known then, what I know now, I would have chosen a healthier occupation. Also, in my younger years, I used leaded gasoline to wash the grease off my hands after working on my beat up cars. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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. Marty Gartenberg : Apr 20 09:02AM -0400 Hi Greenie, I'm still here, in fact i am always here. I think that everyone is not posting because of the holidays and are busy at this time of the year. So, how are you doing? I hope that you are doing well. Ever since my accident i have been trying to recover but it is a very slow process. I broke my neck in three places as well as my arm and shattered my elbow. I was in a coma for many weeks and when I finally got up to find i had hole in my neck connected to a respirator with my head in a sort of globe I didn't know what happened to me. They told me that i had plates, screws, nuts and bolts in both my neck and arm. Had to go to a nursing home and had months of therapy. But i am still still recovering. I gained a lot of being myself in these past nine months. I'm walking I'm talking I'm eating again and I am off of Dialysis and got a kidney transplant and a prostate operation almost two and a half years ago and being able to pee is very good. And the best part is that I can still drive my wife at night.😂 Even went on a cruise on March 26th, and our 41st anniversary was on March 28th while we were on the cruise. The way I look at things no matter what you go through, ain't life great! You bet it is! Remember I'm still pushing those 18's. 18's, Marty myve...@aol.com: Apr 20 11:42AM -0400 Wow, I didn't know about the accident. Well, I'm glad things are going better for you. I'm doing O. K. I'm at 41 on my GFR which is not great but the Doctor told me to keep drinking a lot of water and I've increased that also. I
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic
Hi Jeanie, No, never had a blister-like sore since getting cml. I have a lot of things come up that are blood drop looking things...and that"s what they are. Doc has said they are caused by cml. Even have them inside my mouth. Those I call blood blisters, even tho they don't hurt and go away by themselves. The ones on my skin are not blisters, tho. No pain and go away on their own. Hope this helps. Enjoy the holiday! I've been going for physical therapy for back pain caused by scoliosis and arthritis. Sure hope it helps, as the pain is no fun at all...I think it will! Gotta put brats on the grill 18's, Susan Zimmerman Xoxo to all On Monday, May 29, 2017 'Jeanie' via CMLHope wrote: Blessed. Pills and faith. Glad you are doing good. Got a question for the group. I had a blister like sore Come up on my back and it doesn't want to heal. Treating it with bacatracin but it's still hanging In there. Anyone have this during their battle? Good to hear from our group. 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 Apr 21, 2017, at 9:51 AM, 'Susan Zimmerman' via CMLHope wrote: I am still here, too. I'm on fb more than email. All is well, waiting for my bcr/abl test results. Praying for all you wonderful people. Enjoy each day. I wear a bracelet most days that has "Delighted" imprinted on it. That reminds me to be delighted in God every day of my life. What is your chosen word for the year that will remind you to be positive at all times? Would love to hear the responses. Hang in there, Susan F. Zimmerman On Friday, April 21, 2017 'LadyRx' via CMLHope wrote: I'm still here, too! I was wondering where everyone went! Hopefully, everyone is healthy and just taking a break! Greenie, in case you are taking Ibuprofen (for arthritis and pain) you should let your doctor know. He or she might want you to discontinue it. It drastically lowers kidney function. Have a nice weekend, all! 18's Lee On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups  Topic digest View all topics Fun thing to do - 8 Updates Fun thing to do myvet...@aol.com: Apr 20 08:14AM -0400 Hi Group, is anyone home. Their seems to no posts anymore? I noticed that my name is off Zavie's list and he gave me number 48 and it's gone. Hope all is well with everyone. greenie In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, pksch...@gmail.com writes: For 32 years. I commuted two hours each day in the Toronto traffic (exposure to benzine) and then sat in front of a computer terminal all day long (prolonged exposure to electromagnetic radiation). Had I known then, what I know now, I would have chosen a healthier occupation. Also, in my younger years, I used leaded gasoline to wash the grease off my hands after working on my beat up cars. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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 : Apr 20 09:02AM -0400 Hi Greenie, I'm still here, in fact i am always here. I think that everyone is not posting because of the holidays and are busy at this time of the year. So, how are you doing? I hope that you are doing well. Ever since my accident i have been trying to recover but it is a very slow process. I broke my neck in three places as well as my arm and shattered my elbow. I was in a coma for many weeks and when I finally got up to find i had hole in my neck connected to a respirator with my head in a sort of globe I didn't know what happened to me. They told me that i had plates, screws, nuts and bolts in both my neck and arm. Had to go to a nursing home and had months of therapy. But i am still still recovering. I gained a lot of being myself in these past nine months. I'm walking I'm talking I'm eating again and I am off of Dialysis and got a kidney transplant and a prostate operation almost two and a half years ago and being able to pee is very good. And the best part is that
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic
I am still here, too. I'm on fb more than email. All is well, waiting for my bcr/abl test results. Praying for all you wonderful people. Enjoy each day. I wear a bracelet most days that has "Delighted" imprinted on it. That reminds me to be delighted in God every day of my life. What is your chosen word for the year that will remind you to be positive at all times? Would love to hear the responses. Hang in there, Susan F. Zimmerman On Friday, April 21, 2017 'LadyRx' via CMLHope wrote: I'm still here, too! I was wondering where everyone went! Hopefully, everyone is healthy and just taking a break! Greenie, in case you are taking Ibuprofen (for arthritis and pain) you should let your doctor know. He or she might want you to discontinue it. It drastically lowers kidney function. Have a nice weekend, all! 18's Lee On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups  Topic digest View all topics Fun thing to do - 8 Updates Fun thing to do myvet...@aol.com: Apr 20 08:14AM -0400 Hi Group, is anyone home. Their seems to no posts anymore? I noticed that my name is off Zavie's list and he gave me number 48 and it's gone. Hope all is well with everyone. greenie In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, pksch...@gmail.com writes: For 32 years. I commuted two hours each day in the Toronto traffic (exposure to benzine) and then sat in front of a computer terminal all day long (prolonged exposure to electromagnetic radiation). Had I known then, what I know now, I would have chosen a healthier occupation. Also, in my younger years, I used leaded gasoline to wash the grease off my hands after working on my beat up cars. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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 : Apr 20 09:02AM -0400 Hi Greenie, I'm still here, in fact i am always here. I think that everyone is not posting because of the holidays and are busy at this time of the year. So, how are you doing? I hope that you are doing well. Ever since my accident i have been trying to recover but it is a very slow process. I broke my neck in three places as well as my arm and shattered my elbow. I was in a coma for many weeks and when I finally got up to find i had hole in my neck connected to a respirator with my head in a sort of globe I didn't know what happened to me. They told me that i had plates, screws, nuts and bolts in both my neck and arm. Had to go to a nursing home and had months of therapy. But i am still still recovering. I gained a lot of being myself in these past nine months. I'm walking I'm talking I'm eating again and I am off of Dialysis and got a kidney transplant and a prostate operation almost two and a half years ago and being able to pee is very good. And the best part is that I can still drive my wife at night.😂 Even went on a cruise on March 26th, and our 41st anniversary was on March 28th while we were on the cruise. The way I look at things no matter what you go through, ain't life great! You bet it is! Remember I'm still pushing those 18's. 18's, Marty myvet...@aol.com: Apr 20 11:42AM -0400 Wow, I didn't know about the accident. Well, I'm glad things are going better for you. I'm doing O. K. I'm at 41 on my GFR which is not great but the Doctor told me to keep drinking a lot of water and I've increased that also. I have blood work in Chicago on the first of June, see the Doctor, etc. Check in with my late son's wife and kids and then catch the last plane out of Chicago to Fort Myers. It will be a long day but I'll be doing just find. Creatinine is at 1.6 dropped from 2.02 so that's another plus. PLEASE be careful and take care of yourself. We all need you to solve all of our problems. Cheers, greenie In a message dated 4/20/2017 9:02:51 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Greenie, I'm still here, in fact i am always here. I think that everyone is not posting because of the holidays and are busy at this time of the year. So, how are you doing? I hope that you are doing well. Ever since my accident i have been trying to recover but it is a very slow process. I broke my neck in three places as well as my arm and shattered my elbow. I was in a coma for many we
Re: [CMLHope] Fun thing to do
I walked between 5 diesel buses for half an hour on a trip once, deciding which bus I should get on. Have always wondered about the benzene in the diesel fuel.not good. This was about a year before detection. 18's, Susan F. Zimmerman -Original Message- From: ANGELYN ESDERS To: cmlhope Sent: Mon, Feb 6, 2017 8:08 pm Subject: Re: [CMLHope] Fun thing to do I was a smoker. How many of us were smokers? One day at a supermarket I was in the direct line of fire when an old lady on a scooter hit a display of Javex. It splashed all over me.completely ruined my clothes...and I had to drive home on that VERY HOT summer day(two hr drive) in clothing soaked with Javex. Apparently it absorbs through the skin. I felt very ill the next day. I have always wondered.. I was cleaning calcium deposits off of seashells using CLR. It worked very well. I did not wear gloves. I have always wondered. Angie From: 'Jeanie' via CMLHope To: cmlhope@googlegroups.com Sent: Monday, February 6, 2017 6:08 PM Subject: [CMLHope] Fun thing to do Let's all make s list of all the things we were doing when we got CML. Things that we didn't normally do or that were done every day. Mine were: Exposure to pesticides Dental X-rays more than normal Donating blood Deep grief over loss of hubby Thanks group. 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] 39 years with cml
Yippie Kayay, whoohoo, whoohoo, and I remember Zavie. I've been fightin' this thing for 11 years myself. and another Yippie Kayay! 18's, Susan -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 3, 2017 8:32 pm Subject: Re: [CMLHope] 39 years with cml Susan, Sounds like you dialed 911 and that is what you got back .911%. I would like to remind you of what our friend Zavie used to say when something went right especially when that person got a good pcr/abl. He would shout out Yippi Yahooy and repeat it a zillion times. He was some type of guy and i really do miss him and his wife Ida... So Susan now it is your time... 18's, Marty On Fri, Feb 3, 2017 at 6:54 PM, 'Susan Zimmerman' via CMLHope wrote: Thanks, good to hear from you, Skip!!! Keep on keepin on... Great news everybody! Just got my numbers back from last bcr/abl. In the third month of taking bosulif at 100 mg every OTHER day, it is down to .911%. YAY, HAPPY DANCE, HOORAY, HALLELUHIAH, THANK GOD, WHOOPP, WHOOP WHOOP!!! I am praying for all of you to be well and enjoy every day. smooches, 18's, Susan F. Zimmerman -Original Message- From: skipd To: CMLHope Sent: Wed, Feb 1, 2017 7:04 pm Subject: [CMLHope] 39 years with cml /just want to say hi to all you cml'ers and to let you know I am still on the green side was talking to Marty he told me to get on In case you do not know me here is a place you can see but its not finished still have about 10 years still to enter http://easyskipcacom.coffeecup.com/index.html -- -- [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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] 39 years with cml
Thanks, good to hear from you, Skip!!! Keep on keepin on... Great news everybody! Just got my numbers back from last bcr/abl. In the third month of taking bosulif at 100 mg every OTHER day, it is down to .911%. YAY, HAPPY DANCE, HOORAY, HALLELUHIAH, THANK GOD, WHOOPP, WHOOP WHOOP!!! I am praying for all of you to be well and enjoy every day. smooches, 18's, Susan F. Zimmerman -Original Message- From: skipd To: CMLHope Sent: Wed, Feb 1, 2017 7:04 pm Subject: [CMLHope] 39 years with cml /just want to say hi to all you cml'ers and to let you know I am still on the green side was talking to Marty he told me to get on In case you do not know me here is a place you can see but its not finished still have about 10 years still to enter http://easyskipcacom.coffeecup.com/index.html -- -- [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] Disability and retirement
Dear Lee, You cannot collect disability and social security together. You get one or the other. Yes, he can apply now for disability and they will consider his medical condition and let you know. I got it at 62 because I went to apply for Soc. Sec. and asked about disability. I did have other things wrong with me that as a lump sum got me the disability without a lawyer or any extra help. I had strokes, diabetes, and the cml. Good luck in getting it! We went down to the SS office and applied in person with an appointment. Many blessings, Susan F. Zimmerman -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Thu, Feb 2, 2017 6:18 pm Subject: Re: [CMLHope] Disability and retirement Yes, and I'm still getting to this day. greenie In a message dated 2/2/2017 3:52:34 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Hi Greenie Did you still get your pension check? 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 Feb 2, 2017, at 11:35 AM, Myvety2k via CMLHope wrote: Hi Lee, I retired in 1995 at the age of 55. I worked for a close friend of mine at his Ford Dealership until I found out the I had CML two weeks before Xmas, that was 1999. My Cancer Doctor told my wife at that time to apply for SS and was approved within two weeks. At that time I was getting a pension check from the company that I retired from. By the way my Cancer Doctor wrote a letter to go along with my letter to SS. Of course things may have changed by now I'm not sure but give it a try. greenie In a message dated 2/2/2017 8:09:15 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Good morning to all. My husband, who was diagnosed with CML eight years ago, is newly retired. He won't be eligible for social security for another 3 years. Does anyone know if it is possible to collect disability during retirement? Also, when he is able to collect social security, will he be able to collect both? I would love your feedback and advice. Blessings and 18's to you all! Lee Erstein -- -- [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 a
Re: [CMLHope] My latest Blood test.
Hey Richard, Sorry to hear about your low counts. What a bummer!!! Glad your doc is going along with you, like mine does. I haven't been keeping up well with my emails. Every 3 days I delete about 500 if I don't go every day to computer, which I do not. Guess we both enjoyed our years without any medicine as a wonderful time in our lives. I am now back on bosulif only my doc is going along with me taking one every other day. I am so prone to strokes with the tki's that I felt I could stave off the build-up this way. I had another stroke in Dec. 2015 so went off bosulif for 10 months. Now the first two months' tests (bcr/abl) showed 8.88 and next month 3.06! We were thrilled. Love and pray for all you guys, 18's, Susan F. Zimmerman -Original Message- From: Richard H To: CMLHope Sent: Sun, Jan 29, 2017 11:58 pm Subject: Re: [CMLHope] My latest Blood test. Yes these are the 2 main drugs. Since I get mine from the VA and it is labeled Procrit/Epitien. That is better than having to try and keep up with transfusions every 3 weeks and spend 6 hours plugged into the wall. We saw the SUN most of the day for the first time in about 2 weeks. This new weather pattern we have is like living wintertime in Washington state. 18's Richard H. On Sunday, January 29, 2017 at 8:06:37 AM UTC-6, wa2yyx wrote: Good morning Richard, And your right, it is another morning and you and i are on the right side of the bed sheets. Sorry to hear about your problem concerning your . Boy do i know how you feel because when i had my dialysis my Hemoglobin was so low that at times i couldn't even get out of bed. I was given Procrit or Epogen and it brought my Hemoglobin up but it took several days. By any chance are on any of thees drugs? 18's, Marty On Sun, Jan 29, 2017 at 12:23 AM, Richard H wrote: My last blood test on Jan.17 came back stating my counts were so low they couldn't be reported. I am still fighting low Hemoglobin counts but I have been in much better control than I was 3 years ago.I am still taking a CBC weekly because when my Hemoglobin decides to drop it plunges down 1 to 2 points in that weekly period. So my preference is being observed instead of ONC's request of bi-weekly testing. The longest period without a shot is about 4 weeks and then it takes about 3 weeks to get it back up. But that is life in my CML world so not complaining just commenting. I awake in the morning thankful for another day. Then I prey all my fellow CMLers are having good new day also. 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] Got a brand new Hip!
Dear Susie-Q, So much has gone on with you! Nothing can replace your mom, and I'm so sorry for your loss. I am just reading this even though you posted a week ago. I get at least 200 emails a day so sometimes they don't get read quickly. But I always keep my cml group's emails for later. As you know I believe in the power of prayer, so will lift you up to the Father for complete healing in both hips. My husband has the same thing but he is using a natural product from Youngevity to rebuild his cartilage and it seems to be working. He has bad days, but is avoiding surgery with it. I hope your other hip doesn't give you any trouble - EVER 18's and hugs,. Susan Z -Original Message- From: 'Marcie Goodman' via CMLHope To: cmlhope Sent: Sun, Nov 27, 2016 9:30 pm Subject: Re: [CMLHope] Got a brand new Hip! Suzie, please accept my condolences on the loss of your beloved mother. I'm so sorry but I'm sure that your wonderful memories will be a comfort and blessing to you always. Marcie Sent from my iPhone On Nov 27, 2016, at 8:17 PM, Suzieq wrote: 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.
RE: [CMLHope] About John Hopkins Cancer Update
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 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] Check out MyNMs MyChart - Test Details
Great great news Blessings and 18's, Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Tuesday, June 7, 2016 Myvety2k via CMLHope wrote: Well Hi again, I think I got it right this time so I will try again. Page 5 I know about the test results just passing it on. greenie In a message dated 6/7/2016 10:12:34 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: O. K. that didn't work I will have to scan the reports to my computer then pass them on. Sorry about that. greenie In a message dated 6/7/2016 10:04:02 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: MyNMs MyChart - Test Details Hi Group, I received some results from Northwestern this morning from years passed and I have to clue what they mean. Marty or anyone please clue me in. Thank you, 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. -- -- [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] Pictures
I'm glad you got to see our doc, Greenie! Sorry it was a hard day... I bet today was better! How is all going? We are enjoying this spring seasonup here in no. Indiana. I"m struggling without medicine. Got a bad eye bleed Sunday and a rash. Then yesterday fell off a top step of a stepstool and am bruised and sore. So very thankful nothing broken. Had all kinds of suggestions on fb re. bubble wrap, etc. to keep me safe. A month ago my bcr/abl revealed 3.56. Been off med. since Dec. 28th. Took another blood test today. I have much to be thankful for and just laying kinda low for awhile. Dr. Altman is keeping in touch w me. I'm doing blood tests locally for awhile. Blessings and 18's, Susan On Thursday, June 2, 2016 Myvety2k via CMLHope wrote: Hi Group, Well I awoke at 3 a.m. to get ready to fly to Chicago to see Dr. Altman, get my blood work, etc. and fly home. But when I got to the airport 2 hours early their was a line of about 100 young people that were on their way to Washington D. C.. My plane came in 35 min. late after getting fuel we had mechanical problems and that put us behind. My appointment was at 10:15 and we arrived at 8:55 a.m. and my son picked me up and got me their on time. Saw the Doctor, got my blood work which came back O. K. and Derek picked me up and took me to the airport. Another 2 1/2 wait to get through. Got ready to take off put their was a head count problem. Let's say their was 100 people aboard and the paper work showed 99. We had to start over again and called each and every one to find out the problem and the computer didn't read the persons ticket right, so took of 55 min. late. Was up at 40 thousand feet and ran in to clouds and turbulence so we dropped down to 10 thousand feet and a much smoother ride. I used to be a private pilot and I can tell you it was like riding on a roller coaster. Well anyway he made up time on the way their but we ran into thunderstorms and lightning so we circled and circled and circled until we had to fly up to Tampa, FL. to refuel. More time lost, took off again for Fort Myers which took only 26 min. it's a 2 1/2 hour drive. Landed many hours late and instead of having my wife pick me up I took a taxi home for $36.00. They wouldn't let us text or call while we were on the plane so my wife was worried sick. She called Southwest to find out what happened and gave them a piece of her mind. So life goes on and I home tired but as the song goes on (I will survive). Was a fun day, greenie In a message dated 6/1/2016 1:34:18 P.M. Eastern Daylight Time, argo9...@gmail.com writes: HI KATHY, i'm Christina, from Greece. I'm 52 years old and i have been diagnosed in 2009 when i was 45 years old. I started with Gleevec 400 mg every day for 5 1/2 years, i was in recession for 3 years so in 2015 my doctors said that i could try to stop the medicine. But after 3 months my bcr-able was 2,3. So i started tasigna 600 mg (300 mg in the morning and 300 mg in the evening). One year after i'm in recession again (the latest 6 months i'm negative, bcr-able can not be detected). I'm so happy for it and i feel great!!! But after 9 months with tasigna i get high LDL(175) and cholesterole (280) and a few pimples sebum ιn my arms. For the pimples i used an intensive exfoliating creme with olive.For the LDL i take care of my diet (only mediterranean diet, not junk food at all). My doctors told me that i don' t need a medicine for the cholisterole yet. Only swimming in the sea. walking, good diet, good psychology and faith something like an holistic approach (like HIPPOCRATES said) to this problem. For me the Gleevec effects where terrible (diarrhea, vomiting, blood -storms in my eyes ). I prefer Tasigna and i take my risks. Maybe it would be a good idea to talk once again with your doctors (dermatologist,hematologistic, gynecologist). best wishes thinking of you C. 2016-05-31 4:27 GMT+03:00 kathy walls : 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 same fight each in our way BEST TO ALL. -18's Kate Sent from my iPhone On May 30, 2016, at 8:55 PM, Marty Gartenberg wrote: Yes Jeanie, we are still all kicking! Jeanie what happened in the past according to your oncologist about you being to old should remain in the past and I will tell you why. I also want you to think about something called BASHERT, which
Re: [CMLHope] Prayers are offered.
Wow Beth, Sounds very interesting, glad you could go! What is CPK? Thinking of you. Love and 18's, Susan F. Zimmerman -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Tue, May 3, 2016 2:44 pm Subject: 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 cmlhop
Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so
Good one, Marty!!! You personify warmth, love, caring and a "momma" attitude to us all. Thanks for the positives you bring! Susan F. Zimmerman -Original Message- From: Marty Gartenberg To: cmlhope Sent: Sat, May 14, 2016 12:59 pm Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so Well, do I actually personify class? I don't know, but maybe this will bring up your day. Maybe this funny music video will? I hope that everyone's day is at it's pinnacle just, like a rock on top of a mountain because everyone is in fact a rock for what you have been going through, and you will never break! 18's Marty https://www.youtube.com/embed/gKpFhPdyQLM?rel=0 On Fri, May 13, 2016 at 9:57 PM, 'Susan Zimmerman' via CMLHope wrote: My best to Beth and Jeanie and Marty as you battle onward and upward to be victorious. The victory is more in the attitude, and all of you personify it. I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke and getting off bosulif. It was 3.56. Ok but steadily increasing. Very exhausted all the time w profuse sweating anytime I do anythingbut very glad to be alive with a very helpful husband. You guys take care and enjoy the summer...it's coming! Love you all and 18's, 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, May 12, 2016 bkbarney via CMLHope wrote: 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 g
Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so
You personify class, too, Marty. Thanks so much! 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: Sat, May 14, 2016 10:00 am Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so Wow, Susan it's nice to be able to meet up with such a classy lady such as you. I love the word personify. A red rose for you! 🌷 18's, Marty On Fri, May 13, 2016 at 9:57 PM, 'Susan Zimmerman' via CMLHope wrote: My best to Beth and Jeanie and Marty as you battle onward and upward to be victorious. The victory is more in the attitude, and all of you personify it. I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke and getting off bosulif. It was 3.56. Ok but steadily increasing. Very exhausted all the time w profuse sweating anytime I do anythingbut very glad to be alive with a very helpful husband. You guys take care and enjoy the summer...it's coming! Love you all and 18's, 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, May 12, 2016 bkbarney via CMLHope wrote: 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 slow
Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so
My best to Beth and Jeanie and Marty as you battle onward and upward to be victorious. The victory is more in the attitude, and all of you personify it. I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke and getting off bosulif. It was 3.56. Ok but steadily increasing. Very exhausted all the time w profuse sweating anytime I do anythingbut very glad to be alive with a very helpful husband. You guys take care and enjoy the summer...it's coming! Love you all and 18's, 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, May 12, 2016 bkbarney via CMLHope wrote: 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 2/20
Re: [CMLHope] Re: Zavie's Zero Club.xls
Oh my goodness!!! Marcie I so wish we were closer so I could be with you. Know that you are so dear to me and so consequently your husband is also. Please let me know if there's anything I can do to help. Do you have a strong support system of friends/family? Pm me if you'd like. You know I'm praying for you as so many others on here are as well!!! Love and big hugs, 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, April 29, 2016 'Marcie Goodman' via CMLHope wrote: Hi Friends, I've been off line for a bit. My husband was hospitalized beginning of January for a week due to numerous falls. He has early stages atypical Parkinson's or something similar. In March I was hospitalized for bottomed out hematocrit. Then 10 days ago he had a stroke While in Johns Hopkins, where he is still a patient, he needed emergency bowel resection. Trying to recover from that to get to inpatient rehab. A long road but one day and one step at a time. We feel very blessed for the wonderful care he has received. Marcie Sent from my iPhone On Apr 29, 2016, at 7:45 PM, Joyce Mesnarich wrote: Jeanie and Richard, I am here and monitoring. I just don’t have anything worth reporting. LOL Unless you want to hear about my exciting senior life. My hubby Wayne goes back to see Dr Talpaz in August. We are hoping for a good PCR report and the supporting blood tests as well. We are gearing up for a family reunion of sorts. Our daughter/husband are coming from the east coast and our granddaughter and our NEW great grandson are coming from the west coast. The baby is 6 months old and we have not met him yet. So excited. I know I will be exhausted but it will be worth it. Joyce in IL On Apr 29, 2016, at 7:39 AM, 'Icandoallttc' via CMLHope wrote: I don't think so. We have many Christians on this list. Thanks for your quick reply. All is good. 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 Apr 29, 2016, at 12:31 AM, Richard H wrote: I had assumed that since this is Passover period that many are participating. Richard H. On Thursday, April 28, 2016 at 3:39:44 PM UTC-5, Icandoallttc wrote: Just testing. 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 Apr 19, 2016, at 11:55 AM, Icandoallttc wrote: > > > > > > > > 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 from it, send an email to cm
Re: [CMLHope] To Susan Zimmerman
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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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 "
Re: [CMLHope] To Susan Zimmerman
Dear Jeanie, so sorry you are still in the dark about the side pain. I was hoping they would ask for a pet scan to rule out a different kind of cancer. I encourage you again to get to the bottom of it.is it at all connected to plural effusion? Ponatinib has some ability to give heart or bleeding problems said my doc. Because of my bleeding my doc said it would never be the right one for me. So glad it's working for you! Don't mean to share negatives. I know your faith and ponatinib are doing well for you! Blessings and 18's, Susan F. Zimmerman On Thursday, March 24, 2016 'Icandoallttc' via CMLHope wrote: Hi Susan and thanks so much. My side pain is still bad but tests show nothing. Just treating the pain. I read something about an MS hug. My side pain has a lot of similarities to that. I think the tkis caused this as it got worse when I had to go on Tasigna. My Creatine was up but it seems to go up and down along with potassium. I've been on Ponatinib for 12 months now. No test planned thank Heavens. Have to go back in 3 months. They take PCR every 3 months. I forgot to get my last results. 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 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope wrote: Thank you so much, Jeanie!!! You are special to us all. How's the sideache and any more tests about it specifically? 18"s, 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 'Icandoallttc' via CMLHope wrote: Hi Susan and Marcie Prayers for both of you. Sorry for your hospital stay but we need them when we get sick. I hope you find the root of your problems. I had my gallbladder out many years ago. That's some bad pain. Good luck. Susan good luck off meds. Hang in there and fight. 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 24, 2016, at 5:07 PM, '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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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,
Re: [CMLHope] To Susan Zimmerman
Thank you so much, Jeanie!!! You are special to us all. How's the sideache and any more tests about it specifically? 18"s, 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 'Icandoallttc' via CMLHope wrote: Hi Susan and Marcie Prayers for both of you. Sorry for your hospital stay but we need them when we get sick. I hope you find the root of your problems. I had my gallbladder out many years ago. That's some bad pain. Good luck. Susan good luck off meds. Hang in there and fight. 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 24, 2016, at 5:07 PM, '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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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
Re: [CMLHope] To Susan Zimmerman
Marcie, I'm hoping for some quiet time for you and your hubby. Not exactly dull, but peaceful! 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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] To Susan Zimmerman
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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
RE: [CMLHope] To Susan Zimmerman
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 Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope wrote: Susan: Are you able to have an appointment with Dr. Druker in Portland, Oregon? At least email him Hugs, Susan Rosenthal 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 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: CMLHope] Re: Dizzy all day
So glad to hear the good news! That hour must have been a long one after discharge. You'll be playing tennis in no time!! Love, hugs and 18's Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Tuesday, March 22, 2016 Myvety2k via CMLHope wrote: Thanks for the good news Marty. greenie In a message dated 3/22/2016 12:47:59 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Susan, Yes I am finally home. Left the hospital at 3:00 PM and it took my wife about one hour to drive back home. The pacemaker is in and adjusted and fine tuned. Amazing how these work. No more fainting spells which only would last for only 2 seconds so I haven't actually fainted. I was always been able to keep my eyes open and hear as well as even hearing and talking Have some pain where they made the incision but some Tylenol PM should help me sleep, nothing I can't handle. Thank you for asking about me. 18's, Marty On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope wrote: Love you to pieces, Marty! Hope you comfortably home by now. An update for me, please! 18's, Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, March 21, 2016 Myvety2k via CMLHope wrote: Marty, got my fingers crossed. greenie In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Beth, I am actually still in the hospital but maybe today I will be getting out just have to wait for the doctors when they make their rounds. I will keep everyone updated. 18's, Marty bkbarney via CMLHope wrote: 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
Re: [CMLHope] Re: CMLHope] Re: Dizzy all day
Love you to pieces, Marty! Hope you comfortably home by now. An update for me, please! 18's, Susan F. Zimmerman "All who humble themselves before the Lord shall be given every blessing, and shall have wonderful peace." Ps.37:11 On Monday, March 21, 2016 Myvety2k via CMLHope wrote: Marty, got my fingers crossed. greenie In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Beth, I am actually still in the hospital but maybe today I will be getting out just have to wait for the doctors when they make their rounds. I will keep everyone updated. 18's, Marty bkbarney via CMLHope wrote: 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. -- -- [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] Dizzy all day
Dear Jeanie, Sorry you're having troubles today. I havent been on for awhile cuz I've had the wonderful flu...wheezing, coughing, exhausted. I'm getting over it graduallytwo days ago I slept literally all day and night except for two light meals. Been on antibiotic for it. Been tested again since going off bosulif cuz of the strokeint'l. Number was .28quite a bit elevated from .019the test a month before. I am not overly concerned at this point. Being tested monthly locally and will go every 3 months to chicago. They are hoping I will agree to go back on bosulif at 100 mg every other day to begin. I am not ready at this point. Have seen two other specialists at Northwes%ern recommended by Dr. Altman. Many tests showed nothing out of the ordinary!!! Rather frustrating but enjoying no meds! Oh bp was up so back on bp meds again. I havent deleted your posts but confess I havent read them yet either. You all are in my prayers and I hope I'm in yours for my #"s to stay down. Fightin on and 18's to all, Susan F. Zimmerman On Wednesday, March 16, 2016 'Icandoallttc' via CMLHope wrote: Hi all I woke up dizzy and have had it all day. Ive had this before so not to concerned yet. Could be my potassium is up. I hope everyone 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 -- -- [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
Yes Judy, I was off gleevec for over seven years after having brain bleeds (small strokes because of the medicine.) i was tested every 3 mos. all that time. I stayed in cellular remission but not in molecular remission. Long story but I pray you get to stay off until they find a cure!! We are all rooting for you!!! Blessings and 18's, Susan 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 On Thursday, February 4, 2016 'judy' via CMLHope wrote: Hello I for got my pass work so couldn get on cml I was on gleevec for I don't rember how long ND MY DR SAIR I DIDN'T HAVE TO TAKE IT ANY MORE MY COUNTS HAD BEEN GOOD AND NO SIGN OF THE CML I VE BEEN OFF IT FOR ABOUT YEAR NOW AND STILL NO SIGN OF THE CML COUNTS STILL GOOD hAS ANY BODY HEARD OF THIS IF O HOW ARE YOU DOING??? judy On Thursday, February 4, 2016 4:26 PM, Marty Gartenberg wrote: Hi Peg, I don't want you to ever forget something. TWO NUMBERS 18's I always put them at the end of any of my posts, and if you don't remember the their meaning it is life. I think that you must have remembered what I have gone through for this past year and also from 26 years ago. You know what I see more people posting 18's I wonder why but I already know why. 18's Marty On Tue, Feb 2, 2016 at 10:55 AM, peg wrote: 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. -- -- [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
Re: [CMLHope] Info update
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 send, and I have fun doing it, so he's gotten candy twice and a physical card, and many e-mailed cards! He knows better than to buy me candy, it's poison for a diabetic. I eat dark chocolate anyway, lol. Blessings and 18's for life of course, Marty, 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: Fri, Feb 12, 2016 9:29 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 thi
Re: [CMLHope] Info update
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 them with 18's which is a symbol for life. 18's, Marty On Wed, Feb 10, 2016 at 4:45 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.c
Re: [CMLHope] Just wanted to check in with folks I remember
Hello Peg, So glad to hear from you! We are tough, us CML bunch. We can take it if you want to share with us the additional battles that have gone along with your CML. We are here to encourage! You don't need to suffer alone, (altho I'm hoping you have a good family, etc.) Your battle could have involved fear, as most people would let it in. But just to remind, fear is False Evidence Appearing Real, put there by the enemy. Can you think of one thing that is good about fear? Same goes for worry. No, they are only destructive. Many of us have come to the place where we know our bodies are only one third of our whole being, and probably the least important of the three. (body, soul and spirit). So we try to let the other two rule our thinking, our outward actions, and so on. I know because of your faith you walk by faith, not by sight! I just thought of a good joke that came from facebook. A big picture of a huge grisly bear roaring. The caption read, "Fear NOTHING! Except a grisly bear, because they will kill you." Anyway, so glad your reports are getting better all the time. I hope you enjoy your days and come back to share a word with us often! We have missed you! 18's and blessings, 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: bkbarney via CMLHope To: cmlhope Sent: Tue, Feb 2, 2016 3:36 pm Subject: 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. -- -- [CMLHo
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, however what about each and everyone else. Please try to understand people that are in a group are the power of that group. OK so lately I have a little more activity in my life health wise then normal (whatever that may be) So please lets everyone stop calling me the leader of this
Re: [CMLHope] Re: stroke
Thanks Jeanie, I really do not worry because as you know, it's not productive and helps NOTHING. I also am thankful my bp has gone down to normal without medication, as I really have tried to relieve all stress in my life. Has your bp gone down? I sure hope so. We can create our own stress by worrying, or relax in the everyday joy of going through trials to make us stronger I am praying for your side pain to go away, for sure. I'd like for you to get to the bottom of that. There's something causing it. Have you considered having that pet scan I mentioned? The earlier something is caught, of course the better. Blessings and love to you as you enjoy every day as a gift. 18's, SZ -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Mon, Jan 4, 2016 5:21 pm Subject: Re: [CMLHope] Re: stroke Hi Susan , Just wanted to tell you that my mom and grandmother both had strokes in their late 70s. My sister died of a stroke in her late 60s. So it runs in the women of my family. Of course they weren't on tkis but we're on medicines for other things. My doctor warned me to keep my BP down to avoid strokes while on ponatinib. Well all the BP meds make me sick so I can't take them. I think we have a lot of stress due to the CML and worrying about the meds we take; I know I do. Good luck and continue to mend and thanks for the info on strokes. My mom was completely out of it when she had her stroke. She had to learn to read and write again and attended those therapies. After a while she became her old self again until she fell and broke her hip. ❤️💋💋😇💗 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 3, 2016, at 9:00 PM, 'Susan Zimmerman' via CMLHope wrote: Hi Jeanie, I have had four previous strokes, all due to trying the four other meds that are out. With gleevec I had two strokes while I was on it that were minor. The docs were not convinced the gleevec caused it, but I was! Then 2 years after being off all drugs for cml, I had a major stroke which at first left my eye frozen, and damaged hearing, along with balance problems. Thankfully, those things all went away after 3 months. I am most blessed. Then each other pill I tried, (all 3 others) I had a symptom of stroke almost immediately. (bad eye bleed, frozen eye like the big stroke). They could only find cavernous malformations in my brain to lend itself to such easy bleeding. About 9 months ago I went back on the last drug, bosulif, because my numbers were getting pretty high after 7 yrs of no meds at all. I started with 100 mg of bosulif, which is very low. The usual dose is 500 mg. When my numbers went up just a little after being in remission, the docs suggested I go to 300 mg. I agreed only to 200 mg. So this time, I had doubled my dosage, and 10 days later, had double vision and severe nausea all afternoon right when we were sharing Christmas with my son and whole family on the 26th. I wasn't sure about it, I thought it might be all the sugar I ate, as I am diabetic. So decided just to hit the bed for the evening so as not to ruin their visit. Kids left next day. Then on Wednesday, continuing the double vision somewhat, I vomited. The docs had all said one more symptom get to the e.r., so I went. Sure enough, the ct scan showed 4 new blood spots in four different parts of my brain. (that was a new one, usually they were all in same place.) Luckily very little was affected this time, halleluhiah! Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from these medications. I am one of the 1%. Don't know if the figures have changed, but one thing I do know. None of you need to worry about this happening to you. My father died of a brain aneurysm, so apparently I'm prone to it. But I know I'll only go when it's His timing, not my own! I'll keep plugging and try to keep a joyful heart until then! Definitely planning on enjoying my retirement. 18's and love, Susan Z -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sun, Jan 3, 2016 1:24 pm Subject: Re: [CMLHope] Re: stroke Hi Susan, Just wondering how you knew you were having a stroke?? The tkis say wash your hands after handling and these are going in out stomach!!! Keep strong and keep fighting!! ❤️💋😇🎼 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 3, 2016, at 1:00 PM, bkbarney via CMLHope wrote: Susan, you are a strong and amazingly positive woman...I am so sorry this happened..but t
Re: [CMLHope] Re: stroke
Hi Jeanie, I have had four previous strokes, all due to trying the four other meds that are out. With gleevec I had two strokes while I was on it that were minor. The docs were not convinced the gleevec caused it, but I was! Then 2 years after being off all drugs for cml, I had a major stroke which at first left my eye frozen, and damaged hearing, along with balance problems. Thankfully, those things all went away after 3 months. I am most blessed. Then each other pill I tried, (all 3 others) I had a symptom of stroke almost immediately. (bad eye bleed, frozen eye like the big stroke). They could only find cavernous malformations in my brain to lend itself to such easy bleeding. About 9 months ago I went back on the last drug, bosulif, because my numbers were getting pretty high after 7 yrs of no meds at all. I started with 100 mg of bosulif, which is very low. The usual dose is 500 mg. When my numbers went up just a little after being in remission, the docs suggested I go to 300 mg. I agreed only to 200 mg. So this time, I had doubled my dosage, and 10 days later, had double vision and severe nausea all afternoon right when we were sharing Christmas with my son and whole family on the 26th. I wasn't sure about it, I thought it might be all the sugar I ate, as I am diabetic. So decided just to hit the bed for the evening so as not to ruin their visit. Kids left next day. Then on Wednesday, continuing the double vision somewhat, I vomited. The docs had all said one more symptom get to the e.r., so I went. Sure enough, the ct scan showed 4 new blood spots in four different parts of my brain. (that was a new one, usually they were all in same place.) Luckily very little was affected this time, halleluhiah! Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from these medications. I am one of the 1%. Don't know if the figures have changed, but one thing I do know. None of you need to worry about this happening to you. My father died of a brain aneurysm, so apparently I'm prone to it. But I know I'll only go when it's His timing, not my own! I'll keep plugging and try to keep a joyful heart until then! Definitely planning on enjoying my retirement. 18's and love, Susan Z -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sun, Jan 3, 2016 1:24 pm Subject: Re: [CMLHope] Re: stroke Hi Susan, Just wondering how you knew you were having a stroke?? The tkis say wash your hands after handling and these are going in out stomach!!! Keep strong and keep fighting!! ❤️💋😇🎼 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 3, 2016, at 1:00 PM, bkbarney via CMLHope wrote: 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&quo
Re: [CMLHope] Re: stroke
Thank you so very much for all the well wishes! It means a whole lot to me. Thanks Greenie, and Beth, and Jeannie and Marcie!!! Sure wish we'd hear from Marty.. Does anyone have any contact with his family? Greenie, I sure do feel safer at home for sure! Now that I'm older, I am definitely not the "go" bug that I used to be. I want to leave a legacy for my family of loving people really well and hoping they will see Christ in me. I know you all feel the same way about not wasting time and enjoying every day. When life becomes iffy, we value it far more, eh? Every day is a gift and I hope I make it pleasant for someone else. I can only do this if I pause before my every response instead of spewing out the first thing that comes in my head. Sometimes that first thing is not so good, lol! Enjoy 2016 as a marvelous gift to spread the good stuff, not the bad! 18's and love, SZ -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Sun, Jan 3, 2016 12:42 pm Subject: Re: [CMLHope] Re: stroke Susan, very happy you are out of the hospital...hope the new year ahead is full of joy, healing and renewed health for you...glad you are out of the hospital too. Please take good care...Love, and 18's Beth.. p.s. I was thinking the same thing about Marty..where are you Marty and how are you B -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Sun, Jan 3, 2016 5:20 am Subject: Re: [CMLHope] Re: stroke SZ, theirs nothing like being in your own home, glad your out of the hospital it's safer to be at home. greenie In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time, cmlhope@googlegroups.com writes: Dear Angie, Hooray for 6 mos free of gleevec! I'm so hopeful I can stay off bosulif until I turn 65 next September without my numbers going crazy. I know you are thrilled to get your body back, lol!Thanks and you are right, what a way to end 2015! So glad I got out of hospital on the 31st, which made insurance so much easier for the change in years. All you blood buddies out there, best wishes to you all and I lift you in my prayers whenever I hear about problems. Anybody heard from Marty lately? It's been ages. 18's, Susan Z -- -- [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
Re: [CMLHope] Re: stroke
Dear Angie, Hooray for 6 mos free of gleevec! I'm so hopeful I can stay off bosulif until I turn 65 next September without my numbers going crazy. I know you are thrilled to get your body back, lol! Thanks and you are right, what a way to end 2015! So glad I got out of hospital on the 31st, which made insurance so much easier for the change in years. All you blood buddies out there, best wishes to you all and I lift you in my prayers whenever I hear about problems. Anybody heard from Marty lately? It's been ages. 18's, Susan Z -- -- [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: stroke
Thanks Dave! Sz Sent from my Sprint phone -- Original message--From: Myvety2k via CMLHope Date: Thu, Dec 31, 2015 7:51 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Re: stroke Sz, Hang in their I'll be thinking of good thoughts for you so that you can get better. greenie In a message dated 12/31/2015 12:50:03 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes: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. -- -- [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: 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 PMTo: 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.
Re: [CMLHope] Re: Merry Christmas and happy Hilidays
Merry Christmas and Happy New Year to all of you, ALL!!! This was the best Christmas I can remember, as both my adult children and their families were in attendance. It made the celebration wonderful with a 7 and a 4 yr old (grandkids). I will be recuperating for a few days since they left yesterday. Both my husband and I hit the sheets for a nap the minute they left! Wouldn't trade it for the world. Was not sure if I had stroke symptoms or a sugar overload on Saturday after a big party. Double vision and near-vomiting for over three hours. Took off my mono contacts after the LOOONNG ride home and in half an hour was fine. Ten days before that I had doubled my dose of bosulif. Now not sure whether to keep on two a day or cut back to one a day again. Stroke is not worth the medicine. I'll test it again and see.prayers appreciated. 18's and Enjoy every day, Susan F. Zimmerman -Original Message- From: Richard H To: CMLHope Cc: icandoallttc Sent: Sat, Dec 26, 2015 12:17 am Subject: [CMLHope] Re: Merry Christmas and happy Hilidays Merry Christmas and happy holidays back your way and to all. Santa was the BEST EVER. I was able to bring my wife HOME. Lots of in home care and therapy wi;l start next week. On Friday, December 25, 2015 at 2:44:03 PM UTC-6, Icandoallttc wrote: Merry Christmas and happy Holidays to all. I hope everyone is good and that Santa was good to you. 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 -- -- [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] Test Day
Hi Beth, Thanks for asking about me. I have not set up an appt. yet for Chicago. Went back to 100mg a day of bosulif because I am trying to get my body to assimilate the vitamins and minerals and nutrients that will give me energy. They think I'm on 200 mg at this point. I must call them next week in Chicago and make an appt. I still feel very blessed compared to so many who suffer regularly. So glad you are getting a reprieve from the medicine!! Hoping you are feeding yourself a very good brand of vitamins and minerals while you are off the meds. Liquid always assimilates faster and easier. Our bodies need 60 minerals and 30 vitamins and nutrients regularly in certain amounts to receive everything we need. There is no possible way for us to receive it through our food. Wheat now stands 10 inches tall in the fields, in opposition to 3 feet that it used to be. The Round-up et al that is put on the fields goes into our bodies and destroys the crops first. For those who have been told not to take supplements while on a chemo drug..I think that is balogna with a capital B. We need them much MORE because the chemo trips us of the good stuff, especially the probiotics needed to keep our healthy flora going strong in our stomachs and upper and lower intestines. I will write you privately about coming to Chicago. We often have to run in and run out quickly because of my husband's work. Maybe we will be able to see you! I will be out of town also from the 22nd thru Dec. 5th. Going to New Orleans and Florida. Grandkids first for T-giving and then to see his boss in Sanford, FL and have a little vacay. We will be near Disney staying. Hooray, hope the weather holds! Beth, enjoy your week in Florida, too! Happy wonderful Thanksgiving to everyone Blessings and 18's, Susan Z -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Thu, Nov 19, 2015 8:27 pm Subject: Re: [CMLHope] Test Day Dear Susan, Concerned to hear your news...I know you wanted to hear better..It's so hard when we hit an unexpected bump in the roadwhen are you coming back to see your doc? I am in town except for Dec. 12-19th...would love to meet you this time. And Greeniewill be in Fort Myers so hopefully can see you and your sweetie..and my other cml buddies who live down south...chemo brain...forgive me!. Just I have gone off everything...my BCR was good enough to take some time to cleanse my body...was just too sickwill go back on in a few weeks...enjoying GRAPEFRUIT!!! for a couple of weeks!. Love to all and a happy and healthy Thanksgiving to each and everyone of you... 18's and love, Beth -Original Message----- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Fri, Oct 30, 2015 8:26 am Subject: Re: [CMLHope] Test Day Hi all, My bcr/abl results were not as great as I hoped. Last time I was .012.almost to zero. This time I expected to be zero, but alas I am up to .348. So doc wants me to go to 300 mg bosulif, instead of 100 mg. I am compromising and will go to 200 so I don't have to stay in the bathroom all day. I was ready to get a local test next time and forego going to Chicago every 3 months. Now she wants to see me in one month after I up the dose. Ugh! So thankful I do have a wonderful doc even if I do decide myself on my dosage. She does not put me down about it, and supports me in every way. Beth, keeping my fingers crossed for you and saying a prayer. Marty, you are so loved and hope your kidney stuff is getting better. Your pics were beautiful. 18's and blessings, Susan Z -Original Message- From: Marty Gartenberg To: cmlhope Sent: Thu, Oct 29, 2015 10:11 pm Subject: Re: [CMLHope] Test Day Yes since everything has been going on I had leave my home in PA empty for nearly two years, but let me tell you something about that crisp clean air and simply beautiful colors of all of the trees that you can see for miles. An example is route 97 which separates upstate NY from PA with the Delaware river in between them. Route 97 goes from Port Jervis all the way down to past Hancock NY, and is considered the most scenic road it the United States. Right near Port Jervis there is route 97 winding like a snake on the edge of the road and is about 1,000 feet above the Delaware River. I have driven in that area and I wouldn't ever drive on it in the snow or at night. If by chance your ever there and I am in PA it is only right across the Robeling bridge which is actually a one lane wooden bridge only allowing one way of traffic then once it stops then the other way. I am wishing you well with your results. Don't forget to let everyone know. 18's, Marty On Thu, Oct 29, 2015 at 6:31 PM, bkbarney via CMLHope wrote: Hi all, Just saying hi! Wanted you all to know that I am thinking of you and
Re: [CMLHope] Hi john 11th month on ponatinib
Hi Jeanie, I know you know that you are in the palm of His hand and He is watching over you. A great response for brain fog foibles is this"Yes, I am having a smooth transition into senility." Might as well laugh cuz it makes others laugh also. The side pain is I'm sure hard to ignore. Why wait til January for a pet scan? Seems like it will cost you less if you get it this year due to deductibles, etc. Remember you are your best advocate...no one knows your body like you. Sounds like your numbers are tolerable. I had to increase my bosulif to 200 mg and doing just fine so far. May we all be thankful in this season for the many blessings we all enjoy in this USA. I know I am thankful I don't have to hold down a j.o.b. anymore, but enjoy retirement. While my hubby still is working his bippy off! 18's and blessings, Susan Z. Sent from my Sprint phone -- Original message--From: Marty GartenbergDate: Wed, Nov 11, 2015 12:02 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Hi john 11th month on ponatinib Oh Jeanie, Jeanie what am I going to do with you? Everything that you must be going through and I can say that I am familiar with most of this stuff. Been there and done that, but I just know that your going to be alright. It's the same for me and mostly everyone that has to go through any type of health problems, because they are usually frightened about what will happen. Now can I say that have I ever been frightened, and my answer is yes. However I just have to do whatever I need to do to keep myself going and so far no matter what I was put through I am still running around and still living, well so far I am. It's the attitude of people that really matters. A lot of people may not understand me or my attitude because of the way I keep my life in order. If I were to wander around with everything that I have already been through then How would my lief be? I don't think that it would be as good as I would like it to be. Doesn't everyone understand why I always end any of my posts with 18's? It's because of living my life Jeanie let me remind you, and by the way everyone else for that matter of a poem that I have already sent. And please if you will notice the very last word, 18's Marty EXPECT THE BEST, MINDOVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS ATANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSETHEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THEBEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVE TO LEARNTO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT ANDNOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY.WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVESINTO THE AREA OF POSSIBILITY.EVERY GREAT THINGEVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFULUNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME...FOCUS... On Wed, Nov 11, 2015 at 9:22 AM, 'Icandoallttc' via CMLHope wrote: Hi John and all. Just checking in to see how you are doing. I am in my 11th month of ponatinib. I seem to be doing good. WBC have been a little high but onc didn't seem to care. Now he worries about some nodes on lungs. Might do pet scan first of year. Have you had one? Still have dry skin and bad pain under right ribs. Have brain fog also. I hope everyone is good. 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 -- -- [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...@googlegrou
Re: [CMLHope] Test Day
Hi all, My bcr/abl results were not as great as I hoped. Last time I was .012.almost to zero. This time I expected to be zero, but alas I am up to .348. So doc wants me to go to 300 mg bosulif, instead of 100 mg. I am compromising and will go to 200 so I don't have to stay in the bathroom all day. I was ready to get a local test next time and forego going to Chicago every 3 months. Now she wants to see me in one month after I up the dose. Ugh! So thankful I do have a wonderful doc even if I do decide myself on my dosage. She does not put me down about it, and supports me in every way. Beth, keeping my fingers crossed for you and saying a prayer. Marty, you are so loved and hope your kidney stuff is getting better. Your pics were beautiful. 18's and blessings, Susan Z -Original Message- From: Marty Gartenberg To: cmlhope Sent: Thu, Oct 29, 2015 10:11 pm Subject: Re: [CMLHope] Test Day Yes since everything has been going on I had leave my home in PA empty for nearly two years, but let me tell you something about that crisp clean air and simply beautiful colors of all of the trees that you can see for miles. An example is route 97 which separates upstate NY from PA with the Delaware river in between them. Route 97 goes from Port Jervis all the way down to past Hancock NY, and is considered the most scenic road it the United States. Right near Port Jervis there is route 97 winding like a snake on the edge of the road and is about 1,000 feet above the Delaware River. I have driven in that area and I wouldn't ever drive on it in the snow or at night. If by chance your ever there and I am in PA it is only right across the Robeling bridge which is actually a one lane wooden bridge only allowing one way of traffic then once it stops then the other way. I am wishing you well with your results. Don't forget to let everyone know. 18's, Marty On Thu, Oct 29, 2015 at 6:31 PM, bkbarney via CMLHope wrote: Hi all, Just saying hi! Wanted you all to know that I am thinking of you and sending everyone a big hug and happy fall wishes... I know some of you southern folks..will enjoy your 90 degree Florida temperatures coming down...but us up north are enjoying the beauty of fall..it's cold today, but should be back up in the 60's by SundayIndian summer.I just love it... did BCR on Monday..waiting for results..then will decide plan for next few months... love, hugs and 18's to all, Beth -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sun, Oct 11, 2015 1:07 pm Subject: Re: [CMLHope] Test Day Hi Beth I can never go off the meds either. My counts will shoot up fast. Good luck ❤️ 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 Oct 11, 2015, at 1:43 AM, bkbarney via CMLHope wrote: Dear Jeannie, Richard, Susan, Marty, et al...thanks very much for responding to my question. I am scared, but want to try something to help myself. We will see what Dr.Druker has to say. In the mean time, what I do know, having been off of sprycel for months at a time to deal with major surgeries several times, is that I always come out of remission, and quickly. I don't hold without the sprycel. Usually the cells are showing at very low numbers, but it means that without the agent that keeps them in check, cancer grows. I wish this were not so. And I know it's not for some lucky folks. Maybe with time, this will change for me. For now I am developing a plan..will keep you all posted. love and 18's Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Thu, Oct 8, 2015 5:56 am Subject: Re: [CMLHope] Test Day Hi Jeannie, Beth, Richard as well as everyone on this site, I have a friend (not had a friend, and still have this friend) who had CML a little while after I had my transplant. At the time there were no TKI's but there were only two things available. One was a bone marrow transplant which was in it's infancy at the time and the other was Alpha interferon but on an early study basis which actually was a blind study. Depending on if those in this study would be receiving this Alpha Interferon or a placebo. Even before my friend I had to chose the Interferon or the placebo in this blind study. I spoke with a lot of oncologists about what to do. However there were no concise answers because on one hand there was something that was still in a blind study and who would know if that would even be given to this patient or would the BMT be the way to go? However, since there were no matching donors, but one, his brother who refused, and I could never understand that, but since there were no other choices he had no other choice but to try that blind study. Well he was lucky enough to be accepted. And I
Re: [CMLHope] Test Day
Good news Richard#!!! So glad yr wife is better also. Relief! 18's? Susan z Sent from my Sprint phone -- Original message--From: bkbarney via CMLHope Date: Wed, Oct 7, 2015 11:35 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Test Day Dear Richard,Sounds like good news all the way around. Hope your counts continue to hold well and the November visit to the onc is a positive one! Your wife is healing well..slow and steady. Thanks for sharing the good newsKeeping you both in my thoughts and prayers. Beth -Original Message- From: 'Icandoallttc' via CMLHope > To: cmlhope > Sent: Wed, Oct 7, 2015 9:26 am Subject: Re: [CMLHope] Test Day Hi Richard and happy you are better. I hope your wife will be home soon. Prayers always. My Motto: Faith and PillsJeanie 🐟🐟18,s Dx 1/2004. CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer Center On Oct 7, 2015, at 12:01 AM, Richard H wrote: All is good at this house. Saw Kidney Dr. and my tests have improved the last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. I hope it stays there until the end of Nov. when I visit my ONC. My wife is improving, and will see the Dr. Oct. 21st to see if she can start putting weight on the right side. Shoulder seems to be healing nicely. She has the healing knot on the shoulder and is feeding herself with her right hand and is raising the upper arm to almost shoulder height without pain. We are hoping she can come home in Nov. when she can get out of the wheel chair and up and down without help. Due to heart surgery and a pacemaker all I can due is call for help if she has a problem. 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 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] Test Day
Hi Beth dear,Hoping you realize you are not in danger by going off a tkiIt is so important for yr immune system to rebuild. So if both those things are true, why wait on going off? You know I was off all tki's for over 7 yrsand here I am. I know everone is different but God is in charge of your life. I pray your personal peace is there first and foremost. Live choosing JOY as your portion. Hope to see you on the 22ndwaiting to hear. Best wishes!!! Sent from my Sprint phone -- Original message--From: Marty Gartenberg Date: Thu, Oct 8, 2015 7:56 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Test Day Hi Jeannie, Beth, Richard as well as everyone on this site, I have a friend (not had a friend, and still have this friend) who had CML a little while after I had my transplant. At the time there were no TKI's but there were only two things available. One was a bone marrow transplant which was in it's infancy at the time and the other was Alpha interferon but on an early study basis which actually was a blind study. Depending on if those in this study would be receiving this Alpha Interferon or a placebo. Even before my friend I had to chose the Interferon or the placebo in this blind study. I spoke with a lot of oncologists about what to do. However there were no concise answers because on one hand there was something that was still in a blind study and who would know if that would even be given to this patient or would the BMT be the way to go? However, since there were no matching donors, but one, his brother who refused, and I could never understand that, but since there were no other choices he had no other choice but to try that blind study. Well he was lucky enough to be accepted. And I have to tell you that he really suffered some really bad side effects for years afterwards. Eventually they were unable to detect any more CML, but he still refused to go off of the Alpha Interferon and I suppose this was a crutch in his life so he still remained on it for many years. So I guess that he finally decided to go off of it. Once that happened his life took a dramatic turn. No more side effects and no more CML, and he is still alive and doing remarkably well today. As far as me, well my only choice was the BMT because of two reasons. Since my white blood counts were at the time over 486,000 and doubtful that I would survive, but basically the same thing with the BMT but at least I had my sister as a donor who just happened to be a perfect HLA match. So I tried the BMT, and it worked. But yet there is still more to this story and some of you might remember Zavie Miller and all three of us used to get together, and called ourselves The Three Musketeers. This was well after Zavie got to know Dr. Druker and he was started on STI-571 which when approved by the FDA turned into Gleevec. So after that we all turned into The Three Musketeers. All of this is ancient history but my point is that whether to go off or continue on the TKI's because you may be actually "cured" of CML but you may still hold the touch of the crutch. So you see that there are different strokes for different people. Fortunately I don't have to make the choice because I already did and believe me I really did suffer, but in the end it was worth it. Now knowing what I would do if my circumstances were different I think that I would be off these TKI's and live my life, and if something happens then you will have to deal with it, and you will. Remember a crutch is a terrible thing to have. I spend a lot of time trying to help, and your all very special people to me as I am to you. Those are my words of wisdom and please never forget what 18's stands for. It is life yours and mine! 18's Marty i On Thu, Oct 8, 2015 at 12:24 AM, Richard H wrote: Just a quick glimpse about a med break. The end of March when I went to the hospital with Vertigo, The short break I had on medicine did wonders for me. Found some I shouldn't have been taking, stopped some all together. I have felt so much better that I would do it again under total control. Worried? Yes, but I realized afterwards it should have been done earlier. Richard H. On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote: HI Jeannie and all, ...I am due for BCR abl testing so should get it in the next two weeks, results two weeks later...so I will update when I know more...Had a consult today at the Block Center here in Illinois.People tend to love him or hate him... I really like him. He thinks all my issues are sprycel related. Thinks I should go off everything and have drug holiday to give my autoimmune system a reststeroids briefly to try and lower cpk so I can move better without such a severe boomerang effect. Back issues are no worse. That's good news from my endsince there have been several of my fellow warriors here who have lost there remissions spontaneously after years of
Re: [CMLHope] Three months
Angie, So very very happy for you! This will show you that even if you begin climbing again, (and we don't believe that), you will never get bad with CML and you will happily go to the great beyond because of something else!!! 18's and blessings, Susan Zimmerman -Original Message- From: Marty Gartenberg To: cmlhope Sent: Tue, Sep 29, 2015 10:38 pm Subject: Re: [CMLHope] Three months Angie, So I see that your finally good to go \uD83D\uDC4C That's great! 18's, Marty On Tue, Sep 29, 2015 at 8:18 PM, ANGELYN ESDERS wrote: After 14+ years, I have been off Gleevec for 3 months. So far, so good... All blood counts are A-OK. I am starting to feel a little braver about it now... Angie in Canada -- -- [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] to Beth
We are only two hours from Chicago so we don't spend the night, but many thanks! How far are you from downtown? Could you private msg me yr. address? Sent from my Sprint phone -- Original message--From: bkbarney via CMLHope Date: Tue, Sep 29, 2015 10:09 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] to Beth I would love to see you Susan. What is your timing? do you need a place to stay while you are here? Let me know! I definitely want to see you. From when to when will you be here? Thanks. Beth -Original Message- From: 'Susan Zimmerman' via CMLHope > To: cmlhope > Sent: Mon, Sep 28, 2015 3:07 pm Subject: Re: [CMLHope] to Beth Dear Beth again,I looked again and we come to Northwestern on Oct. 22nd. That's a Thursday. Let me know! Sent from my Sprint phone -- Original message------From: 'Susan Zimmerman' via CMLHope Date: Mon, Sep 28, 2015 4:01 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] New results Dear Beth,Sorry, I don't know what happened to September, but here i am a month later seeing your response to my response...lolAre you still having to wear compression bandages??? I am so sorry. We come this Thursday to ChicagoI know you are near.Any chance we might get together for some mutual uplift? Blessings, Susan F. Zimmerman -Original Message- From: bkbarney via CMLHope > To: cmlhope > Sent: Wed, Aug 26, 2015 8:35 pm Subject: Re: [CMLHope] New results Dear Marcie, and Susan, Thanks for the kind words and prayers, much appreciated.I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months, cancer walked right through it and grew. It is the only TKI that did not work for me, all the others do but I have significant side effects..while I am still working through the wall that I hit, I am uplifted by all the this group. I cannot thank each one of you that responded to me, enough for taking the time and connecting. It has been a a life line during a difficult patch. much love, Beth -----Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Mon, Aug 24, 2015 11:37 pm Subject: Re: [CMLHope] New results Dear Beth, I feel terrible about your lymphedema and certainly understand the misery when people stare and are rude. Please remember you are so beautiful inside and out and we are all pulling for you. You have been a MAJOR inspiration to me and so many others on here. Always a kind word to everyone. I am hoping you might have your doc think about bosulif for you. Everyone is different but sprycel seems to have more side effects than the others. We are all wishing for a complete turnaround for you!!! Keep your thoughts on things above and He will be there for you, too! Much love and prayers, Susan Z. P.s. This is my dog Paris wishing you the best! Sent from my Sprint phone -- Original message-- From: margood18 via CMLHopeDate: Mon, Aug 24, 2015 2:15 PM To: cmlhope@googlegroups.com; Subject:Re: [CMLHope] New results Beth, I'm so sorry you are having such a difficult time. I knew that things were not easy for you but I did not realize just how tough. I pray, too, that new drugs will come on the market to alleviate the terrible side effects so many experience. I'm keeping you in my thoughts and prayers. Marcie -Original Message- From: bkbarney via CMLHope > To: cmlhope > Sent: Mon, Aug 24, 2015 12:23 pm Subject: Re: [CMLHope] New results Dear Joyce, Thanks so much for your reply. I apologize for not responding sooner. I have not been feeling great. I go up and down, undetectable and showing but with very low numberswhat is considered a major molecular remission...with CML testing positive. My struggles have always been the side effects and y body's capacity to tolerate the drugs. They do work for me which is great! this past year, post a botched lower back surgery and the subsequent second surgery to correct the fist one..seemed to erupt something in me and I am struggling with significant lymphedema/lipoedema. So, I am wearing compression garments, on legs, arms and torso except when I sleep.it's been debilitating in terms of movement..There is also no cure, like CL, just management...I don't know how this happened but it's here and I have to learn to live with it and manage it.while so many others have it so much worse, I try to stay positive, and be forward looking, with gratitude for what I do have, but this is taking a toll on my spirit. It feels lonely and isolating. People stare at you. it can be a cruel world. All I want is to feel well and strong in my body...I am doing everything I know to do.. If anyone here has had this type of reaction from taking a TKI, specifically spryce
Re: [CMLHope] to Beth
Dear Beth again,I looked again and we come to Northwestern on Oct. 22nd. That's a Thursday. Let me know! Sent from my Sprint phone -- Original message--From: 'Susan Zimmerman' via CMLHope Date: Mon, Sep 28, 2015 4:01 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] New results Dear Beth,Sorry, I don't know what happened to September, but here i am a month later seeing your response to my response...lolAre you still having to wear compression bandages??? I am so sorry. We come this Thursday to ChicagoI know you are near.Any chance we might get together for some mutual uplift? Blessings, Susan F. Zimmerman -Original Message- From: bkbarney via CMLHope > To: cmlhope > Sent: Wed, Aug 26, 2015 8:35 pm Subject: Re: [CMLHope] New results Dear Marcie, and Susan, Thanks for the kind words and prayers, much appreciated.I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months, cancer walked right through it and grew. It is the only TKI that did not work for me, all the others do but I have significant side effects..while I am still working through the wall that I hit, I am uplifted by all the this group. I cannot thank each one of you that responded to me, enough for taking the time and connecting. It has been a a life line during a difficult patch. much love, Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Mon, Aug 24, 2015 11:37 pm Subject: Re: [CMLHope] New results Dear Beth, I feel terrible about your lymphedema and certainly understand the misery when people stare and are rude. Please remember you are so beautiful inside and out and we are all pulling for you. You have been a MAJOR inspiration to me and so many others on here. Always a kind word to everyone. I am hoping you might have your doc think about bosulif for you. Everyone is different but sprycel seems to have more side effects than the others. We are all wishing for a complete turnaround for you!!! Keep your thoughts on things above and He will be there for you, too! Much love and prayers, Susan Z. P.s. This is my dog Paris wishing you the best! Sent from my Sprint phone -- Original message-- From: margood18 via CMLHopeDate: Mon, Aug 24, 2015 2:15 PM To: cmlhope@googlegroups.com; Subject:Re: [CMLHope] New results Beth, I'm so sorry you are having such a difficult time. I knew that things were not easy for you but I did not realize just how tough. I pray, too, that new drugs will come on the market to alleviate the terrible side effects so many experience. I'm keeping you in my thoughts and prayers. Marcie -Original Message- From: bkbarney via CMLHope > To: cmlhope > Sent: Mon, Aug 24, 2015 12:23 pm Subject: Re: [CMLHope] New results Dear Joyce, Thanks so much for your reply. I apologize for not responding sooner. I have not been feeling great. I go up and down, undetectable and showing but with very low numberswhat is considered a major molecular remission...with CML testing positive. My struggles have always been the side effects and y body's capacity to tolerate the drugs. They do work for me which is great! this past year, post a botched lower back surgery and the subsequent second surgery to correct the fist one..seemed to erupt something in me and I am struggling with significant lymphedema/lipoedema. So, I am wearing compression garments, on legs, arms and torso except when I sleep.it's been debilitating in terms of movement..There is also no cure, like CL, just management...I don't know how this happened but it's here and I have to learn to live with it and manage it.while so many others have it so much worse, I try to stay positive, and be forward looking, with gratitude for what I do have, but this is taking a toll on my spirit. It feels lonely and isolating. People stare at you. it can be a cruel world. All I want is to feel well and strong in my body...I am doing everything I know to do.. If anyone here has had this type of reaction from taking a TKI, specifically sprycel..please let me know. It is clear, from my constantly elevated CPK which is rising, and the lack of healthy collagen and muscle building capacity in my body that sprycel is inhibiting more than the protein that causes CML. I am hopeful for new drugs that will be developed in the future that might work better for me. I miss everyone and send love and 18's to all of you..big group hug!!! Beth -Original Message- From: Joyce Mesnarich < joy...@htc.net> To: cmlhope < cmlhope@googlegroups.com
Re: [CMLHope] New results
Dear Beth, Sorry, I don't know what happened to September, but here i am a month later seeing your response to my response...lol Are you still having to wear compression bandages??? I am so sorry. We come this Thursday to ChicagoI know you are near. Any chance we might get together for some mutual uplift? Blessings, Susan F. Zimmerman -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Wed, Aug 26, 2015 8:35 pm Subject: Re: [CMLHope] New results Dear Marcie, and Susan, Thanks for the kind words and prayers, much appreciated. I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months, cancer walked right through it and grew. It is the only TKI that did not work for me, all the others do but I have significant side effects.. while I am still working through the wall that I hit, I am uplifted by all the this group. I cannot thank each one of you that responded to me, enough for taking the time and connecting. It has been a a life line during a difficult patch. much love, Beth -Original Message----- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Mon, Aug 24, 2015 11:37 pm Subject: Re: [CMLHope] New results Dear Beth, I feel terrible about your lymphedema and certainly understand the misery when people stare and are rude. Please remember you are so beautiful inside and out and we are all pulling for you. You have been a MAJOR inspiration to me and so many others on here. Always a kind word to everyone. I am hoping you might have your doc think about bosulif for you. Everyone is different but sprycel seems to have more side effects than the others. We are all wishing for a complete turnaround for you!!! Keep your thoughts on things above and He will be there for you, too! Much love and prayers, Susan Z. P.s. This is my dog Paris wishing you the best! Sent from my Sprint phone -- Original message-- From: margood18 via CMLHope Date: Mon, Aug 24, 2015 2:15 PM To: cmlhope@googlegroups.com; Subject:Re: [CMLHope] New results Beth, I'm so sorry you are having such a difficult time. I knew that things were not easy for you but I did not realize just how tough. I pray, too, that new drugs will come on the market to alleviate the terrible side effects so many experience. I'm keeping you in my thoughts and prayers. Marcie -Original Message- From: bkbarney via CMLHope > To: cmlhope > Sent: Mon, Aug 24, 2015 12:23 pm Subject: Re: [CMLHope] New results Dear Joyce, Thanks so much for your reply. I apologize for not responding sooner. I have not been feeling great. I go up and down, undetectable and showing but with very low numberswhat is considered a major molecular remission...with CML testing positive. My struggles have always been the side effects and y body's capacity to tolerate the drugs. They do work for me which is great! this past year, post a botched lower back surgery and the subsequent second surgery to correct the fist one..seemed to erupt something in me and I am struggling with significant lymphedema/lipoedema. So, I am wearing compression garments, on legs, arms and torso except when I sleep.it's been debilitating in terms of movement..There is also no cure, like CL, just management...I don't know how this happened but it's here and I have to learn to live with it and manage it.while so many others have it so much worse, I try to stay positive, and be forward looking, with gratitude for what I do have, but this is taking a toll on my spirit. It feels lonely and isolating. People stare at you. it can be a cruel world. All I want is to feel well and strong in my body...I am doing everything I know to do.. If anyone here has had this type of reaction from taking a TKI, specifically sprycel..please let me know. It is clear, from my constantly elevated CPK which is rising, and the lack of healthy collagen and muscle building capacity in my body that sprycel is inhibiting more than the protein that causes CML. I am hopeful for new drugs that will be developed in the future that might work better for me. I miss everyone and send love and 18's to all of you..big group hug!!! Beth -Original Message- From: Joyce Mesnarich < joy...@htc.net> To: cmlhope < cmlhope@googlegroups.com> Sent: Sat, Jul 25, 2015 12:35 pm Subject: Re: [CMLHope] New results Thanks Beth, I think these TKIs are so new that they do not fully know all the side effects, and especially not the long term ones. We are
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 10 updates in 1 topic
Mr. Noles: My heartfelt condolences to you at this time. Prayers for you also. Susan F. Zimmerman -Original Message- From: educatorsusan via CMLHope To: cmlhope Sent: Sat, Sep 19, 2015 8:25 am Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 10 updates in 1 topic Mr. Noles: I am so sorry to hear about Nadia. Because I still see her gardening, I picture her still gardening up in heaven. May those happy memories linger in your mind and sustain your spirit while you go through this difficult journey ahead. I am sure that there are many more happy memories that you hold in your heart. It was so very thoughtful to write the CML group and by keeping us informed. My condolences to you and your family. Hugs, Susan Rosenthal Miami, Florida Sent from my iPhone On Sep 19, 2015, at 6:29 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com Google Groups Topic digest View all topics happy Holidays!! - 10 Updates happy Holidays!! "Nadia Noles" : Sep 18 02:53PM -0400 This is from Mr. Noles, the husband of Nadia Noles, a member of CMLHope. Nadia passed away yesterday, at 2:45 PM. Seven days ago she was working in her garden, and today she is gone. She had CML for seven years, and Gleevec was the wonder drug that kept her alive. All the other drugs, such as Sprycel, caused her terrible side-effects, but she tolerated Gleevec. However, seven days ago she became weak and disoriented, and I took her to her PC physician, and she immediately admitted her; but within the hour, after checking her white cells, which stood at 116,000, she was that evening transported to The Cancer Care Unit in Moffitt Cancer Center. She was then diagnosed by her oncologist with now having Acute Myeloid Leukemia, and we were both told she was terminal with only a few weeks to live. We both wanted her to die at home, but it was suggested that she first stabilize in Hospice for two days. However, when she arrived at Hospice she was already in a semi-coma state, and then died the following afternoon. Her passing was relatively painless. Thank you all for the support you gave her in the past years. I can tell you that she often talked about how much your support meant to her. Now life is for the living… so keep the faith while you go through your own struggles. Jim Noles ANGELYN ESDERS : Sep 18 07:15PM Heartfelt condolences, Jim. Very sorry for your loss.Angie From: Nadia Noles To: cmlhope@googlegroups.com Sent: Friday, September 18, 2015 2:53 PM Subject: RE: [CMLHope] happy Holidays!! This is from Mr. Noles, the husband of Nadia Noles, a member ofCMLHope.Nadia passed away yesterday, at 2:45 PM. Seven days ago she wasworking in her garden, and today she is gone. She had CML for seven years, and Gleevec was the wonderdrug that kept her alive. All the other drugs, such as Sprycel, caused her terrible side-effects, butshe tolerated Gleevec. However, seven days ago she became weak and disoriented, and I took her to her PC physician,and she immediately admitted her; but within the hour, after checking her white cells, which stoodat 116,000, she was that evening transported to The Cancer Care Unit in Moffitt Cancer Center. She was thendiagnosed by her oncologist with now having Acute Myeloid Leukemia, and we were both told she was terminalwith only a few weeks to live. We both wanted her to die at home, but it was suggested that she firststabilize in Hospice for twodays. However, when she arrived at Hospice she was already in a semi-coma state,and then died the following afternoon. Her passing was relatively painless.Thank you all for the support you gave her in the past years. Ican tell you that she often talked about how much your support meant to her. Now life is for the living… sokeep the faith while you go through your own struggles.Jim Noles -- -- [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.
Re: [CMLHope] CBC results 7/17
Great news, Greenie! Sorry to have missed your trip to Chicago this time. We've all been very busy enjoying our brief time without snow, I guess. Enjoy summer, dance today! I am going to get so healthy with the new discoveries I've learned that you all will be blown away! 18's and happiness, (Life and happiness) Susan F. Zimmerman -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Sun, Jul 19, 2015 5:00 pm Subject: Re: [CMLHope] CBC results 7/17 Great news Greenie!! I is what we all want to hear. Good to hear from you. Richard I got my hmg up to 14 but it dropped to 13. It had been about 11 for a long time. These counts are a battle that's for sure. Happy Sunday every one. My Motto: Faith and Pills Jeanie \uD83D\uDC1F\uD83D\uDC1F18,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 Jul 19, 2015, at 12:17 AM, Richard H < rbhuffm...@gmail.com> wrote: Thanks Greenie. It is great to hear that you are at that wonderful "O". I agree all labs are different but This is the same one week after week. I should be about there after the last one was .2%. There will be lots of talking in about 5 weeks, when I see the ONC. My fluid levels stay about 1 all the time. I have had 5 by-passes (24 years), added a 2 prong pacemaker (about 5 years ago) because scar tissue. On Saturday, July 18, 2015 at 6:50:33 AM UTC-5, greenie wrote: After starting Gleevec in Jan. of 2000 my RBC have always been on the low side 3.64 and the norm on the low side is 4.20 to 5.80. No matter what lab you go to their counts are always different. By the way when I went to Chicago the first week in June for my blood work they called me a few days later to tell me the no cancer cells are showing up which is nice to here. I am having a problem with fluid down around my feet and ankles so the NP wanted me to get a Echocardiogram and the test results I'm down loading for you all to see. Other wise I'm doing find. Everyone take care of yourselfs. Greenie Club member 48 In a message dated 7/18/2015 12:27:02 A.M. Eastern Daylight Time, rbhuf...@gmail.com writes: After all the weeks working to get my RBC up to 12.3 it has started dropping again. Two weeks ago it was at 12.0, and today's count was down to 11.1. So it appears that I will be playing with attempting to keep my counts up. I will have my next BCR-ABR 2nd week of Aug and get the results 2 weeks later. 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 ofhttp://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email toCMLHope@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, visithttps://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
Re: [CMLHope] Platelets
Sounds like you are in good hands, Jeanie. Sz
Sent from my Sprint phone
-- Original message--From: 'Icandoallttc' via CMLHope Date: Tue, Jun
30, 2015 11:28 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Platelets
Hi Susan. I tried to see him but had trouble with the appointment. My first
onc recommended dr balducci. I have been seeing him since 2009. He is the head
of the senior oncology at Moffitt. Great doctor!! He specializes in breast
cancer. I have a great team at Moffitt. God bless them every one. Thanks.
Prayers & Blessings Jeanie 🐟🐟18,sDx 1/2004Started Gleevec 2/2004Started Tasigna
9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt
Cancer Center
On Jun 29, 2015, at 2:18 PM, "'Susan Zimmerman' via CMLHope"
wrote:
Pete,When I was at Moffitt from 2005 til 2007, I saw Dr. Javier Panilla. He is
GREAT!!!
18'S,
Susan F. Zimmerman
-Original Message-
From: Pete Pabon
To: cmlhope
Sent: Mon, Jun 15, 2015 12:36 am
Subject: RE: [CMLHope] Platelets
#AOLMsgPart_2_4089d2fc-b1c2-4933-833d-77b508525c5c td{color: black;}
.aolReplacedBody .hmmessage P { margin:0px; padding:0px } .aolReplacedBody
body.hmmessage { font-size: 12pt; font-family:Calibri } Jeanie,who do you see
at Moffitt?
Date: Sun, 14 Jun 2015 20:23:18 -0700
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Platelets
I do understand Skip. I have a sister that has been anemic all her
life, and she is doing fine at 5. I have been having problems every time I get
close 7.9. Just again shows how we each find our spot that works for us.
Richard H.
On Sunday, June 14, 2015 at 8:08:33 AM UTC-5, easyskip_2002 wrote:
I have had very low platelets and ANC and RBC and plus some others plus high
Ferritin counts over 7000 most weeks I have critical platelets and white counts
of 1.2 or up to 2.01 neut 0.20 yet with no meds I have 0.8 log reduction. I
fell fine been doing this for 37 years I tell you this as I want all to know
Low counts should looked but not to spoil your day Zevie was astounded when I
send him on of my blood reports with 1.0 white 88 RBC 0zero platelets ANC of
0.20 hooe this helpsSkip Dx 1977
Sent from Yahoo Mail on Android
From:"'Icandoallttc' via CMLHope" <
cml...@googlegroups.com>
Date:Tue, May 19, 2015 at 9:01 AM
Subject:Re: [CMLHope] Platelets
I also have problems with platelets and WBC.
They go way too high. Only on Tasigna did they drop too Lowe. Go figure. We
are all unique in how we respond to the tkis.
Moffitt tomorrow. I am hoping for good results.
5 months on ponatinib.
Prayers & Blessings Jeanie 18,s
Dx 1/2004Started Gleevec 2/2004
Started Tasigna 9/2009Started
Sprycel 11/2009Started Ponatinib January 2015
On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan <
graga...@gmail.com> wrote:
I have problems
with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel.
With Sprycel, platelet counts go down. Started with 140mg per day and now
taking 50mg per day. One moth of Sprycel medication and two months rest for
platelet recovery. This is how current medication is going on. I take papaya
leaf tea everyday to improve platelets.
On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS
wrote:
Does anyone have problems maintaining their platelet level?
Mine fall down to almost ZERO, which is a dangerous
place to be. I am covered with big purple bruises and petechiae and look like I
have been in a bar fight. Even a light scratch on my skin brings the blood to
the surface. It is called Thrombocytopenia. My red cells also plummet and I had
6 blood transfusions last week.My
confidence waivers a little as it seems they don't really know what to
Re: [CMLHope] Platelets
Pete, When I was at Moffitt from 2005 til 2007, I saw Dr. Javier Panilla. He is GREAT!!! 18'S, Susan F. Zimmerman -Original Message- From: Pete Pabon To: cmlhope Sent: Mon, Jun 15, 2015 12:36 am Subject: RE: [CMLHope] Platelets Jeanie,who do you see at Moffitt? Date: Sun, 14 Jun 2015 20:23:18 -0700 From: rbhuffm...@gmail.com To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Platelets I do understand Skip. I have a sister that has been anemic all her life, and she is doing fine at 5. I have been having problems every time I get close 7.9.Just again shows how we each find our spot that works for us. Richard H. On Sunday, June 14, 2015 at 8:08:33 AM UTC-5, easyskip_2002 wrote: I have had very low platelets and ANC and RBC and plus some others plus high Ferritin counts over 7000 most weeks I have critical platelets and white counts of 1.2 or up to 2.01 neut 0.20 yet with no meds I have 0.8 log reduction. I fell fine been doing this for 37 years I tell you this as I want all to know Low counts should looked but not to spoil your day Zevie was astounded when I send him on of my blood reports with 1.0 white 88 RBC 0zero platelets ANC of 0.20 hooe this helps Skip Dx 1977 Sent from Yahoo Mail on Android From:"'Icandoallttc' via CMLHope" < cml...@googlegroups.com> Date:Tue, May 19, 2015 at 9:01 AM Subject:Re: [CMLHope] Platelets I also have problems with platelets and WBC. They go way too high. Only on Tasigna did they drop too Lowe. Go figure. We are all unique in how we respond to the tkis. Moffitt tomorrow. I am hoping for good results. 5 months on ponatinib. Prayers & Blessings Jeanie 18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan < graga...@gmail.com> wrote: I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: Does anyone have problems maintaining their platelet level? Mine fall down to almost ZERO, which is a dangerous place to be. I am covered with big purple bruises and petechiae and look like I have been in a bar fight. Even a light scratch on my skin brings the blood to the surface. It is called Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions last week. My confidence waivers a little as it seems they don't really know what to do about me. I have lots of complications. More specialists on the horizon, but every step forward is followed by 3 steps back. I am on massive prednisone for the moment. Can anyone share info on this? Angie in Canada Gleevec pioneer since 2001 -- -- [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 cm
Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.
Marty, Your friend knew because God is using him as a prophetic voice through His Son Jesus Christ. He uses me in the same way at times. I have seen many miracles in my life, and I thank God for it. When I prayed for a lady in Malaysia who had a withered hand, it was made whole before my very eyes. That was because she believed God could do it. The Word of God is our key to miracles and all of life for direction. May your days be alert to continuing to grow spiritually, as none of us ever "arrive." I strive to be His servant, as that is my purpose in life. I pray that all of us on this CML journey will live up to the New Testament's 1 Corinthians 14:12 which says, "Even so you, since you are zealous for spiritual gifts, let it be for the edification of the church that you seek to excel." Our differences in beliefs will possibly be there, but He wants us all to prosper and be in health, even as our souls prosper. 18's and blessings, 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 I have Sent: Thu, Jun 25, 2015 12:29 am Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not crying. Hi Susan, Let me remind you of something. There is only one GOD and no matter what religion we are HE is here for everyone. What you give so shall you receive. And i have proof of it. You know what i am doing here, and it is what i do ever since i made that promise to GOD. I think that i have told this story before and if i did then i would like to tell it again. Do you believe in Miracles? Well i do ever since i was still alive when i had my bone marrow transplant in 1989. There were four plastic bubbles in Mount Sinai Hospital at the time, and there were four patients (myself included) in each one. All of them died but me. Why? Many have told me that i have a purpose and i do know that i was placed on this earth to be able to use that purpose and help people. In turn i have been helped by a lot of people. That is how it works, to give is to receive. Something that i am very curious about was when i came for dialysis several months ago there was a Reverend in the waiting room with his wife because she was also on dialysis at the same time that i was. I know both of them for four years and have become friendly with them. The Reverend and i would always talk to each other every time that we were there. One Monday morning i was waiting in the waiting room waiting to be called into the dialysis clinic to start my dialysis. When suddenly he, the Reverend comes over to me and says, "Marty your going to have a miracle preformed today" I asked him what he meant and he said "you will see shortly" Okay, i was just then called to start my dialysis treatment. I was walking toward the clinic and maybe five seconds had passed. I didn't even get the chance to even touch the door knob when the phone in the office rings and the kidney transplant coordinator from The Cleveland Clinic asks to speak to me. I go over to the phone and she tells me that a kidney has been found for me and it is a perfect HLA match for me. I turned facing the Reverend and said did you hear what was just told to me? He said, i already know. How could he have known. I guess that GOD must have picked him to be HIS receiver for me??? So Susan, everything happens for a reason... 18's Marty On Wed, Jun 24, 2015 at 10:48 PM, 'Susan Zimmerman' via CMLHope wrote: Hey, just found this, Marty! Thanks for posting the whole Psalm. It is a great one for encouragement, and I know it will bless everyone here on this site. I truly do pray it for you and everyone! P.S. VERSE 16 IS MY SCRIPTURE TO STAND ON, and I INVITE EVERYONE TO CLAIM IT AS THEIR OWN.."With long life will I satisfy you and show you my salvation!" I've been using this scripture since February 14, 2010 when diagnosed, because God gave it to me as a great great comfort. In other words, if you take it as your own internally, He will make it come to pass! You will live a long life and He will show you His salvation! I do not want to offend anyone with being spiritual, as I was warned when beginning on here that it is for all faiths. But the whole psalm is an uplift for Jewish and Christian believers. God bless you all! I will not keep posting scripture as to not offend anyone. But I hope it blesses most of you! 18's,
Re: [CMLHope] Stopping Gleevec
Dear Angie, I stopped gleevec after being on 400 mg for 2 yrs and 2 mos. It was because I had a brain bleed, then another. I decided back in 2007 before it was popular that I'd rather take my chances and keep myself monitored by blood tests than die of a stroke. I did have a big stroke then in 2010. So I went for 7 yrs without a tki, and my IS numbers were up to 23 when my doc and I decided to start bosulif at 100 mg. This was at Northwestern Medical in Chicago. I am doing fine on it. It took about 9 mos. to come into remission and my doc would have preferred to have me on a higher dose. I am convinced they are all finding out that many patients don't need the high dosages they are prescribing. Don't be afraid to go off!!! They can monitor you and do something quick if you go up fast, which you probably will not. Trust me, the benefits outweigh any fear. No fear, Angie, no fear! 18's, Susan F. Zimmerman -Original Message- From: Giora Sharf To: cmlhope Sent: Wed, Jun 17, 2015 2:35 am Subject: RE: [CMLHope] Stopping Gleevec Hi Angie We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response. I fully understand your concern, I had the same issues and didn’t agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didn’t have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS) Good luck whatever you decide Giora From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: cmlhope@googlegroups.com Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [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] Humor is the spice of life. When your laughing your not crying.
Hey, just found this, Marty! Thanks for posting the whole Psalm. It is a
great one for encouragement, and I know it will bless everyone here on this
site. I truly do pray it for you and everyone! P.S. VERSE 16 IS MY SCRIPTURE
TO STAND ON, and I INVITE EVERYONE TO CLAIM IT AS THEIR OWN.."With
long life will I satisfy you and show you my salvation!" I've been using this
scripture since February 14, 2010 when diagnosed, because God gave it to me as
a great great comfort. In other words, if you take it as your own internally,
He will make it come to pass! You will live a long life and He will show you
His salvation!
I do not want to offend anyone with being spiritual, as I was warned when
beginning on here that it is for all faiths. But the whole psalm is an uplift
for Jewish and Christian believers. God bless you all! I will not keep
posting scripture as to not offend anyone. But I hope it blesses most of you!
18's,
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 ANOTHER GOOD ONE THAT I CLAIM FOR MYSELF
-Original Message-
From: 'Icandoallttc' via CMLHope
To: cmlhope
Sent: Sat, Jun 20, 2015 9:58 am
Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not
crying.
Loved it Marty!!
Thanks. I love psalms 46 also!!!
Prayers & Blessings Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center
On Jun 19, 2015, at 8:58 PM, Marty Gartenberg < wa2...@gmail.com> wrote:
Thank you for praying Psalm for me. I am enclosing a copy so that every one can
read it.
Psalm 91
1
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.[a]
2
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
3
Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5
You will not fear the terror of night,
nor the arrow that flies by day,
6
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8
You will only observe with your eyes
and see the punishment of the wicked.
9
If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
10
no harm will overtake you,
no disaster will come near your tent.
11
For he will command his angels concerning you
to guard you in all your ways;
12
they will lift you up in their hands,
so that you will not strike your foot against a stone.
13
You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14
“Because he[b] loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15
He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16
With long life I will satisfy him
and show him my salvation.”
18's,
Marty
On Fri, Jun 19, 2015 at 5:16 PM, 'Susan Zimmerman' via CMLHope
wrote:
Hey Marty,
Please notice that I also say blessings with the 18's Life and blessings. I
wish you many, many blessings. I also pray Psalm 91 over you!!! You are
precious, and so is everybody else on here. I just usually cannot e-mail as
often as all you guys do! I feel like I never get anything done anyway, what
with fb to keep up with, lol. Gotta keep up with facebook! I wish more of you
would join that...???
18's and Blessings to all,
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 < cmlhope@googlegroups.com>
Sent: Fri, Jun 19, 2015 4:49 pm
Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not
crying.
Re: [CMLHope] Jeans Moffitt visit
Joyce, you r definitely in my prayers as well as all of you. Prayer changes things for sure if we pray with a pure heart and faith in JC and God. Love you all. SZ Sent from my Sprint phone -- Original message--From: 'Icandoallttc' via CMLHope Date: Sun, Jun 21, 2015 5:13 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Jeans Moffitt visit Thanks Joyce. Good luck with all. Let's keep our prayer circle strong!! Warriors all!! Prayers & Blessings Jeanie 🐟🐟18,sDx 1/2004Started Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer Center On Jun 21, 2015, at 12:13 AM, Joyce Mesnarich wrote: Jeanie,I did not have a ct scan. At least not yet. I have had mammograms, ultra sounds and MRIs. I had 2 different biopsies, both confirming breast cancer. I am now taking a pill to hopefully shrink the tumors before surgery. Thanks for your prayers and concern. Joyce in IL On Jun 20, 2015, at 9:13 AM, 'Icandoallttc' via CMLHope wrote: Oh no Joyce. So sorry about the breast cancer!! Did they do a ct scan on your breast?Good luck on all the test. My prayers are with you. Maybe you could go on the ponatinib if the other tki doesn't work. I have had complete positive response in 6 months. Have faith and courage. I am 77. ❤️❤️ Prayers & Blessings Jeanie 🐟🐟18,sDx 1/2004Started Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer Center On Jun 19, 2015, at 11:54 PM, Joyce Mesnarich wrote: Jeanie,So happy that your new TKI is working. On July 9 my hubby and I will go to see Dr Talpaz in MI to see if his new TKI, bosulif, is working. In April it was not doing anything and they doubled his dose to 100 mg. We are hoping that this does the trick.Best of luck on your upcoming ct scan. Seems like it is always something, doesn't it?I was recently dx with breast cancer, so I am going through a bunch of tests, biopsies, etc. to see what my next step is. I am 75, so this is not as big a deal to me as if I was younger. But I will do whatever is necessary to fight this. Fight on, warriors. Joyce in IL On Jun 19, 2015, at 12:43 PM, 'Icandoallttc' via CMLHope wrote: Hello to everyone and thanks for the uplifting. This tki is really working. Praise The Lord!!! Going to have a ct scan soon of my thorax to make sure everything is good. Happy Friday!!! Prayers & Blessings Jeanie 🐟🐟18,sDx 1/2004Started Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib January 2015Dr Balducci Moffitt Cancer Center On Jun 18, 2015, at 4:54 PM, bkbarney via CMLHope wrote: Jeannie..what FABULOUS NEWS :) You rock, I know this has been a very very difficult journey on ponatinibit's so nice to hear that it is doing it's job, and that you are adjusting to the medication...I am just s happy for you because I know it's been a really challenging time. your resiliency and staying your course with a positive outcome is a real lift for all of us struggling out hereMay your good news continue for decades to come... Hugs and 18's, Beth -Original Message- From: 'Icandoallttc' via CMLHope To: cmlhope Sent: Thu, Jun 18, 2015 3:43 pm Subject: [CMLHope] Jeans Moffitt visit Blood test was great. All counts normal. Don't have to go back for 3 months. Yahoo!!!Prayers & Blessings Jeanie 18,sDx 1/2004Started Gleevec2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started PonatinibJanuary 2015Dr Balducci Moffitt Cancer Center-- -- [CMLHope]Asupport group ofhttp://cmlhope.com-Youreceived this message because you are subscribed to the Google Groups "CMLHope"group.To post to this group, send email to CMLHope@googlegroups.comTounsubscribe from this group, send email toCMLHope-unsubscribe@googlegroups.comFor more options, visit this group athttp://groups.google.com/group/CMLHope--- You received this message becauseyou are subscribed to the Google Groups "CMLHope" group.To unsubscribe fromthis group and stop receiving emails from it, send an email tocmlhope+unsubscr...@googlegroups.com.for more options, visithttps://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 s
Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.
Hey Marty, Please notice that I also say blessings with the 18's Life and blessings. I wish you many, many blessings. I also pray Psalm 91 over you!!! You are precious, and so is everybody else on here. I just usually cannot e-mail as often as all you guys do! I feel like I never get anything done anyway, what with fb to keep up with, lol. Gotta keep up with facebook! I wish more of you would join that...??? 18's and Blessings to all, 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: Fri, Jun 19, 2015 4:49 pm Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not crying. Dear Susan, I'm glad to see that you are using 18's at the end of your posts. As you already know it's meaning is life and that is what I pray for everyone. 18's, Marty On Fri, Jun 19, 2015 at 11:18 AM, 'Susan Zimmerman' via CMLHope wrote: hahahaha, Marty. I knew your talents were endless! Jeannie, so excited for you! 18's and blessings, Susan F. Zimmerman -Original Message- From: Marty Gartenberg < wa2...@gmail.com> To: CMLHope < CMLHope@googlegroups.com> Sent: Fri, Jun 19, 2015 12:29 am Subject: [CMLHope] Humor is the spice of life. When your laughing your not crying. This is a little "spicy" but rather funny. By now you must all know me. I have been asked many times how I can have an operation for a kidney transplant as well as a bone marrow transplant some 26 years and still be able to spread humor. As I mentioned humor is the spice of life and without it where would all of us be? over the years i have learned how to control my frustrations as well as any anxieties. and knowing that, it just makes my life a little better. So here it is and I hope that no one will be offended. I would hope that you read it and laugh. Remember that when your laughing your not crying. 18's to each and every one of you. Please keep on posting your good news, I just love to hear it. In fact when your feeling better then so do I. We are just like a close knit family... Again 18's Marty PS now you all know what I recently went through. I was always telling jokes to the nurses and this also made me feel much better. In fact I was out of the hospital in only three days after my kidney transplant. Everyone was amazed. Okay here it is. I was called by our local fire rescue department and they told me that you forwarded my name and circumstances to them. It seems that they want to hire me because they found out that i had a kidney transplant from a twenty year old man. "He must have drank a lot of beers" I also had my prostate reamed out so i would be able to pee. Yes indeed i can now pee just like when i was a kid drinking at Moriarty's bar on Flatbush Ave in Brooklyn After drinking 7 or 8 beers with a lemon slice in each of them i got the urge to take a bathroom break and pissed my brains out. As i matured i learned just how to be able to control it to put this to use but never got the chance until now. Well, it seems to have happened again. So i wondered why the fire department called me until they explained why they wanted to hire me. Besides knowing about the transplant and prostate operation, i was going around Palm Beach County resort areas including most of the federal governments national parks just for fun. What they found out was there were a lot of complaints about me pissing on the peoples camp fires and putting them out. So i guess they wanted some of my services. What they told me was that since i now
Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.
hahahaha, Marty. I knew your talents were endless! Jeannie, so excited for you! 18's and blessings, Susan F. Zimmerman -Original Message- From: Marty Gartenberg To: CMLHope Sent: Fri, Jun 19, 2015 12:29 am Subject: [CMLHope] Humor is the spice of life. When your laughing your not crying. This is a little "spicy" but rather funny. By now you must all know me. I have been asked many times how I can have an operation for a kidney transplant as well as a bone marrow transplant some 26 years and still be able to spread humor. As I mentioned humor is the spice of life and without it where would all of us be? over the years i have learned how to control my frustrations as well as any anxieties. and knowing that, it just makes my life a little better. So here it is and I hope that no one will be offended. I would hope that you read it and laugh. Remember that when your laughing your not crying. 18's to each and every one of you. Please keep on posting your good news, I just love to hear it. In fact when your feeling better then so do I. We are just like a close knit family... Again 18's Marty PS now you all know what I recently went through. I was always telling jokes to the nurses and this also made me feel much better. In fact I was out of the hospital in only three days after my kidney transplant. Everyone was amazed. Okay here it is. I was called by our local fire rescue department and they told me that you forwarded my name and circumstances to them. It seems that they want to hire me because they found out that i had a kidney transplant from a twenty year old man. "He must have drank a lot of beers" I also had my prostate reamed out so i would be able to pee. Yes indeed i can now pee just like when i was a kid drinking at Moriarty's bar on Flatbush Ave in Brooklyn After drinking 7 or 8 beers with a lemon slice in each of them i got the urge to take a bathroom break and pissed my brains out. As i matured i learned just how to be able to control it to put this to use but never got the chance until now. Well, it seems to have happened again. So i wondered why the fire department called me until they explained why they wanted to hire me. Besides knowing about the transplant and prostate operation, i was going around Palm Beach County resort areas including most of the federal governments national parks just for fun. What they found out was there were a lot of complaints about me pissing on the peoples camp fires and putting them out. So i guess they wanted some of my services. What they told me was that since i now have a powerful stream whenever i urinate they wanted to hire me whenever there was a high riser fire. Anything around ten stories i would be called to the fire scene and take out my penis, aim it upward and put out that ten story fire. My stream was so powerful that it would actually break the windows to let in my pee. They also made me aware of the fact that if i squeeze a lot i could actually make it up to another two stories. Now i don't think that there are that many high riser buildings in palm beach county but it was nice to know anyway. Now since they already have their hoses out then i can keep filling up and continue again and again. By the way whenever i pee into the toilet i make dents in the porcelain toilet just like hale hitting a car window. I may want to use what is called a condom valve when i am at home to avoid buying and replacing new toilets. I want to thank you for bringing up my name and circumstances. This could be a very lucrative job. It's nice to be wanted You see that is what friends are for. -- -- [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...@googleg
Re: [CMLHope] Marty's Post on CML2
I am rejoicing with you, Marty!!! And praying. Love and hugs, 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: Tue, Apr 21, 2015 8:50 pm Subject: Re: [CMLHope] Marty's Post on CML2 Thank you Beth. I am trying to do a lot of exercise to try and get back into shape. It is working little by little but always moving forward, On May 7th i will have another operation on my prostate to make it be able to pass urine. I have had a urine catheter in me for more then seven weeks because of my enlarged prostate. That seems to be the worst thing that someone can go through and i can't wait until it comes out and the operation to my prostate is over with. 18's Marty On Tue, Apr 21, 2015 at 5:19 PM, bkbarney via CMLHope wrote: Marty, It's soo good to hear from you...and know how you are doing...sounds like you are making slow and steady progresswalking outside.building up your stamina...sounds like a BIG operation...and you came through well I am so happy...prayers answered...may everyone have a good week ahead...your email made mine!! :) Beth -Original Message- From: Richard H < rbhuffm...@gmail.com> To: cmlhope < cmlhope@googlegroups.com> Sent: Mon, Apr 20, 2015 11:05 pm Subject: [CMLHope] Marty's Post on CML2 thank you Ester and everyone else. You are all such nice people. This is a family, and we have grown even closer as we get to know one and other. I continue to get a little better as the days go by. Mostly weakness in the core of my midsection but that is where i was opened up. Just to let you know when a kidney is transplanted it does not go in your lower back but rather in your groin because they want good blood flow going directly to it. They actually use your abdominal aorta and a large vein. And that is why i have an incession from the right side of my abdomen to the other side of my abdomen. So it is a healing process that requires me to do a lot of physical exercises. I have been going outside with my walker and someone always watching me because if i fall then it will be very bad and set me back. Every day i try to walk just a little more then the day before and it makes me out of breath so i stop and rest for a minute or so then keep on going. The whole trick to this is to put your mind into a stage of knowing the more you walk or do any exercise the better your going to feel once your finished and take a rest. I also have a physical therapist that comes here and we do even more exercise, so it is really helping me to recover but it is a slow process 18's to everyone Marty Thanks for the update. Nothing like getting outside for a bit to Nature to help lift your spirit. Richard H. -- -- [CMLHope] A support group ofhttp://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email toCMLHope@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, visithttps://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/grou
Re: [CMLHope] Checking in/ to all my CML friends
Hi Joyce, So sorry it took me this long to answer you. I've been avoiding e-mails cuz been real busy. Yes, I did have a liver enzyme jump about the third month on bosulif myself, just taking 100 mg. But they said it was just slightly above normal, and the next month it was back in normal range. I am so glad I am also on a low dose! It also took me 6 months to get in remission. So glad Wayne got off sprycel after the plural effusion. That stuff scares me! Keep me posted about his enzymes. So do you mind telling me what town you guys live in? Just curious, no big reason. It is farther than I thought we were, but close cuz of this group for sure. :-) 18's and No Stress, Susan F. Zimmerman -Original Message- From: Joyce Mesnarich To: cmlhope Sent: Fri, Apr 3, 2015 1:15 am Subject: Re: [CMLHope] Checking in/ to all my CML friends Hi, Susan We live on the western edge of IL, about 50 miles south of St Louis, MO, across the great Mississippi. So we are completely across the state of IL and half of IN away from you. But this group makes us close. Right? We don't know yet if bosulif is working for Wayne. He has an appointment to see Dr Talpaz on April 16 in Ann Arbor and we will find out a few weeks after that about the PCR. They have had him getting blood tests every two weeks and they just called today about his last blood report and were concerned about a sudden big rise in his liver enzymes. Don't know yet what they are thinking but it is scary. He has tolerated bosulif very well, but now this. Back on the roller coaster. I don't know why they put Wayne on a low dose. After he had a bad reaction to Gleevec, they put him on Sprycel at 50 MG, also a low dose. But it put him in major molecular in about six months. Then he got pleural effusion and they took him off Sprycel. In 3 months his numbers were rising quickly and he started bosulif the end of January. You were very fortunate to have gone 7 years without TKIs. Have you ever had any issues with liver enzymes being out of bounds? Anybody else on this site have liver issues? I hope you get a good report on the 23rd. Joyce in IL On Apr 2, 2015, at 4:55 PM, 'Susan Zimmerman' via CMLHope wrote: Hi Joyce and Wayne, Enjoyed your encouragement for the people below. Just wanted you to know I'm also on 100 mg of bosulif since last April 30th, and doing quite well! Last test was done 3 months ago, but it was a fakeout as they got no results cuz it was botched. So I opted to wait 3 more months to go back, as we had spent a lot of money to go into Chicago and do some fun things. I go back I think on April 23rd. My last check I was in remission but not down to zero quite yet. It's going to be exciting to hear the good news when you get it that his counts are going down. Do you know what they are now? Where in southern Illinois do you live? We are in Granger, IN, top middle of Indiana, about 2 hrs 20 min. from downtown Chicago if no traffic. I had to choose between Dr. Talpaz and Dr. Altman from recommendations by my old doc in Fla. at Moffitt.(We moved back home to Indiana in 2010 from Fla.) I went 7 yrs and 2 mos without any medication after being on gleevec for 2 years because I had several brain bleeds and didn't want to die from thatlol So I defied the docs and said no med until I go out of remission. I never came out of cellular remission, but counts were 23 INT'l scale when I began bosulif. I told them I wanted the lowest dose, and it's working! Why is Wayne on the lowest dose again? I know you've told me, but I forget! (chemo brain?) Many blessings and Happy Easter, Susan F. Zimmerman -Original Message- From: Joyce Mesnarich < joy...@htc.net> To: CMLHope < CMLHope@googlegroups.com> Sent: Thu, Mar 19, 2015 11:53 pm Subject: [CMLHope] Checking in/ to all my CML friends Haven't posted for a week or so, but I have been monitoring the site. Sherri, you said it is getting warmer in Northern Illinois and the snow is beginning to melt. I guess you are planning on sending it down to us in Southern Illinois. LOL We will all feel better when it gets warmer and the sun shines more. Jeanne, so sorry to hear that you are still having ear pain. Stay on it. You have been through a lot lately and I suppose you have put this ear thing at the bottom of the list. So go for it now! Glad to hear you are tolerating ponatinib. Greenie, glad to know your colonoscopy had a good outcome. My husband has been through 2 of them in less than 2 years. They
Re: [CMLHope] Today's Test
YAY RICHARD!!! So glad for you. 18's and delighted, 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: Richard H To: cmlhope Sent: Fri, Apr 3, 2015 12:28 am Subject: Re: [CMLHope] Today's Test All my doctors are jumping up and down because bcr/abl dropped from 17.9+% to 1.6+% international scale. I am also. The hemoglobin is the center of attention right now. We have added an otc iron table 65mg daily and that is helping with the fatigue. I will do a CBC the end of the month to check on everything. I am loving the decreased (Gleevec) fog being on only 300mg. Richard H. On Thursday, April 2, 2015 at 5:00:39 PM UTC-5, rszi...@aol.com wrote: Sorry to hear this Richard. I hope they will proceed to the next drug, (bosulif is working for me), and we have similar histories. It is so tough to fight the fatigue. I feel for ya! What are your bcr/abl numbers at last check because of the gleevec? Hoping they are good. Have a wonderful holiday weekend,. and 18's, Susan F. Zimmerman -Original Message- From: Richard H < rbhuf...@gmail.com> To: cmlhope < cml...@googlegroups.com> Sent: Tue, Mar 24, 2015 12:11 am Subject: [CMLHope] Today's Test I had my CBC-DIFF blood test today. Not good for me. My HGB is dropped from 10.2 to 9.6. ONC is ordering the iron test so we can be prepared to start Procrit again, and IF that fails we will discuss proceeding downward until it is transfusion time or just proceed to the next drug. Yes, I expected this result as my fatigue has been increasing. It has tried to be spring here the last couple of weeks, but they say we are going to have winter's last fling starting with rain and ending with sleet pellet/penny size on Saturday. I too am becoming anxious about our Marty. He is in my daily prayers. 18's as Marty advocates. 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] Dual Diagnosis: CLL/ CML
Dear David, Dealing with two issues has happened to several of us, but usually not two types of leukemia! You are very special to decide to keep fighting on this. What choice do we really have? It's a win-win, if we leave this earth we go to a better place forever, or if we stay here longer we get to enjoy our loved ones. Sounds like your wife is pretty special and needs a little care for herself, too. Tell her I suggest a nice soak in the tub in epsom salts and lavender oil. It's a great pampering device, and soothes the nerves. May your holiday be pleasant as you derive your strength from Him. We are in this together, you are not alone. Blessings and 18's, Susan F. Zimmerman -Original Message- From: David Bradley To: cmlhope Sent: Fri, Apr 3, 2015 8:09 pm Subject: RE: [CMLHope] Dual Diagnosis: CLL/ CML Dear Joyce, Actually, God and I are in this for the duration and I (fortunately) don't see that there are many alternatives to that. I only wish that when my appetite goes bad, and I am feeling detached from the things that once might have led me astray, that it would automatically create lots of face-time with God. Instead I am checking my edema, taking my blood pressure, setting up reminders to take my pills, worrying about my wife (a super care-taker who also looks after an 88-year-old Mom), etc. Still, whenever I ask for God's company, I usually get some sense of presence. It's not necessarily to fix the problems: more to reset my compass. I have been very lucky with the care I've received, and I'm good for now. I'm glad your husband has Dr. Talpaz (and you). I have learned to have a lot of gratitude for these dedicated health care people (and my wife!). All the best to you and your husband, David From: joy...@htc.net Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML Date: Fri, 3 Apr 2015 12:37:14 -0500 To: cmlhope@googlegroups.com David, The Bible tells us that God will not give us more than we can handle, but I think you are coming close. So sorry you have to deal with two blood problems at the same time. I see you live in Northern Michigan. Have you considered seeing Dr Talpaz in Ann Arbor at the University of Michigan Cancer Center? My husband comes all the way from Southern Illinois to see him. He is very knowledgable in CML and I am sure he treats other leukemia types as well. He was instrumental in the formation of Gleevec and Sprycel and several other TKIs. We recommend him highly. But I am sure you are getting good care at Mayo. Please stay in touch and let us know how you are progressing. You are in my prayers. God bless and keep you. Joyce in IL On Apr 3, 2015, at 9:12 AM, גיורא wrote: Dear David You are a special brave person and i wish you all the best and great success on your dual fight. You are the only person i have heard of that is on both Ibrutinib and Imatinib at the same time My best regards Giora נשלח מה-iPhone שלי ב-3 באפר׳ 2015, בשעה 16:51, David Bradley < dbra...@hotmail.com> כתב/ה: Thanks Beth! Time for another update. Based on my PCR that was negative for CML in December, and my looming CLL, I was taken off Gleevec, and started Imbruvica for my CLL, with the hope that the CML would remain dormant. There have been two slip-ups since then. The Imbruvica triggered a heart problem, an atrial fibrillation in February. At the end of a week in hos[pital, I was given one of those treatments with the electric paddles and fortunately immediately went back into a good rhythm. Arriving home, I started a recovery process in which I am still weaker than I was, but a bit better every day. Then it was time for a new PCR. My old nemesis, the Philadelphia chromosome, was back (that was quick!). So now I am back on Gleevec. My Imbruvica has to be on a 1/3 basis, since both drugs are Bruton's Tyrosine Kinase inhibitors, and both use the CYP3A4 pathway. It has only been since December that I was off Gleevec, but my heartburn reminds me of the main downside I had from it. Still, I have faith it can keep the CML at bay. Anyway, as I said, I'm better every day, and besides, spring has finally come to northern Michigan. David
Re: [CMLHope] Today's Test
Sorry to hear this Richard. I hope they will proceed to the next drug, (bosulif is working for me), and we have similar histories. It is so tough to fight the fatigue. I feel for ya! What are your bcr/abl numbers at last check because of the gleevec? Hoping they are good. Have a wonderful holiday weekend,. and 18's, Susan F. Zimmerman -Original Message- From: Richard H To: cmlhope Sent: Tue, Mar 24, 2015 12:11 am Subject: [CMLHope] Today's Test I had my CBC-DIFF blood test today. Not good for me. My HGB is dropped from 10.2 to 9.6. ONC is ordering the iron test so we can be prepared to start Procrit again, and IF that fails we will discuss proceeding downward until it is transfusion time or just proceed to the next drug. Yes, I expected this result as my fatigue has been increasing. It has tried to be spring here the last couple of weeks, but they say we are going to have winter's last fling starting with rain and ending with sleet pellet/penny size on Saturday. I too am becoming anxious about our Marty. He is in my daily prayers. 18's as Marty advocates. 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] Checking in/ to all my CML friends
Hi Joyce and Wayne, Enjoyed your encouragement for the people below. Just wanted you to know I'm also on 100 mg of bosulif since last April 30th, and doing quite well! Last test was done 3 months ago, but it was a fakeout as they got no results cuz it was botched. So I opted to wait 3 more months to go back, as we had spent a lot of money to go into Chicago and do some fun things. I go back I think on April 23rd. My last check I was in remission but not down to zero quite yet. It's going to be exciting to hear the good news when you get it that his counts are going down. Do you know what they are now? Where in southern Illinois do you live? We are in Granger, IN, top middle of Indiana, about 2 hrs 20 min. from downtown Chicago if no traffic. I had to choose between Dr. Talpaz and Dr. Altman from recommendations by my old doc in Fla. at Moffitt.(We moved back home to Indiana in 2010 from Fla.) I went 7 yrs and 2 mos without any medication after being on gleevec for 2 years because I had several brain bleeds and didn't want to die from thatlol So I defied the docs and said no med until I go out of remission. I never came out of cellular remission, but counts were 23 INT'l scale when I began bosulif. I told them I wanted the lowest dose, and it's working! Why is Wayne on the lowest dose again? I know you've told me, but I forget! (chemo brain?) Many blessings and Happy Easter, Susan F. Zimmerman -Original Message- From: Joyce Mesnarich To: CMLHope Sent: Thu, Mar 19, 2015 11:53 pm Subject: [CMLHope] Checking in/ to all my CML friends Haven't posted for a week or so, but I have been monitoring the site. Sherri, you said it is getting warmer in Northern Illinois and the snow is beginning to melt. I guess you are planning on sending it down to us in Southern Illinois. LOL We will all feel better when it gets warmer and the sun shines more. Jeanne, so sorry to hear that you are still having ear pain. Stay on it. You have been through a lot lately and I suppose you have put this ear thing at the bottom of the list. So go for it now! Glad to hear you are tolerating ponatinib. Greenie, glad to know your colonoscopy had a good outcome. My husband has been through 2 of them in less than 2 years. They insist he has blood in his stool, but both times they did a colonoscopy, endoscopy (down the throat and into the stomach), and he even swallowed the camera, just in case something was missed. All tests came back ok. That's good, but where is the problem His blood counts go down, indicating he is losing blood and they go through the same song and dance with no answers. Don't know what to do next. Get the breast thing checked out quickly. This, too, you will overcome, if it is indeed something. May be nothing. Now you know what all us women go through. Just kiddinga little levity is needed sometime. My thoughts and prayers are with you. Marty, I know you are out there somewhere and probably your wife is checking this site from time to time. Just know that we are all praying for you. I know that the operation you just had is probably the hardest thing you may have gone through.I know the bone marrow transplant was no walk in the park. But you have added a few years since then and it stands to reason that we don't have the same "bounce back" that we did when we were younger. Just be patient and do whatever they tell you.within reason. God bless and keep you! My husband, Wayne, has been on bosulif for a month now, after having to stop Sprycel in August because of pleural effusion. He is doing very well, so far. He is on a small dose (100 mg). He will go to see Dr Talpaz in Michigan the middle of April for testing. Then a few weeks later we will know if bosulif is working its magic. Joyce in IL -- -- [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] Re: U[PDATE FOR MARTY
Hey Marty, We are so thankful you made it through the surgery! Now that we have seen your written word, we can pray and keep you in our thoughts to get rid of that pain and improve like Marcie says. Love and hugs, and 18's, Susan -Original Message- From: margood18 via CMLHope To: cmlhope Sent: Mon, Mar 30, 2015 9:39 am Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY Marty, we understand and just wish the very best for you. I hope you will see improvement every day. Stay strong and know that you are in our thoughts and prayers. Marcie -Original Message- From: Marty Gartenberg To: cmlhope Sent: Mon, Mar 30, 2015 8:54 am Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY Just to let everyone know, I do consider all of you as my extended family. When someone hurts then so do we all. We are all a very tight knit group. Please know that It has been very difficult for me to stay in touch with all of you because this procedure has kept me in and out of the hospital several times. However be assured When ever I can I will be in touch. Also sometimes the pain is so bad that I have to be medicated and just can't seem to keep an open mind. In all of this I have learned how to accept the pain but trying to keep it under control is another story. If I don't return your emails it will be taken care of as soon as I can get my strength back. Thank you for your understanding. 18's Marty On Mon, Mar 30, 2015 at 12:18 AM, Richard H wrote: Marti's has spoken. It's great to hear from you. This is just to let you know that we are all very concerned about your progress. Your CML family is worrying and praying for your recovery. I am sorry to hear you are having pain, hope they find some relief so you feel better. RicharH. On Sunday, March 29, 2015 at 7:34:42 PM UTC-5, wa2yyx wrote: Hi everyone, I did get my kidney transplant and I am trying to recover, i am in a lot of pain but when I feel better I will let you know 18's On Sun, Mar 29, 2015 at 8:19 PM, Myvety2k via CMLHope wrote: Jeanie, let's us know as soon as you find out something. O. K. I'll be thinking of you. I'm worried about Marty to. greenie In a message dated 3/29/2015 6:24:19 P.M. Eastern Daylight Time, cml...@googlegroups.com writes: Wish we could hear from him. Going to Moffitt tomorrow to see how the ponatinib is working. Going every two weeks now. Check in with the results soon. Prayers & Blessings Jeanie . 18,s On Mar 29, 2015, at 8:37 AM, mariac...@gmail.com wrote: Any new updates on Marty? Marty, we do love you and wish to know how you are doing!! Maria :) On Saturday, February 28, 2015 at 1:31:09 AM UTC-4, Richard H wrote: This was posted to CML2 on YAHOO.
Re: [CMLHope] Moffit visit
HI Jeanie,
So sorry you are going thru all these side effects. Like Beth I hope you can
quickly reach zero so you can lower the dose. But again, happy that it is
working on the leukemic cells! Cinderella opens around here today, maybe you
would get your mind off it by watching that at the big screen theater? Best to
you,
And Beth, of course it is the same date! We will make it another time, I'm
sure. Best to you as well as you continue to fight the battle.
Your e-mails are always very uplifting. God bless!
Susan
-Original Message-
From: bkbarney via CMLHope
To: cmlhope
Sent: Thu, Mar 12, 2015 4:25 pm
Subject: Re: [CMLHope] Moffit visit
Jeanie,. I know this is what you need. And I am deeply glad that there is such
a drug that can help you and others who become resistant to some of the other
TKI's. Myprayer for you is if the Ponatinib can kick your cancer to the curb,
you may be able to take a lower dose and maintain. Those on lower doses of
POnatinib seem to fair better regarding side effect profile. I hope that can be
in your future. For now, breath in and out and try, if you can and feel up to
it, to do some things that relax you, tickle your funny bone, just trying to
find moments that uplift you...to help you through this rough patch. I am
praying for you...big hug. Beth
-Original Message-
From: 'Icandoallttc' via CMLHope
To: cmlhope
Sent: Thu, Mar 12, 2015 2:47 pm
Subject: Re: [CMLHope] Moffit visit
Hi Beth and thanks. Doctor says ponatinib is very toxic but I had no choice.
My skin is peeling and my hair is falling out just like it did on gleevec.
Thanks for the prayers and uplifts.
I hope you have a good doctors visit.
Prayers & Blessings Jeanie
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
18,s
On Mar 12, 2015, at 2:30 PM, bkbarney via CMLHope <
cmlhope@googlegroups.com> wrote:
Jeanie, so glad blood is looking good. Hope platelets stay around 150
for you..and that you start to feel better on the drug. I go to do my BCR abl
on Monday. B
Susan, oh no...I will being seeing Dr. Druker on the 23rd. Darn, of course, I
will be in Oregon while you are in Chicago...murphies lawnext time then! if
my schedule for Dr. Druker changes, I will let you know.
Warm regards,
18'sBeth
-Original Message-
From: 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Thu, Mar 12, 2015 9:37 am
Subject: [CMLHope] Moffit visit
Blood is good. Platelets dropping to 133. Rather them be low than high.
Hope everyone is good today.
Prayers & Blessings Jeanie
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
18,s
On Mar 11, 2015, at 6:26 PM, "'Susan Zimmerman' via CMLHope" <
cmlhope@googlegroups.com> wrote:
Dear Beth,
I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour
and half or socan you meet after that? My husband usually brings me, so
you can meet him, too! Where would you like to meet? I will be at
Northwestern which is downtown, so you name it! Dr. Drukeryou go out there
when in April? I'm happy you get to gomy friend Sharon Kraby also flies
from Florida to him regularly.
Marcie, thanks for the shout-out! Sure hope your bone pain is gone and you
are in the pink again.is it? Do I remember you lowered your mg of gleevec?
That should help, did it?
18's,
Susan F. Zimmerman
-Original Message-
From: bkbarney via CMLHope < cmlhope@googlegroups.com>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Wed, Mar 11, 2015 1:34 pm
Subject: Re: [CMLHope] CML visit
Re: [CMLHope] CML visit
Dear Beth, I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour and half or socan you meet after that? My husband usually brings me, so you can meet him, too! Where would you like to meet? I will be at Northwestern which is downtown, so you name it! Dr. Drukeryou go out there when in April? I'm happy you get to gomy friend Sharon Kraby also flies from Florida to him regularly. Marcie, thanks for the shout-out! Sure hope your bone pain is gone and you are in the pink again.is it? Do I remember you lowered your mg of gleevec? That should help, did it? 18's, Susan F. Zimmerman -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Wed, Mar 11, 2015 1:34 pm Subject: Re: [CMLHope] CML visit Susan, I would love to meet with you for a tea or coffee while you are in Chicago if you are up for it. Let me know. I am going to Dr. Druker in April, hopefully our trip times won't overlap. Thanks for your prayers..always so helpful...and Marcie, you have a great day too! 18"s Beth -Original Message- From: 'Marcie Goodman' via CMLHope To: cmlhope Sent: Tue, Mar 10, 2015 9:28 pm Subject: Re: [CMLHope] CML visit Susan, So good to hear from you and I know how good it is to see the snow melt away. Take good care and thanks for always lifting us up in prayer. Marcie Sent from my iPhone On Mar 10, 2015, at 10:10 PM, 'Susan Zimmerman' via CMLHope < cmlhope@googlegroups.com> wrote: Dear Greenie, Thinking of you and hoping for a good report. This is just another small bump in the road. I am praying extra for you. God bless and keep us posted. I am thinking about all of you and pray for good news. The great news is we get up every day and I really think we might see Spring soon! All our snow is melting FAST here in northern Indiana50 for most of the week. My dog is elated she can roam the dead grass instead of the snow again! Beth will await your reports' findings as well. I don't go to Chicago until mid-April for more tests. So it will be six months in between tests, which is not recommended. But they screwed up the last test, so I'm just patiently waiting 18's and good sleep to all of you, Susan -Original Message- From: bkbarney via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Tue, Mar 10, 2015 5:29 pm Subject: Re: [CMLHope] CML visit Dear Greenie, I hope your test results come out O.K., and they can find a simple explanation for your weight loss. So sorry you are going through the stress of all this...thinking of you And Richard, as Sherri said, great news about your hemoglobin and the collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just to rule out and give you peace of mind. Are you more tired than usual??? Stay positive and stay strong. Keep us posted... And Sherri, so sorry you had to have a transfusion, but I hope it made you feel better and stabilized your counts.. Still praying for Marty. Jeannie, I know it's been a rough two months on ponatinib and you have felt miserable...I hope it gets better with time, and maybe, you can take less of a dose in months, years to come, if your doc recommends it to help you with the toxicity. thinking of you... Not a lot new to report herestill working on understanding and treating muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule out any other possible cancers lurking, but I don't think that is it..at least I, like Greenie, sure hope not. 18's to all Beth -Original Message- From: Myvety2k via CMLHope <
Re: [CMLHope] CML visit
Dear Greenie, Thinking of you and hoping for a good report. This is just another small bump in the road. I am praying extra for you. God bless and keep us posted. I am thinking about all of you and pray for good news. The great news is we get up every day and I really think we might see Spring soon! All our snow is melting FAST here in northern Indiana50 for most of the week. My dog is elated she can roam the dead grass instead of the snow again! Beth will await your reports' findings as well. I don't go to Chicago until mid-April for more tests. So it will be six months in between tests, which is not recommended. But they screwed up the last test, so I'm just patiently waiting 18's and good sleep to all of you, Susan -Original Message- From: bkbarney via CMLHope To: cmlhope Sent: Tue, Mar 10, 2015 5:29 pm Subject: Re: [CMLHope] CML visit Dear Greenie, I hope your test results come out O.K., and they can find a simple explanation for your weight loss. So sorry you are going through the stress of all this...thinking of you And Richard, as Sherri said, great news about your hemoglobin and the collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just to rule out and give you peace of mind. Are you more tired than usual??? Stay positive and stay strong. Keep us posted... And Sherri, so sorry you had to have a transfusion, but I hope it made you feel better and stabilized your counts.. Still praying for Marty. Jeannie, I know it's been a rough two months on ponatinib and you have felt miserable...I hope it gets better with time, and maybe, you can take less of a dose in months, years to come, if your doc recommends it to help you with the toxicity. thinking of you... Not a lot new to report herestill working on understanding and treating muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule out any other possible cancers lurking, but I don't think that is it..at least I, like Greenie, sure hope not. 18's to all Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Mar 10, 2015 5:31 am Subject: Re: [CMLHope] CML visit Hi Group, As of last Tuesday I have lost 5 pounds and I don't know why. Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going over to get some blood work at 7 a.m. Comprehensive metabolic panel, cbc (no diff), vitamin B12 level and TSH, Ultrasensitive. Also he want's me to have a colonoscopy to screen for colon cancer Friday. I really don't need 2 different kinds of cancer so I'm worried. Will let you all know what happens. greenie In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time, swanson.sherri...@gmail.com writes: Richard, That is great news about the your haemoglobin. I also think it's great that your drs are talking to one another. That is so important. Last week, I had to get a transfusion as my counts were so low. I went to my onc and he did the usual blood draw and my WBC was 2.4. That was enough to send me over to the hospital for type and cross match and a transfusion. I too am eager to hear about Marty and pray for him everyday. Sherri On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope wrote: Richard, excellent news and I'm happy to hear that your hemoglobin has stabilized. Glad that your doctors are in sync, too, because that will certainly make your life easier. Yay! Marcie Sent from my iPhone On Mar 10, 2015, at 12:15 AM, Richard H < rbhuffm...@gmail.com> wrote: I visited my VA ONC today and both ONCs are bck on the same page. The better news is it appears that my hemoglobin has stabilized at 10.5. we are going to move forward with the testing program until the end of May. Another piece of news that makes me very happy is that both ONC's works at Kansas University Cancer Center. The VA contracts it's Doctors and Fellows (Doctors in training). They can access all my records at both offices with the new
Re: [CMLHope] U[PDATE FOR MARTY
God did it again!!! We are all so profoundly happy that you are alive and fighting that pain. You are most amazing, and I'm sure you attribute that to our God. His miraculous powers are way past finding out! In other words, we cannot fathom the depth of His love for all of us. He loves you big-time, Marty, to keep you here on this earth again and still after all you've been through. Let me say again, "WE ARE ALL SO GLAD TO HEAR FROM YOU!" We are honored and grateful to be part of your life as well. Many prayers have been answered as you fight your way back to health, and will keep on going up. Rest assured my man that your assignments from Him are not over yet! And yes, please rest as long and continued as you need to repair your body back to good health. Habukkuk 1:5, my tag onto my usual e-mails rings very true today for YOU!!! And it goes for all the CML warriors that are united together on this cml hope site. Use it as your ammunition to continue to fight, because He will work a work!!! 18'S AND TAKE IT EASY, and blessings to all the warriors, Susan Z "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: Sat, Feb 28, 2015 9:37 pm Subject: Re: [CMLHope] U[PDATE FOR MARTY Hello to everyone, Now you all know why I do what I do. I love all of you just as my extended family. I am so honored and grateful to be a part of your lives, your very precious lives. I would like to share with all of you, a letter that I wrote to my kidney donors family. I would hopefully respect that they have the opportunity of reading it one day. 18's, Marty February 28th 2015 I write this to the family of the young man that gave of himself in order that I can survive. It has been four days since I received a kidney transplant from your loved one. I am in pain right now but I want to write this without any pain medication because I would like to have a clear mind so that I can speak to you from my heart and soul. It is very important to me to be able to write this to you, and I truly hope that you receive it. I hope that it is something that may give you less hurt in your hearts. First, I would like to send you my deepest condolences on the loss of your loved one. When I first got the call from the hospital that there was a matching kidney for me I was very happy. However, I also felt a great deal of guilt that someone had to be deceased in order for me to receive this very precious gift of life. I believe that there is a reason for everything that happens in this world. Sometimes we may not understand what these reasons are, and sometimes it hurts, but there is a reason for everything. I also believe that if someone does something to try and help someone else then it will come back to that person. More than twenty five years ago I had Leukemia and had to go through a bone marrow transplant. In order to do this I had to have total body radiation and chemotherapy. I remember the first time that I went into the radiation chamber. I got down on my knees, clasped my hands in front of me and made a promise to GOD. I prayed that if I were to survive I would go on to try and help others also go through this. And, this is something that I have done more than one hundred times since. This is what I meant when I said that if you try to help someone it will come back to you. This is what your loved one did for me. He has given me the opportunity to continue on, and even though I do not know his name I will continue to do this in his name. GOD knows exactly who he is, and I promise you that I will continue to dedicate my life to your loved one for giving of him to me. I truly hope that you will eventually receive my letter. Perhaps one of these days I might have the opportunity of meeting you. Sincerely, Marty On Sat, Feb 28, 2015 at 12:31 AM, Richard H wrote: This was posted to CML2 on YAHOO. Hello cml chums! I have wonderful news from/about our friend Marty! Marty left a message at my home sharing that he HAS had his transplant (0: is doing well(0: and that he greatly appreciates all of our prayers(0: ! (collective sigh of relief from all of us, right?) Let's continue to send our love, support and prayers to our amazing friend. ( 0: Caryl This is great news. I am now praying for a rapid recovery
Re: [CMLHope] Doctor's Visit
So happy for you, Richard!!! Fuzzy vision is weird, never had that myself.but those leg and foot cramps, yeah! Now with my bosulif and only on 100 mg, virtually no side effects. Your turn will come, I'm sure of it. Either they'll find a real cure or you'll get to bosulif eventually. Even going to 200 mg of gleevec would be great!!! I wish you the best for sure 18's, Susan Z -Original Message- From: Richard H To: cmlhope Sent: Tue, Feb 24, 2015 12:17 pm Subject: [CMLHope] Doctor's Visit I received my test results yesterday. It shows a major molecular reduction down to 1.579% on the international scale. The side effects (a long list) are minimal. The most aggravating are watery, fuzzy vision and leg, foot cramps from twinges to a pain level 3. I started on 400mg Gleevec and in 20 days I had gained 10 lbs. I stopped Gleevec for 7 days. I restarted 300mg Gleevec and it has been great so far. I have changed when I take Gleevec from evening to midday, as it was causing indigestion at bedtime. I have been able maintain my weight and have not shown any weight increase on 300mg Gleevec. Richard H. Dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-12/11/14 QT-PCR .003 4/09 QT-PCR .00156/09 QT-PCR .00219/09 QT-PCR .00281/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 RT-PCR 9.183% 4/13 RT-PCR 4.57% 6/13 RT-PCR 10.183% 10/13 RT-PCR 10.577% 2/14 RT-PCR 16.050% 5/14 RT-PCR Approx. 20% 10/14 Restarted 400mg Gleevec 12/11/14 Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days Started 300 mg Gleevec 1/27/14 QT-PCR 1.579% 2/15 -- -- [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] Doctor's Visit
Dear Susan, That was very interesting! I think we met once when I came to Miami to hear Dr. Druker with a friend named Sharon Kraby. Both of us of course have CML. We attended a meeting and dinner put on by LLS. It was great meeting Dr. Druker. Anyway, your history is unique as all of us have a unique story. I went 7 years without any medication and remained in cellular remission. Now I am on only 100 mg of bosulif for about 8 months, and in total MMR. Very few side effects. Be blessed and 18's, Susan F. Zimmerman -Original Message- From: 'educatorsusan' via CMLHope To: cmlhope Sent: Wed, Feb 25, 2015 7:56 am Subject: Re: [CMLHope] Doctor's Visit Richard and Greenie: I have been on 250mg of Gleevec now since 2008 or so. I'd have to look up the correct date. But in order to be on this dosage I am being closely monitored by Dr. Druker with PK and PCR tests every three months. I still have side effects with this dosage. I just had one huge major eyebleed. This has been followed by many leg cramps...bet it's related somehow because I had a spell of no cramping and this eyebleed appeared. Even at 250, my nano liter measurement was 1325. This is high for 250 mg of Gleevec. I just metabolize Gleevec differently than anyone else. Dr. Druker will only keep me on Gleevec because of my side effects. Only named two because they are the pertinent ones...but have tinnitus, blurring of vision, and a multitude of others. I take 2250 of Citrical PLUS daily in split dosages to counteract the cramping...lowered from 3000 something because I was on 400-600 mg of Gleevec from 2003-2008. I was written up in Blood magazine by Dr. Druker to show that all medications need to be tailored to each individual patient...no two patients are alike...think this was in 2009-2010. He told me that because of me, we were making history back then...of course he could not use my name but told me when I read the article, I would definitely know which patient I was! Good luck on your continued journeys. Hugs, Susan Rosenthal Miami, 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] Re: Kidney Transplant
Maria, I would buy cranberry capsules if I was you, as they work better in my book. I am diabetic also and can't stand the taste of non-sugared cranberry juice, (Lakewood brand). That's the only one without added sugar. 18's, Susan -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 20, 2015 7:30 pm Subject: Re: [CMLHope] Re: Kidney Transplant Hi Maria, Light and diet cranberry juice does have the same effect on your kidneys. Just be sure that it is pure cranberry juice and not mixed with other fruit juices like grape juice. 18's, Marty On Fri, Feb 20, 2015 at 7:01 PM, Maria Cashion wrote: Dear Jennie, no matter what, I always count my blessings I have the medication and will start it tomorrow morning after breakfast. BMA went OK, Results will be available in two weeks... Marty, I am diabetic. I drink light and diet cranbery juice. I don't know if it has the same effect... Must rest. Take care you all! Maria On Fri, Feb 20, 2015 at 8:31 AM, 'Icandoallttc' via CMLHope wrote: What good news Maria!!! It sounds like you had an awful insurance experience!! My team at Moffitt took care if getting my ponatinib and I think that is why it was approved so quickly. I was really worried as I had no idea they would approve it that quick. It was a good thing too as my platelets were in the millions and my WBC dangerously high. After only 22 days on ponatinib the blood counts are back to normal. I think the reason they start on a high dose is to get you back in remission as soon as possible. Then they can lower the dose if needed, at least that is always happened in my case. I have high blood pressure and heart problems and they went ahead and put me on ponatinib even though they know the risk. And you are right. They don't listen. Are you blood counts out if whack? They can test you for the mutant for sprycel. I had it. So happy you got your meds. That is always a hurdle to jump. Prayers & Blessings Jeanie . 18,s On Feb 19, 2015, at 4:19 PM, Maria Cashion wrote: Jeannie, they never put you to sleep here. They use a little anethesia for the skin and muscles where they will introduce the needle, but that' all. So far I have had 8 done since I was diagnosed and all I get is local anesthesia. Out of 8, seven have been OK, but my last one was done on Feb 14, 2014 and it was a bad one. The Dr. was not all there either, she had a bad cold. You can't imagene how happy I was last November when they told me I could have a PCR/FISH instead. This is happening because in my last CBC done at the Hospital my white blood count was a little elevated. ( no, for them infections don't count...patient needs another hole in the hip<4F4.gif>) Immediately she has assumed that I have lost remission because I have been off Sprycel since November...It all goes back to my infamous "Blast Crisis". God knows that I have outgrown it, but my doctors haven't... They care so much that at times they can hurt you! I also went to the nephrologist today. I fear the dose of Bosulif that the DR. wants me to start: 500mg. My kidneys are small, apparently my GFR is 59% according to my nephrologist and that is near normal. It's the near that bothers me!!! According to him, there are no indications as to adminstering a lower dose of this medication. If you guys check Phizer's page for Bosulif, it suggests a lower dose of 300-400 mcg for patients with renal disfuntion or with the possibility of renal disfunction or impairment. Bosulif is toxic to the kidneys...<320.gif> My sonogram showed both kidneys were small in size and recommended additional exams like an abdominal sonogram, etc. I will have to ask my GP to do that for me. What really bothers me is that they don't listen to you. It's that feeling that you get of being catalogued as "stupid patient" when you leave your doctor's office...<4F4.gif><4F4.gif><4F4.gif> Also, i found out today that insurance approved my Bosulif...that is some good news, the problem that I have with it is the dose, but we will see what happens. I will get the first prescription tomorrow. This time it only took 2 weeks to get it. I believe that I got results because I took matters into my own hands, called the pharmacy, med rejected initially. Called the insurance, called back the pharmacy, they resubmitted. Told the pharmacy what to do. Called over and over the insurance company, letting them know, of cvourse that my life was at stake...Also mentioned that since the Insurance carrier for my zone was changing in April, that they might be stretching approval of the medication...<1B2.gif>Called today when I got home and the med was approved, called the pharmacy and med will be dispensed tomorrow. I will pick it up after the porcedure mannana.. I know this is a long one. I have been away for a while, trying to get some personal matters finished. You never k
