I am still here and hanging in. No longer on Tasigna and now on Sprycel. The Monday after Thanksgiving I had a quadruple bypass and my doctor said that the Tasigna could be a contributing factor in my heart issues. I have a history of heart disease in my family so I take that with a grain of salt. Well, no salt anymore. I was home for about five days and had to get 911 to send an ambulance because I was passing blood and almost pulled an Elvis in the bathroom. Had to get 7 units of blood and three bleeding ulcers ffixed. Seems taking Aleve for joint pain over a long period will eat hole in your stomach. The best news is I was able to walk my daughter down the aisle for her wedding this past March.
My wet macular degeneration is mostly stable but did have issues with both eyes and am getting shots in them. No more leaks as of now but have to “see” the retina doctor about every 8 weeks now. I set my retirement date and am looking forward to the end of the year and starting the next chapter in my life. My spouse had her job outsourced to India so she beat me to retirement. We still have our rescue wiener dog and he is a hoot. I do think he is a bit confused with my wife not working and is missing out on his normal 22 hours of sleep. I just got my latest numbers from my last visit to MD Anderson and have not looked yet. They had me on the smallest Sprycel dose and my number started rising so he upped it to 50mg and I go in every three months now. I am going on 17 years as a survivor and 15 years since I was declared in blast . All in all, life is good. I have determined that aging is not for sissies. I am still struggling to understand why when I wake up and something hurts for no reason. Why is it that it takes a bit for my legs to understand their function when I stand up and tell them to walk. I do have some ideas about being safer such as wearing a helmet so I don’t bust my head if I were to fall. Now if I could just figure out how to make a functioning roll cage to keep me from hurting myself should my legs fail to respond in a timely manner. I am not sure how long my cat like reflexes will keep me from harms way. I will check in more often. Norm Sent from Mail<https://go.microsoft.com/fwlink/?LinkId=550986> for Windows 10 ________________________________ From: cmlhope@googlegroups.com <cmlhope@googlegroups.com> Sent: Tuesday, September 17, 2019 5:10:01 AM To: Digest recipients <cmlhope@googlegroups.com> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics cmlhope@googlegroups.com<https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> Google Groups<https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> [http://www.google.com/images/icons/product/groups-32.png] <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> Topic digest View all topics<https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> * Not getting any mail - 6 Updates * Is this correct - 1 Update Not getting any mail <http://groups.google.com/group/cmlhope/t/1cabbe0269ae2e77?utm_source=digest&utm_medium=email> icandoallttc <icandoall...@aol.com>: Sep 16 11:52AM -0400 Hello I am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto: Faith and 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 bkbar...@aol.com: Sep 16 04:06PM HI Jeannie. I have not heard from anyone in a long while. This is Beth. Hope everyone out there is hanging in there.. My best to all of you.. KIndest regards, 18's for Marty and hugs to all.. Beth -----Original Message----- From: 'icandoallttc' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Sep 16, 2019 10:52 am Subject: [CMLHope] Not getting any mail HelloI am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com. Joyce Mesnarich <joy...@htc.net>: Sep 16 02:08PM -0500 Hi Jeanie. I think we all have just become quiet on this site. I have received no mail either. My husband is the CML patient. I am his caregiver. He is presently taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. But I, too, would be skeptical of getting meds from a place I didn’t know anything about. My husband was previously seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an expensive trip and as we have gotten older we found it is just too much for us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from us) and started going to him. He is elderly himself. The last 2 times we went we saw his PA. She seems good but certainly is not up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit and they are keeping him from seeing patients. My husband is doing well as far as CML goes. But time is taking its toll. He has very low energy. Don’t know if that is the CML or the medication. I hope you are feeling well. I know you have had some problems in the past. I have been in this group since 2008. Seems most everybody is gone. Sad. Joyce in Southern Illinois myvet...@aol.com: Sep 16 08:51PM That's funny that you put out a post, I was going send one also like (hello, is anyone out there). I don't have to now. Thanks for posting. greenie -----Original Message----- From: Joyce Mesnarich <joy...@htc.net> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Sep 16, 2019 3:08 pm Subject: Re: [CMLHope] Not getting any mail Hi Jeanie.I think we all have just become quiet on this site. I have received no mail either. My husband is the CML patient. I am his caregiver. He is presently taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. But I, too, would be skeptical of getting meds from a place I didn’t know anything about. My husband was previously seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an expensive trip and as we have gotten older we found it is just too much for us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from us) and started going to him. He is elderly himself. The last 2 times we went we saw his PA. She seems good but certainly is not up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit and they are keeping him from seeing patients. My husband is doing well as far as CML goes. But time is taking its toll. He has very low energy. Don’t know if that is the CML or the medication. I hope you are feeling well. I know you have had some problems in the past. I have been in this group since 2008. Seems most everybody is gone. Sad. Joyce in Southern Illinois On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope <cmlhope@googlegroups.com> wrote: HelloI am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/B1E43834-6B94-4F1D-BE03-DDDA23F4E805%40htc.net. bkbar...@aol.com: Sep 17 03:10AM -----Original Message----- From: Joyce Mesnarich <joy...@htc.net> To: cmlhope <cmlhope@googlegroups.com> Sent: Mon, Sep 16, 2019 2:08 pm Subject: Re: [CMLHope] Not getting any mail Hi Jeanie.I think we all have just become quiet on this site. I have received no mail either. My husband is the CML patient. I am his caregiver. He is presently taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you. But I, too, would be skeptical of getting meds from a place I didn’t know anything about. My husband was previously seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an expensive trip and as we have gotten older we found it is just too much for us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from us) and started going to him. He is elderly himself. The last 2 times we went we saw his PA. She seems good but certainly is not up to Dr Talpaz standards. We fear that his new doctor may be slipping a bit and they are keeping him from seeing patients. My husband is doing well as far as CML goes. But time is taking its toll. He has very low energy. Don’t know if that is the CML or the medication. I hope you are feeling well. I know you have had some problems in the past. I have been in this group since 2008. Seems most everybody is gone. Sad. Joyce in Southern Illinois On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope <cmlhope@googlegroups.com> wrote: HelloI am not receiving any mail from group. Has this group shut down. Anyway Igor a letter in the mail saying AcariaHealth would handle my Ponatinib from now on. I never heard from them and think it’s fraud. Anyone else heard this. Hope everyone is great. My Motto:Faith and PillsWith LoveJeanie🐠freeChristian Dx 1/2004 CML LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/B1E43834-6B94-4F1D-BE03-DDDA23F4E805%40htc.net. educatorsusan <educatorsu...@aol.com>: Sep 16 11:24PM -0400 I’m still here! Hugs, Susan Rosenthal Back to top Is this correct <http://groups.google.com/group/cmlhope/t/36450554c47d46de?utm_source=digest&utm_medium=email> icandoallttc <icandoall...@aol.com>: Sep 16 11:53AM -0400 My Motto: Faith and Pills With Love Jeanie 🐠free Christian Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page<https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/join>. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com<mailto: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. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/DM5PR1001MB221821A0BCE4D041C8E264DFD18F0%40DM5PR1001MB2218.namprd10.prod.outlook.com.
