Hi norm Just wanted you to know my hubby Of 42 years passed away when he was 62 from heart disease due to diabetes. He had quadruple Bypass surgery when he was about 52 and never had CML so Go figure. He lived About 10 years after surgery. Give those hands and feet daily massages and keep on going. Love JeAnie
My Motto: Faith and Pills With Love Jeanie š free Christian Dx 1/2004 CML Leukemia > On Sep 23, 2019, at 1:03 AM, Joyce Mesnarich <joy...@htc.net> wrote: > > Norm, > Wow! You have had quite the active life. Old age is not for the meek, I > have found that out. I love your light-hearted view of your miseries. My > husband is the CML patient. He has had it for 11 years. Tried Gleevec but > was allergic to it. Then on Sprycel for about 5 years. It caused him to > have plural effusion, fluid around the heart. He was taken off that and now > is on Bosulif. He doesnāt seem to have any major side effects but his skin > is full of blemishes. He can live with that. He has no energy. Donāt know > if that is due to CML, the TKIs or old age (he is 80). Hope you continue to > improve and stay away from that Aleve. > Joyce in Southern Illinois > > >> On Sep 17, 2019, at 7:50 AM, N Quade <norm5...@hotmail.com> wrote: >> >> 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 āseeā >> 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 donāt 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 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 Google Groups >> Topic digest >> View all topics >> Not getting any mail - 6 Updates >> Is this correct - 1 Update >> Not getting any mail >> 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 itās fraud. Anyone >> else heard this. Hope everyone is great. >> >> My Motto: >> Faith and Pills >> With Love >> Jeanie >> š 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 itās fraud. Anyone >> else heard this. Hope everyone is great. >> My Motto:Faith and PillsWith LoveJeanieš 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 donāt know anything about Ponatinib, so I canāt help you. >> But I, too, would be skeptical of getting meds from a place I didnāt 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. Donāt >> 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 donāt know anything about >> Ponatinib, so I canāt help you. But I, too, would be skeptical of getting >> meds from a place I didnāt 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. Donāt 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 itās fraud. Anyone >> else heard this. Hope everyone is great. >> My Motto:Faith and PillsWith LoveJeanieš 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 donāt know anything about >> Ponatinib, so I canāt help you. But I, too, would be skeptical of getting >> meds from a place I didnāt 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. Donāt 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 itās fraud. Anyone >> else heard this. Hope everyone is great. >> My Motto:Faith and PillsWith LoveJeanieš 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 >> >> Iām still here! >> >> Hugs, >> Susan Rosenthal >> >> Back to top >> Is this correct >> icandoallttc <icandoall...@aol.com>: Sep 16 11:53AM -0400 >> >> My Motto: >> Faith and Pills >> With Love >> Jeanie >> š free >> Christian >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/ 2015 15 mg >> New Doctor--Dr Martine Extermann >> Moffitt Cancer center sept 2017 >> Dr Balducci retired >> Dr Gedia PCD >> 0 CBL. ABL >> July 2018 dx with thyroid disease tsh 13 >> T4-normal t3-normal >> Back to top >> You received this digest because you're subscribed to updates for this >> group. You can change your settings on the group membership page. >> To unsubscribe from this group and stop receiving emails from it send an >> email to cmlhope+unsubscr...@googlegroups.com. >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> To view this discussion on the web visit >> https://groups.google.com/d/msgid/cmlhope/DM5PR1001MB221821A0BCE4D041C8E264DFD18F0%40DM5PR1001MB2218.namprd10.prod.outlook.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/C3A1575E-AC5A-45A2-AB70-C59A9A2AA4E2%40htc.net. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/C04DD9C2-EF9D-45B3-A8AE-1E156B6E0F81%40aol.com.
