Hi Joyce I am 81 so got one year over your hubby. ššššš > 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.
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