Hi Jeanie, I hate it when a doctor tells you that something is your last hope. In my opinion I think that you need to find yourself another more qualified Oncologist. It just brings back some memories of my own. When I was first diagnosed my doctor's associate came into my hospital room and right in front of my wife tells both of us that I am going to die. With tears running down both of our eyes I demanded that he leave.
I never told my doctor about what he said because I didn't want to start problems for him. About a year after my transplant I went back to the hospital for a check up and who was there? That same AZZ hole that told me that. I went up right in front of him and told him that I am still alive, and he could kiss my AZZ. About a year later he died. 18's, Marty On Sun, Feb 15, 2015 at 10:32 AM, ICANDOALLTTC via CMLHope < [email protected]> wrote: > I haven't taken bosulif yet and I tried to tell my onc about it but he > was set on Ponatinib. He said that was my last hope. Maybe my mutant > would work against bosulif also; just don't know. > Good luck with it and my prayers are with you always. > Blessings Love And Prayers > Jeanie<3 > > In a message dated 2/15/2015 12:33:47 A.M. Eastern Standard Time, > [email protected] writes: > > Prayers have and will continued for Wayne. > Richard H. > > On Saturday, February 14, 2015 at 8:36:08 PM UTC-6, grammie wrote: > >> Jeanie and all, >> Yes, they did take tissue samples during the endoscopy & colonoscopy, but >> the blood was found BEFORE those procedures. That's why he had the >> procedures. >> Wayne was taken off Sprycel 5 months ago because of pleural effusion. >> For 3 months his PCRU held, but by 6 months it went up to 9.36. Dr Talpaz >> has chosen bosulif for his next TKI. He has so many other health problems >> (diabetes, A-fib, COPD, high blood pressure) that it is hard to pick >> another TKI. I don't know much about bosulif. Has anybody been on it? >> They are giving him a small dose, 100 mg. But they had to change his A-fib >> medication which has kept him in a good heart rhythm for 5 years. His >> diabetes meds are questionable, but they are going to monitor everything >> and see how it goes. So if possible, send a few prayers to Illinois for >> Wayne and his new TKI, hoping it works and that the side effects are not >> too bad. >> Joyce in IL >> >> >> On Feb 14, 2015, at 6:17 AM, 'Icandoallttc' via CMLHope wrote: >> >> Hi Joyce >> Did they take tissue during endoscopy and colonoscopy ? >> He could be bleeding from that. >> That's the problem. They just don't listen. >> Keep talking to them. >> Have you considered ponatinib? >> Does he have heart problems? >> So far so good for me. >> This is my 19th day on ponatinib. He could have developed a mutant for >> sprycel by now. That's what happened to me. Keep on fighting. >> >> Prayers & Blessings Jeanie 18's [image: 🐠][image: 🐠] >> >> On Feb 14, 2015, at 1:36 AM, Joyce Mesnarich <[email protected]> wrote: >> >> Two years ago my husband had to have 2 pints of blood because of low >> hemoglobin. He seems to be heading that way again. They have found blood >> in his stool, but could not find any cause for it, following an endoscope >> of the esophagus and a colonoscopy. He also takes warfarin (blood thinner) >> for a heart condition (A-fib). I am thinking that may be a factor, but no >> one wants to talk about that. He has been off of Sprycel for 5 months due >> to pleural effusion, but his counts continue to worsen. Go figure!! >> Joyce in IL >> >> >> On Feb 13, 2015, at 7:06 AM, 'Icandoallttc' via CMLHope wrote: >> >> My hemoglobin went to under 8 and I had to have transfusions. I think >> if the onc I had at the time would have taken me off meds my blood would >> have recovered. I was on Tasigna at the time. I take iron and also try to >> eat iron rich foods. >> >> Prayers & Blessings Jeanie 18's [image: 🐠][image: 🐠] >> >> On Feb 13, 2015, at 12:48 AM, Joyce Mesnarich <[email protected]> wrote: >> >> Jeanie, >> You have made my day!! So glad to see your numbers. Does this lower >> hemoglobin seem to be a fact of life for CMLers? My husband's hemoglobin >> also is low and he is told to take iron pills (Yuck). Keep on Keepin' on. >> Joyce in IL >> >> On Feb 12, 2015, at 2:32 PM, 'Icandoallttc' via CMLHope wrote: >> >> Platelets down to under 400 and WBC were 7: that is a miracle. >> From over a million to almost normal. The meds kicked in. Now worried >> they might go to low. Hehe. Hemoglobin went down to 12.8 after holding at >> 13. Need to ear some iron foods. >> Thanks for prayers. >> >> Prayers & Blessings Jeanie 18's [image: 🐠][image: 🐠] >> >> On Feb 12, 2015, at 10:57 AM, Suzieq <[email protected]> wrote: >> >> Holly: I am so glad to meet someone who also has Dr. Cashen as their >> doctor. I love Dr. Amanda Cashen and her nurse practitioner, Holly. As >> far as their testing goes, I am assuming that they are going to do all of >> it there from now on. I am glad that they don't have to overnight the >> blood any longer, but I feel I need someone to explain their testing to >> me. These numbers were so different than what I was use to seeing before >> when I tested positive. Then, it was always in the thousandths from the >> other place......this was 0.02%. I think that's what upset me so much, >> the not understanding. And, I didn't have anyone to explain it to me. >> Someone (Beth) here asked me if it was on the "International Scale"......I >> don't know. I am not at home right now, (visiting my mom in Florida), but >> I will check when I get home, if I can remember. Thank you all for your >> kind words. I'm in a much better place mentally & emotionally today than >> I was after opening those results. ***smile*** God reminded me by bringing >> that old McKamey song, "The God on the mountain, is still God in the >> valley" that night while I was feeling sorry for myself and doing laundry. >> LOL!! >> >> Thank you all, >> >> 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 [email protected] >> 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 [email protected]. >> For 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[CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> 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 [email protected]. >> 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 [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > Blessings And Prayers 18's Love > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop 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