Marty what a way to handle bad news. back 37 years ago, I was told, walking down the hallway with the doc. he then said after we find out the type you can expect 2 weeks (AGL) to two years (CGL) about two years later they got around to calling it CML as a side note all those Hem docs are either dead or retired. My GP has retired. Marty nothing will drag you down harder then those so called experts, there is only ONE who knows what is going to happen, but then I know all who come to these leukemia sites are real hero's I prayer every night for the people on CMLHOPE and CML2SkipD no bone marrow, been off meds for I think four or five years, just getting deferral 3 times week, platelets 2bags a week and RBC every Friday.
From: Myvety2k via CMLHope <[email protected]> To: [email protected] Sent: Monday, February 16, 2015 8:15 AM Subject: Re: [CMLHope] Change from Sprycel to bosulif Marty, after reading your post about that so called doctor, I'm giving you 5 Gold Stars. greenie In a message dated 2/15/2015 3:11:56 P.M. Eastern Standard Time, [email protected] writes: 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 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 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 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 [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]. 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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. -- -- [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. 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