Right! I tried to tell the doctor of my faith and that was all I can do. My onc is the head of senior oncology at Moffitt and works with a team if leukemia specialist there. I really like my nurse there. I like Moffitt because they have your blood counts within the hour after the draw and you see your doctor right after. I have considered changing doctors but the pros outweigh the cons.
21st day on ponatinib So far just a rAsh on upper thighs. Some nauseas and foggy brain. It reminds me of gleevec. You can take it with food or water which is good. I hope everyone is good today. As Marty says "we woke up today" and we get on more day to love everyone. 💋❤️❤️❤️ Prayers & Blessings Jeanie 18's 🐠🐠 > On Feb 16, 2015, at 7:15 AM, Myvety2k via CMLHope <[email protected]> > wrote: > > 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 <emoji_u1f420.png><emoji_u1f420.png> >>>> >>>>> 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 <emoji_u1f420.png><emoji_u1f420.png> >>>>>> >>>>>>> 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 <emoji_u1f420.png><emoji_u1f420.png> >>>>>>>> >>>>>>>>> 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]. >>>>>>>>> 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. >>>>>> >>>>>> >>>>>> -- >>>>>> -- >>>>>> [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. >>>> >>>> >>>> -- >>>> -- >>>> [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 >> 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