You said it all Skip!!! Thanks Prayers & Blessings Jeanie 18's 🐠🐠
> On Feb 16, 2015, at 3:19 PM, "'Skip Duffie' via CMLHope" > <[email protected]> wrote: > > 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 CML2 > SkipD 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]. >>>>>>> For more options, visit https://groups.google.com/d/optout. >>>>>> >>>>>> >>>>>> -- >>>>>> -- >>>>>> [CMLHope] >>>>>> A support group of http://cmlhope.com >>>>>> 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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 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