Dear Marty,
Unbelievable about your doctor story. Y9ou are amazing!! It's day 6 here at the Mayo clinic, a rough visit, dealing with a doctor who is not compassionate, talks over me, and dismisses my questions.We have a language barrier. It's not often, thank goodness, that I have had to deal with these kinds of behaviors from my docs. But, since this is my neuro muscular specialist..wwhfor who I have waited three months to get in to see....well.....I am trying to find a way to better communicate. So far, lots of miserable tests, sweat box- 111 degrees for 70 minutes until my heart started to beat out of my chest and I had to end the test. ...EMG's electric shocks to your nerves for diagnostics, lots of blood tests, exercise stress muscle tests, swallow test, etc....going home in a day or so....praying that there is some good that comes from all this.....otherwise, I will go home, regroup and plan how to manage all of this... Jeanie- your faith is a very very powerful thing. so is Marty's....so is everybody's here..it's why we are here..hang in there and stay positive.....take good care of you...praying for everybody to catch a break........and get good news..each and every one of us.. my best, and love to all 18's Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Feb 16, 2015 11:25 am Subject: Re: [CMLHope] Change from Sprycel to bosulif 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. 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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. 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 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. 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