Thank you for your replies and prayers. Also, Susan, thanks for the
encouraging words. Do you have any significant side effects?
Joyce in IL
On Feb 15, 2015, at 11:41 AM, 'Susan Zimmerman' via CMLHope wrote:
> To Joyce and Wayne,
>
> I had been on gleevec 400 mg for 2 yrs....took myself off due to brain bleeds
> against doc's orders. I was able to stay in cellular remission for over 7
> years. Then I went to Northwestern Medical as my molecular was up to 23 on
> the bcr/abl test. It dropped the next month to 9 like Wayne's....still in
> cellular remission. I had already decided to try bosulif at that point, so
> went on 100 mg. It took six months to get into MMR (major molecular
> remission,) but I'm THERE. On that low dose, so I am very very optimistic
> about Wayne having good results with few or no side effects on 100 mg. Keep
> on fighting and relax and enjoy every day!
>
> P.S. Yesterday the 14th was my 10yr anniversary for having CML. What a
> Valentine present that was!!!
>
> Susan F. Zimmerman
> "Look among the nations and watch; be utterly astounded! For I will work a
> work in your days which you would not believe, though it were told you."
> Hab. 1:5
>
>
> -----Original Message-----
> From: ICANDOALLTTC via CMLHope <[email protected]>
> To: cmlhope <[email protected]>
> Sent: Sun, Feb 15, 2015 10:32 am
> Subject: Re: [CMLHope] Change from Sprycel to bosulif
>
> 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
>>>>>>>
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> Blessings And Prayers 18's Love
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