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
>>>>> -------------------------------------------------
>>>>>
>>>>> 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.
