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]_
(javascript:) > 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]_
(javascript:) > 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]_ (javascript:)
> 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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