Hello Barb
Yes I have about 32 years with dx cml but we now
believe that I had smoldering Granulocytic Leukemia
for about two years before that... It is now being
investigated.. if this was the case I would now be in
my 34 year with CML but that has to be proven my
Doctor is going to write a paper (so he tells me) on
how a person could live all this time with only one
old fashioned medicine which was called Myleran.. no
transplants, no gleevec, no nilotinib, nothing back in
the early days.. CML was very very rare..In fact I was
only the second patient with it.. the other one who
had it before me passed away after 2.5 years.
I was released from the military with medical release
but no one knew what it was until I went full blown.
It has been an interesting ride..especially when my
platelets count drops to Zero yep zero.
SkipD
dx 32++ years
--- Barb in AZ <[EMAIL PROTECTED]> wrote:
>
> Skip -
> I checked on the web site inormation on nilotinib -
> and I am posting
> the part about pancreas below;
>
> * Symptoms include:
> o shortness of breath
> o swelling of hands, ankles, feet, or face
> o Pancreas inflammation (pancreatitis). Symptoms
> include sudden
> stomach area pain with nausea and vomiting.
>
> So you are correct about that. I did not have that
> symptom - but
> others on 800 mg. My doctor has me on 400 now and I
> am doing well as
> long as I take it fasting. I did not have it on
> gleevec though I had
> other issues. We are all different I think.
> Barb
>
> PS: Skip - did I read your post right that you are
> 30 years with CML?
>
> On Mar 21, 7:07 am, Skip Duffie
> <[EMAIL PROTECTED]> wrote:
> > HELLO ALL
> > I do not post much, but in this case I thought I
> > would.
> > If you are having pain in the back, standing or
> > sleeping, I would suggest you talk to your Doctor.
> I
> > had pain in my back which I thought was not
> related to
> > my drugs (Nilotinib) in fact it was.. The first
> time I
> > became very sick and I ended in the hospital for
> about
> > a week and half. I also had no bowl sounds.
> > I was on 800mg of Nilotinib, went off drugs for
> about
> > two weeks and was reduced to 400 mg a day. After
> a
> > few months I wanted to go back on 800mg a day and
> so
> > did my trial people, It took about a few months
> before
> > Novartis agreed to the 800mg again. It was less
> than
> > a month I had the pain back and became ill once
> again.
> > This time they did xrays and blood cultures, etc.
> it
> > was found that I had a problem with my pancreas
> and
> > they felt it was drug related. I had to be
> flushed
> > with every day with two large bags of saline
> after
> > about a week I was back to normal and at a reduced
> > drug level. I am not sure this would apply to
> anyone
> > on Gleevec but you may want to check with your
> doctor,
> > I think one of the many side effects with Gleevec
> and
> > Nilotinib is pancreas problems
> > Skip in Nova Scotia
> > DX over 30 years ago..
> >
> >
>
>
>
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