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..
--- Barb in AZ <[EMAIL PROTECTED]> wrote:
>
> Hello Rakesh,
> I wanted to reply to your post because I had similar
> symptoms on
> gleevec.I was diagnosed 5/2001 and on 400 mg gleevec
> as well. Even on
> a reduced dosage to 300 mg I had the same thing. I
> was a little anemic
> as you are. The pain was shoulder, spine and lower
> back. I could
> never get comfortable and thus, lost sleep. The lack
> of sleep then
> magifies the discomfort as well. When one has no
> sleep, every thing
> seems worse I think. This was at a time when my
> legs,arms, and
> stomach were hardened, wood like with water
> retention. I don't know
> if that has anything to do with it. But the worst
> spot of pain was at
> the base of my neck - where the neck attaches to the
> spine. Advil
> was all I could take and it would work for a while
> and then the pain
> would return, waking me up about 2-3 am.
> I am happy to report I have switched to tasigna and
> no longer suffer
> from this. It is my suspicion then, that it is
> gleevec related.
>
> I hope this is helpful.
> Barb
>
>
> On Mar 20, 3:03 pm, "[EMAIL PROTECTED]"
> <[EMAIL PROTECTED]>
> wrote:
> > Hi All,
> >
> > I was diagnosed in 01/2001. I have been taking
> 400mg Gleevec since
> > then. I am in remission by FISH. Still positive by
> a small number with
> > PCR test. The blood work results are great. A
> little bit low on WBC,
> > RBC, Hemoglobin but nothing else abnormal.
> >
> > Last few months I have been suffering from lower
> back pain, shoulder
> > pain and overall body pain in the night when I go
> to bed. The pain
> > starts after 2-3 hours of going to sleep. I feel
> like I am half awake
> > and can not get enough rest. Gleevec is the only
> medicine I am taking.
> > Funny thing is that the pain is only in the night
> and not during the
> > day. I tried several different mattresses to see
> if it is related to
> > it. No luck so far. I tried taking a few medicines
> like Naproxen,
> > Valium etc. but nothing for a long time. These
> medicines don't help
> > either. The problem. My oncologist things this is
> not related to CML
> > or Gleevec. Everything else like X-RAY / MRI of
> back is normal!.
> >
> > I saw several notes on pain in the group but
> nothing on pain only at
> > night. If any of you are experiencing the same
> symptoms, please let me
> > know. I am curious to know if this is due to
> Gleevec or something
> > else.
> >
> > Best Regards,
> > Rakesh Doshi
> > Cincinnati, Ohio
>
>
>
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