just an update for information only

[Guest guest]

Hello all CML’ers

Just an update on my journey with Nilotinib. About a

month ago I was increased once again from 400 to 800

mg a day. The first time we did this I ended up in

the hospital with complications. It took about a

month to get me back on 400 mg a day. It was a real

painful experience. So back I went to 800 mg a day

about a month ago. I thought I could work through the

problems it caused the first time. The first time my

bowel and stomach just stopped working, there just was

no parastolisis. ....

I had a great deal of pain and as I said I ended up in

the hospital for about 10 days. This time again,

everything just stopped working no parastolisis, and I

had a great deal of pain. I lost about 10 lbs and

could not eat, the doctor did a cat scan this time

after an Xray. It was found that Nilotinib may have

cause problems with my pancreas. Pancreatitis is quite

painful, and can cause a great dead of trouble so my

doctor cut me off all meds except Exjade and had me go

into Med Day for treatment every day for the last week

and half. I am back feeling half normal and will

continue with Nilotinib I hope sometime soon. My

doctor and trial nurse feel the company will allow me

back in the trial. My counts are still low for

instance my WBC is 1.1K my Platelet were 8K this

morning I received 6 units single donor Platelet. My

reason for this update is, if on nilotinib and if you

notice your tummy not rolling etc, have it checked

out.

Skipd

http://easyskip.tripod.com

SkipD

Dx'ed Dec 1978

on Myleran(busulfan) 26 yrs

on Hydroxyurea for about 1 year

on Gleevec for approx 1.5 years

on AMN107(Nilotinib) to now

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