Good Morning/evening to all.
I thought that I would post this to anyone starting AMN107 (Nilotinib) trials. I would warn you that it can cause pancreatitus which is rather painful. I was put on the drug at 800mg a day, I ended up in the hospital, It was a very painful time. I got better and they lowered my dose to 400mg a day. We did not know that is was pancreatitus at that time.
So I was just great on 400mg a day, but I thought I would ask if I could go back to 800 mg a day, and the Novartis company agreed. About three weeks ago they increased my dose to 800mg once again.. In a week I was in pain. I was in the hospital every day for treatment of pancreatitus, this was discovered after a cat scan. I noticed that I am not the only one that has had this problem. I understand it is a side effect to watch out for.. I just restarted Nilotinib on Friday the 13th.. at a reduced dose of 400mg a day...Hope this helps for anyone starting the trial to watch out for pain in the lower back and bloating... Check with your doctor and suggest a catscan..
Have a great weekend to all from Nova Scotia
SkipD
Nilotinib 400 mg a day
Exjade to reduce Iron from blood infusions 1000mg a day
My diary and blood counts at http://easyskip.tripod.com
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
You are here
pancreatitus and Nilotinib(AMN107)
Thank you Elizabeth
I have restarted at 400mg a day. I have read of three others with the same effect here is example of some of the email
quote
Hi Skip, I'm the Ruth that Anjana was telling you
about. I agree that pancreatitis is very painful.
I was only on 1200mg AMN for 3 days when they put me
in the hospital with acute pancreatitis. Off drug
for 2 weeks and restarted at 800mg. Was on that for
about 5 weeks and developed scalp and upper torso
rash and extreme itching and was lowered to 400mg.
I had reached CCR on the 800mg in the 5 weeks. I
stayed on the 400 for 13 months with light flare ups
of the pancreatitis and the drug company dropped me
from the study. I was then put on 300mg Gleevec in
Feb of 06 and still remain in CCR. Because of very
low renal function, we are not trying for PCR, just
stability so we won't increase the dose. I see you
are a long-timer CML. Eventhough I am already 70 I
have hope of the CML not being the cause of my death
when it comes. Good luck. Hugs, Ruth DX 3/04
unquote
Just something to keep in the back of your mind on Nilotinib
if you start to have pain in the back, bloated sick feeling etc.
Skipd
http://easyskip.tripod.com
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