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Nilotinib and Lipase

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Hi - I am Ben and am a 50 year ex-Pom living in Australia - there doesn't seem to be a support group like this in Oz so I decided to hang out here - hope that's OK!

I was diagnosed in March 2016 and have recently commenced treatment on Nilotinib 300mg twice daily - day 8 today.  I am on a clinical trial called the Pinnacle Trial if there are any other Pinnacle folk here.

I had my first post treatment blood today and my lipase has gone up quite  a bit but I don't have any significant symptoms.  Maybe a little mild abdominal discomfort but other than that I have been pretty much fine.

Has anyone else had any experience with this?  I understand it is a side effect of Nilotinib but not entirely sure what to expect of it.  Any advice or thoughts would be welcome.  As a newbie the unknown is always the worst!

Thanks,

Ben

Hi Ben and welcome to this forum. Nilotinib can cause elevated seem lipase, but unless you have had a previous history of pancreatitis or are suffering abdominal symptoms then it is most likely that your lipase levels will reduce over time. As you are enrolled in a clinical trial you will be monitored very closely so any adverse event will be picked up quickly and dealt with. Lipase elevation is usually time limited so as you get used to the drug your body will adapt.

You are at the beginning of therapy so if you have any questions at all then I am sure you will find answers here. Quite a few here are treated with nilotinib and so will be able to advise. Meanwhile you might be interested to read a couple of articles that have just been uploaded on our resources page:

links here: http://www.cmlsupport.org.uk/article/long-term-benefits-and-risks-frontl...

                    http://www.cmlsupport.org.uk/article/european-leukemianet-recommendation...

 

Best wishes,

Sandy