11 replies to this topic

[Lucas]

Hey guys, hope everyone is fine. I'm almost 3 years into 800mg of nilotinib and i'm having problems with high lipase levels since the early this year. I just got my latest test and my lipase levels are more than 4 times over the limit. I'm waiting an answer from my doctor right now. anyone passed throught the same situation? What was the protocol and the outlook? Thanks in advance.

[Liamsdad]

I was just switched to Tasigna at 400mg per day.  After 2 weeks, my lipase and amylase numbers went up and my doctor put me on a 2 week drug holiday.  After the 2 weeks, my numbers are still high so I am also waiting to hear what the next step will be.  I'll keep you posted when I hear what's next.  Thanks

[Lucas]

Thanks, Liamsdad. Hope everything's fine with you. I'll have a retest on monday. Early this year my lipase was almost the triple of the normal range and within 10 days it came back to normal out of the blue. Good Luck.

[kat73]

I'm just curious - are we supposed to get lipase checked on our routine bloodwork?  I don't think it's part of the regular CMP or CBC, is it?  Am I missing something?  When would we be ordered the test for it?  Are there symptoms or something?

[rcase13]

i have this tested every time I go in. It is part of the same panel that checks the liver enzymes.

[kat73]

Huh.  What's on my CMP is ALP, ALT, AST, and bilirubin - that's it for the liver.  From my quick Google search, I think the lipase is a separate test (LPS) and is ordered to diagnose or follow acute pancreatitis?

[Lucas]

Hi, Kat. Lipase and amylase are more useful for tasigna users, because it can damaged the pancreas. The strange thing is that i'm almost 3 years on tasigna, and that's probably a late side effect. Tasigna messed first with my bilirubin, than with my thyroid and now with my pancreas. Never a dull moment!

[kat73]

So true, so true.  On the one hand, I'm glad the powers that be didn't hold up OK'ing our drugs, but on the other hand, I have always found it hard to believe that nobody thought there would be no significant and serious late glitches that would show up.  It was almost one of my very first thoughts as a complete newbie in 2009:  "Well, if you mess with some of the systems cells depend on to function in order to kill the leukemic cells, doesn't that hurt the other, healthy cells that also need those sytems make them go awry and cause various failures elsewhere?"  To which I always got the vague, unsatisfactory answer:  "The body finds work-arounds or compensates, or gets used to it blah blah blah."  Which makes no scientific sense whatsoever.  How come the leukemic cells don't find work-arounds, then?  I think the answer really is, the body does not find work-arounds, it just trudges onward doing without, limping toward small/medium/large disasters and avoiding them with more drugs and learning to live compromised. 

 

Anyway, I hope your particular Tasigna-related problems with lipase/pancreas resolve successfully, Lucas, liamsdad, and rcase.

[Lucas]

Out of  blue my lipase and amylase came back to normal within a week. What a crazy ride!! I think it was probably some kind o interaction. Maybe food interaction. thank you all, guys!

[Liamsdad]

Glad to hear it, Lucas.  I have been off Tasigna for the past 3 weeks and just had more labs done and my numbers keep climbing so it looks like it is back to Gleevec for me.  Pretty disappointed because for the first time in 2 years, I actually felt normal again.  Oh well - it was a nice holiday while it lasted.  All the best!

[kat73]

So sorry, Liamsdad.  Have you thought of Sprycel?

[Liamsdad]

Thanks, Kat.  After weeks of battling with my insurance carrier, they finally agreed to let me have a CT scan of my pancreas so that my doctor can figure out if there is any damage.  I'll have that tomorrow.  In the meantime, I have been off Tasigna going on one month and just did a PCR test to see where my numbers are now.  I don't think they want to put me on Sprycel because I was retaining so much water on Gleevec I think they are concerned about the PE.  I'll update again but thanks for caring!