3 replies to this topic

[judyann]

I have not read any posts re: TKI's and high lipase levels so curious if any CMLers are dealing with or have dealt with this issue.  I have failed three of the TKI's and, since December, have been dropped from 500mg to 400mg, and several days ago to 300mg of Bosulif due to very high lipase levels.  However, the high lipase levels began to show up last fall while taking 140mg Sprycel. Have since failed Sprycel and started 500mg in December. While taking the meds my lipase levels have shot up to past 1000.  Each time my lipase levels have shot up my oncologist has me take a one to two week break from the meds, retest, and, then if the levels are back done I resume the meds.  I lipase levels are always back down very quickly--usually between 30-40--and then we begin the on again/off again/high/low lipase levels once again.  This cycle has been going on since November.  I was dx December 2006 and it has never been a smooth ride nor have I even been PCRU.

My body aches and I have very little energy.  I will have my lipase level checked again on Tuesday at which time I have an appointment with my oncologist.  I am frustrated with having to do the Start/Stop Dance so often and can't help but wonder what kind of dance the leukemia cells are doing as well! And, what kind of beating my pancreas is taking. I have always been involved with my treatment decisions (encouraged by my oncologist as well), however, I have so little information re: TKIs and lipase levels it is frustrating.

I would appreciate so much any input, suggestions, or sharing a similar problem so I can be better prepared and informed when meeting with my oncologist on Tuesday.

THANK YOU!

[Trey]

All TKI drugs can cause pancreas inflammation, which is usually the reason for the elevated lipase levels.  It is not clear whether this is actual pancreatitis or a simpler form of pancreas irritation.  You may also have deep abdominal pain, maybe just above the belly button area.

Your doc should probably also do serum amylase tests to double check if this is caused by the pancreas, and maybe also calcium levels.

It is possible that this may go away after several drug breaks.

http://en.wikipedia....m.2C_glycosuria

http://labtestsonlin...lipase/tab/test

[judyann]

Thank you for your response, Trey.  I have waited for the results of my latest blood tests for an update.  After the fourth on-again-off-again break and drop in Bosulif dosages my lipase level continues to be very high.  After the most recent Bosulif break my lipase level had dropped to 36. However, after resuming Bosulif at 300mg for just one week my lipase level was over 600.  My amylase count was perfect.  Also, my platelets are currently at 900+.  My oncologist has discussed my situation with a specialist at Dana Farber Cancer Center in Boston due to the fact that in the six years of CML very little has gone smoothly and most recently it has been a very bumpy ride. Because I have failed the available TKIs there is a possibility I may go into one of the current clinical trials.  It was recommended that I not begin Ponatinib due to the risks involved with lipase levels. I might add that I do have a perfect 12/12 stem cell match should it be recommended that I go that route. Any input you may have, Trey, would be greatly appreciated.  Thank you! 

[Trey]

Your high platelets show a problem (900K) so likely the CML is not being controlled well enough.  In looking at your past posts it appears you did well on Sprycel but changed due to side effects, so it was not so much drug failure but rather intolerance.  You did not specifically mention how you did on Tasigna but say you have tried 4 drugs.  The Bosulif appears to have issues for you also, and is not working very well given all the drug breaks. 

If it were me I would want to have a kinase mutation test, bone marrow biopsy, and would try going back to Sprycel at low dosage since it did work well for you (PCR .008).  Some people just need a lower dosage that they can tolerate, and lower dosages can work well in many cases.