Switch to Nilotinib or take a drug hiatus?

[Guest guest]

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but could

not tolerate it and was switched to Sprycel which I have been tolerating fairly

well for a year and a half. My liver counts were up for several years, but only

mildly and consistent. However, on Wednesday my bloodwork showed that they

skyrocketed. ast 116, alt 122, ggt 333. Normal counts are <35, 0-28,0-32

respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib is

known to be harder on the liver. He said that twice. I had other thoughts,

and suggested I go off all pain killers, anti-inflamatories(I have been on

diclofenic for years for chronic back issues, they are heavy duty) and go on a

liver healthy diet. He agreed. He is ordering a liver biopsy and I will see

him again in two weeks to discuss the results and the next steps. This is going

to be hard for me as I am a chronic pain sufferer, but it seems to me that pain

is not life-threatening, liver disease and CML are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not ready to

give up on sprycel. My current thinking is if the reduction of other

prescription drugs as well as diet change is not going to correct the liver

problem I would like to try going off the sprycel until my liver heals then go

back on it again.

I have heard of people going off gleevec for periods of time for certain health

issues as well as for pregnancy with great results, but I have not heard of

anyone doing the same with sprycel. Does anyone have an experience or

knowledge that can help me to discern what my next best steps are?

Thank you