Tasigna/elevated liver enzymes

Hi Becca,

Just read your post re. increased liver enzymes (including bilirubin) whilst on Nilotinib.

I recently was communicating with Sandy regarding my mother's experience on Nilotinib including having her gall bladder removed after being pressed by a prior hematologist to increase her dose from 200mg x 2 daily to eventually the max. dose of 400mg x 2 daily. Whilst she was on the lowest dose of 200mg x 2 daily, her BCR-ABL was progressively going down and she was doing well when initially prescribed Nilotinib. H/ever, her health deteriorated once the dose increased, especially whilst on the increased max. dose.

I like you, was very concerned about the increased liver enzymes noted in the blood tests but was told by the hematologist to increase the dose for fear of failure and/or mutations at a later date. But not long after this, my mother suffered acute pain in her abdomen. She had an ultra sound which confirmed to be an inflamed gall bladder(acute cholecystitis) that required surgery for removal. My mother had regular ultra sounds since being diagnosed with CML and her gall bladder was perfect before this episode. It is a well known fact, that Nilotinib can cause liver problems (including gall bladder) i.e. reflected as increased liver and bilirubin enzymes.

I don't know what dose you're on or what your BCR-ABL is Becca but would suggest you have another conversation with your hematologist as there is plenty of reputable research on the web about Nilotinib's side effects. As with all TKIs, with any serious side effects, it's recommended that you either have and initial dose interruption until symptoms subside and then go back to possibly a lower dose and monitor accordingly. Doses can always be adjusted at a later date depending on your tolerance levels. This might be a safer course of action? As members on this site have expressed, CML is a marathon - not a sprint and often you just have to trust your instincts and take a difference course of action. You can also seek the opinion of another hematologist if your current one won't listen to your concerns. 

My mother's 82 yrs old so you may tolerate Nilotinib better? Everyone's different. Anyway, hope this post helps?

Maria

Thanks Becca,

Try and focus on your quality of life whilst on any TKI drug as there are plenty of side effects that can either be avoided and/or managed with quick intervention i.e. by either changing TKI drug, dose reduction, dose interruption or taking other drugs and/or supplements to help manage the side effects.

My mother reached MMR just recently after starting her treatment in 2018 and changing hematologist. As long as your disease is stable i.e. still in chronic phase and not acute, then you're heading in the right direction. But most importantly, when you feel that something isn't right with your body, have it checked out and do some research so that you're armed with some information when discussing with your hematologist. 

You will eventually get to MMR and maybe DMR but in opinion and from what I've seen from my mother's experience, there's no point in rushing to get to any particular level, if the TKIs have caused irreversible damage to your vital organs. Quality of life in my opinion is imperative and sometimes a more slower and cautious approach is better. And use this site to ask questions also, as I've found it very helpful.

All the best.

Maria

Thank you for your reply. I am encouraged by your success at only 200mg.  My doctor reduced my dosage to 400mg and that has made all the difference. I feel good and my liver enzymes and bilirubin are coming down. My dr is concerned that 400mg will not be a high enough dose. I have my first PCR test (since diagnosis) next month so I will see if 400mg is enough for me.

thanks!