6 replies to this topic

[LJane]

Hello! I am new here although I have lurked some. My husband was diagnosed almost three years. He is on his third tki. He started on sprycel but failed due to needing dosage reductions (pcr never went below 12). Then he went on bosulif but ended up with liver toxicity. He has been on tasigna for over a year with almost no side effects. He's been a turtle with his pcr results, however. Always a downward trend but he only recently went below 0.1. Now his last two pcr tests have doubled. Three tests ago his pcr was 0.097, then 0.197 and 0.4. Is there any reason for concern? I know some fluctuation is normal. His blood counts are all in the normal range. I'm really asking because I've noticed a change in his fatigue level lately, too. He has been more tired than the usual and has also caught a chest cold that he can't seem to shake these last two weeks. Just curious if my concern is founded or if I am just being a worrywart. His next pcr test is in early April.

[hannibellemo]

LJane,

 

This should give you a good idea of where your husband should be at this point and what to discuss with him and his doctor if he isn't there or if you are afraid he is losing response.

 

https://www.google.c...Aid CML&es_th=1

 

Just checked the link and it doesn't open directly to the PDF. Click on PDF second from top.

 

If those percentages are on the international scale he does appear to have lost Major Molecular Response (MMR = .1%)  but remains

in Complete Cytogenic Response (CCyR = 1%).

 

I always say go with your gut instinct, If you (and he) are concerned you should be having this conversation with his onc.

 

Good luck.

Edited by hannibellemo, 07 February 2016 - 07:38 AM.

[Lucas]

hi, jane

 

 

first of all, i'll check if his adherence to therapy is ok and them i'll check for interactions (drugs and food). maybe a re-test in a month time is a good idea. good luck!

[LJane]

Thank you, hannibellemo, for the link to that pdf. That's all such good information visually organized. He has lost MMR but really, he only recently achieved it. So I guess his response is suboptimal right now? And I have to confess that I'm not really sure how we would know about cytogenetic response. Is that the FISH test? If so, he only had that one done at diagnosis, I believe? There is so much to keep track of. My gut instinct says to talk with his oncologist although I'm sure my husband will just want to wait until his next blood draw. We like his doctor although sometimes I feel that he is low on her list of priorities. She is a community oncologist who sees all kinds of cancer patients. In fact, I'm not sure she looks at his test results until the next time he comes in. A nurse always calls with his results.

Lucas, thanks for the reply! I know his adherence is great. He is type A about taking his meds and avoiding food around that time. As far as food interactions, are there things that can interact with tasigna even outside of that three hour window of taking it on an empty stomach? I know about grapefruit but not anything else.

Also, he was tested for mutations back when he failed sprycel and had none. Can that change in a short amount of time? Trying not to worry...

[Trey]

The first thing to understand is that PCR results are not nearly as precise as the number of digits in the result would imply.  So your husband's results are not such a wide variation.  Also, Tasigna response tends to stall out into a plateau which can last for a while.  He is likely in such a plateau.  Kinase mutations show up as sharp rises, and he does not show signs of that.  The fatigue is multifaceted and not normally caused by the disease itself at his levels of response.  Overall, given his history with the other drugs, he is doing fine.  We all want better, but sometimes "just fine" is what we get.

[rcase13]

Why is it one TKI can cause liver toxicity in a person but not another? Aren't all the TKI drugs similar in the grand scheme of things when it comes to the liver?

[LJane]

Thanks, trey. That's comforting to know a mutation would show up as a sharp rise. I'm sure he's fine. If anything he probably needs a dosage change. He started on a lower dose although I can't remember why now. Maybe because of his liver. But yes, fine is not the same "great!"

Rcase13, I'm not sure the answer to your question. But I have heard of quite a few people having liver issues on bosulif. My husband probably could have tried bosulif again on a lower dose but we didn't push it because it made him so sick. I was glad he was off of it. His doctor thought tasigna was a better option.