5 replies to this topic

[Damerault]

I was diagnosed with CML in November of 2013. I have been on my current reduced dose of 300 mgs of Tasigna since August 2014 (9 months). Yesterday I received my Brca Int Scale % result of 0.0950. The lowest I have ever been achieving MMR Major Molecular Response. My Hematologist Oncologist wants to increase my dose by another pill a day in an attempt for me to reach CCyR or 0%. Would you do it? I wanted to stay on the dose I am on and see if I can reach 0% but he seems to think I have plateaued with a 0.27% in December 2014 and 0.3% three months ago. He also believes reaching 0% sooner would be better in the long run. I really want the CCyR but I am dreading the possible increase in the side affects. My PLTs and HGB dropped so low previously I required multiple transfusions not to mention the tiredness and headaches.  Am I being a baby? Should I take this head on? Any input is greatly appreciated. Thanks, Diane. 

[snowbear]

What is the risk of progression if you stay at the lower dose and maybe never reach 0% ? If it were me, I would stay at the lower dose and have manageable side effects as long as it was safe and it keeps the leukemia stable.       

[Dom]

I'm really new at this, so I won't try to answer anything, but I have some mquestions that may help you.

I assume you started at the full dosage of tasignia at diagnosis. Did you move to the reduced dosage because of side-effects? Were they much worse than what you have now? Is it intolerable to go back to the previous state? Because getting to CCyR seems to be pretty important.

[Gail's]

My two cents worth. Maybe you could go up and watch your counts and energy level closely. Then drop back sooner if the same side effects start. I've read that Sometimes the break from higher doses gives your body time to adjust to the TKI and tolerate it better when you go up.

[Trey]

CCyR (-2 log) is less than MMR (-3 log) so of course you meant CMR (PCRU).  You are in a very good place right now with the MMR so no change is necessary, although if you wish you could try 400mg twice daily, which might not increase your side effects if taken as a split dosage of 200mg twice daily instead of your current 300mg once daily.  Then if needed you could revert to 300mg once daily.  It is really just a personal choice.

 

There is probably nothing to be gained by forcing a faster response at the expense of returning to severe side effects.  The issue with fast response is not so much forcing one, but rather that your CML can respond easily to TKI therapy.  This is a difference most Oncs do not understand, which is that a fast response on high dosage does not assure better long term results, but rather it is the ability to easily control the CML as usually shown by a fast response to TKI drugs which is more significant.  Hopefully that makes sense since it is a little hard to explain.

[Damerault]

Thanks everyone. Yes, I started on a full dose of Sprycel and couldn't handle that because of low PLT COUNTS, I think my lowest was 17. My HGB is also an issue going down to 6. Then I was taken off that and after a break tried a lower dose with no luck. I was then put on a full dose of Tasigna and like Ground Hog Day the same thing happened. My side effects are lower blood counts, headaches and fatigue probably from the anemia. The lower dose of Tasigna finally worked for me and my low counts started coming back up. My PLTs hover aground 70 or 80 now but that appears to be my new normal. Anyway, I really don't want to relive that. Though, my Dr. is being very open to a gradual increase with blood tests every two weeks and coming off of the increased dose if my blood levels drop. I was just so hoping to back off of constant blood tests not going back to them.

Thanks Trey, I was confused as I thought Complete Cytogenetic Response (CCyR) was No PH+ cells detected and what the goal was as opposed to CMR Complete Molecular Response. Sorry if I'm confusing people. Thanks again.