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MMR Finally at 29 months

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Leaving this thread to encourage those who are not responding as fast as the guidelines call for. You can still get there, but I know it can take quite an emotional toll. I think the guidelines are good and needed, but maybe they can instill in us a false sense of how easy our treatment should be. Many of us don’t get there via the optimal path. Please be encouraged that you can still get there. And once there it isn’t like the testing and worry will magically stop just because you made it to MMR.

My path looked like this:

11/3/2016 Diagnosed CP 96%

8/17/17 Stalled out on Imatinib at .54%. Tried higher dosage but ultimately switched to Bosutinib.

6/25/18 Down to .19% but elevated Liver values on Bosutinib. Took a break, tried dose reducing but still bad liver values. Switched to Dasatinib.

4/1/19 MMR .08% on Dasatinib 100mg

Mike - Seriously consider cutting your dasatnib dose to 40-50 mg per day. 100 is old protocol and you run a much higher risk of pleural effusions and other adverse events. Given that you are now MMR, you only need to maintain at a minimum and likely will continue your trend downward.

I started taking 20 mg when my PCR was over 40%!! I am now "undetected" and 20 mg helped me achieve that level.Talk to your doctor and show him the research articles.

https://www.ncbi.nlm.nih.gov/pubmed/29723397

Mike that is wonderful news, glad to hear of your great results! 

Great news Mike B!  What were your liver numbers while doing bosutinib and did you try any supplements or foods to try and lower while on that drug?  Just curious on that point.

 

Steff

My numbers were about 4.5 times normal high for both AST and ALT. We took a 3 week break and restarted at 300mg dose but within a week they were back up to higher than before. That caused a longer break to let the liver recover and then the change to Dasatinib. I found Bosutinib the easiest on me so was sad to let it go. But Dasatinib has worked well too. I avoided all alcohol and tried milk thistle supplements to help the liver with Bosutinib.

Mike

So pleased for you and thank you for the encouraging post.

i was diagnosed Nov 2017, BCR of 50, initially put on Nilotinib nut had to come off it due to low platelet count.

I was then told that It would be a good idea to look at a SCT as a back up plan, started on 100mg Bosutinib, BCR slowly reduced to 5 but then began to get elevated liver numbers and BCR went back up to 20!! Very worried at this point.

My heamatologist then put me on steroids while at the same time gradually began to increase the Bosutinib. I’m currently on 400mg and seem to be tolerating quite well and also now slowly coming off the steroids.

my last two BCR results have been 9.1 and last week 6.5. I was disappointed with the last one as I hoped it would have come down a lot more than that, I have been quite worried that I will never manage to reach MMR but reading your post has given me renewed hope. Thank you so much for this, not quite so worried now that I had not met the medical guidelines.

Best wishes

Diane

 

Diane - Did you ever have mutation testing done?  It could be possible that you have a mutation that would respond favorably to Dasatinib.  I think the SCT conversation is because it takes time to plan for one and find matching donor.  This is not something that can be decided and moved right into.  I am also a slow responder and have switched to Tasigna.  lowest of 0.111% (at 16 months) followed by a 1.2% at 18 months before the switch.  Also having med breaks may have also kept your numbers high as this is something that needs to be constantly attacked daily with these meds.  Hope your numbers drop soon.  

Yes I think mutation testing was done with my second bone marrow biopsy last May. But I was never told the result and I didn’t ask (I think I was still in shock at the time and didn’t want to ask questions).

If my BCR numbers don’t continue to fall I think I will ask to try Dasatinib. Just hoping that the trend will continue downwards at the moment.