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BCR-ABL1 0.08 at 6 months


I got great news today.  My PCR result is 0.08 at just shy of 6 months on treatment.  News like this does help.

I started on nilotinib, but had trouble with side effects culminating in a TIA so was switched to dasatinib after 2 months.  The 100 mg dose of dasatinib had me so lightheaded I stopped driving by the end of 2 months, along with the common shortness of breath.  Six weeks ago my dasatinib dose was cut to 50 mg.  Things are getting better slowly.  Advice from people on this site that it takes a long time to realize all the gains from the dose reduction was very useful in setting expectations.

I'm still not where I want to be given how long I'll need to take the TKI even if all goes well.  I'm working on getting back in shape as being short of breath is one of my biggest remaining problems.  I have gotten past the point where I stand with the pill in my hand wondering if it is worth the side effects.  

Thanks for this community, and may you all get great numbers.

0.08% after 6 months of treatment is stellar! An “optimal” result it anything below 1%, so you are miles below that. In fact you are below the optimal result expected at 12 months.

Quite a few of us have reduced our doses over time, and there is emerging evidence that “less is more” when it comes to dasatinib. Trials are underway as well with lower amounts of nilotinib. If you click on “news” then “articles” on this site, there’s one about 50mg dasatinib which is worth reading. 

However you might find your doctor hesitant to reduce below 50mg for a while yet. I am on 20mg now, but took me 6 years to get down to that. I was on the full 100mg for 5 years, so tapered over the space of a year to get it down. I’ve achieved my lowest ever PCR on my lowest dose.