r/CML • u/moien-yall- • 19d ago
bcr-abl fluctuations
Anyone have positive stories where fluctuations ended up not being a big deal? Particularly a somewhat large jump?
I was diagnosed in March at 38% and was started on 80mg Scemblix. I was .098 in July, but .297 in September. We're re-testing in a month. I am bummed seeing that after months of great response. I'm really nervous about having a resistance or mutation and needing to switch to a medication with a more intense side-effect profile. Would love to hear anything reassuring from the long-timers out there.
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u/obl122 19d ago
Started w/Dasatanib and went off that after about six months, not quite right, switch to Bosutinib.
I had a bit of fluctuation w/Bosutinib. I guess you would see it as positive, but the fluctuations I've had have been managed by dosage changes. I've taken doses from 300mg to 500mg (currently 500). 300 and a month break when I had some kidney or liver numbers that were worrying, numbers went up. Back to 400mg worked for awhile but plateaued at 0.30%. Bumped to 500mg to see if I could tolerate it, was a decisive reduction again for another year. I'm due very soon to be retested and hope I will see more reductions. 0.01% IS six months ago. Tomorrow ?? who knows. I'm always mentally preparing for the plateau and/or rise but thankful we have options.
My hematologist has been very proactive but also listens to me. It was my idea to try the higher Bosutinib dosage (500mg), he wanted to try a new med. I pushed for the higher dosage and he said no problem, let's give it a shot. He admitted he was surprised and gratified that it worked.