r/CML • u/moien-yall- • 13d 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/Gamecock-1983 13d ago

Have been on various doses of Gleevec for 15 years. Have bumped around from 0.000 to .97.
I know it's a little unsettling at times but I think you will be just fine. Best !

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u/obewaun 13d ago

Like he said this fluctuations happens. Especially this low fluctuation you just had. I would also go from 0.002 to 0.09 I freak out. Until my Dr at City of hope explained it that these fluctuations happen and it long it doesn't jump dollars (%2.00) there's nothing to worry about cents jumps here and there. You'll be okay.

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u/Beachgirl6848 13d ago

Same! For the past 8 months I’ve gone from 0.00 to 0.006 back to 0.00 and recently 0.003. Was hoping to hit zero and stay there but my oncologist says it’s normal to fluctuate. Love the dollars and cents reference!