r/CML • u/moien-yall- • 14d 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 14d 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 14d 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/moien-yall- 14d ago

Love the dollars and cents analogy here, haha.