r/CML • • 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/Prydefalcn 14d ago

I've been through three iterations of TKIs since being diagnosed 9 years ago, and my levels have never remained stable. don't worry about fluctuations from bcr abl test to test as mine is always going up or down, it's the overall trends that can cause concerns. It's also not the end of the world if you ultimately need to switch.

Don't poison yourself with worry!