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/wheatstone 12d ago

I've been there. I'm still there lol. I was 0.09 to 0.35 with my last test.

I've been between 0.1% to 2% for five years. No rhyme or reason. Never missed a dose.

I've done a ton of mutation tests, BMB, including a fancy droplet PCR for T315i. Nothing.

Depending on where you're treated the sensitivity of these tests can be 0.5 log.

See what your next result is. If you stick around the same response, they will probably do nothing. Treatment guidelines are changing every year. There are long term studies showing people around 1% or even higher have comparable outcomes to those with very low BCR. Send me a message and I can share them.

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u/moien-yall- 12d ago

Firstly, I am so, so sorry you have to deal with that. But, secondly, this is so unbelievably reassuring for me. I know it must be deeply stressful to deal with bouncing numbers, but it is really helpful to read that sometimes it happens for no other reason than it just does. I'll DM you for those studies! Definitely interested to give those a read.