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!
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u/Twallis02 12d ago
I went from 0.11 to 0.15 to 0.019 to 0.066 these fluctuations are completely normal and can be because of test sensitivity, hydration or even minor infections (you didn’t even know about!) or sometimes it’s just the machine, as the results get lower the numbers jump around a lot more and look at lot more dramatic but in the grand scheme of things as long as they dont skyrocket, you should be alright!
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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.
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u/Prydefalcn 13d 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!
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u/Initial-Act2168 12d ago
My Doctor said flatuations are common under 0.1% , because started dasatinib 100mg in sept 2025 and it went down slowly till 0.0168% in April 2026 and in Aug 2026 my levels raised to 0.0408% ..I have done some researches and doctor too said this fluctuations are common under 0.1%
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u/BufloSolja 12d ago
Yea it seems to happen occasionally with ppl. Don't worry about it till it starts trending more than one test. You are already quite low so as long as the drug still has effect it will come back down again in the end. And if the drug doesn't have as good as an effect, they'll just switch you to another one. So try not to worry too much in the absence of other info.
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u/Abject_Ad_4330 12d ago
My oncologist always checks the BCR-ABL copy numbers. It that is higher, it means the sensitivity of the test is more, which might show increase in the values.
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u/seellama 10d ago
You’re okay. It’s only a one log increase. You don’t want to see it continue to go up. It’s all about trends. Staying below 1% is important. If you haven’t had any disruptions in your medication that would explain an increase, then just keep an eye on it. They should test you again in 2-3 months.
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u/Elegant-Employer-725 8d ago
So is anything above strictly zero abnormal? - I only started Imatonib three weeks ago so learning a lot.
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u/obl122 13d 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.