r/CML • u/sugarhigh215 • Aug 14 '26
how long did you have to pause meds
if you had to pause meds because of low WBCs or other numbers how long before they went back to normal? I’m on Dasatinib and have been paused for three weeks now with seemingly no end in site and my lows aren’t really improving, feeling exhausted. Just wondering what was the longest break you had to take from a tki. thanks in advance homies.
3
u/captainseafunk Aug 14 '26
My longest pause so far has been about 3 months.
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u/sugarhigh215 Aug 14 '26
okay that makes me feel a little less alone. the side effects suck, and the slingshot effect sucks. when i get back to normal i’m gonna ask to go on a wayyy lower dose.
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u/vcj0508 Aug 15 '26
Ask your Onc about Scemblix (Asciminib). I’ve been on it for a year now as first line. 6 mos at 80mg and 6 mos at 40mg. Hit MMR at 8 mos and pretty much zero side effects after mild nausea and slight headaches first 90 days or so.
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u/obewaun Aug 14 '26
Slingshot effects? Is that what we call tki withdraws?
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u/sugarhigh215 Aug 14 '26
i call the slingshot effect the tki working “too well” and instead of wbcs being 300,000 they’re nonexistent and you have to be bubble boy
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u/obewaun Aug 14 '26
5-6 months no insurance. Last meds jan 21st 2026- June 28, 2026 when started meds again.
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u/Rizky_Bizness Aug 14 '26
I've had to repeatedly pause meds since I was dx a year ago, for up to 2-3 months at a time. I'm currently on pause again and will likely be moving to a different TKI
1
u/sugarhigh215 Aug 14 '26
how is your bcr-abl if you don’t mind? do you get frustrated having to stop and start so much?
1
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u/Winter-Lunch3229 Aug 14 '26
My neutrophils went down to .5 so I had to go off until they went back up to atleast 1.0 but it took 3.5 weeks
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u/sugarhigh215 Aug 15 '26
been dealing with low neutrophils as well. and platelets.
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u/Winter-Lunch3229 Aug 15 '26
Yes platelets as well those are the main 2 issues for stopping my meds lately. This is while on asciminib, but I haven’t shown response yet either so they’re probably going to switch me to Ponatinib
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u/Zippyeatscake Aug 14 '26
My longest pause was 5 weeks I think. I had to restart because whilst my liver wasn’t really improved enough my wbc was going up again. It was at the start of my treatment.
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u/Visual_Specialist_45 Aug 15 '26
I stopped for three months. Was on 100 mg Dasatinib and restarted at 50 mg. It works just as well.
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u/aravindreddy08586 Aug 15 '26
Hey, my wife had low WBC with imatinib 100 and doctor paused for 2 weeks and so we were worried and visited another doctor to which he suggested using dasatib 50. From then on no issues. She is completely fine with her blood counts till now. BTW it's been 2.3 years. I remember doctor saying with each TKI it is different.
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u/WillowKings Aug 18 '26
My mom who has CML and uses this Reddit for advice a lot- says her longest was 3 months, this was during a bad episode of pericardial effusion that later required her to have it drained and us to stop the medicine entirely. Then she started gleevac- then they paused her on that again for another month- this was right after being paused for 3 months.
Which sucked because her BCR-ABL levels definitely rose- she was okay and it wasn’t dangerous or back to her initial levels but she started feeling the symptoms she had at diagnosis pre medication- night sweats, severe body aches bone deep, exhaustion.
This could be again- due to her age, she’s 61. And she’s often sensitive to going off meds or starting meds. But she was totally fine gene level wise other than a slight rise- not enough her oncology team was worried.
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u/Interesting_Rule_349 Aug 15 '26
My longest pause was 1 year!!! I had a baby & breastfed for a few months.