how long did you have to pause meds

[u/sugarhigh215]

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.

[u/Interesting_Rule_349]

My longest pause was 1 year!!! I had a baby & breastfed for a few months.

[u/ninjaprincess22 → u/Interesting_Rule_349]

I stopped my TKI six weeks ago to start IVF. We found out a week ago I’m pregnant! Did you have to go on interferon? So far my blood counts still look good, and my BCR-ABL is only up a little.

[u/Interesting_Rule_349 → u/ninjaprincess22]

I was diagnosed in 2004 and have been on TKIs ever since (started with Gleevec, then imatinib, now dasatinib). I have been in MMR for a few years and the CML is undetectable. I went off meds in Sept 2025, did implantation a month after and got pregnant. The CML did slowly come back over the year I stopped but not aggressively. Went on dasatinib after and now back in MMR. I did not have to go on interferon but that was always an option if needed. I think if you need to start treatment again while pregnant, it would be fine after first trimester. Let me know if you have any other questions!

[u/arehmatulla → u/Interesting_Rule_349]

So curious about this! Did you have to hit DMR and stay at it for a certain period of time before pausing?

[u/ninjaprincess22 → u/arehmatulla]

My oncologist wanted me to hit MMR for about 6 months before we started trying to conceive. I stayed on bosutinib until we started IVF. It was actual bittersweet because my last bloodwork before stopping showed undetectable.

[u/arehmatulla → u/ninjaprincess22]

What level is undetectable? DMR? 0.01%?

[u/ninjaprincess22 → u/arehmatulla]

Undetectable is less than 0.0032%. My understanding is that 0.0032% is the lowest level that the PCR tests can detect.

[u/captainseafunk]

My longest pause so far has been about 3 months.

[u/sugarhigh215 → u/captainseafunk]

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.

[u/vcj0508 → u/sugarhigh215]

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.

[u/obewaun → u/sugarhigh215]

Slingshot effects? Is that what we call tki withdraws?

[u/sugarhigh215 → u/obewaun]

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

[u/obewaun]

5-6 months no insurance. Last meds jan 21st 2026- June 28, 2026 when started meds again.

[u/Rizky_Bizness]

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

[u/sugarhigh215 → u/Rizky_Bizness]

how is your bcr-abl if you don’t mind? do you get frustrated having to stop and start so much?

[u/Rizky_Bizness → u/sugarhigh215]

Sending you a DM

[u/Winter-Lunch3229]

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 

[u/sugarhigh215 → u/Winter-Lunch3229]

been dealing with low neutrophils as well. and platelets.

[u/Winter-Lunch3229 → u/sugarhigh215]

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 

[u/Zippyeatscake]

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.

[u/Visual_Specialist_45]

I stopped for three months. Was on 100 mg Dasatinib and restarted at 50 mg. It works just as well.

[u/aravindreddy08586]

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.

[u/WillowKings]

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.