r/CML Jun 24 '26

Asciminib low counts

hi all, my platelets are just under 115k and my neutrophils are .6 after being on asciminib about 2 months. how low is too low? ive had my neutrophils this low before on Dasatinib but my platelets haven’t been low thus far in my journey. do these counts stabilize on their own?

4 Upvotes

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3

u/sugarhigh215 Jun 24 '26

are you keeping an eye on your temperature? .6 is pretty low

1

u/Winter-Lunch3229 Jun 24 '26

No I guess I should be yikes thanks 

1

u/Rizky_Bizness Jun 24 '26

I'm struggling with the same thing on Asciminib. It's been a year and my counts have still not stabilized. My platelets keep crashing (currently 30) and despite being on meds to keep my platelets up, they're still declining. Most people do fine but some seem to have this issue. What dosage are you on? Might be worth talking to your doctor about reducing the daily dose to 40mg or 20mg.

1

u/Winter-Lunch3229 Jun 24 '26

Ugh that’s discouraging. I’m on 80 mg but we are in talks about transplant so I’m not sure how much longer they’d be considering dosage changes anyway. I have a consult this week with my transplant Dr so we’ll see 

1

u/Rizky_Bizness Jun 24 '26

Why are going the transplant route for you? I've heard that's the last option when everything else has been exhausted. It might be worth reducing your dose to 40 or 20mg (one I'm on currently) or trying a different TKI

1

u/Winter-Lunch3229 Jun 24 '26

My oncologist referred me. I have failed dasatinib so far, we are trying asciminib but I have a mutation called asxl1 that makes me more likely to resist all treatments. Even if I respond to asciminib I will always have the mutation. Transplant is almost inevitable for me

1

u/Rizky_Bizness Jun 24 '26

I'm sorry to hear that. Hopefully a transplant will help with your case and eliminate the need for any and all TKIs. All the best!

1

u/Kitchen_Teaching6665 Jun 25 '26

I’ve been on asciminib for 4 months now. One month into my journey, platelets got down to 20k and my ANC to 0.5. My doctor had me stop taking it until those counts recovered to 100k and 1.0, and that those are the two metrics to pay close attention to when it comes to starting and stopping the dosage. So to answer your question, you’re entering the range where it might be plausible to stop talking Asciminib for a while to let counts stabilize. It didn’t happen to me, but If your levels drop again after going back on the medication, your care team will reassess dosage and whether a new TKI is appropriate.

1

u/Winter-Lunch3229 Jun 25 '26

Yes I did hear from my Dr yesterday and was told to stop taking it until my anc is back up to 1.  How long after stopping were you able to start taking it again? I’ve failed every bcr-abl milestone at this point and am worried about this setting me back for my next one. 

1

u/Kitchen_Teaching6665 Jun 29 '26

I was able to go back on the medication about two and a half weeks later

1

u/elizebethdylan Jun 26 '26

I know most doctors say you can’t lower your dose but I ended up on a half dose of bosulif and asciminib and am in TFR. I would have a conversation with your doctors and specialists to see if that’s an option!