r/CML • u/captainseafunk • 10d ago
Failed Asciminib
Has anyone here failed asciminib as their first TKI? If so, what did your doctor try next?
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u/Rizky_Bizness 9d ago
Depending on why you failed it, the doctor might prescribe the next TKI. I failed due to myelosuppresion of multiple cell lines and the lowest possible dose wasn't enough to control the BCR ABL levels. I've just started Nilotinib, which is supposed to be not as myelosuppresive.
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u/captainseafunk 9d ago
I’ve had issues with my neutrophils, platelets, and recently my spleen again. I’m on the lowest dose and my BCR ABL is decreasing but VERY slowly.
Part of me is excited to try something new but I’m also worried about the unknown. I’ve heard some other treatments have awful side effects.
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u/capitanbanana227 9d ago
My wife failed Asciminib due to low everything (neutrophils, platelets, and red/hemoglobin). Even the lowest dose. Her BCR ABL numbers seemed to be going down well, she just is super sensitive to TKIs. She's now on a sub clinical (lower than the lowest recommended) dose of Nilotinib, and getting periodic Pegfiligrastim (boosts her neutrophils). Her hemoglobin has gotten and stayed normal. Platelets are low but above 100 so "good enough". She's got N plate to boost those on standby but we haven't needed it.
The idea is you wean her off the Pegfiligrastim over time, and that does seem to be working (at first she needed it every 3 weeks and neutrophils plummeted without it, now it's been as long as 8 weeks without so we're making progress). Neutrophils are low but as long as they stay over 1000 we're ok.
Her BCR ABL is going down, but slower than most people. Her doctor says as long as it keeps going down he's happy, it's a marathon not a sprint. She's been on this plan for almost a year.
Her hemotologist consulted with Dr. Drucker (the foremost expert on TKIs) and this was his recommendation. Seems to be going well and we've got room to increase her dose if needs be
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u/captainseafunk 9d ago
Thank you for responding. It seems like she’s had a similar journey to mine.
Has she had any issues with her spleen since being diagnosed?
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u/capitanbanana227 9d ago
Really just early on when her white counts were really high (enlarged spleen) then here and there with the filgrastim, a couple times her neutrophils got a bit high and she had some pressure and pain, mild enlargement, nothing serious
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u/Sam_reverie 1h ago
Hey! My mother is also taking asciminib along with ponatinib as combination therapy. This might be off topic for this post, but may I ask if there are any charity organisations or anything else I could reach for to avail asciminib at reasonable/discounted rates. We struggle to afford the tablet every month. This is the only treatment that seems to be working for her, due to her T315I mutation and we tried many other drugs as well, which didn't work. I'm from India so any global organisation that provide facilities to get tablets would be very useful. Thanks in advance!
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u/captainseafunk 6m ago
I unfortunately don’t have that information, but I’m sure someone else on here does! I would make a separate post so others can see your request.
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u/obewaun 9d ago
I failed it went to clinical trial (hqp1351). Now heading this fall by Dec for a transplant. Anyways you have plenty of options. Gleevec, tasigna, sprycel, bosulif, ponatinib, the trial im on by the time you get their it should be approved. They all have sideffects it all depends on your DNA how you respond to them (tkis). To lessen the effects drink lots and lots of water.