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Nilotinib Dose Reduction?

Hi everyone hope you are all doing ok.
I have had Cml since October 2021 and to the day have been on Nilotinib 600mg. I have had a consultation today and my PCR/ABL is 0.003%.
I am doing good, just the usual side effects ie on and off bone pain, headaches, dizziness, etc but manage ok.
I just wanted some thoughts on whether 600mg is too much and if anyone who is on Nilotinib has had dose reduction and how they have got on.
My consultant is absolutely adamant I need to carry on with the same dosage, I know it’s a difficult one.
Thank you to everyone on this forum as your insight is appreciated and valued.

Min

Hi min,

I was on nilotinib 800mg for over 9 years, and in mmr for most of that, only changed medication and dosage this year due to my age, to be honest I’ve had more side effects with the new medication than I ever had with nilotinib.

Peter

I was told if i was below 0.01 for 12 months i could reduce my dose. I was reduced from 600mg to 400mg which i took in one dose rather than the 2 which made a practical difference to me. My BCR ABL remained below 0.01. I think each consultant has a different idea on dosage though.

I have since developed thyroid problems so have been moved onto a low dose of asciminib.

17721459,
You are doing great! I was on Imatinib for 11 years and it took 5 years to reach MMR. When I switched to Nilotinib within 10 months of starting I reached MR5, 0.00. I attribute most of that work to Imatinib. Nilotinib got me over the hump. In my opinion You still have to put the time in and thoroughly clean out all the errant BCR/ABL copies. If you are able to endure the 600 then maybe stick with it but watch for the more serious side effects of course. I developed hyper lipidemia so I am also on a statin. Once you are totally undetected, which basically you are, then sit pretty at that level for 2 to3 years and then try TFR. As far as dose reduction, I had to drastically reduce to 400 as i couldn't take the effects but I am still able to maintain an undectable level. If you reduce try to do it slowly in as small of increments as possible.

Good luck!

Hi Min,

I was diagnosed two months after you and since then I am on nilotinib 600mg. After nine months my BCR-ABL was undetectable and remain since then. I hope you feel better one day without side effects. I had a lot in the beginning, bone pain not anymore, just fatigue at times. Noise reduction I haven't had and neither discussed yet. I can understand how you feel, the worst thing all these years is the "robotic" life as we have to follow the three hour fasting period twice per day.
I hope you remain in DMR until the time you try TFR.

Savvas