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Doctor appointment tomorrow / Switching Medication Nilotinib to Imatinib ?

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Hey guys!

Maybe some of you remember me from my post in which i thought i will never reach MMR!
There are some good and some bad news :D!
I reached MMR after around 27 months on nilotinib treatment.
Today marks the month in which i will be on nilotinib for around 3 years.
My BCRABL right now is around 0.02

So lets get to the bad news and to my question.
I will be honest: in the last months I'm not feeling very good. I continue to have some kind of dypnea and problems with massive fatigue (to the point where I can't even function properly). It took very much from me (like going to the gym regularly)...
Many of this problems started like 10 months ago, where my onc upped my dose from 400 to 600mg (This increase only lasted for around 5 months because i got some strange feelings in my heart fast heartbeat, Pounding inbetween the normal ryhtm...).
So we lowerd the dose, but some things like shortness of breath never resolved. I went to a pulmonologist (all clear) and to a cardiologist which will now have further tests, but at this point he can't really explain where it comes from, so all the fingers are pointing to nilotib (again I never had such problems before the drug).
Tomorrow I will have a talk with my Onc about switching medication / which way we will go in the future.

My question to you guys:
Do you think it would be a clever step to switch from nilotinib to Imatinib?
I'm genuinely scared of Dasatinib (because I know about the problem of Pleural Effusion and PAH).
My gutfeeling says that her recommandation will be dasatinib.
In germany you can only get asciminib if 2 Tkis fail.

Did anyone ever switched from A first line to a second line?
Does that even make sense in your eyes?
I would love to hear some opinions. I really appreciate this forum.

Merlinlewis, with your BCR-ABL percentage at 0.02 it shouldn't take a very high dosage of TKI to control your remaining CML. You might want to try to convince your oncologist/hematologist to put you on a lower TKI dosage; if it's Dasatinib 20mg would be preferable, but no more than 50mg, to reduce your worry of pleural effusion. If Imatinib, 200mg would be OK. You are your own best advocate so give it your best shot.

Best wishes for your continued success,
Buzz

Hi, I would go for 20 mg Dasatinib not 50 too toxic rather than Imatinib .Shouldn’t get problems on 20 mg ,a few days of mild headaches then you should feel fine ,where as with Imatinib fatigue for me was much much worse and it affects your eyes with swelling and puffiness ,you get hooded eye lids and you won’t look like you it’s really awful .This is my experience anyway .Good luck .

I have a CML friend who went from Dasatinib to Imatinib so yeah you can go from a gen 2 to a gen 1.

If I were you I’d push for Imatinib for several reasons. 1 being it’s the drug we know the most about and 2 seeing as you’ve responded well to Nilotinib you’re very likely to respond to Imatinib as the drugs are very similar - in fact Nilotinib is based off of Imatinib.

I too am on Nilotinib and can say I’ve experienced the crippling fatigue on and off over the 5 years I’ve been on it. It’s a fatigue that’s very difficult to describe other than it’s a complete flat battery mentally as well as physically. I’ve had times where I woke from a good nights sleep then an hour after waking I want to go back to sleep.

This tends to improve a lot when I am active and exercise. It’s noticeably less. Luckily I don’t have the heart issues yet, but I am expecting Nilotinib to mess up something as it’s unfortunately one of the most toxic TKIs out there.

I am glad you’re stable and I am sure whatever drug you decide to go with push for lower dose. Less tki is a good thing once levels are stable and your low level disease.

Good luck.
Al