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Hello everybody , i was dx in 2003 im now taking Bosutinib. Anyone taking Nilotinib?

Is your blood pressure ok are you ok taking nilotinib no side effects?

I have been taking Nilotinib for over 10 years and my blood pressure is fine. My only real side effect is slight constipation.

I was taking nilotinib from 2014 to 2021.
Unfortunately I had 2 strokes whilst taking it.
It can be a side effect.

I was taking nilotinib from 2014 to 2021.
Unfortunately I had 2 strokes whilst taking it.
It can be a side effect.

I am starting nilotinib after taking Spyrcel for 3 years and then Bosutinib for 3 years. I am starting on 200 mg morning and 200 mg evening.
Are you still showing detected on Nilotinib?

I’ve been on Nilotinib for 2 years after 11 years on Imatinib. I have been in CMR for one year. I developed hyperlipedemia, my eyes give me issues, and I have constipation that is manageable. I am curious as to why you are asking since you are on Bosutinib now after 2 strokes with Nilotinib. Hope you don’t mind my curiosity.

I am on nilotinib since December 21. I take 300mg in the morning and 300mg in the evening following the fasting period (two hours before, one hour after the dose). I was undetected after nine months on Nilotinib

After 1 year of 100mg Dasatinib without achieving MMR, I started Nilotinib 200mg+200mg on the 1st January 2024 and after 2 months and no issues increased it to 200+400. I feel a bit pressure and light headache after 400 dose, so I should probably start measuring the blood pressure.

I’ve been considering adding 50mg Dasatinib to 200mg Nilotinib as it seems to be superior to any single TKI at full dose without significant increase of side effects for people without serious co-morbidities.

Has anyone tried combining TKIs?

The combination therapy of imatinib and dasatinib achieves long-term molecular response in two imatinib-resistant and dasatinibintolerant patients with advanced chronic myeloid leukemia

Nilotinib and Dasatinib Produce Synergistic Growth-Inhibitory Effects In Imatinib-Resistant CML Cells, Including Subclones Bearing the Multi-Resistant BCR/ABL Mutant T315I

Nilotinib-mediated inhibition of ABCB1 increases intracellular concentration of dasatinib in CML cells: implications for combination TKI therapy

I never gave thought to mixing TKIs but why not. Two things here though, one is safety, and the other is coverage. If you are doing this I would hope you are at least informing your onco. Be careful with going off script on treatment. Your articles are compelling but they seem to be based on relatively small sample sizes, at least from my initial cursory review of them. Some insurance companies are not real keen on unproven solutions especially when they are paying for it. I imagine if your oncologist orchestrated the drug regimen than you should be good. Keep us posted on your progress.

Of course, I discussed it with the doctor and he’s supportive, but also concerned about possible side effects, specifically regarding the heart toxicity as there is no clear info on interaction of multiple TKIs and what could the effects be.

But since I failed Imatinib and didn’t respond to Dasatinib, instead of waiting another year to see how it goes with Nilotinib, I want to try combining low dose Nilotinib and half dose Dasatinib. The doctor is very confident that it’s going to work even in my case as I obviously developed some kind of resistance even though there are no known mutations.

Dasatinib costs 200 euros per month so should not be a problem.

This is so good news. I was on Spyrcel but they had to lower dose as I got water in my lungs. On the Bosutinib I get sever rash and raised liver enzymes.
Started Nilotinib only 5 days ago, so far I tested my diabetics and it’s above normal, so will have blood test in 4 days and talk to dr in 6.
Glad it work for you.

Thank you Sue. It's sad that you had all these side effects. I hope nilotinib will work for you also. When I diagnosed i was 34 years old. In the beginning, I had all the time glucose levels above normal and also raised liver Enzymes. But now are normal. I try to focus in more "healthy diet" and also exercise in my day routine. Fortunately I don't have any issues with my heart and monitoring every six months. I wish you all the best and soon have good results too!!

4 weeks of 400 mg Nilotinib and 50 mg Dasatinib did not produce any results, I dropped from 42 to 33, which is considered insignificant. Have been on 80 mg Asciminib for 20 days now, will see how it goes mid August.

One of my first oncologists told me early on that each TKI bonds to errant BCR/ABL molecules in different ways. Some may bond weakly sort of like a square peg in a round hole. It is different for every person. You may have not found the right TKI yet. I have heard good things about Asciminib. The bond in question regarding this drug is the myristol pocket of the BCR/ABL molecule. I hope it works well for you 30k. Keep us apprised of your progress.

Thank you Pojo, will let you know how it goes with Asciminib. Maybe the combo needed more time to kick in, but I couldn’t tolerate it any longer.

What was the reason of your heart attacks?

I had 2 strokes not heart attacks.the cause was nilotinib.and not seeing a Haematologist for 6 years or monitored by the hospital or GP.

So you were on Nilotinib when you had the strokes?
I ask because you said you weren’t seeing a hematologist.
Who was writing the script for you?
I assume you had an oncologist.
Anyway I’m interested as I am on Nilotinib also.

Hiya I was taking nilotinib when I had the 2 strokes.
I was under a Haematologist. But since 2003.i was taking imatinib then disatinib.then nilotinib now bosutinib.
But when I started taking nilotinib only ever saw a nurse specialist for 7 years.