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Nilotinib or Dasatinib?

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Hi all

Its been a while since I’ve posted on here - I hope everyone is doing okay and had a nice Christmas.

I had my most recent telephone appointment with my consultant yesterday to discuss my results at 15 months. I’ve been on 400mg Imatinib since diagnosis in August 2021, with my results being 

3 months - 16%; 6 months 2.5%, 9 months 0.8%, 12 months 0.5% and 15 months 0.4%.

Given I have not achieved MMR and my levels have plateaued somewhat, my consultant suggests a change in TKI, probably to Nilotinib. I’m not against this per se, but have been managing well on imatinib - only suffering minor side effects such as cramps. The odd heart palpitations too but I’ve had an ECG which showed nothing untoward.

I know there is the fasting window with Nilotinib, but was interested in others’ experiences switching to Nilotinib and how to manage the side effects. Bosatinib is also an option but my consultant did suggest Nilotinib will likely be the one I switch to.

Grateful for any experiences of others and thoughts on whether this sounds the right course of action - my consultant has to discuss this at a meeting next Friday after which he will call me.

thanks all

Dan

 

14 years ago I plateaued at 0.6% after 12 months on imatinib, stayed there for 6 months and then got to MMR 21 months in. There was no option but to stay on imatinib back then - nether of the other TKIs were licensed in 2007. My experience suggest waiting another 3 months as you are not suffering with side effects on imatinib. 

Hi, some doctors are in such a hurry to get numbers down they suggest a change in meds .Some of us are slow but get there in the end .If you are not suffering with side effects then hold on  in there .If you do change I would suggest Dasatinib,Nilotinib sounds too much like hard work to me and will control your life .It’s your decision,doctors don’t always know what’s best for you .Don’t be rushed into anything ,good luck ,Denise.

Buddy all I will say is stick to Imatinib at 18 months I was 0.3 at 2 years 0.164 (I made MMR at 2.5 years) at nearly 5 years I am practically MMR 4 and I’ve been on Nilotinib for all this time. You really wanna keep as many TKI in the back pocket as you can. Zero reason for a drug change for now. In the US CCYR at 12 months is goal met. In the UK where I am from MMR at 12 months and that puts a lot of unnecessary stress on you the patient. Many don’t reach MMR for many many years. And CCYR has zero difference to MMR in patient outcomes…

Push to stay the course!! Better the devil you know.

Thanks for the replies all, really appreciated. My preference would be to stay on Imatinib so I will discuss with my Haematologist - my next test is due February so feels little point in changing right now as I could always see what my next results are like and take it from there. 

Hi Dan

I just want to add my experience as further support for what the other respondents have said here: it took me 24 months to get below 0.1% and my experience was very similar to yours as I plateaued for months... and this was on dasatinib, which is supposed to be even more potent than imatinib.  My advice is also to stay the course and give it time.  As long as the trend is downward and below CCYR (approximately 1%), you're in a good place and there is no need to be hasty and change just because things aren't moving as fast as in other people.

Remember also that when you change, you "use up" another TKI and this lessens the number of medications available to you at a later stage.  

I have no doubt that you will get there in time!  I'm now 7 years post diagnosis and doing well at a level of 0.003%, and am currently not taking any medication at all.

Good luck for your appointment and keep us posted!

Martin

Just thought I would update on this…I stayed on Imatinib and latest results are at 0.21% from 0.4%.

I was diagnosed in August 2021, so still not reached MMR but numbers still going down. I have a call this week with my consultant and hoping he will keep me on Imatinib for the time being, fingers crossed unless there’s a reason to switch now.

Hi Dan

This seems to be good news and just over half the previous result! It also mirrors my time frame and I know two friends living with CML who had a similarly slow time frame. If the numbers are decreasing the drug is working, and in my opinion it's better to keep the other drugs in your back pocket in case things go wrong somewhere down the line (which doesn't seem to be happening now).

Please keep us updated - I really don't think there is a reason to switch right now and I'm confident that you'll drop below 0.1% in August. It just takes another halving and then a tiny decrease.

Hoping for the very best for you

Martin

Thanks Martin. I’ve spoken to my consultant and he didn’t even mention switching TKI, was happy to give Imatinib more time in the hope of getting below 0.1%. Seemed happy enough with the downward trend so fingers crossed for the next set of results!

Sounds like a good plan, Dan - and I'm betting on your crossing that MMR line in August! Onwards and downwards.

Just received my results from the blood test I had done in May…0.18%. So close to MMR 😭 hopefully at 24 months in August I’ll cross that line!