Hi all,
I was diagnosed June 2023 and reached all the milestones for reducing BCRABL. As of my last test, I was at .044%. Imatinib side effects-- some fatigue, minor hair loss, skin itching, etc.-- are annoying but not debilitating or dangerous.
At my last appointment I mentioned to my oncologist that I hoped for TFR some day, to which she responded that if that was my goal I should consider a switch to dasatinib or other 2nd gen, basically saying imatinib has probably taken me as far as it can.
Having been offered another option has got me thinking about what my treatment goals really are.
My first wondering is-- is it worth aiming for TFR? Might I achieve the same outcome by being able to lower my TKI dose and remain on it the rest of my life? And is TFR even a realistic goal, given the current success rates?
My second wondering is-- does switching TKIs put me at risk for a mutation/ drug resistance? (I've read competing info on this.) And if so, is the potential benefit worth the potential risk?
I'm 43, I eat healthfully, exercise, and take the recommended supplements.
I would be grateful for insights and guidance as I consider what my goals really are.
Sincerely,
Winnie
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Hi Winnie,
EDIT: -- DISREGARD below, I misread your original post --
I would say that switching TKIs is probably a good idea right now. A result of 0.44% is a reasonable way off MMR (0.1%) and ideally that should be achieved 1 year from starting treatment. So that in itself is probably a good enough reason to switch given you are more than a year in. That said, it all depends on the trend of your results - are they still coming down, or are they plateauing off at that level?
Aiming for TFR is an entirely personal goal (or not). At your fairly young age, you may like the idea of being able to come off meds at some point. New TKIs are likely to offer a better chance of successful TFR, but are no guarantee. I tried it after several years of very low results on dasatinib and it quickly failed.
Switching TKI doesn't at all put you at risk of further mutations, and in fact the newer TKIs work better against most mutations than imatinib.
But at 0.44% you are some way off needing to think too much about TFR. Your first priority should be to get to MMR, and then once you are there into a deeper response and then you can start to think about dose reductions or eventually TFR.
David.
Hi. As a long term (17 years) imatinib patient I have a different view.
My journey as an imatinib user working towards a TFR attempt starting 7 years ago is detailed at some length in this thread https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po.... I was undetectable, and lost remission after 17 months taking no meds. I'm now on 200mg with minimal side effects and undetectable. As I was undetectable before I first reduced to 200mg and then stopped, I don't have any reason to think that any other TKI would have made it more likely that a TFR attempt would have been successful.
I'd encourage you to watch this video https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-... which is now 5 years old but still very relevant.
I hope that is useful
Ah, I must have misread. Thanks for pointing that out Alastair.
Winne - disregard my earlier post, it was based on my reading of 0.44% not 0.044%. Sorry about that.
With this in mind, I guess a lot of it comes down to how you feel with imatinib. If you are free of side effects, then maybe you're happy to continue on and see if your results get even lower over time. Maybe it's better the devil you know! After a few years on imatinib you may well end up with a consistently very low result, and TFR becomes possible. While it is true that the newer drugs can offer a better chance of TFR, many people have successfully managed TFR coming from imatinib.
David.
Wstevenson,
I was on imatinib for 11 years before I plateaued. At that point I switched to Nilotinib and within 10 months I hit MR5. Your reading of 0.044 in 15 months is good in my book and very encouraging. I share your doc’s theory that switching to maybe a 2nd gen TKI may bring you to TFR. But I also believe that in general you do have to give these TKIs time to work. You may not agree here but I would say give it at least 3 years. Even if you switch and you get to TFR the deepness of that reading depends, in my opinion, on the amount of time on these drugs. And also, sorry to be a killjoy here, but if you do remain on imatinib the side effects could get a little worse. My side effects while on imatinib did not really kick in until around the third year. Also remember that the other TKIs have different side effects so before switching do your research. One of the reasons I stayed on imatinib for so long was the fear of having to deal with new side effects. Finally, I also believe age does play a role here.
Sorry, I am not sure that really answers your questions but hopefully in the least getting input from others helps you make a more informed decision.
Good luck Wstevenson.
David, Alastair, and Joe,
Thank you all for sharing your experiences and perspectives. You have given me a lot to think about. Alastair I did read the entire thread you shared (so cool to follow your story over the years) and I watched the video you shared. I feel more empowered having this information and your different perspectives.
Best wishes to you.
Winnie
Alastair and all,
I did decide to switch to dasatinib, started this past week. My reasoning was this- if I'm dealing with side effects (worst of which has been fatigue) I may as well try the dasatinib and be more aggressive with the cancer. Getting closer to undetectable means closer to either a dose reduction or TFR.
I can also start experimenting with fasting, which I have read so much about here.
The first couple days on dasatinib I was quite nausested and achy but that has slowly improved. I will keep you posted on my next bcr-abl.
Thanks again for your counsel.
Winnie