My haematologist suggests that, as I have had two years without showing any symptoms of CML, I should stop taking imatinib, and he has suggested that 75% of CML sufferers who were on imatinib, can come of it and never develop CML again. I am 73, and I have several other diseases, including IHD and spinal stenosis, which is gradually crippling me. What should I do?
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Doctor suggests that I should stop Imatinib
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Richard, yes, you should try stopping Imatinib; you have absolutely nothing to lose. Should you relapse, lose MMR 0.1, during this attempt, convince your hematologist to restart you on a low dosage of Imatinib, preferably 100mg. It should suffice to bring you back to undetected in a short period of time.
Buzz
Thanks for your advice, Buzz.
It has taken me 16 years to get to where I am now. Should CML rear its ugly head again, I fear that I might die with it, or of it, neither of which is a good option.
Hi Richard,
To offer a different viewpoint, if your CML is well controlled and you don’t have major side effects from imatinib what is to be gained by coming off it?
The 75% figure is rather high. It’s much closer to around 40% of people who are eligible to attempt TFR are successful, and the percent of people who are eligible is maybe only 50% of patients (at best) so really it is much lower. There is a section in a recent webinar (featuring yours truly) where this is discussed, and the doctor from Kings said something like 15% of all CML patients were successful. You’ll have to watch the webinar to find the exact figure, I might be a bit wrong. Very different from 75% because you have to take into account all the excluding factors.
Anyway, if you are considering stopping I would suggest that watching this webinar recording is well worth an hour of your time.
https://www.leukaemiacare.org.uk/support-and-information/support-for-you...
David.
Congrats Richard after 16 years that’s quite a journey. I was on Imatinib for 11 years before it stopped working. I agree with David if you are undetectable and have few or tolerable side effects I think I would stay on the meds. I know they make a 100mg pill. I would park on that and then maybe if you maintain CMR for say another 5 years then maybe you eliminated the risk.
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