Hello everyone,
I am lucky enough to have been found “undetectable” for the last six months, after the usual routine blood tests.
Initially the consultant said he would either reduce my dose of Imatinib, or stop it entirely. Now he seems to have changed his mind and I continue to take a 400mg dose per day.
What is the experience of others, lucky enough to have reached this stage?
Many thanks,
David
Hi David
My journey from 400mg to 200 mg to 17 months treatment free to failing and restarting 400mg for a year and now stable on 200 mg is detailed on this thread. https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po...
Many people have found this video from the 2019 patient day useful https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-...
When were you diagnosed? Some people think you should have a couple of years on full dose before reducing but I think opinion is moving. Also do you have significant side effects?
Gut feel for me is might be a bit early to reduce now, but it is time to start thinking about it.
Hope that is useful
Alastair
Alastair’s video is a good one I definitely recommend watching that. I am also in agreement with Alastair, it’s a little too early to start reducing your dose. Conventional wisdom now I believe is 2 years on 400mg at undetectable for Imatinib before trying TFR. I never got to CMR on Imatinib but I did on Nilotinib. Waiting on a test to see if I am still at MR5 after 1.5 years. I plan to stay at 400mg till my 2 year anniversary. Then I plan to de-escalate for a year.
Thanks for your reply; most interesting. I have been on Imatinib for nearly for years now.
Hopefully they will reduce my dose soon.
David
Many thanks indeed for the very useful reply Alistair. I shall watch the video and read your post on your battle. Good to know that you are now stable on 200 mg. Something to strive for!
I have been in 400 mg of Imatinib for nearly 4 years now, and undetectable for 6 months and MR4-5 for about 9 months before that.
I do have side effects, cramp mostly, but one or two others but fairly minor.
David
David787, after one year of undetected, if your onc/hema has not begun to reduce your dosage, you might want to begin to gradually reduce your dosage on your own. Taking a whole Imatinib 400mg tablet one day, and a half a 400mg tablet the next day averages 300mg. It isn't necessary for you to test more frequently when you begin dosage reduction as you are still taking a sizable Imatinib dosage and shouldn't worry about a rapid increase in your PCR reading; continue to test at three month intervals.
Continue to gradually reduce your dosage at whatever pace you are comfortable with.
Buzz
