Hello, I was diagnosed in June 2016 at 56, though I noticed various symptoms of something wrong six months earlier. At diagnosis, the %age ratio was 73.2. After three months of imatinib 400, it came down to 0.50%. At 6 months it was 0.000% and remained there till August 2022. I asked my haematologist if I could try TFR and he agreed but warned it could relapse at any time and then I would need the same drug and dose or if that didn't work, a higher dose/2nd gen tki. After 4 years of tfr during which the bcr-abl ratio was in MMR (never 0.000 except for 3 months, but fluctuating between 0.020 and 0.081), I got a result of 0.368 in the test in September this year. Since it was <0.1, I was asked to restart the imatinib 400. So back to the side effects but now harder to bear since I'm 67! Has anyone had a similar experience under similar circumstances? I also have hypertension, prediabetes and osteopenia of the lumbar spine, and osteoarthritis... I'm so disappointed that I couldn't remain in tfr but want to know if I can try again if levels go back to 0.000. Thanks!
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TFR relapse
Jayu,
Sorry to hear your numbers went back up, but I don’t think that’s uncommon. Maybe look into Nilotinib, it’s the next gen after Imatinib. I think Nilotinib is a little better and more efficient and you could maybe even remain at a lower dose than the prescribed 400mg. The side effects are easier for me to handle. That lower lumbar side effect from Imatinib drove me crazy.
See what others in this forum say. Perhaps you can still remain on Imatinib but on a lower dose. I know of one particular member in this forum that does well on 200 mg and the side effects are much less.
You have options so don’t despair.
JP
Hi JP, good to connect with you! Yes that's what the doc told me when I went on TFR. I will see what the results of the next tests are and discuss if I can try a lower dose or a different tki.
It's just so lousy to have to go through side effects once again after what was a nice 4 year break! In my case the lumbar osteopenia is not due to imatinib. I had the problem before I got cml.
Thank you for your encouraging words...