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TFR failed

Hi everyone, I am so grateful that the site has been provided so much valuable information and inspiration over the years. Diagnosed in 09/2019, taking 100 mg dasatinib, took 14 month to MMR in 11/2020, attained undetectable in 08/2023. During the course of treatment, some noticeable side effect such as muscle pain in the first 8 months, but overall is manageable. Feeling irregular heartbeat when laying down to the left. Prior to CML diagnosis, has been ulcerative colitis for 10 years. Unexpectedly UC has been maintained even better with the TKI. In 11/2023, 3 years after first MMR, The doctor started to advise to attempt treatment discontinuation. His opinion was I have had four years TKI treatment and been MMR for at least three years. I was hesitant to move forward and brought up multiple times if I could try lower dose as many have been suggesting in this forum. He said I could but this is not common practice. Usually lower dose is given to those with intolerance. I regret that I didn’t insist to try lower dose before discontinuation. I recently read that one of the criteria to attempt TFR is been DMR for at least two years which I am certainly not. End up I started the discontinuation in the mid of 12/2024. Soon UC flared up and now is under control. During the TKI free period, irregular heartbeats seems disappearing mostly. The first month PCR was still undetected, but the second month reading 0.0266%, and I just obtained the third month reading is 0.2124%, MMR loss. My PCR transcript is e13a2(b2a2). Not quite understand the difference to e14a2 (b3a2) except some articles said e13a2 might not have good TFR rate as good as those with e14a2 if my understanding and memory is correct. The doctor calls to restart 100mg right away. I tried to bargain with the lower dose. But he still stands with starting 100mg standard dose given PCR 10 folds jump comparing to the last month. Reducing dose should be preserved for the future when MMR is regained. He does mentioned possible worst case scenario if MMR not regained with lower dose. I am so anxious now. Any advice would be greatly appreciated!

Best wishes

DanC It’s natural to be anxious. I get like that too when numbers don’t go the way I planned even after 0ver 12 years of dealing with CML. It’s way too early to be thinking worst case scenario. And that’s what we are all here for. To let you know that your fears are most likely your emotions getting the best of you. You should be able to get back to MMR in a relatively short time. You can try again in a few years when you achieve DMR over 2 years. Remember there are many alternative drugs. I’m on my second. Keep coming back to this site we are all here for you. Finally one thing I can almost guarantee, once you get back on your drug, and you regain MMR, and you start to experience one of those annoying side effects, your anxiousness will turn to anger and you will move on to another chapter most likely one better than your last. For me at least dealing with the annoying side effects are in some ways a necessary distraction that keeps one moving forward. Have faith.

Hi Pojo, thank you for the replied and kind words. Yes, although being prepared that the failure might happen at some point, but still disappointed when it happens. Was thinking to father a child naturally in the TKI free window because my doctor opposed the idea over the last four years while on TKI. Unexpectedly my wife got pregnant and miscarried last week in the week 5. The Ob-Gyn doctor said it was mostly due to advanced maternal age other than the sperm issue. Of course, the Ob-Gyn knows very little on Sprycel. Now the thing is getting even more complicated since my doctor wants me to restart 100mg right away. We still want the dream of the child going on. I feel struggling if it is safe to try while on TKI. I am sorry that I diverted the topic of the thread. I really look forward to any advice. Thank you.

It is totally safe to father a child on 100mg Dasatinib / Sprycel. I did that, and was given the explicit advice of Prof Apperley to stay on TKI while trying for a baby. She’s likely the most expert person in the world when it comes to CML and fertility.

Watch this video from a conference I was at a couple of years ago. Prof Apperley presents data which shows it’s safe for to father a child while on dasatinib. Don’t let less informed and less expert doctors scare you.


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Remission Update