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CML pausing treatment: Anyone stop and restart Sprycel (dasatinib)?
Hello,
It’s been a while since I have posted anything. Quick recap, diagnosed late 2018 and was put on Sprycel, have been though the roller coaster for labs and side effects. Eventually everything leveled out, side effects has stabilized and labs have been undetectable for 2 years now, last follow up was last week. Overall things are as good.
I have been given an option of going off the Sprycel. Currently taking 50mg/day and have asked about reducing that to 20mg/day. My Oncologist doesn’t feel there would be much benefit, either on or off the treatment. Says there are patients who have stayed off treatment and stopped when at this point.
Has anyone here stopped treatment?
I worry about if/when I might have to restart treatment and how well I might respond a second time?
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Hi @living, it has been a while. Good to hear from you. I'm tagging a few CML-ers who have experience with Sprycel (dasatinib), like @dmmurph @talmadge81 @chrondor @bobmon, who may have experiencing to share.
Did you stop treatment? Was your oncologist able to answer your questions about restarting treatment and what might indicate restarting?
I have not stopped treatment. There isn’t much data on stopping and restarting, one study with 100 people followed. He wasn’t real clear about what stopping would look like, assuming I would continue regular labs to monitor for changes.
My layperson understanding is that if you gain deep molecular response (BCR-ABL1 count < =0.01%) for a period of a few years (I think its up to 3 but not certain), it's possible to go treatment free, but that about half of people can actually stay treatment free. The treatment of course would need restarting if your BCR-ABL1 count started rising, that seems to be the straight monitoring measure on all this. I was looking forward to going off Sprycel in 2019 when I was in remission for a period of 2 years, but then suddenly experienced very bad plural effusion. Right after that episode I then started Tasigna, which has kept me at low levels but not quite at or below that 0.01% threshold. Fortunately I'm tolerating the Tasigna well and the counts remain low. One concern is the long term effects of taking the medication and the impact on other blood counts like liver functions etc. So far the pro's outweighs the con's. As others have rightly said above,, you just need to continue monitoring!