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What is success rate for chemo for MDS?

Home Demo forums Patient Message Board What is success rate for chemo for MDS?

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    Clement Rose

    I had a bone marrow biopsy. Doctor wants to start me on DECITABINE. Blasts were 9. I’d rather not. What other choice?

    Amy Clark

    Well, Clement Rose, that is/was the million dollar question for many of us. We feel your angst.

    My husband didn’t really want to start it either. The other choice was to stay on the Aranesp injections which after a couple of months hadn’t done anything and he was needing more blood transfusions than before. Blasts were at 6% and the doctor gave us 7 medical articles/studies highlighting how bad ASXL1 was. We were newbies. We all are. In hindsight, we may have needed to give the Aranesp more time. But… We made the best decision we could with the info we had at the time and knew that we couldn’t look back with regret, because we never will know what would have happened.

    We decided to go with the Dacogen.

    We found general info for some mutations’ predicted response to hypomethylating agents (Dacogen/Vidaza) when the mutations were looked at individually, but no study that took the combination of mutations into account. And keep in mind that even these studies only often account for the first 4-6 cycles. His mutation did not look like a good responder to HMAs, but it was a better option than Aranesp we thought.

    My husband was not showing much response during the first 6 cycles, in fact he was worse and progressed the first two months, but told the doctor he wanted to stay on for at least 7 cycles because of articles we had read early on that said sometimes the response is delayed. Guess what, after the 7th cycle there was a def. uptick in the RBCs. He is now on cycle 10 and we will ride this until his MDS progresses or he develops leukemia. At that point he will look for another clinical trial, probably one with Venetoclax.

    At our visit last week the doctor told us that he was glad we were patient people, as he was not a patient doctor. He strongly, strongly encouraged my husband to have a HSCT several times while he was on the Dacogen. But my husband and I told him that from what we were reading, the relapse and death rate from HSCT for the ASXL1 mutation and several other reasons warranted us giving this med a good long run.

    Ha! Look at this. I just paused writing and googled a bit and this article popped up. Here is one recent study by a doctor at the Cleveland Clinic who is trying to find the answer to what you are asking in your topic question using several combinations of biomarkers. Maybe there is info here that can help.

    I will pray for you to have a clear direction. These decisions are so personal and can be very difficult. There is no one-size-fits-all answer. God bless you.

    • This reply was modified 3 years, 11 months ago by Amy Clark.
    • This reply was modified 3 years, 11 months ago by Amy Clark.
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