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I have been diagnosed and under treatment for MDS
Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (16)Comment receiving replies
He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?
Replies to "He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started..."
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Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended Dacogen for good reasons. If Dacogen is helping him maintain his red cell count and platelet count, then that's a good reason to continue. Given your husband's age, a transplant is not going to be recommended, and all other choices are focused on keeping his blood counts up, not on curing the MDS. That's what Dacogen can do.
Vidaza is another drug that is effective for many MDS patients. Like Dacogen, it's what's called "hypomethylating agent." Some patients who don't respond to Dacogen or Vidaza try the other one next, but if your husband's counts are holding on, you may not want to mess with success. His low white count is obviously a concern, so that's worth asking the doctor about directly.
A subset of MDS patients have a particular chromosome abnormality, called "5q minus," for which a drug named Revlimid is especially effective. Presumably, your husband doesn't have 5q minus or the doctor would have recommended Revlimid over Dacogen.