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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
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.
Replies to "Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended..."
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Do you know what might be recommended when Revlimid for a 5q deletion patient fails? Procrit failed after 1 1/2 years; then Vidaza infusions worked for another 1 1/2 years. Now Revlimid, although keeping Hgb at 11, caused late-onset diarrhea (a known side effect, that late-onset) and was stopped. Waiting for almost a month to get word from the oncologist and hematologist.
What next? Or is there nothing other than transfusions for this patient who has naturally occurring high iron readings that will make transfusions very troublesome?