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What are your experiences with lenalidomide (Revlimid) for MDS?
My MDS del 5q has deteriorated over the last few months. I've had one transfusion (Hb was 74) and am about to have another. I'll qualify for subsidised lenalidomide when I've had 8 units of blood altogether. I'm wondering how much of an improvement I'm likely to see in haemoglobin counts on the drug. Feeling pretty lousy once it dips to the low 80s...Thanks in advance.
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Jeffrey, I can tell you my husband’s experience with treatment and what we’ve learned from doctors. Vidaza infusions may cause nausea, but sublingual Odansetron/Zofran offers immediate relief. If Vidaza works for you, nausea may be your only issue… there was a lot of talk by patients in the infusion room, and Vidaza seemed not to cause side effects for most.
My husband’s hematologist and oncologist both are reluctant to discuss projections at all. But we think we’ve learned that each 5q med that we know of - Procrit/Retacrit, Lenalidomide/Revlimid, Vidaza/azacitidine - each can be successful for two to five years. That has held true for my husband. We measure success by the ability to avoid transfusions - keeping hemoglobin above 7 or 8 (and other CBC numbers in the “ok” range) depending on how he feels and ability to get up and move about each day.
Weekly Procrit injections lasted about two years, then Vidaza infusions about two years, then Revlimid/aabout two years… it was winding down when terminated because of negative impact on his kidneys. Now back to Procrit which for some reason has been working, but he’s approaching the two year mark, and hemoglobin drops a little every week for the past six months.
Are you responding to Vidaza infusions? You could get up to five years out of it from what we’ve been told and read about. There are other options - a new one Rytelo/imetelstat might be possible - actually we’re depending on it for the day Procrit stops working. With each change, there’s always the angst about whether or not the new protocol will even work. I do hope you are doing well on Vidaza - it’s giving you a lot more time!