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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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@nbadry
I live in the US. I was able to start Revlimid when my HB was around 9. The lowest my HB got was around 8.7 and I was feeling unwell, so I can imagine how you feel. I started Rev. In March at 10mg which was too much for me. So, the dose was lowered to 5mg. I am responding well with HB typically exceeding 14. I have escaped transfusions for now. Hope you get started on Revlimid soon!
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2 ReactionsThank you.
In Australia our government Pharmaceutical Benefits Scheme will subsidise lenalidomide for someone with MDS del5q once they are transfusion dependent...having needed 8 units of blood within 6 months. I was just being monitored until a couple of months ago, when my haemoglobin dropped fairly quickly fom high 80s to low 70s. I had a red cell transfusion and felt good for a few months, but it's now dropping off again. I'll continue with transfusions until I'm eligible for lenalidomide. I'm just hoping the Hb will rise sufficiently on the drug to carry out daily activities, because it's hard at the moment. (My siblings are currently being checked as possible SCT donors for further down the track.) I'm keen to hear about the impact of lenalidomide on other people's Hb levels.
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1 ReactionHi @nbadry, I'm tagging fellow members like @jrsav @gingerw @tristram @coynelane @darlaburley @janetlen @5qdeletion @marco88, who can share more about their experiences with lenalidomide (Revlimid) for MDS or other blood conditions.
You might also be interested in this related discussion that @packgb19 started a little while back.
- Is anyone here taking Revlimid? If so please share with me
https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/
@nbadry, can you tell me more about qualifying for subsidised access to treatment once you've reach 8 units of blood?
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