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What are your experiences with lenalidomide (Revlimid) for MDS?

Blood Cancers & Disorders | Last Active: Oct 29 11:35am | Replies (7)
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@colleenyoung

Hi @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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Replies to "Hi @nbadry, I'm tagging fellow members like @jrsav @gingerw @tristram @coynelane @darlaburley @janetlen @5qdeletion @marco88, who..."
nbadry | @nbadry | Oct 19 10:01pm

Thank 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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