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

Posted by nbadry @nbadry, Oct 19, 2024

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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jamie14 | @jamie14 | Jul 11 6:41pm
In reply to @ruthshow1 "@jamie14 At what point did you take lenolinamide? I have 5q del and a HGB at..." + (show)
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@jamie14
At what point did you take lenolinamide? I have 5q del and a HGB at 10-11 and very minimal hindering symptoms. The doc is recommending the med now. I’m not sure I want to start it yet. It’s been so helpful to know others who have this diagnosis. Thanks.

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@ruthshow1 I was diagnosed April 3rd and started Lenalidomide the 19th. My doctor is in Chicago my HG was 9.3 I take 5 mg everyday. 3 days ago was hemoglobin was 14 and my RDW is not w 15.9 it was 19. Only problem is my platelets are 72. I go back Tuesday anxious to see what she says.

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ruthshow1 | @ruthshow1 | Jul 12 7:28pm

Thanks. Let us know what the doc says.

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