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What are your experiences with lenalidomide (Revlimid) for MDS?
Blood Cancers & Disorders | Last Active: Sep 23 2:08pm | Replies (42)Comment receiving replies
@nbadry what are your platelets? I have been taking Lenalidomide since April 21st. 5mg everyday my numbers are all back to normal besides my platelets which were 72000 last week. Bloodwork in 2 weeks.
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@jamie14
My platelets are stable at about 100, neutrophils 1.0 and Hg 13 (almost double what it was before starting lenalidomide). I get lots of small bruises but I have not had infections, apart from one cold this year 🙂 I've been on 10mg for 7 months. Had a marrow biopsy in August which showed an excellent cytogenetic response and normal karyotype...so the lenalidomide is suppressing mutations very well. At about the 5 month mark I developed severe diarrhoea which persisted. It really impacted my quality of life. However I started on cholestyramine which has worked very well, as long as I don't eat much fat. (Apparently the diarrhoea is due to bile acid malabsorption caused by the lenalidomide.) I get blood tests once a month and need 6 monthly marrow biopsies (as a previous one in April showed some new genetic mutations). I'm so thankful for the lenalidomide and the medical care I'm able to access. Hope that's helpful to you, and anyone starting on lenalidamide. Nicole