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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (254)Comment receiving replies
@nbadry
I also was diagnosed with 5q deletion in 2023. I had my first doctor explain that I would not need treatment until my RBC count went below 10. That doctor left the practice and the new doctor is recommending Lenolidamide. My RBC was 10.3 two months ago and just last week it went back up to 11. I have not felt any difficult symptoms. I walk 2 miles and feel some shortness of breath on an incline. Otherwise, I am not fatigued to the point of needing naps or stopping activities. I am reluctant to go on the medication.
I am wondering how you are doing now and if you took the Lenolidamide and whether it helped you? I am 73 years old.
Replies to "@nbadry I also was diagnosed with 5q deletion in 2023. I had my first doctor explain..."
@ruthshow1
I'm doing amazingly well on the lenalidomide. My Hb has gone from 7 and needing transfusions about once a month, to 13!! I feel fantastic 😁 I didn't really feel that I needed intervention until my Hb dipped to about 8.5 and everyday life started to become a struggle. If Id had a choice I would've started lenalidomide at this stage, however I had to wait to become eligible for free lenalidomide through our health system. I've been on it for 4.5 months and my only side effect now is constipation. (I take one Movicol sachet a day and all is well.) Earlier on I had a mild rash, which didn't need treatment, and a big crash in neutrophils and platelets which did need treatment. This has resolved. I dont know if starting the drug sooner would have been of medical benefit, but that's a question for the haematologist. I hope this helps and that if you start it that it works really well for you! Nicole
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@ruthshow1