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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (257)Comment receiving replies
Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age 50, and my blood results were a bit off for 3 years before that. I'm also on "watch and wait". Currently I'm moderately anemic and mildly neutropenic, but haven't needed treatment,and live a pretty "normal" lifestyle. I just get tired. The haematologist is not really able to give timeframes, but if my haemoglobin drops below about 80 she has said I'll be given blood transfusions as needed and started on lenolidamide to stabilise red cell count. I'll need an allogeneic SC transplant down the track. I understand that a number of different factors play into how quickly MDS progresses, and individuals are also different. Initially I was very anxious, but I've learned a lot about living one day at a time and being very thankful for each day. Any long term planning is quite difficult and seems a bit futile. Wishing you all the best.
Replies to "Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age..."
@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.
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I was recently diagnosed with MDS with anemia. I have been anemic for many years but until our blood test results were published on our patient portal I didn't know bad it was. If my hemoglobin goes below 10, I will begin injections of a hormone to help my bone marrow make healthy cells. I am on watch and waited. I hope the best for all.