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Living with MDS (Myelodyplastic Syndromes)

Posted by momz @momz, Sep 4, 2023

I finally got my answer to what I have and trying to wrap my mind around it.
I am an ovarian cancer survivor of 20 years and have MDS for the last 7
Currently on watch and hate to even say wait!! What is the longest someone has had with no treatments? And what was the reason for treatment when it was needed?

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nbadry | @nbadry | 21 hours ago
In reply to @ruthshow1 "@nbadry I also was diagnosed with 5q deletion in 2023. I had my first doctor explain..." + (show)
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@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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@ruthshow1

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Profile picture for nbadry
nbadry | @nbadry | 21 hours ago
In reply to @ruthshow1 "@nbadry I also was diagnosed with 5q deletion in 2023. I had my first doctor explain..." + (show)
Profile picture for ruthshow1 @ruthshow1

@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.

Jump to this post

@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 | @ruthshow1 | 6 hours ago
In reply to @nbadry "@ruthshow1 I'm doing amazingly well on the lenalidomide. My Hb has gone from 7 and needing..." + (show)
Profile picture for nbadry @nbadry

@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

Jump to this post

@nbadry
Thank you! Your response means a lot to me. It helps to know someone who has taken the medicine. How did they treat the neutrophils and platelets, and how did that side affect make you feel? Also, at what number did you start having transfusions? I'm mostly trying to figure out how soon I need to take the Lenalidomide. I'm staying steady between 10 and 11.

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