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How's your quality of life living with MDS?

Posted by tascamman @twitt1949, May 16 7:53pm

This may be a broad question because MDS has different types of symptoms. (Can't think of the right word).
Anyways what I'd like to know is doctor told me the first time we met she confirmed I had MDS she said of all the cancers out there she would choose MDS for herself if she had to have one. She said normally since its very slow growing there is usually (and in my case) there is 7-8 yrs before anything will have to be done medically other than run blood tests regularly.
Has anyone else been told of several years before it gets bad. If so, what quality of life is the 7-8 years? I know weakness and getting tired is normal and I can handle that and hope thats all there is. But the last few days I feel like crap and my thoughts are its going to be a long 7-8 yrs. What experiences do you have?

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jamie14 | @jamie14 | 1 day ago
In reply to @nbadry "@twitt1949 Hello. I was diagnosed with MDS del5q (low risk) in 2020, but looking back at..." + (show)
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@twitt1949 Hello. I was diagnosed with MDS del5q (low risk) in 2020, but looking back at blood results, it had probably been brewing for at least 3 years before that. I had no symptoms. My haemaglobin declined slowly over years...it would be stable for awhile, then do a bit of a drop. My energy levels decreased accordingly, but I was still working full time and feeling OK. Once Hb got to about 85 I was very tired and started getting breathlessness, chest tightness and mild nausea. I dropped down to half days at work at this point. In Aug 2024 I started needing red cell transfusions about once every 10 weeks. Apart from the shorter work days I still functioned pretty normally. If I wanted to go on a bushwalk or out for a big day, I'd plan it for earlier in the cycle. The transfusions themselves just meant the best part of a day in a chair. By Jan 2026 the transfusions were needed once every 4 weeks. I felt as though I was dragging myself around a lot of the time and exercise went out the window as I couldn't keep a routine. I started on lenalidomide at this stage. The side effects are a bit of a nuisance, but 6.5 years since diagnosis I am feeling "normal" again in terms of energy! I have found a bigger part of the adjustment to be psychological. I try to be thankful for each day, and not allow the illness to dominate the way I view myself. Wishing you all the best.

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@nbadry Thanks for sharing.

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suetex | @suetex | 1 day ago

I was diagnosed in 2022 (BMB) and have little life altering results. I did have anemia which was corrected by a crores of Reblozal. It hasn't returned and since I have my blood counts taken every 3 weeks because I have IvIG and other than some what low platelets, I have no complaints. I am almost 80 so how long will I have to put up with this, who knows?

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sonieaml | @sonieaml | 2 hours ago

My MDS diagnosis came from my annual BMB this past December. I am in remission from AML diagnosed in March 2024. My ONC/Hem changed my treatment from Dacogen/Venetaclax 1/2 every 42 days to INQOVI (targeted for MDS) which I started on 6/23. One pill for 2 days. The hope is to get my numbers up in the normal range. He feels the MDS may be responsible as my numbers see-saw. Weekly blood draws are now in order for at least this first cycle of INQOVI. The only side effect has been over all body aches. I am 78 and work 2 jobs so I cannot complain…my life is blessed and for that I am grateful and give thanks EVERY day. Healing thoughts and prayers for everyone dealing with any cancer diagnosis!

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