MDS diagnosis

Hi everyone - on this most useful Forum.
I was diagnosed with Myelodysplastic syndrome (MDS) just under a year ago and like everyone else who gets this news from the medical professionals, it came as a bit of a shock to say the least, to myself and family. I was 80 when told - but on reflection though, consider myself very lucky having reached that age when I read in the Forum of many much younger persons diagnosed with the condition. I am on “Watch and Wait” at present, with the regular blood tests, etc… and told that when treatment starts, in my case it is likely to be straight on to chemotherapy in some form without the normal preceding bone marrow and blood transfusion processes. Apparently, if I was about 20 years younger, I would have undergone those procedures, and have agreed with my consultant to delay the chemo for as long as possible until the condition worsens. It affects me with bouts of tiredness, fatigue and breathlessness and occasional bleeding which I understand is quite normal for the condition. So, for now, like the rest of you, I will get on with, and enjoy life as best I can and wish every one of you best wishes in dealing with your own circumstances. The personal experiences shared on this forum are most encouraging and inspiring.


Hi @Mike13842 I am so glad you have posted and told us where you are.
You are now part of our forum family and never alone.
I will copy you the link to the Myelodysplastic syndrome (MDS) information on the Blood Cancer UK website.
Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
Everything you say sounds so natural to me and you seem to have settled in to ‘watch and wait’ (active monitoring). I have been on it for 20 yrs and I count myself a very lucky girl.
Perhaps don’t underestimate the emotional effect of your diagnosis on you and your family, I know I did. There is no right or wrong way of reacting.
I have learnt how to mange my fatigue over the years and life is good.
Please do keep posting as I look forward to hearing more about you.
Look after yourself and I really am glad that you posted

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Welcome Mike i was diagnosed late last year with Myelodysplastic syndrome (MDS) too and yes i enjoy the symptons you describe. I’m just having EPO injections which are working so far and hopefully they will continue to do so . Norma

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