Low risk vs. High risk MDS and Treatments

General chat
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Hi all,

I’m still researching about Myelodysplastic syndrome (MDS) on my own. So I would like to hear from someone here with real experiences please.

My first question is what criteria decide if you have low risk or high risk?

I knew someone who had EPO treatment for years to stay quite stable, which gives me hope. But then why EPO might not work for someone else?

I’m still looking for a good hematologist to have an evaluation for my case since I’m still healthy, except I have low trends of red cells for a while now, and more recently a bit of down trend with the white cells too. As I mentioned in my previous post, my Dad and his two siblings had the Shorten Telomere Syndrome which caused lung fibrosis and Myelodysplastic syndrome (MDS). They passed away from the latter.
So I am nervous about this. Seeking answers/real experiences from this forum is still more comforting than just google them myself.

Sometimes I feel that if I leave it alone, not having any diagnosis is better since it’s not really a curable disease. Some people only got diagnosed accidentally so that means they live for years without any symptoms. What are your thoughts on that?

I really wish to hear from you.
Thank you very much in advance.
Ana

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Oh @Anhtaa lots of questions and concerns.
You are right that everyone reacts differently to treatments, we are all unique individuals.
Also medical people make decisions on a lot of criteria about an individual.
I can really understand that your family history makes you nervous.
I hope others can share their experiences for you.
I have learnt to be pleasantly assertive if/when I do have medical appointments.
I like to have all my fears, questions and practicalities written down before appointments.
The Blood Cancer Support line is also there for you on 0808 2080 888
Perhaps there might be some some out of date and unreliable details on line.
Really look after and be very kind to yourself and please do keep posting

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