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Hello to all. I am writing about the term “Low Risk MDS” and Nancy Galbabreat in her post states what I believe to be a common sense answer i.e. there is no such thing as low-risk MDS etc…. The point of my email is to try and bed this term down. I for one was told I had low-risk MDS. Does it mean I have MDS or does it infer that you could be on the road to MDS but you do not have it now? I think it means just that i.e. you do not have MDS now.
But my Haematologist told me I had low risk MDS, without explaining that this did not actually mean I had MDS and gave me literature on MDS and said we would wait and watch for a few months. So I am off thinking I have MDS, but not at the high end. So this description of one having low-risk MDS, are we all agreeing it means it is NOT having MDS – or am I and others confused…or is the Doctor just not being clear enough and as Shakespeare or someone else said, that is the question.
Alicia, how old are you as this is relevant to any proposed treatment.
Go to the website below. When you open the [age ignore the prices shown and scroll towards the end of page as you will see details on “Patient Assistance Programs for Revlimid” – Maybe something there that will assist you.
Tam, thanks for that information. Gerry
Agreed, we keep in touch from time to time. I too no symptoms…so likewise came as a shock. Gerry
And the very best to you on your own treatment.
I appear to be in the same bed or should it be boat, as you….I just had a bone marrow biopsy and the hematologist believes I have low risk MDS. I suffer no outwards symptoms. Was discovered only as a result routine blood test showing low platelets and etc… The Doctor is sending my biopsy marrow for one further test… He told me that if indeed the diagnosis is correct it will be just a wait and monitor situation with no treatment. He asked me to come back in 3 months with the results of a new blood test for further review – and in the meantime when he hears the result of the extra test being done he will telephone me to let me know outcome on that.
As a result of all this I registered here on this forum to gain more knowledge. I also did the usual google searches to gleam what I could and I read that a drug called lenalidomide was often recommended for low risk MDS. Not sure if such treatment is still the current approach, seemingly not based on what my hematologist said…but one never knows unless we check and double checks I guess. I will certainly raise this with him next time we speak. Allan, you never know what new drugs will they come up with for MDS, as the clock ticks for you and me. I am aged 69, male.
I have it (gastric distress) but never can determine if some form of IBS non related to MDS – a mystery so far – Doctor make little importance of it, so far.