Hello and about my MDS.

[jamesbond]

Hi everybody.In 2010 I was diagnosed with Chronic Lymphositic Leukemia which I am glad to say is now under control.In 2011 I was then diagnosed with Anal Cancer.That was cut away and I am now cleared of that.Earlier this year I was feeling very tired and got out of breath when I walked up hills or stairs.My cancer Doctor diagnosed after bone marrow tests etc.that I had MDS.I saw him again on Thursday(the results of some test had just returned) and I was shocked to hear that in simple terms that I had 1-3 years left and the shock made me very emotional.I have pulled myself together now but still cannot believe that this is correct.Other than felling tired and the breathlesness I am extremely healthy and when I get the chance I still race single seater cars in aid of Cancer Awareness in Men.Has anyone else had a similar experience.I told the doctor that I would see him in ten years time.I go for a blood transfusion next Wednesday.

[chris]

Dear James (?)

I was so sorry to hear you had had such difficult news - especially after having already endured some previous cancer diagnoses and treatments. Unfortunately, sometimes people do get what is called secondary MDS as a result of treatments for earlier cancers. Do you know if this is the case with you? No wonder you are feeling in shock and emotional. It is quite unusual in my experience for doctors to give such a stark and precise prognosis and I would suggest that you phone Sophie Wintrich, our patient liaison person who has a wealth of information about MDS and about new treatments that are available.

When I first recieved my diagnosis I found a Leukaemia and Lymphoma Society Factsheet about my type of MDS (CMML) which stated a median survival of 12-24 months!! I was terrified! This leaflet has now been replaced (August 2011) and interestingly the prognosis is now stated as 10 months to 5 years!! Well, I am now over 5 years following diagnosis and I am convinced that I had had low white cell counts for about 6 years prior to that which begs the question of whether late diagnosis has any impact on survival and how accurate prognosis can be. What I suppose I am saying is try to not be too panicked and seek out more information from your doctors so that you can get a better picture yourself of what type of MDS you have and what your risk factors are.

I hope you will be feelig a lot better after your transfusion.

Take care

Chris