Please post here your experiences of MDS as a patient, carer, family or friend
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- Posts: 3
- Joined: 18 Mar 2016 19:42
- Location: Bucks
I was diagnosed with MDS in April 2010 in the RAEB form. Because of my age only palliative care is available, I have a transfusion usually every 4 weeks. Situation proceeded with out change, just experiencing the usual breathlessness and tiredness. I then developed antibodies and shortly after that my blood group changed. Next came JAK2 mutation bringing with it skin irritation, swollen glands on the back of my head and a thrombosis. In July 2016 my platelet count was found to be high and I was put on 500 mg of hydroxycarbomide daily since reduced to 5 days a week. Since being on hydroxycarbomide I have vivid dreams every night; sometimes relating to that day's events, sometimes to a combination of events in my past. To complete the story I have been on the Telesto trial since 2011 and am looked after at the Churcghill. Further I diabetes and live on my own.
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