I am sorry to be posting this at such short notice, but I have just seen the announcement of another webinar on MDS that might be of interest to some readers of this Forum. This one is entitled "Current and Emerging Therapies for MDS" and is being given by Dr Mikkael Sekeres: I have heard him talk several times before and have found him to be lucid and easy to understand for non-professionals (in contrast to some recent webinars which seem determined to blind listeners with genetic jargon that still seems unrelated to the real world). The webinar is at 6pm UK time tomorrow evening (April 7) and can easily be found on the home page of the Leukemia and Lymphoma Society--www.lls.org.
Since I am posting, I should use this opportunity to thanks most deeply all the staff who have looked after me so brilliantly over the last eight years. I was diagnosed with low-risk RCMD MDS in 2008 with the slight complication of moderate marrow fibrosis (which seems to lower survival rates and makes biopsies more difficult). I needed immediate treatment as my haemoglobin was falling in the range of 8. So I went through darbepoietin and G-CSF, which helped for a few months. I was then having red blood cells transfused for a year or so before consultants at King's suggested a clinical trial with lenalidomide (Revlimid). Since I live in Switzerland, this would have been difficult logistically. Fortunately, my haematologist in Geneva persuaded my insurance company here to pay for the (hideously expensive!) lenalidomide treatment. That was just over six years ago and I have been transfusion-independent since. In recent months, I have had to have weekly EPO injections to restimulate my response to the lenalidomide. Eventually, I know that I will stop responding to the drug. In the meantime, I have been able to enjoy life immensely. So, profound thanks to Prof Mufti at King's, his colleagues, clinical nurses and all the front and back office staff, as well as my haematologist and her staff in Geneva.
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