Saw Dr Claire Harrison, who co-authored the 2008 study which included 24 patients with the W515L mutation. None of them had the combination of MPD/MDS, however, so it wasn't likely that my disease will follow their course. Dr H said there was an Italian study of MPD/MDS patients that she would refer to, and also see whether others working in the field had come across the combination with W515L. Work is going on to construct an international database of patients with these blood cancers, but that's still some way off
Meanwhile, Dr Harrison was going to refer back to the results of the bone marrow biopsy, which I think originally confirmed the diagnosis of MDS. She said that MDS is more aggressive than MPD, but the blood test results were quite stable. In particular, the platelets (483) were almost down to the upper end of the normal range (450) and neutrophils (2.50) were within normal range. Only RBC and Hb were considerably outside the normal range, so it seems that the hydroxycarbamide is doing its job.