Monday, January 30, 2012


Blood test this morning, followed by an appointment with Dr L in Haematology Outpatients, not with Professor M as expected. We saw Dr L 50 minutes after the scheduled appointment time of 10.10, and this happens every time. There is something badly wrong with the way they schedule appointments.

Platelets were slightly up on laat time - 526 compared with 501 - but not enough to alter the dose of Hydroxycarbamide. WBC count was down (3.97) and there was no reading for Neutrophils, with which the PLT count has to be balanced. The risk is of thrombosis, but is not high as long as the platelets are under control. Longer term risks are bone marrow fibrosis and leukemia (< 1%), but Dr L is referring me to Dr Claire Harrison at St Thomas's, who is following up the survey of MPL mutations published in the journal Blood, and referred to in the previous post on this subject. This means she will have a better idea of what to expect, and in particular, how long I'm likely to be able to continue working normally. Dr L gives the impression, without actually saying so, that he thinks the original estimate of one year given to me off the cuff by Professor M last August was pessimistic, and at least Dr Harrison should be able to say what the mean experience was of the 24 patients with the MPL W515L mutation in the cohort she studied.

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