Hi All,
A bit of an update. My local transplant unit has advised that a potential unrelated donor has been found for me on the German bone marrow registry. Looking at a mid September transplant, depending on the availability and health of my potential donor and me. A series of appointments have been scheduled for me with various doctors to check my heart, lungs, teeth etc.
Earlier in the year my haemoglobin level was dropping quite quickly. For the past few months I have been having four weekly blood tests. The good news is that it has now stabilised around 80 g/L. The results have been 78, 79, 80, 81 and 82 though not in that order.
My fellow kiwi readers may be interested to hear that ruxolitinib is likely to be added to the list of funded drugs for MF in New Zealand later this year. My haematologist raised the idea of waiting and then seeing if six months of ruxolitinib treatment was beneficial. My gut feeling is not to wait.
Also of possible interest to our kiwi readers, my haematologist sent a sample to Melbourne for the high risk mutations screening (ASXL1 etc.) that is often mentioned on this forum. None were found.
Best wishes to All ...Simon (PMF)
