[Chirley]

Hi, I've just got my latest BMB result. I've been reclassified as MDS RCMD Int 1.

I don't understand the part of my result which says...55% of erythroid precursors are ringed sideroblasts. Does this mean I have RARS as well? or is this a normal finding.

My marrow is now hypercellular with less than 5% blasts. Peripherally I have anaemia and leucopenia but the bone marrow also shows ...increased megakaryocytes with dysplastic features... although my platelet count is normal on blood tests. Does this mean all 3 cell lines are affected?

I have been asked to take time to consider my treatment options but he gave me a request form to do tissue typing for BMT.

It turns out that Revlimid is not available here ( I thought it was) and I would have to pay $40,000.00 for 6 cycles of Vidaza. I can afford the Vidaza but I would rather not have to if there are other options. I want to opt for the Valproic Acid but I've had it before for Trigemnial Neuralgia and I developed liver dysfunction. My liver enzymes are already high (? from iron) and the haematologist appears to be reluctant and says that I only want to try it because it's easy just to pop a pill and he is worried my liver could fail.

It looks like supportive treatment only is coming to an end and I have to make some decisions.

I'm feeling a little overwhelmed tonight but I'm sure I'll be able to think clearer tomorrow.


I've been told to do as much research as possible, write out a list of questions and talk to as many people with this disease as I can. The haematologist gave me a list of websites and organisations to contact. I'm going to be busy.