What a bugger

Well the bad news is that my (Richard's) MDS has progressed - which is the technical term for got worse. My blasts have gone from normal (2%) to 8%. Between 5% and 10% is called RAEB-1 (refractory anaemia with excess blasts-1). This is what Ros had originally over a year ago - it then progressed to RAEB 2 which is between 10% and 20%. If it goes >20%, then you have leukaemia as well)

The situation for me is therefore to have bone marrow tests more frequently and monitor that and my blood tests more carefully - watch and wait
In addition as my iron level (ferritin level) is in the 400 region, which they had stabilised me at deliberately, they will now try and get it down closer to 50 (proper normal). The reason for this is that any drugs, chemo, transplant or other treatment they might give me in the future may well involve a series of blood transfusions. Each transfusion would automatically give me iron from someone else. Many MDS and leukaemia patients have an excess iron problem purely from too many transfusion - a ferritin level over 1500 or so can effect your heart, lungs or other major organs. So they immediately whisked me off for more blood letting. We are going to ask them if there is another way of getting my ferritin level down, as although this way is easy it does put extra strain on my poorly bone marrow as it repalces the blood - and just maybe that is what has triggered the 'blast'-ed problem.

The good news for me is that my iron level is good and since I had an infected tooth removed my blood results have got better, and I feel a lot better - less fatigue etc. Weird ain't it? Anyway I shall move forward with this new situation with a postive attitude.

Roz

The good news for Roz is that she is eating really well and they think things are going well, and they have the balance of treatment fine. Her blood results are good. They have taken a set of special blood tests to check how well her new bone marrow is doing - results in a couple of weeks