April 2009

Had a visit to London again and we summed up the current situation. So far there has been no significant response to ATG and Cyclosporin and I am still requiring 2-3 units of blood every 3 weeks or so and HLA matched platelets every 7-8 days. I am still neutropenic with a neutrophil count between 0.5 and 0.8.

We discussed the treatment options available. To continue as I am with transfusions when required would lead to an iron overload as well as the possibility of reacting to the blood being transfused or to the platelets.
A second course of ATG is possible but only has a success rate of 35%. It also brings with it risks of relapse (15-20%) as well as a small chance of moving to MDS (myelodysplastic syndrome) and changing into acute leukaemia. As I have a small PNH clone (paroxysmal nocturnal haemoglobinuria) this could cause anaemia, requiring more blood transfusions and a slight risk of venous thrombosis.
Another option would be to consider an unrelated donor bonemarrow transplant. Prior to the BMT there would be a conditioning period using chemotherapy and Campath as an immune suppressant. With a BMT comes a 10- 15% risk of graft rejection and a low risk of graft versus host disease. It was thought that whilst a BMT is generally more successful with the under forties than the over fifties, my general level of fitness would be very much in my favour.

So this put a new slant on things and I duly sent off to the Aplastic Anaemia Trust for their very informative booklet Blood And Bonemarrow Transplantation : The Seven Steps.
Wow! there is a lot of interesting reading in that! including some scary statistics to focus the mind. I just have to keep remembering that the statistics include people who have underlying problems and infections and that every individual is different. I have to say that I personally feel so well that I sometimes wonder if they have got the right patient!

I find that I am now beginning to feel more creative - definitely a positive indication. I seem to have more mental get up and go than of late. Possibly this is in part due to the improvement in the weather and the promise of spring.

We have had a few days in Cornwall which is always uplifting. We stayed in a friend's caravan on the top of a cliff and walked some of the coastpath. I struggled a bit on the very steep parts but felt I could go on forever on the flat.