T+147: An interesting clinic

Today the clinic was quite interesting. This last week I have noticed some dry skin on my face and head, the doctor told me that it was almost certainly caused by graft-versus-host disease. This is a good thing, as it means that my donor immune system is also hopefully attacking what is left of my bone marrow, which is the goal of the transplant (to kill all of my original bone marrow). Unfortunately, it also means that my white cell count has dropped, because the chemicals released in the blood as a result of the GVHD suppress the production of blood cells in the bone marrow!

The treatment for the skin problem is to apply steroid cream to the affected areas, which should resolve it, and hopefully enable my blood counts to stabilise. If they have fallen again next time, then I will be put back on the immune suppressant to enable my counts to recover; it is quite a balancing act! The next clinic is scheduled for two weeks time, but if the skin problems spread, or I get other symptoms of GVHD (like diarrhoea), then I will call the hospital and get seen sooner.

The doctor I saw today was another consultant on the BMT team that I had not met before, and he was very knowledgable, so I asked him about my life expectancy/chance of relapse. Although he was non-committal (like his colleagues), he explained the probability curves for the various risks, and concluded that probably, if I have not relapsed in 18 months then I should be OK, although a small risk will always be there. This is why I don't like to use the expression "I beat leukaemia"; it is never really beaten.

I had a "reduced intensity" transplant,meaning I was not blitzed with radiotherapy beforehand (because of my age and the risk of it killing me). Until recently, it was thought that leukaemia was too aggressive to be treated this way, especially my type of leukaemia (Philadelphia positive acute lymphoblastic leukaemia), although they have been doing reduced intensity transplant for lymphoma patients since 1997. Ph+ ALL is quite rare, and there is very little data about reduced intensity treatment for it (almost none in fact). The hospital only do 3 bone marrow transplants for ALL patients a year, and not all are reduced intensity! He thinks that in about 3 years time there might be enough data to form some more concrete ideas about outcomes.

My health continues to be good, and being back at work is very rewarding. I still have the phlegm (it may take months to go away says the doctor), and now this dry skin, but neither of these problems is affecting my life significantly. Although my white cell count and platelets are down, my haemoglobin continues to rise; today it was 11.8. This is because the lifecycle of red cells is much longer, and sadly this will drop back also over the coming weeks.