01-08-2002

WBC : 2.6
Neut : 2.0
Hb : 10.6
Plts : 118

Day 181:   1st August
Another milestone today; 6 months. I've managed to get through the most critical part of the transplant process, relatively unscathed. We went to hospital today to find out whether I'd finally come off the cyclosporine (immunosuppressant drug). Getting the timing right is pretty important. It means that the donor immune system is now fully operational without any interference from any drugs, which is quite a big step forward.

The drug reduces the amount of graft vs host disease (GVHD), which can often cause serious problems to recipients of a new bone marrow. This also reduces the ability of the new immune system to get rid of any old remaining leukaemic cells. The balance has to be struck between allowing the immune system to fight the leukaemia but not letting it become so potent that it fights the body. A little bit of GVHD is not a bad thing, so the idea is to keep the dosage of cyclosporine as low as possible without getting a severe GVHD reaction.

So far the only GVHD that I have noticed have been the occasional rashes on my forearms and neck, in addition to fairly dried skin. The steroid cream helps to get rid of the rashes and I've been using moisturisers to try and prevent the skin from drying out.

I had been preparing myself for coming off the cyclosporine by increasing the intervals between each intake and found no adverse reaction. The doctor therefore suggested that I stop taking the drug altogether. The other reason for coming off the drug at this point was due to my PCR (leukaemic cell count). From the first reading of 0.016 my PCR count had increased to 0.189. That means that the number of leukaemic cells was slowly increasing. That could possibly be due to the fact that the cyclosporine was preventing the immune system from reaching its full potency, so the theory is that if you lower the cyclosporine dose the immune system works harder and kills the leukaemic cells. This seems to have been the case as my latest PCR reading had dropped back down to 0.09. Now that I'm off the cyclosporine, if the count then goes up again and passes 0.2 then the doctors will consider lymphocyte infusions. This is where the original donor is contacted again and asked to give some extra white cells called lymphocytes. These are the cells that fight viruses and also the remaining leukaemic cells in the body.

However as there seems to have been a reduction in the PCR count, hopefully the trend will continue without the need to contact the donor. In the next few weeks close attention needs to be paid to how I feel as any changes could be due to coming off the cyclosporine. The doctor advised that I continue to heed caution and refrain from entering air conditioned buildings. This means that I still can't go to the supermarket or back to work. Whilst my resistance to bacteria is as normal as anyone else, my resistance to viruses is still low, and will remain so for a while longer.