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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.
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