I have been meaning to write this for weeks so the usual
apologies for not keeping you all updated.
I have finally been hit with a confirmed case of
Graft-versus-Host-Disease, my consultant has been very reluctant to say GvHD up
until now - all the skin rashes and issues I’ve had have been attributed to
drug reactions. This is good news, GvHD is something we have been waiting for,
it shows that my donor immune system is recognising me as foreign, and this
increases the chances of the immune system recognising and attacking any
disease that might show itself.
It does come with some discomfort though, at the moment it
is mainly a very nasty rash covering my torso and arms, mouth sores and dry
purple soles of my feet. The mouth sores have made it quite hard to eat, which
has resulted in me loosing a bit more weight frustratingly, I am now a meagre
11 stone, a weight I have not been since I was about 18. Last weekend my face
went bright red and swelled up, I was put on steroids and some strong creams
and this has sorted the swelling, but since then my face has peeled constantly,
and is still quite red. This, combined with the weight loss, makes me look like
I’ve just returned from some polar expedition, looking windswept and in need of
nourishment! Not a bad look really, could be worse. The only real issue is the
face cream, which my eldest informed me makes me smell like ‘ear wax’. All
these symptoms are controllable though (the rash on my torso is looking better everyday)
and at least at this point there is nothing significant going on with major
organs. Liver, kidneys and lungs all operating fine. I am no longer on any nasty anti-biotics for CMV as the test results have come back negative for the virus, and the toxoplasmosis is also currently in check. My treatment for the pneumonia I contracted continues, but this is only once a month so is not particularly intrusive.
One of the best things that we’ve been told is that my
symptoms suggest an aggressive donor and this can only be a good thing as it
means it is likely to be aggressive towards any left over Myeloma. I have also
had it confirmed that a bone marrow biopsy taken last week shows no disease and
100% donor marrow. I am currently, officially, a chimera. A blood test taken in
September showed my blood was a 100% donor too, but a bone marrow biopsy
provides a much better picture of what is going on. This is incredible news, my
faulty bone marrow is gone, hopefully never to return. My new efficient,
aggressive German marrow has taken over!
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