Although I wrote in early December that it would probably be my last post of 2012, this is my second post since, but I received some good news this morning that must be recorded here.
The hospital rang to say that the results of the additional chimerism test they did on the 6th have arrived ... and I am now 100% donor. None of my original immune system remains, as far as the tests can show, meaning that the last few of my original T-cells that showed up three weeks ago have been killed! I have been waiting for this day for a year, pretty much since they did the second chimerism test and decided I needed treatment with mature lymphocytes from my brother.
It means that the transplant has been as successful as it could be. It is as close to a cure that I can get, and it is the perfect Christmas present.
I would like to say a very special thank you to Harry, to all the staff at UCH, and to all of you for your support. Happy Christmas!
Monday 24 December 2012
Wednesday 19 December 2012
Immunisation
Today is a milestone on my journey - I have begun my immunisation program.
I remember very clearly during the week before my transplant the doctor telling me all about it, and what will happen. He told me that after the transplant I would have the immune system of a baby, and 18 months after the transplant I would be given all of the normal infant vaccines. I remember thinking that 18 months was a lifetime away ...
... and the day has arrived! Today I got 3 jabs (diphtheria, polio, tetanus, and a few others). Some require repeated doses, over the next 3 months. They do not give me MMR ("live" vaccines are contraindicated).
I remember very clearly during the week before my transplant the doctor telling me all about it, and what will happen. He told me that after the transplant I would have the immune system of a baby, and 18 months after the transplant I would be given all of the normal infant vaccines. I remember thinking that 18 months was a lifetime away ...
... and the day has arrived! Today I got 3 jabs (diphtheria, polio, tetanus, and a few others). Some require repeated doses, over the next 3 months. They do not give me MMR ("live" vaccines are contraindicated).
Thursday 6 December 2012
Host T-cells refuse to die!
The results from last chimerism test show that there is still a small residual level of my original host T-cells (white blood cells). Today at the clinic they took blood for a repeat test, in the hope that the previous DLI (donor lymphocyte infusion) is still working, and these last few blighters will be killed off.
As I have remarked before, the chimerism test is only accurate to a certain level, so even if the test is negative it does not mean that I have no residual T-cells, just that the test cannot detect them - in the case of a negative test there is some uncertainty. However, since the test is showing a small positive, there is absolute certainty that I still have some host T-cells, and so they will treat me with another DLI in the new year if this latest test still shows positive. The only risk of another DLI is that I will get GVH (graft-versus-host disease), but since I have had hardly any from the previous treatments, it is unlikely that I will get bad GVH from another treatment, given that the cells are all from the same batch taken from my brother last February (deep frozen).
As I wrote last time, I will now start a series of vaccinations and boosters similar to the ones given to children. Interestingly, this does not include MMR, which they do not give to adults on the grounds that the chance of getting any of them is low, and the possible risks are not worth it.
In the hospital, someone has been watching too much Star Trek, and all the nurses now have colour-coded uniforms! Sadly, not quite as bold as the Trekkie oranges, reds and blues, but limited to piping around the sleeves and collars of their blue jackets.
I suspect this will be my last post of 2012, so I wish you all seasons greetings, and a healthy new year.
As I have remarked before, the chimerism test is only accurate to a certain level, so even if the test is negative it does not mean that I have no residual T-cells, just that the test cannot detect them - in the case of a negative test there is some uncertainty. However, since the test is showing a small positive, there is absolute certainty that I still have some host T-cells, and so they will treat me with another DLI in the new year if this latest test still shows positive. The only risk of another DLI is that I will get GVH (graft-versus-host disease), but since I have had hardly any from the previous treatments, it is unlikely that I will get bad GVH from another treatment, given that the cells are all from the same batch taken from my brother last February (deep frozen).
As I wrote last time, I will now start a series of vaccinations and boosters similar to the ones given to children. Interestingly, this does not include MMR, which they do not give to adults on the grounds that the chance of getting any of them is low, and the possible risks are not worth it.
In the hospital, someone has been watching too much Star Trek, and all the nurses now have colour-coded uniforms! Sadly, not quite as bold as the Trekkie oranges, reds and blues, but limited to piping around the sleeves and collars of their blue jackets.
I suspect this will be my last post of 2012, so I wish you all seasons greetings, and a healthy new year.
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