Peter’s Hospital Diary

I’m sorry I didn’t get to update this yesterday – we got back from London late afternoon to get several visitors – including my parents who will be looking after me this weekend while Felicity is away. I was also setting up a new broadband router in the evening, which took a bit of time to get just so!

However, yesterday’s check up went well. We arrived at Guy’s nice and early, and did the usual armful of blood from the Hickman line in the haemotolgy day unit. Then it was just a question of waiting for the analysis before seeing the consultant and discussing progress.

The enzymes in my blood that indicated kidney/liver problems are reducing, and the haemoglobin count is slowly increasing – hovering just below 10 (which explains why anything more energetic than climbing a flight of stairs is exhausting!) and the overall feeling is that I am recovering well from the transplant. However, the transplant is only a means to an end, and the reason for doing it is to provide me with a brand new immune system to fight the underlying lymphoma, so attention is now starting to shift to that aspect. Normally this wouldn’t be a concern until about 3 months after the transplant, but because I went into the procedure with rather more active disease than we would have liked, it is likely that I will have a PET scan in about a month’s time.

This also means that there is a drive to reduce the level of immuno-suppression so that the incoming graft can do its stuff and start being aggressive in getting to grip with the lymphoma cells. Therefore the Cyclosporin dose has been reduced, accepting the fact that this increases the risk of graft versus host disease (although a little acute GvHd is regarded as a good thing – it is the chronic form that is bad) There will also be DNA tests in the next month to see what proportion of ‘my’ blood cells remain in comparison with the donor’s. If the donor cells aren’t making sufficient progress, they can be helped by a white cell infusion (already in store) from the donor, but that is not an option while I am taking high doses of Cyclosporin – which is another reason for reducing the dose. I suppose the fact that I don’t have to go for another check up until next Thursday is also a sign that things are going well! I should have the Hickman line removed then too!

On a practical side, the swelling in my leg seems less pronounced. This (you may recall) first became noticeable last Ocober (yes – it really was that long ago!) after the biopsy, when it seemed that an enlarged lymph node was affecting the drainage from my right leg. This went after each session of chemo (in November and December) but slowly returned in between the sessions. After the conditioning treatment in hospital the swelling went down overnight, but returned gradually during the day, but this effect seems less pronounced now – so intuitively this would seem to be a positive sign! That said, the ultrasound scans of my kidney and liver didn’t pick up any obviously enlarged lymph nodes… I guess the PET scan will be the definitive test!

But overall I feel in good shape, although I still tire very easily. My appetite is getting better, my digestive system seems to be settling down, the drugs seem to be tolerated, and considering the battering my body has had from the various drugs in the last 4 years, I seem to be in remarkably good shape! So… onwards and upwards!