Peter’s Hospital Diary

And indeed it was a well worn trail back up to the Day Unit at Guy’s! However, it is always good to see Orla and her team (Sharia, Emma, Clare, Jayne – and I’m sure I have missed someone out…) even if the circumstances are perhaps not ideal.

So after giving the customary two or three test tubes of blood, I settled down to do the crosswords, Suduko etc while waiting for the meetings and ward rounds to finish – which they eventually did and today I saw Dr Kazmi (The Head of Department) for our discussions.

The gist of this is that encouraging another outbreak of GvHd to stimulate the GvL effect remains the best chance of a cure, given that I had a good response last time, and of course this process has already started with the first dose of donor lymphocytes on September 22nd. He did remark that the GvHd last time was a little late starting, possibly because my donor is such a good match, and that (with the benefit of that wonderful thing, hindsight) it was a pity that it fizzled out just a bit too soon! Perhaps this time we wil get a stronger reaction that lasts longer to zap the last of the rogue cells.

Meanwhile there is the fact that the lymphoma will be advancing – the nodes in my neck do feel a little larger, and there is a risk that the enlarged nodes may obstruct my throat. While steroids would probably reduce the swelling, they would also damp down the GvHd (which we don’t want) so as a standby I have a box of Thalidomide ‘just in case’. This was not unexpected, and I have mentioned Thalidomide in the last two or three posts.

I posted a link about Thalidomide on the right, but basically it is an immune system modulator. Not something one takes lightly, but a useful stand-by. We did discuss other drug therapies, and the possibility of local radiotherapy, and he will discuss that with the radiologists (who will no doubt be itching to get the ray gun out!). Regardless of that, my next appointment is on the 19th, when we will look at the second Donor Lymphocyte Infusion (DLI).

Thalidomide still has its sinister reputation from when it was prescribed as a treatment for morning sickness, with the subsequent tragic consequences, and it is still prescribed on a named patient basis only. As part of the process I had to take part in a telephone survey to ensure that I understood the conditions of prescription – no donating of blood (not that any blood bank would go near my blood!) or sperm (after that dose of radiation 2 years ago – get out of here!!!) and … no – too much information…!

This all sounds very familiar, in fact I could use the ‘Prime Ministers Question Time” technique of “I refer the reader to my posts of March, April and May” – but I won’t – after all, what would I have to write about? 🙂

After leaving the day unit I called in at the stem cell laboratory to see Tammy and Justine, and met a new trainee, Bryony. We had a look at the calendar (which is how I know it was September 22nd when I had the first DLI) and in fact the 19th is 29 days further on from the first dose – pretty much optimal time for the second dose, so depending on the appearance (or not) of GvHd, I will probably have the second dose then.

On other fronts, the events of Friday went as well as these things do. The Service of Committal in the Crematorium in the morning was not as distressing as it might have been, and the memorial service, followed by the interrment of the ashes was a clebration of my Father-in-law’s life, although not without its emotional moments. It is at times like this that one is confronted with one’s own mortality, and John (John’s blog – 1 October) wrote a very good article about this a week or so ago. All I can say about the day is that if my F-i-L had been with us physically (as well as spritually) I think he would have approved and enjoyed the day – after all, he did plan it, even down to who was do the readings, who was carrying the flowers etc, so that all his family had a part to play.

So on that note, I will close, but with a definite and positive…

“Onwards and Upwards”