Peter’s Hospital Diary

It has been a while since I posted something with the ‘More Treatment’ tag, but today saw me back at St Thomas’s at the St John’s Dermatology clinic (originally founded in 1868 – and the only postgraduate dermatology teaching facility in the country) to look at the remaining GvHd. Now I must say that in the grand scale of things, my GvHd is pretty mild – and certainly nowhere near as bad as fellow blogger John but although the majority of my skin is OK, the mucous membranes are affected, and it does flare up a bit from time to time, hence the referral.

Anyway, after a brief wait I saw the consultant, recounted my history and had an examination. The result is that there are two treatment options. The first is an ointment, Tacrolymus, which I had been prescribed before (for my mouth – but never used) which I can apply to the affected areas. If that doesn’t work, there is another, somewhat more invasive procedure, called photo pheresis. In this procedure, a canula is inserted into my vein and my blood ‘on-line’ centrifuged (a bit like the stem cell collection) and the white cells separated out. They are then treated with a photo-activated drug, then exposed to UV radiation to activate the drug, and then returned to my body. This occurs twice in two successive days, either monthly or fortnightly for up to 12 months! Hmmm! My concern is that while the GvHd is present, it shows that my immune system is fighting, but if you damp it down, does that increase the risk of the lymphoma returning? The answer was “no – there no evidence from studies to show that patients having this treatment are more likely to relapse than those that don’t”. Anyway, I don’t need to make a decision yet, and the ointment might do the trick.

As you might have guessed, I have done a little research since I came home and this link gives a little more information about GvHd and is part of a site that describes photopheresis. This link describes the photophoresis procedure.

After seeing the unit, and the obligatory wait at the hospital pharmacy, I am pleased to say that my train journey home was a lot less eventful than the last time!

Onwards and Upwards!

Tags: GvHd