Peter’s Hospital Diary

Another check up – and 70 days since the transplant!

You may recall the mixed news that I received last week, so it was with a little trepidation that I went for the check-up today. However it turned out to be an interesting day all round, with several things becoming clearer.

The anti-biotics for the folliculitis are doing their job well, and it is now clear that there is a skin rash caused by GvHd, which is a reassuring sign. However during the course of the consultation a new treatment, using the drug thalidomide, was discussed.

Most of you will remember that thalidomide was originally developed in the 1950s to counter morning sickness in the early stages of pregnancy. However it proved to be extremely damaging to the unborn foetus and about 12,000 children with physical deformities were born worldwide, of which about 5,000 are still surviving. Thalidomide use was (not surprisingly) discontinued, but research into the cause of the damage continued, and it as been found to have anti-cancer properties with success in some leukaemias, particularly myelomas. There is some more information here.

Thalidomide isn’t licensed for general use in this country, but it can be prescribed on a ‘named patient’ basis where there may be specific patient benefits; or as part of a trial. Its use is subject to very strict controls, including registration with the manufacturer’s risk management programme, briefings on the risks and dangers to women of child bearing age who may become pregnant, and on other possible side-effects.

So, armed with that information, I dropped off the prescription (which included some topical steroid cream to treat the GvHd rash) at the pharmacy and went off to the bank to get some prescription vouchers! On the way I happened to meet Dr Kazmi, who runs the transplant department, in a corridor. We exchanged the usual pleasantries (Does anyone else find it strange when a doctor asks “How are you?” They probably know better than the patient!) Anyway, to cut a long story short, he noticed the GvHd and wondered if the thalidomide was really necessary as it had only been proposed because at the last check up there was little evidence of the extent of the GvHd. He suggested we met in the haematology outpatients again after I picked up the prescription.

Which I did! We had a long chat about the options, but the summary was that the PET scan is a snapshot and we don’t know in which direction the diease is moving and that two months post transplant was (deliberately) early. So while the GvHd is a good sign, it would be a good idea to let that run to see what happens – if it fizzles out, then I can start the thalidomide. However, I shouldn’t use the creams to treat the GvHd rash yet so we can see how it progresses.

Finally we discussed several other options that can be used to promote or inhibit GvHd. Although the presence of acute (or even a little chronic) GvHd is a major factor in the success of the treatment, management of it is a bit empirical – it mustn’t get out of hand as it can cause liver damage, but it mustn’t be so suppressed that the the Graft v Lymphoma (GvL) effect (which is what we really really want) doesn’t happen.

I suppose all this is really nothing new (apart from the use of thalidomide) – but it was still reassuring.

Meanwhile I have my appointment with the radiotherapist next Wednesday to assess if and how radiotherapy could be performed if needed – it is being prepared as a just-in-case – so if it is needed I am ready to go! My next check up is now in 2 weeks’ time, although I may pop into another clinic at St Thomas’s next Wednesday after the appointment with the radiotherapist.

So all in all, I returned with a bag of drugs that I won’t be using for a while (if at all) but quite heartened by the news. I will also have another PET scan in a couple of weeks to put a ‘second point on the graph’ – now that WILL be nail biting, because that will be an indicator of which way the disease is moving…

But – onwards and upwards… 🙂

Tags: GvHd