Do I need ECP?

For the last six weeks, the question of whether I need Extracorporeal Photopheresis (ECP) has been discussed at several of my hospital appointments, and, in that time, four different doctors have offered one-of-three different opinions: Two doctors thought yes, one thought it was worth having one last attempt at tapering-off the steroids (now that I'm also on Ciclosporin), and one thought that the other opinions are perfectly valid and I should just pick one, i.e. sat on the fence. In other words, after speaking to those in the know, the only thing that was actually clear was that it's not really clear at all.

So, what did I do? I hear you say. Well, two weeks after being referred for ECP, the doctor that I saw on the 23rd of July (day +173) decided to try reducing my steroid (Prednisolone) dose from 30mg/day to 20mg/day, whilst I waited for my appointment to discuss ECP with the team in Rotherham a week later; I think we both suspected that I'd get away with that dose of Prednisolone, now that I was also on Ciclosporin, and I was happy to give it a try, as I didn't want to be taking any more than necessary.

Note: On the same day, a CT scan was arranged for the 29th of July (day +179) to ensure that everything was still fine from a Hodgkin's Lymphoma perspective, and I found out that the latest skin biopsy was also inconclusive about the presence of GVHD; It would have been nice if the skin biopsy had confirmed GVHD, but it didn't matter, as there wasn't really any doubt about it. (I'd also had another chimerism test, two weeks prior, when I had the skin biopsy, and that showed I was still 98% donor.)

After a week on the reduced steroid dose, my skin wasn't any worse (it was still quite dry in places though) and it was time to see the ECP team in Rotherham. The doctor and nurses that I saw in Rotherham explained a bit about the treatment, showed me around the facilities, asked about my medical history, examined my skin, and took yet more blood samples; I'm sometimes surprised that there's any blood left to take!

Note: I was a bit disappointed that I didn't learn more about the treatment etc when visiting the ECP team in Rotherham, but now that I think about it I had already read quite a lot about it on the Internet, so realistically there wasn't that much left to add.

After meeting the ECP team in Rotherham, I realised that they were hoping I'd let them know within a couple of days or so whether I wanted to start the treatment or not, but I explained that I'd just had a CT scan (the day previously) and thought it would be best to discuss the results of that at my next appointment in Sheffield a week later, i.e. the 6th of August (day +187), before making any decisions about having ECP.

A week later, I discussed my latest CT scan results with a doctor in Sheffield, and it seemed that there was some concern about them, as they highlighted a mass in my chest that measured roughly 7cm by 5cm by 2cm, which is obviously a reasonable size, hence I maybe needed a PET-CT scan to see whether that mass was active disease or just scar tissue. I say "maybe", as because all of my prior scans had been done at another hospital, which this hospital couldn't access without first requesting them, it wasn't really possible to interpret the latest CT scan results, as they couldn't compare them with that of my prior scans. Fortunately, two days later, once the prior scans were available, I learnt that my latest CT scan was actually an improvement.

The doctor with which I initially discussed the latest CT scan results was also the same doctor that was in favour of having one last attempt at tapering-off the steroids, hence it's perhaps no surprise that I took that path in the end; If the disease had been active, then reducing the immune suppression would have given the immune system a better chance at fighting it. The plan was to drop the steroid dose down to 10mg/day for five days and then to stop it altogether, as long as everything went smoothly.

Fortunately, it seems that being on the Ciclosporin has meant that stopping the steroids hasn't resulted in the skin GVHD flaring-up to the same extent as previously. My skin has become quite dry and slightly red again in numerous places, and there are some patches that feel a bit burnt, but it's not too bad so far. Below, you can see a photo (click to view full size) of one of my hands before (on the left) and after (on the right) taking a shower; They give an idea of how the heat affects the skin GVHD.

For the time being, with the skin GVHD being how it is, I can continue without any steroids, but need to stay on the same dose of Ciclosporin, until my next appointment in Sheffield on the 3rd of September (day +215) when it will be reviewed. Thankfully, perhaps due to stopping the steroids, I seem to be pretty much symptom free of the two viral infections that I've been battling with in recent months, even though the latest mouth swabs on the 15th and 29th of July (days +165 and +179) were still positive.

Note: I was admitted to my local hospital on the 14th of August (day +195), due to waking-up with quite bad pain in my knees (I could hardly walk) and a high temperature (38.3°C), but bizarrely those symptoms disappeared (without any medications) quite quickly; i.e. in the hour or so that it took to organise everything and get to the hospital, everything was back to normal. I was discharged a little over twenty-four hours later, after various blood tests etc had failed to highlight anything of any real concern.