Was the second ECP treatment any different to the first?

It was the 24th of September (day +236) when I started on my second ECP treatment, and, just like with the first, it all went smoothly and has been free of any noticeable side effects. It is possible that I was more sensitive to sunlight for a short while, but it's hard to say really, as I followed the advice about the use of high-factor suncream and UVA protecting sunglasses etc, hence it may well be that doing so is what prevented any issues. Of course, the weather in the UK might have something to do with it too!

On the first day of the second ECP treatment, I did have to wait for about an hour and a half before I could get hooked-up to an ECP machine, as for some reason they were all in use upon my arrival, so that meant I had plenty of time to do the walking test. The result of the walking test, given the various factors that likely affected my performance previously, was hardly surprising: a new personal best (albeit well below the record).

I walked about one hundred and eighty metres in the two minutes allocated for the walking test, which was roughly thirty metres further than the previous time. That's probably still a bit on the low side, to be honest, as one of the doctors mentioned that the idea is to walk as quickly as you can, without getting out-of-breath, otherwise you might not notice any difference in your capabilities; I never did that on either occasion really, so I expect I will be setting my new personal best tomorrow (day +250) when I start my third ECP treatment. Whilst discussing the walking test with the same doctor, I also found out that part of the reason for doing it is that the steroids I take can cause muscle weakness in the arms and legs, hence it can be used to monitor for the latter.

The actual treatment itself took about two hours on both days, which was about thirty minutes longer than with the first ECP treatment, but that was because my hickman line wasn't allowing the ECP machine to draw my blood quite as quickly; Hickman lines are great for gaining access to the bloodstream, especially for patients like myself whose veins are hard to find, but they do vary in performance on occasion, hence it was just one of those things, and made no real difference to me really.

One of the doctors did explain that, with it only being my second ECP treatment, the doses of the medications (Prednisolone and Ciclosporin) being used to suppress my immune system would remain as they were for the time being, but that they may be reduced when I start my third ECP treatment, as by then it is hoped that it has had sufficient time to start to work. However, the day after my second ECP treatment, I was instructed to reduce my Ciclosporin dose from 75mg twice daily to 50mg twice daily, as a blood test had shown that the levels in my bloodstream were too high.

I did wonder whether the reduction in my Ciclosporin dose might have resulted in my blood pressure returning to normal, as it had been quite high (for me at least) for about a month, but when it was checked at my monthly check-up in Sheffield, after nearly a week on the lower Ciclosporin dose, it was actually slightly higher. When I asked the doctor about it, I was informed that the combination of the two medications used to suppress my immune system was almost certainly the cause, and that I could add Amlodipine to my daily medications (for the time being) to address the issue.

The doctor in Sheffield also decided to reduce my Prednisolone dose from 20mg/day to 15mg/day, partly due to my blood pressure, but also because, with my skin showing no real signs of GVHD (except perhaps on my feet), there was always the possibility that the immune suppression was not only preventing a flare-up of the skin GVHD but also giving any remaining Hodgkin's Lymphoma an unhindered opportunity to grow.

The reduction in the Ciclosporin and Prednisolone doses has resulted in the skin GVHD becoming slightly more noticeable, but only for a short period after getting a hot shower. In fact, now that I think about it, I can't say that I noticed any difference when the Ciclosporin alone was reduced, so it may be that it was reducing the Prednisolone that proved significant. Having said that, my Magnesium, Potassium and Calcium levels have improved since reducing the Ciclosporin; They had all been slightly low.