Friday, 25 October 2013

Is the ECP treatment starting to work?

I've had both the third and fourth ECP treatments now, but it's still a bit too soon to say whether it's really working. Having said that, despite my steroid (Prednisolone) dose being reduced from 20mg/day to 15mg/day (a week before the third ECP treatment), and it then being further reduced to alternating between 10mg/day and 15mg/day (on the second day of the fourth ECP treatment), I'm yet to encounter a dramatic flare-up of the skin GVHD. It is early days though, as it was only yesterday that I finished the fourth ECP treatment, and started on effectively a 12.5mg/day steroid dose.

The third and fourth ECP treatments went fine really, except that the machines played-up a bit, which meant that I was connected-up for a bit longer than would have otherwise been necessary. Specifically: on the second day of my third ECP treatment, the machine kept alarming about the system pressure when trying to filter-out my white blood cells, and, after it had alarmed about six times, the nurse decided to start again, which meant everything that had been collected needed to be returned to me, and a new kit had to be put on the machine; and, on the first and second days of the fourth ECP treatment, the machine kept alarming about low air flow (every fifteen seconds) when zapping my white blood cells with UVA light, which meant the nurse had to effectively keep pressing the continue button until it eventually finished.

You can see most of what constitutes a kit (the bowl and tubing etc) in the photo on the left below. The kits cost between £500 and £700 each, and Rotherham use up to about ten per day, i.e. one for each of the eight patients they treat, plus the odd one or two extras when issues are encountered. I took that photo towards the end of the first day of my third ECP treatment, whilst my blood was being returned to me, i.e. after my white blood cells had been filtered-out, sensitised with UVADEX, and zapped with UVA light. A close-up of the touchscreen is shown in the photo on the right, which was taken on the second day of my fourth ECP treatment, whilst the machine was about halfway through filtering-out my white blood cells. Despite my attempts to avoid being in that photo, you can see my hands, mobile, and bald head in the reflection on the touchscreen - You may need to click on it to view the full size version though!

Therakos CELLEX Machine
Therakos CELLEX Touchscreen

I've still not really noticed any significant side effects from the ECP treatment, but I do get the impression that it leaves me feeling a bit more tired than usual, particularly on the second day, and that I would have to be more careful about exposure to sunlight, if it was actually sunny in the UK; The weather has been slightly brighter on a couple of occasions when I've had the ECP treatment, and after the drive home I did feel like I had burnt ever so slightly, despite having used factor thirty suncream.

The tiredness and sensitivity to sunlight may have seemed a bit more significant as time has progressed, but I've gradually become less strict with the low-fat diet immediately prior to each ECP treatment, and doing so doesn't seem to have made any difference to the ease by which the ECP machine works its magic. One of the nurses did say that whilst generally speaking the low-fat diet can be helpful, some patients seem to be able to eat whatever they like without it causing a problem, and other patients have problems even when following a strict low-fat diet, hence, as with most medical treatments, experiences do vary from one patient to the next.

ECP treatments aside, you may remember that immediately prior to my third, I needed to have a lung function test, in order to establish a new baseline and enable my progress to be monitored. I've had a few lung function tests in the past, and this one was no different; It simply involved following some basic instructions to breath in and out through a mouthpiece in a variety of ways, e.g. sharp breaths in/out, holding my breath and breathing normally, so that measurements such as my lung capacity could be determined. The only thing that I did find slightly amusing about the process was that the last test simply involved breathing in and out normally for about five minutes, during which time the operator of the lung function test machine kept repeating over and over: "You're doing really, really well". It was no doubt just something to say to fill the kind of awkward silence, but even so it's strange being congratulated for managing to breath in and out normally. After all, I've had thirty two years or so practise now!

Finally, if you've read my earlier posts on the ECP treatment, you're now no doubt on the edge of your seat waiting to find out whether I broke my record on the walking test, so I won't make you wait any longer... drum roll, please... my personal best is now two hundred and twenty metres! That new record was from my third ECP treatment; I just didn't quite manage to match it with my fourth ECP treatment, and I was left slightly more out-of-breath; However, there's likely a good reason for that, but you will have to wait until my next blog post to find out why, as this one is long enough already!

Monday, 7 October 2013

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.