Saturday 21 September 2013

What was the first ECP treatment like?

In my previous post, you may have noticed that I sneakily slipped-in the news that my skin GVHD does need treating with ECP, after all. Therefore, it probably comes as no great surprise that, after stopping the steroids, my skin GVHD continued to gradually get worse, particularly on my lower legs and feet. I did manage two weeks and two days without any steroids though, before the skin GVHD flared-up too much; That was about a week or two longer than previously, so being on another immune suppressant (Ciclosporin) did seem to make some difference - Unfortunately, it just wasn't enough.

Note: You may remember that the plan had been to review my skin GVHD at a check-up on the 3rd of September (day +215), but it was actually a week earlier, whilst having my monthly dose of Pentamidine, when I was put back on the steroids (20mg/day of Prednisolone) and arrangements were made to start ECP, as when a doctor had a look at how the rash was progressing, whilst prescribing me some more cream, it was clear that the general feeling was that Ciclosporin alone wasn't going to be enough, as the rash on my lower legs and feet was now looking too severe.

By the time that the check-up on the 3rd of September (day +215) did come around, the steroids had once again got the skin GVHD under control, and the rash had mostly disappeared. It was definitely nice to be heading in the right direction again, as, even though it was more of an inconvenience than anything else, the skin around my eyes and mouth had been getting really dry, and despite the use of various creams had still been occasionally cracking and bleeding, so sometimes looked and felt a bit sore.


Before I could start the ECP treatment, I needed two units of red blood cells, as the blood tests that I had a week in advance showed that my hemaglobin levels were only just above the minimum required, hence it was better to have a transfusion than to find my hemaglobin levels were too low on the day. That did mean spending seven hours a few days before the ECP treatment getting topped-up, as well as having a blood test the day prior, so that the right blood type could be ordered, but that was all organised to take place at my local hospital, so at least I didn't have to travel far (for a change).

Once topped-up with red blood cells, all that left, in terms of preparing for the ECP treatment, was following the recommendations about what to eat and drink in the two days prior, and ensuring I could protect myself from sunlight in the day following. The latter was easy, as it just meant buying some high-factor suncream and wrap-around sunglasses, but the former proved trickier than I first imagined, as it turned-out that pretty much everything I normally eat included something that I was supposed to avoid. In fact, it was looking like I might achieve the low-fat requirement more by starvation than anything else. Having said that, I wasn't suppose to skip any meals!


On the 10th of September (day +222), after all of the uncertainty around whether I really needed ECP or not, I finally started the first treatment. As you may remember, each treatment is split over two days, where each day you go through exactly the same process. The process was pretty simple for me really, as once I was connected up to the ECP machine, using the two connectors on my hickman line, all I had to do was sit there for ninety minutes or so, whilst my white blood cells were filtered off, sensitised with UVADEX, zapped with UVA light, and returned back to me. If it wasn't for the noisy ECP machines, and the elaborate arrangement of tubing carrying my blood back and forth, I would have never even known anything was happening!

The first day of the ECP treatment was slightly more involved than the second day, as, to enable the tracking of progress over the coming months and to check that it's okay to proceed with the two days of ECP treatment, it's necessary to do some additional testing. There's no prize for guessing that is mostly achieved with blood tests, but it also includes a walking test, which simply involves seeing how far the patient can walk in two minutes. The rationale for the walking test is that skin GVHD can sometimes result in restricted movement (some patients receiving ECP also find themselves much more easily out-of-breath due to their underlying health condition), hence monitoring for changes in the distance walked can be used to track progress.

Note: Due to only just starting ECP treatment, on the first day, one of the doctors needed to go through the consent process with me, which was largely just a box ticking exercise, and the ECP research team wanted the opportunity to briefly explain the work that they're doing, in the hope that I would be willing to provide regular blood samples to help with enhancing the understanding of how the treatment works, and by doing so potentially enable improvements to be made in the future. Over the last four years or so, I've been asked on a few occasions about doing this kind of thing, and have always done so (without hesitation), as it seems like the least I can do really.

Walking Test

For my first walking test, a nurse walked with me to show me exactly what route to take. The idea being that in future I could go by myself and simply describe to a nurse where I was when the two minute timer ran out; The nurse could then easily determine the distance, due to knowing the route all too well. For the record, I walked about one hundred and fifty metres, which works out at a little under three miles per hour. (It would seem from a quick google that I should walk about half a mile per hour faster!)

For various reasons, I couldn't help but wonder how meaningful the walking test will prove to be, as there are likely several things that influence how far someone walks, irrespective of whether the ECP treatment is working. On my first walking test: I hesitated a few times due to not really knowing where I was going, the nurse likely influenced what pace I walked (despite trying not to do so), and an ingrowing toenail meant that walking was a bit uncomfy for me. In future, the walking test will perhaps feel like a challenge too, i.e. there will be an element of wanting to set a new record. In other words, I'm not convinced that it will mean all that much, in my case at least, but then again maybe I'm guilty of assuming that the ECP treatment is going to work.

Medical Illustration

Walking test aside, there are also a couple of other methods used to track progress: lung function tests, and photos. My first lung function test is currently scheduled for the same day that I start the third ECP treatment; It would have coincided with the second ECP treatment, but the necessary staff are busy training on that day. However, my first set of photos could be taken straight away, hence, after the ECP treatment on the first day, I was guided to the medical illustration department for my first photo shoot!

Photo shoot proved to be a more accurate choice of phrase than perhaps any of us would like, as I had to strip-down to my boxer shorts, and do various poses, so that photos of my skin from head to toe (front and back) could be taken - It was even necessary to take some of the inside of my mouth, and, at one point, I also had to lower my boxer shorts for an ass shot! You'll be glad to hear, I won't be breaking into the glamour industry any time soon though! However, it is possible that one of more of those photos (with my consent) could end-up in a medical publication one day, so consider yourself forewarned! For now, lets just hope the NHS store them in a secure location; one where only my doctor is unfortunate enough to have to look!

One thing that does strike me about skin GVHD is that if you are quite self-conscious about your appearance, then you are pretty much doomed really: Putting aside that the skin GVHD itself makes your skin dry, red and flaky, the first line treatment is high-dose steroids, which comes with the side effects of weight gain and moon face, and if you then need ECP treatment too, you also get to look white from high-factor suncream and ridiculous wearing sunglasses when there's no sun in sight! Plus, if that wasn't enough, the medical illustration department are there to capture almost every inch! Speaking of moon faces, looking ridiculous wearing sunglasses, this one is mine:


Side Effects

Once the medical illustration department had done their part, I could finally find out how much the ECP treatment increased my sensitivity to sunlight, as I was free to go home. With the way that the increased sensitivity had been described to me, I wasn't quite sure what to expect really. Would it make me burst into flames, like something out of a vampire movie? Does it not make any noticeable difference really? Would I feel an uncomfortable tingling sensation, like I sometimes have previously? Well, I never noticed any difference. I made my way to the car, where I'd left the suncream and sunglasses, put them on, just in case it was a gradual thing, and that was that.

I was reminded that the ECP treatment might make me feel tired, and I was also aware that I might develop a mild fever, or notice my skin get slightly redder and/or itchier, but I can't say that I could attribute anything to the ECP treatment in the end. I did perhaps feel a bit tired, more so on the second day than the first, but that could easily be because I had an early appointment on the second day, hence I had to set my alarm to go off pretty early, in order to make it to my appointment on time.


  1. Hey James,

    Nat here. Interesting to read about your treatment, I wish I had been offered this... That said, my skin GVHD manifested in a fairly violent and fast hardening, like sclerosis, rather than a rash. This makes me think that perhaps your skin may respond well in the long run... I don't know why though. Instinct maybe.

    How are you feeling now? How long until the next treatment and how many do they expect you to need? Apologies if you've written this somewhere before, I am still making my way through your previous posts.

    You are unfortunately correct, you can't be vain while being treated for skin GVHD, moon face especially is hard to take. But you know what your face looks like, and one thing I can personally promise you is that everything will return to normal once the GVHD becomes quiescent and the steroid dose is reduced. Though you seem much more level headed about it than I was. As a 24 year old girl I found moon face pretty hard to deal with! Vanity indeed!

    Look forward to your next post.


    1. The treatment schedule is described in the "What is involved?" section of the What is Extracorporeal Photopheresis (ECP)? post.

  2. James-thank you so much for continuing to share your experience. It truly is amazing and I know hard work to do that and it is very much appreciated. I always find it such an interesting read and of course since my son can develop gvhd of the skin again at any time your blog is a wealth of information.