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ECP treatment..how effective is it? Is it worth trying?

I'm now over 2 years post transplant and have chronic and acute gvhd of the skin mouth and ****. Am on tons of immunosuppressive drugs and 15mg predicted at the moment. I desperately want this to end so I can stop the drugs...It seems a huge and lengthy process..was it worth it? Did it work? How bad was it?
Thank you

Best Answers

  • Accepted Answer
    Hi Mandimoo0,
    I'm so sorry you're still suffering so badly from gvhd. It sounds rotten. I don't have personal experience of photophoresis but I'm sure lots of others will have. Where could it be done in relation to where you live? There is an ECP unit in Rotherham, my local hospital where I was originally treated for lymphoma, and a few patients I've spoken to in waiting rooms in Sheffield have found it a good experience despite the travel involved.

    Please keep us in touch and do keep on using these boards for support.
    Sue

    Unknown
  • Accepted Answer
    Hi Mandimoo,

    I had ECP for skin GvHD and I have to say in my case it was very effective. It is a long process I'm afraid and it's a big commitment both for yourself in terms of time, and the hospital in terms of funding but the benefits make it worthwhile if it works (which it might not for everybody).

    I had ECP over a period of nearly two years, starting initially with fortnightly sessions which went on for about 4 months and these then reduced to monthly for perhaps another 6 months, then 3 monthly, and eventually the last cycle was a 6 month gap. In all I had about 24 cycles of treatment and each cycle consisted of 2 sessions lasting a couple of hours per session. These sessions are done on consecutive days, so I arranged to stay in the patient hotel at Nottingham City Hospital overnight and had the first session late in the afternoon of the first day and early morning on the second.

    The process involves being hooked up to a machine, probably similar to a stem cell collection machine with blood being taken in stages for processing. This goes into a centrifuge to separate the problematic T-Cells and the remaining blood is put back into the body. The 'buffy coat' as the collected cells are called is then given a dose of photosensitive chemical and exposed to UV light before being pumped back into the bloodstream.

    As I understand it the process kills off the T-Cells that cause GvHD so over the course of the treatment there are fewer and fewer in the blood stream and eventually this stops the GvHD.

    It is not a painful process and is more inconvenient than anything as you are attached to a machine for a couple of hours and unable to move. I usually had a kip or watched a video or listened to music to occupy my time.

    It is an expensive treatment. From what I understand the disposable kits that go on the machines for each session with all the tubes and centrifuge bowl are £500 each so each cycle is £1000 in the kits alone, not including the cost of the medical staff, machinery and hospital overheads. I also understand that the results can vary from patient to patient and it doesn't suit everybody.

    Has ECP been talked about by your medical team? There aren't many centres that do the treatment so I guess another factor will be your proximity to one that does.

    I hope this helps.

    Steve
  • Accepted Answer
    You're welcome. Two years sounds like a long time to still be on steroids and immuno-suppression so I would have thought it was in yours and your medical teams interests to try and get you off them.

    As far as side effects are concerned I didn't experience any personally, though I don't believe there are any serious side effects. The main issues following treatment are that the machine uses anticoagulant to stop the blood clotting in the machine which then goes back into the blood system, so there is a risk of prolonged bleeds.

    The other factor is that because the treatment uses a UV sensitive chemical which also then ends up back in the blood system, you become extra sensitive to sunlight. This just means taking precautions like avoiding strong sunlight or making sure your skin and eyes are protected, i.e. long sleeves and trousers, a hat and sunglasses for 48 hours afterwards whilst outside.

    I didn't find the treatment bad at all so I would say it is not something you need to worry about if you do go down that route. At the end of the day it has a chance of improving and possibly restoring your quality of life, so for the sake of some time given up to have the treatment it is worthwhile.

    All the best,

    Steve

Answers

  • Thank you Steve that's really helpful..I don't think I can carry on on all these steroids and drugs forever..I think I will give it a try. My neatest hospital for ecp is guys.
    Are there any side effects that I should worry about?
    Thank you again very good to know it worked for you..gives me hope!
  • Thank you Steve that is very reassuring and I'm definitely going to go for it! I had been with one consultant for ages and he never once mentioned the treatment...I moved to a new one and it was the first thing he said to me!!!
    Anyway..I'm thankful for your response I'm feeling much more positive about it now
  • Hi Mandimoo,

    Thanks for posting on the forum, I am the nurse specialist on the patient experience team. I am sorry that you are having such a difficult time, it can be very frustrating for people in your position as you want to move forward with your life but the chronic GvHD and all the medications are preventing you.
    I am not sure I can add too much really as Steve has given good advice. Its good that you now have a consultant that will refer you for ECP and Guy's is an excellent centre for this treatment. I have patients that receive ECP and go to Guy's, the treatment is a commitment from you and on top of the last 2 years this might feel daunting, but the results I have seen are very good and there are very little side effects.

    Steve is a great example of someone who was in your position but has now moved forward and has a good quality of life, so this should give you confidence that it will get better and that it has al been worth it.

    Keep us updated

    Best wishes
    Hayley
  • Thank you hauled
    I do feel less daunted by the prospect of ecp thanks to Steve. .and I am going to look into committing in the new year..I can't wait to get off these meds and get a normal life back!
    Am now filled with hope and am feeling positive towards the treatment.
    Thanks for all your support
    Amanda
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