Photopheresis: What is it?

February 11, 2014 — 15 Comments

I realise I mention it a lot and most of you are aware of it as a treatment that I have, but very few of you really know what it actually is.

Since March 2010, I have been travelling back and forth to Rotherham every fortnight (then every three weeks, then four weeks). It was mainly to treat the GvHD in my skin, with hope that it would help with my lungs but there wasn’t a massive amount of evidence for that at the time. We went to Rotherham because that is where they are the experts in this country, and we didn’t have the facilities in Birmingham. We do now, and I have transferred to the QE team. I was having the treatment using the central line I used to have in my chest, but last year, the line started misbehaving and acting like a blood clot, then it cracked, and it was decided that in August it would come out, and I’d have my remaining photopheresis sessions using my arm veins, as I only had about five left that were to be spread over eight months or so.

However, in September, my liver started playing up and I got stuck in hospital and was incapable of getting to Rotherham for treatment. The plan then became to transfer my funding and have me carry on at the QE, but it just sort of fell by the wayside and I didn’t have any treatment until I brought it up with Ram at clinic and he got it sorted for January this year. I had my first treatment, then we went back for my second one a couple of weeks ago and the nurse I had just annihilated my veins, so they’re putting another central line in on Thursday. Had the GvHD not flared up in my mouth in November, I wouldn’t have had to go back on steroids, and I probably wouldn’t have had to restart this, but here we are.

Here is some information about photopheresis:

The patient is attached to a machine using either their central line or a vein. About a pint of their blood is drawn off and centrifuged. The red cells and some of the plasma not needed is immediately returned to the patient, and the leukocytes and plasma required are isolated for further treatment. Once the leukocyte-enriched blood is collected, a drug called Uvadex is added to make the T-Lymphocytes more sensitive to UV light and therefore promote the death of diseased cells. When the Uvadex is photoactivated (all this happens within the machine), it binds with the DNA of the cells to prevent further replications, leading to loss of cell viability over several days. The damaged cells are then returned to the patient, which is thought to generate an increase in immune system activity, thus encouraging the production of healthy lymphocytes.

So that’s it, really. Two days attached to a machine (although with a line, it’s about two/two and a half hours max) where they do fancy things to my blood. Still don’t know how the Uvadex works but it does. My skin is grand. I’m nearly off the steroids again. It doesn’t hurt, it doesn’t make me tired; it’s really very dull. But that’s what it is.

legs

That’s why I needed it.

IMG_4441

That’s a machine.

line

That’s my last line. R.I.P.

 

15 responses to Photopheresis: What is it?

  1. 

    I think this is a fascinating treatment. I strongly believe that one of the best hopes of successfully treating cancers is to find a way to help the body’s own immune system to attack it. I think photophoresis demonstrates the potential of that.

    • 

      It’s not treating cancer, it’s treating graft vs host disease which is a side effect of a stem cell transplant.

      • 

        Sorry, I think I understand how it’s helping you but what I was trying to say was that the theory, i.e. stimulating the body’s own immune system to help fight disease, could also be used to treat cancer in the future.

  2. 

    Your machine looks exactly the same as mine. LOL! I’m at Nottingham, but patients here used to have to go to Rotherham too. They’ve had ECP machines here for about two years.

    I was using a needle for the first four sessions then the vein/needle combo stopped playing ball, so I now have a central line, as of last Thursday. Still settling in and quite bruised, but it is SO much quicker with the line and I can move my hand/arm, so FB and blogging can continue. 😊

    As for the Uvadex, I understand that it comes from a plant that grows in the Nile Delta and they discovered its UV-attaching properties when people who’d been in the area started suffering with sunburn and eye problems after contact with it. I love that ‘they’ have found a way to turn something dangerous into something really valuable.

    • 

      I think there’s only Therakos that make them! I remember the machines before Cellex and they were so slow! It is so much better having both hands free; I did feel so sorry for people having to use their veins. I love the Nile story – I tell people and they are just a bit flabbergasted haha x

  3. 

    I am also 23 and having photopheresis for gvhd from a stem cell transplant! just discovered your blog. I hate central lines! my last one just fell out a few weeks ago, oops. Hope you’re doing as well as possible xx

    • 

      Ah, a kindred spirit! I love central lines. This is my fourth and it is saving my veins from more torture. It’s pretty uncomfortable right now but I am hoping I will be less achy tomorrow. I hope you’re doing okay too, GvHD sucks xx

      • 

        I can’t say I love my line, but I definitely don’t hate it. I think I appreciate it and like you, Kathryn, am glad it’s easier on my veins and allows for quicker ECP treatments. Mine is just one week in, so like you still settling. Having it inserted under sedation was the best thing ever. My previous Hickman and PICC lines were just done with local anaesthetic, which really was not fun at all. Sedation rules!

      • 

        Yeah I was sort of half-sedated today – bit woozy but aware. Not fun. I can’t be fully sedated – my body just doesn’t agree with it, which we learned the hard way when I woke up mid-procedure!

      • 

        OMG! How awful. I’m the other way, I respond so well, I’m so sensitive to any anaesthesia, that I know absolutely nothing about it. I may as well be under GA. Hurray! Did you see my comment in the About section? I’d like to have contact with you in private about your experiences.

      • 

        Proper GA is okay, but when I was sedated for an endoscopy to sort out my biliary stones, I woke up and I just remember being held down and people saying “it’s okay Kathryn it’s okay” and then I was asleep again. I hadn’t actually seen that comment so thank you for pointing it out or I would have missed it completely – could you email me (emptybatteries@hotmail.co.uk) and I shall happily chat away 🙂 x

      • 

        I emailed you. Did you get it?

      • 

        Yes sorry I’ve just been massively busy for the past two days and haven’t had time to reply – it’s on the agenda for today!

  4. 

    ah only just seen your reply! yes i hate having my veins spiked (apparently mine ‘dance’) and it usually takes several attempts, but the daily annoyance of living with a hickman, and having to cover it even in the shower was driving me insane. For some reason they’d sewn my second one really far to the right, such a pain. I really wish we could have PICC lines for the treatment! they’re quite low-maintenance compared to hickmans. (Hickmen?!) How have you found it so far in terms of helping with skin problems, have you seen much improvement?

    • 

      Mine are just really small and buried and go in awkward directions! My last Hickman was ace – once the scab healed, I didn’t have to cover it for most of the 3 1/2 years I had it in for. I’ve heard PICCs are harder because they block a lot more easily. Most people were surprised I kept one going for four months! In terms of my skin, ECP has been a massive help! At the beginning I had loads of blisters, it tore all the time and it was so sore, but it’s absolutely fine now – it’s still dry but a million times better. I fell down right at the beginning and just tore my leg open – it took a year of working with a plastics team to get it to heal but now if I fall I just bruise. You’ll see such a difference, I swear.

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