ECP started at Guys London

Hi all, I wondered if there are any others currently/recently who are having ECP treatment? I just replied to an old post from 2022 which may not be read so thought I would start a new post for any advice/tips.

I am having my 6th session (2 consecutive days) and review next week Tues 19th, it’s been tough as I live in Hertfordshire so staying overnight at St Thomas’s in between as commuting daily would be too much as the high dose steroids I’m on to combat the chronic skin Graft-versus-host-disease have given me myopathy so can barely walk!! Eyes are definitely effected after treatment and I’m definitely wiped out day 3 so realise I need lots of rest and for a few days after too.

Any guidance during this time would be really appreciated!!



Hi Meena,
Thank you so much for taking time to get in touch and sharing this will us all. I hope you receive some support from others going through similar either in the last or current post.
It sounds like you have been through so much already and I’m sorry to hear that your side effects of ECP have been incredibly difficult for you.

Can i ask do you have much support from your nursing/clinical team to be able to update about your symptoms and side effects?

I also wondered if you have ever been offered any psychological support as we know what you are going through right now must be particularly challenging both physically & mentally?

In case it is something you have not yet came across yet, I wanted to link to some work Anthony Nolan has produced including [a blog]( What’s it like having Extracorporeal Photopheresis (ECP) for GvHD? | Anthony Nolan) and their [family & patients forum](Patients & Families Forum | Anthony Nolan) which may also be an avenue of support for you.

As always we are very much at the end of the phone for you Meena should you need to talk things through with us- 0808 2080 888.

Take good care, Lauran


Hi @Meena yes, have have seen your other post.
It really sounds as if you are going through a rough time just now.
Medically, emotionally, psychologically, physically and practically, let alone a lonely.time
Sending you best wishes and yes, rest and look after yourself.
Please do keep posting

Hi Meena,
I too am having ECPat Southampton General Hospital. I have been undergoing this treatment since last August to keep Sezary Syndrome symptoms in check.
The treatment, like yours, is two consecutive days every fortnight. I find that the treatment does make me feel exhausted afterwards, so much so that we find it easier to stay overnight on the Thursday after treatment, in readiness for the next session on the Friday……we then travel back to the IOW after it is completed. Saturdays are always very inactive, but there is also a strange sense of euphoria in the knowledge that we don’t have to go over to Southampton for another two weeks!…does that sound odd???
I have a Hickman line in so it does mean that I have to attend our local Chemo Unit on the island in the following week on a Friday to get the lines flushed.
I have very mixed feelings about the Hickman line….the advantage is that I get “ plumbed” into the ECP machine very quickly….disadvantages are that it makes swimming impossible and bath time quite restricting as the lines can’t get wet.
I think after having had this treatment for such a long time, I am becoming resigned to it all……
As regards eyesight….i do find that my eyes are very light sensitive now. I wear sunglasses immediately post treatment if it is bright, for a day or two but I also find it helps if I just shade my eyes with a peaked cap…not very elegant but it does ease the glare!!!
My skin does feel very dry, I use epiderm which really does help to combat the dryness and itching.
I hope this helps, I must admit it is good to talk to someone going through the same treatment,albeit for a different reason.
I do feel very isolated, Sezary Syndrome is extremely rare….if there is anyone else out there with the same problem, it would be good to talk to you too!
Good luck with your treatment Meena,
Take care xxx

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Hi @Kay2 welcome, thanks so much for your post I am sure that you will help a lot of people with a range of blood cancers.
You also show so clearly that that is how our forum works so well it is the feelings, thoughts, practicalities and similarities in our conditions that bonds us together.
Nothing you say sounds odd at all.
Please do keep posting, I look forward to hearing more about you and I was impressed with you looking after yourself and saying over during your treatment days, take care

Thankyou Erica for acknowledging my message. As a very new reader to this forum, it is so good to realise that people actually read all this and respond to messages.
I have felt…and indeed still do…feel extremely isolated……sezary is very rare …what more can I say, except to say , that, at times I feel extremely scared, sometimes want to bury my head in the sand and pretend that it just doesn’t exist.
My dear husband of 52 years has been an absolute brick, but he feels it too and sometimes it is really difficult to handle it all.
I find it extremely difficult to actually go to a counsellor and talk about this….i feel angry that I have got this “disease”….!!!
What ever is discussed will not change the outcome…and then I feel very guilty because we have had an extremely lovely, beautiful life before this happened. There are so many youngsters…mums with little children, little babies with horrific diagnoses ……what more can I say?
Thankyou for reading this…I guess it may be a form of therapy…who knows?

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Hi @Kay2 yes, I think it is a kind of therapy on here you are right.
We are sometimes not a generation to go to counselling, with my upbringing I was taught it would be seen as a weakness. Good little girls were seen and not heard and definitely never spoke about feelings.
I also think it is very natural to feel angry, isolated, scared and probably a lot of other things as well, I know I had them
I was diagnosed at 53 yrs old with another blood condition and came home and wrote my will and funeral music.
That was 20 yrs ago and my 70th birthday was my best ever with my Colin the Caterpillar cake
Just give yourselves time to take it all in and really look after yourselves, as you say it affects both of you and probably in different ways.
Please do keep posting as I look forward to hearing more about yourselves. xxxx