Hi,
Today we find out if the treatment my husband has been receiving at Guys and St Thomas’ for the past four months is working. I wanted to write this before we find out but just didn’t seem to get around to it and now the day is here!
When we were first told about this kind of treatment we went away scared and fearful for the future, the consultant made it sound horrendous and gave little hope it would work. When we saw the actual consultant a few weeks later we were told this wasn’t for him, he wouldn’t need this treatment. We were relieved and grateful. A year on my husband was referred to Guys and St Thomas’ and a few weeks later had started the treatment we had both hoped he wouldn’t have to have!
So, after a few months experience we can both say it hasn’t been as intense or as debilitating as we had feared, it hasn’t affected our family’s life as much as we had feared, it hasn’t been what we feared it would be… thankfully. So I wanted to let you know this – if you are told you might have to have ECP (description below) it might not be as bad as you think it could be. I say might because everyone is different, everyone is in a different boat, everyone is affected differently. But if it can relieve some of the worry and concern the consultants might fill you with then I hope it can help.
We live on the outskirts of London and the hospital is located in central London, we were told we cant drive there and that he has to take public transport. He had not been on public transport for years due to being immunocompromised. And then all the Covid worry! I don’t need to explain what that might mean to you. (I was both relieved and worried about not having to drive though, the issue I had to worry about other than the affect on my husbands mental and physical health and wellbeing was my work and my family – I work full time, he isn’t working and we have two children – how could I take two days off every other week to drive him to central London and back, the cost, the actual drive, the time away from work and home, well it all felt completely overwhelming and somewhere I didn’t want to be again)!
My husband was feeling well, he looked well, he was no longer fatigued, he was eating well, he was putting on weight and we were talking about him getting a part time job - but he had been in hospital in June due to Graft-versus-host-disease rearing its ugly head again so he was referred to the specialists. And by October when they took one look at him, they signed him up for the treatment to start in November.
The treatment consists of a two day prep at home, healthy low fat diet, no caffeine, no alcohol, lots of water to help the blood move and do its thing. (We can do this easily) He then goes off on his own (the tube is a lot quicker and easier than a drive would be) its been quiet too and he has felt fairly comfortable, triple jabbed and no longer immunosuppressed. At the hospital he is checked and has blood tests etc and he then sits in a chair with a tube in one arm, taking his blood into a machine to be separated and zapped and put back in the other arm (the basic description). Depending on how thin his blood is (how much water he has drank, he wasn’t drinking enough at the start) it can take at least 2/3 hours and then he comes home on the tube. He rests and eats well. And then goes back and does it all again the next day. He does this for two days in a row every other week. The day after the two day treatment he needs to rest, properly rest or he will feel very tired for days. So it takes a week really, the two day prep, the two day treatment, the day of rest. He cant work, he cant help out with the kids much or house stuff, he cant read sometimes as the light can affect his eyes but he just needs to wear his sunglasses more (he doesn’t wear them as much as he should) this is a side-affect of the treatment. But he really is just tired following the treatment, something I didn’t really believe at first, I thought he would be affected much more than he is but its mostly about re-learning what he can do and what he must do to help himself recover.
And then he is absolutely fine for the week in between. He says the nurses are great and sometimes he is alone in a room and he just shuts his eyes or listens to an audio book. Sometimes he is in a room with other people having the treatment and they have a chat.
Today, we will find out if it is working, he will also have the treatment as planned. (We both have our thoughts about if it is working or not but haven’t been very vocal about it)
These last four months have gone quickly, we adjusted easily to the new routine, we await further news and hopefully a further treatment plan.
Extracorporeal photopheresis (ECP) is a cell‐based immuno-modulatory therapy involving the separation of white blood cell‐rich plasma (buffy coat) followed by administration of a photosensitiser (methoxsalen) and ultraviolet A (UVA) radiation before re‐infusion. It is used to treat a range of diseases. At Guy’s and St Thomas’ it is a treatment for Cutaneous T-cell lymphoma/Sezary Syndrome and is also used as a second line therapy in the management of acute and chronic Graft versus Host Disease (Graft-versus-host-disease) following stem cell transplantation.
Thank you so much for sharing this @Lucy I think there will be people on here who can relate to many aspects of your and your husband’s experiences. We have everything crossed for your husband today! Please don’t hesitate to give us a call on our support line if either of you want to talk things through at any point afterwards. Do let us know how it goes if you feel up to it.
I hope I won’t need it, but that is such a clear description of the process - thank you.
And it sounds like you and your husband have been enormously stoical in the face of many practical difficulties, let alone the emotional and physical difficulties. I hope I could face all of those challenges in the admirable way you have both done.
Wow @Lucy thank you so, so much for taking the time to write about you and your husbands experiences and practicalities of his treatment regime. It was so much more than a snapshot.
The financial implications of blood cancer are not often mentioned and they are so important.
I am so sure it will help so many others.
Please tell us how you have got through these times too.
Be kind to yourselves and as the weather starts to improve, we hope, there are lots of things to all enjoy that are free.
Please keep posting
So, we did not get a definitive answer (silly us for thinking we would)! Another three months of the same routine, twice a week every other week, before they can tell if the treatment is working, apparently it is going well but they cant tell yet (argh, why did they say they could at the beginning then) anyway they seem happy with his progress so far, levels are all ok (I don’t know what they are) but no Graft-versus-host-disease so that’s a plus (and why I think it is working) . We were a little disappointed but also trying to be upbeat about the feedback so far and the way my husband is feeling.
He is also being referred to an ophthalmologist to check on his eyes…is it the treatment and the possible side-effect or Graft-versus-host-disease or age or just all of the treatment he has been through I know now that steroids can also affect the eyes and he has been on quite a lot of those in the past few years. It will be good to find out.
Yes @Lucy living away from the centre and needing to take pubic transport into town for regular treatment is a real problem. I have to run that gauntlet next Monday.
It’d be a relief if the rail companies instituted something on the lines of the Quiiet Coach - a COVID-aware Coach
Lots going on for you. It’s hard not having a definitive answer as you feel a little out of control. Good to read some positives - let’s hope things keep going in the right direction. Sending lots of love x
@Lucy the waiting and not knowing is the worst time.
Since diagnosis it seems to be a continuous worry and waiting game.
Yes, if your husband is feeling OK that is something to appreciate.
Perhaps be kind to yourselves and celebrate the positives.
Hi Lucy,
I am a very strong advocate of ECP having attended Guy’s Hospital since 2014.
With very bad Graft-versus-host-disease, for the first year like your husband I to was on fortnightly treatment. The benefits of surpressing this little understood and most unpleasant condition are slow in coming, but I can promise you ECP does work.
After the first year I went 4 weekly for about another year until following an unwelcome attack of pulmonary Graft-versus-host-disease I went back on 2 weekly for 6 months before again going back onto 4.
Almost 2 years to the day aftet starting ECP I was able to come off all other immunosuppressants including steroids (which in my opinion are the most evil of drugs).
I remain 4 weekly to this day and I can’t really contemplate ever coming off it all together! It’s become part of my life - a part that keeps me up on the tightrope which many transplant (victims?) must walk.
Your husband needs to stay positive and proactive. You are getting the very best treatment at the best of facility’s (Guy’s Cancer Centre).
Hi there Robson, thank you so much for your reply…this has meant a lot to me/us - there isn’t much out there on this kind of treatment and the experience people have (we feel as though we have been led blindly into it, which is what led me to post) I am so glad to read it is working for you - we had no idea it could possibly become a long term treatment but if it works, if it helps, then its worth it. We just need to get our head around that I guess. But thank you once again. Take care. x
Nine years ago when facing a possibly unnecessary stem cell graft, I was desperate to talk to someone who had been through this. Despite many promises from my haemat-oncology team including my CNS this never happened. I guess they are professionals at the top of their game who deal with blood cancer - not people!
Subsequently I have taken this same team to task who had only told me at the time “you may experience some Graft-versus-host-disease, but this is a positive sign the graft is working”.
There is no question they saved my life, but this life comes at a personal cost.
You’ve got to love the defense you didn’t ask the Dr a particular question - the question you didn’t know to ask!
BUT I consider myself incredibly lucky and am extremely thankful to be alive.
Curing my cancer brought me Graft-versus-host-disease. Surving Graft-versus-host-disease brings me ECP…
It’s all about mental acceptance in my opinion.
Hi, please don’t be sorry this has been both enlightening and reassuring to read and re-read esp this sentence ‘Curing my cancer brought me Graft-versus-host-disease. Surving Graft-versus-host-disease brings me ECP…’ i totally agree with you that its all about mental acceptance (for us all). thank you.
Hi all, not sure this will be read by anyone as I noticed the date of the original post was 2022 but I just googled ECP at Guys where I have just started my treatment and reading you’re comments is spot on and Robson you’re advice is so pertinent I just wanted to say thank you, reach out if anyone reads this and connect. I have my Consultants review next week nervous but excited, it’s been really tough tbh!!!
Hi @Meena glad to hear from you again.
I will highlight your post to @Robson for you.
Your feelings about your consultant appointment seem very natural to me, please do let us know how you get on.
Look after yourself
Thanks for drawing my attention to this post Erica.
Hi Meena, thanks for touching base with me.
I hope your ECP journey ends up being as successful as my own.
Seven weeks ago, after 9 years 6 months of ECP, it was with considerable intrepidation I received my final session of treatment!
Whilst this end of treatment is a trial, mentally I was not really prepared for the feeling of loss I experienced. I have got my head around it now and realise if I can do without this invasive treatment and avoid these overnight hospital trips to London so much the better.
Anyway what I am trying to say is this treatment, which I accepted was for life I have come out the other side of. So it can be done .
