Dave has hit the nail on the head with his last post in that we are all different so our bodies react differently to treatments. This means that ECP treatment will be variable between patients and in some cases it doesn’t always work, but certainly the rate it works will be different for each of us.
Certainly in my case the initial improvements were fairly quick which really helped the worst parts of the skin GvHD, but then the progressions slowed down. All I can say is keep going as long as your medical teams are happy to continue and they are seing some improvements, no matter how slight. Use whatever methods you can to relieve the symptoms in the meantime.
Helen, I don’t know whether the ECP will be causing your Polyneuropathy but it’s ceratinly worth discussing with your medical team. As with anything any of us experience during our treatments, if you notice any changes to your body during treatment, make sure your medical team are aware so that they can treat it as necessary or can reassure you if it’s normal.
Hi Steve and Dave,
Thank you so very much for your help. You can’t imagine how valuable it is. Good to know about possible time scale too.
I’ll mention it to the Dr’s team. The nurses just said, no it can’t be causing the sensation in the feet ,but I’ll mention it to the Dr’s team next time. The electric shock , burning feeling is much better today than yesterday. I think I need to keep notes on it.
Best wishes and big thank you to you both
Helen
Hello all,
I’m in the week between ECP treatments and at last feeling emotionally a bit better which gave me the energy to eat something and get out and go for a walk in the cold. I was out with my granny walker, got briefly chatting to a couple of people too, only a few words, but it lifted me, the walk and nature too.
Getting ready for Monday and tuesday 's ecp and next weeks recovery. I’ve worked out I need about 7 days to feel recovered from the ecp. It’s good to know for planning.
Just thought I’d share a less stressful day with you.
Best,
Helen
I understand about the Ecp treatment I am still recovering today after my treatment earlier this week. I spent most of the day sleeping. However I think it is the journey each day of treatment over an hour and a half in each direction and then day after hour and a half to and from my consultant appointment. Hopefully will all be worth it as is the best treatment for skin gvhd issues.
good you managed to walk out gives you some independence back which will also start some of the physiological healing. Unfortunately I am not at that stage yet as skin still too tight that I have not enough stability. Keep up the good work.
Thanks Dave, I hope you can build up a bit of strength, maybe walking round the front room and extending number of circles… or the stairs.
Thanks for being with me in spirit, feels supportive, I’m with you.
Helen
Hi Helen,
I do walk upstairs about three or so times a day and four or five times a day into my kitchen from the lounge. It is so hard though as most of the time my legs are so stiff from the gvhd, and doing other exercises is normally not an option as I am so fatigued. In February this year it was totally different I walked about six houses down with sticks and go up 2 stairs at a time. Then with gvhd my skin got tighter and tighter now I have to pull myself up the stairs, and I suppose I am sort of waiting for the tightness to ease up so I can try to make some headway again.
it does not help me that in January 2021 I had a secondary cancer on spine giving me a spinal compression, and temporary paralysis toon which meant I had radiotherapy and three months or so in bed and unable to move especially my legs and had so much muscle wastage I had to learn to put weight back on my legs and learn to walk again. So After June 2021 I was learning to walk again very slowly and the gvhd then put me back dramatically and I am hoping the Ecp can weaken at some time my tight skin and rigid knees.
By motivating yourself to walk outside has shown you have made great progress, I have read from others experience with Ecp you need to stretch the affected areas as much as possible, to exercise those areas as much as you can and even deep tissue
massage if you can and hopefully the Ecp will eventually aid in breakup of the tight skin as well. So keep up the good work.
Hi Dave, that sounds rotten with the secondary cancer. Hope it’s under control.
It sounds like you’re doing the best you can under the circumstances. I’m amazed how well you were doing… 2 steps at a time…I can only dream of that.
Thanks for sharing and I think you have plenty to be proud of. It’s an up and down with me too. I was managing 7000 steps a day for a while and now it’s just not happening anymore.
Best
Helen
Hi all,
I was sent home without ecp this week because I tested positive for covid. The gvhd is already getting stronger. Has anyone else had to have a break from the ecp? Should I ask to increase my jakavi just to see me through this week or two?
Thanks,
Helen
Hi Helen, Luckily have not skipped Ecp as of yet. I have read user comments that some users have had gvhd get a bit stronger when they try to come off Ecp as the immune system is not being suppressed enough. Also if you are registering positive for gvhd you may have actually had a weak covid. I have also read that for some people an immune response to a virus or infection can cause flare ups to gvhd. When I had my initial flu and COVID vaccines this is when my initial gvhd started, so for now for me no more vaccines and whenever I leave the house the mask stays on always. You will need to speak to your team before you increase any meds as this could cause damage, you need to follow thier advice. Otherwise you will need to wait for your covid symptoms to subside and go back to Ecp which is still a good option to keep your gvhd symptoms down.
Your gvhd will eventually go down, it is just a long slow road as we already know and patience. I have had a bit of a down week wondering when I may improve a little, but know I just have to accept the way I am for now. It is difficult. But we must strive on.
Thanks Dave,
It sounds very plausibld what you say, I’ve had plenty of covid jabs and along with the ecp it probably protected me from symptoms.
I’m finding it mentally challenging … to be isolated on top of social isolation. I can’t even sit in same room as hubby cos he can’t afford to get it. The ankles and feet are getting worse, which you can understand too well. The skin very tight and like I’ve stuck loads of potato crisps on them with glue, and the skin is as thick as a rhino’s.
Thanks Dave for being there. It’s helpful in those endlessly lonely boring phases I experience through these endless days..
I’m here too, don’t forget…
Best
Helen
Many thanks for being there too. For both of us and other sufferers of gvhd it is very isolating to protect ourselves from further gvhd flare ups. I am still suffering from my initial flare up, luckily the gi and mouth gvhd has died down but I am still left with my immobility at the moment. As you I am also suffering from the isolation which gives a great deal of psychological and mental scarring. Without being able to really do anything I don’t really achieve anything and this it makes me feel quite useless. All I can try and do is push myself a bit to improve but that often seems sometimes so difficult. I hope your symptoms have not got worse since not having your Ecp this week. I am on Monday and Tuesday having my sessions with a lot of travelling so will be quite worn out from it. Have a good weekend.
Hi Dave
Thanks. I find knowing when to ‘push myself’ or just go easy and be kind to myself a difficult line. Thank god I have recently got a therapist paid for by the health service who seems to be taking me seriously. He’s not very experienced and doesn’t do much, but I make the most of it and try to see it as a win.
When you say emotional scarring, you’re probably right but I can’t cope with the negative take on it and prefer to tell myself ‘in my stronger moments’ that it’s ok. I don’t think I would be here without having discovered a concept .. there’s lots on it in the Internet, on ‘self compassion’ practice. It’s the practice of talking to myself like I’m my best friend and acceptance. Sounds aesoteric and a bit wierd but it works (also statistically proven). It’s not for serious illness, it’s for everyone.
Kristin neff is a leading researcher in the field (on you tube- check out , the difference between self esteem and self compassion) . I could post a link if you’re interested, let me know.
“Center for mindful self compassion” the online website with free resources to download. I’m on their emailing list for free resources and online seminars.
I also found free online courses helpful…on learning platform ‘future learn’ , for example , on mindfulness. Learning in itself is proven to ease stress.
My 8 months horizontal in the hospital were made bearable with that, it was also helpful that a wasn’t really mentally present for a long time. I think I cope with the scarring with gaps in my memory. My brain’s way to protect itself.
A therapist in the clinic was helpful when she told me I’m not living in my old Film. It’s weird but I found this liberating.
I’m thinking of you with your ecp and travelling monday, tuesday Dave. I have to wait another week.. the following Monday Tuesday.
I’m here Dave.
Best, Helen
Hi Dave
Tuesday today, I’m thinking of you on your long trips and wearing treatment. Hope it brings you a plus, even if only in the long run. Does someone drive you?
I’m not doing well myself, emotionally low and physically missing the ecp… flakey ankles are painful so not sleeping well.
I can’t get out at all cos it’s icy. Not even stand on the doorstep. I’m really lonely. At least my ecp gets me out and I see other people.
Sorry to download on you Dave.
Helen
Hi Helen.
sorry I did not respond sooner but after my 2 days Ecp treatment I felt absolutely worn out and spent yesterday afternoon sleeping. I spoke to another patient who was also having Ecp and they also said they also felt very tired after Ecp and also they are on high steroids so they also said they are not sleeping due to the steroid affect keeping them awake. They also did not look too good. As you say by going to Ecp is a way to see a few people and to feel a little bit normal. I am 100% at home except for Ecp. Like you is causing my life to be on hold and yes it is very lonely place to be. After my Ecp my legs felt tighter as though things had got worse but I think it is due to tiredness it makes it feel worse, just need to wait a few days to see if things improve. However it will be slow! I travel to Ecp with hospital transport ie a like minibus as I am so unstable walking due to the scleradoma I have to travel in a wheelchair. At home I can walk around from lounge to kitchen and I can just bend enough to slowly pull myself upstairs but it is not easy. Before the gvhd I could go up 2 steps at a time now I can only go up 1 at a time but cannot carry anything as I have to hold on and pull with both hands. I am just waiting and hoping for the Ecp to start working to start to give me more mobility to give me more positivity. Some days it is very difficult to get motivated enough to get out of bed, but know if I don’t keep the muscles moving s bit I know I will not improve in the long run. This week my second Ecp treatment was going to fail as the machine alarmed half way through but turned out the centrifuge bowl had filled up with too much blood and the machine needed resetting to drain some blood out the centrifuge. I hope your mood picks up a bit as I know how much this gvhd can get a person down. I know when you are not in direct contact with another sufferer you believe you are the only person with issues, we are not as we have seen by the forums. We just have to be patient and slowly hopefully we will see progress.
I hope Ecp helps with ocular chronic gvhd as my eyes have recently become a bit dry and gritty. I am now using eye drops which does ease the eyes for now. Luckily it is not unbearable.
Thanks for getting back Dave. I’m pleased your transport is part of the ecp treatment deal. Sounds well organised. Glad you are being kind to yourself too, that gives me a clear message about myself. I’m finding after midday is when my day starts and at the moment I’m just trying to accept it which is difficult. I spend the morning in bed after tablets and eating a bit.
The only way for me is to be in the now, not yesterday or tomorrow.
Sorry to hear you’ve gone from good on the stairs to struggling again. It’s really not easy, I’m getting worse but have a little lightweight cloth rucksack. Going down is painful.
I just can’t imagine how I’ll be mentally in ten years if this stays. Social isolation and immobile. I read that 42% of ‘chronic gvhd ers’ manage 10 years after bmt.
Trying very hard to be in the now.
Hi Helen. Hope the Ecp went ahead for you yesterday and today. I know when you are doing something like Ecp for gvhd it helps give more positivity as you feel like you are doing something to help resolve it. I have kept a bit away from forums this week as too much over reading into peoples issues with gvhd also gets me down sometimes. I want to help with the experience I have with some issues but I don’t want it to have a negative impact on me. I hope you start to soon see the benefits of Ecp if you have not already. Unfortunately I have not really seen any change yet except for more positive liver function. I keep holding out hope.
Hi Dave
I feel just the same about portioning my access to the different gvhd forums. It impacts me too.
I’m lying here and need to sleep for a very early eyeclinic appointment tomorrow , but cant cos of the skin ankle sclerosis gvhd. Painful, and the gvhd seems to make it more painful, but i think the ecp does help me somehow. Cant put mx finger on it though.
It went fine, the machine only stopped once or twice. The ward was warm too. Nice late appointment this morning too.
Night night
Helen
Hi Helen,
Hope you are fine. No real changes in me since our last communication. I guess you had Ecp yesterday and today and are probably quite tired from it as I also seem to be after treatment. My sclerosis of my legs with tight skin does not seem to have changed or reduced yet as I still find mobility so hard due to the stiffness it gives me. My eyes seem a little dry at times and my eyes get a little blurry but is luckily not serious yet. Other than these gvhd symptoms luckily my bloods have been quite good and stable, however the gvhd symptoms I have are bad enough to me as they have taken away my independence and tire so much that I also never seem to much energy to do anything. It is always so very difficult to be patient but I know I must for the end result. I hope your ankle is improving or at least not getting worse.
I wish you a healthier new year.