Hi Nichola, although the case conference was yesterday I did not get feedback with some timescales until today. The decision is to try ECP and a slot is available next Thursday and Friday. I have to have a line fitted as my veins are not sufficient to extract and return the blood. The hospital are trying to make an appointment for early next week to fit it. I will then have the first session of ECP and be kept in for a few days after but am hoping I will be sent home early the following week and then have ECP fortnightly as an out patient. I have been warned that it can take several months- up to a year for ECP to work but as long as I can be at home then I am totally committed to the regime. I am lucky that I only live 20 minute drive from the hospital and believe I can drive myself to the appointments. In the mean time they are going to take me off intravenous cyclosporine and put me back on tablets.At least that will mean Iām ready to go home when the Consultant decides it is the right time. Although disappointed I will be in hospital for another 10 days at least, I feel better knowing there is a plan to work towards. I would still love to hear from any member who has undertaken ECP just in case they have some useful tips.
Oh @Skye59 I always like to have a plan in place and although there are a lot of scary unknowns, it is just not one big waiting for scary unknown, please keep on letting us know how you are doing.
Look after and be kind to yourself
Iām glad they have a plan in place. It sounds
like you have a really good medical team around you which is so important. Please take care of yourself and keep us updated
Hi Erica
Thank you so much for your kindness. Iāve had melphalan on Wednesday and then stem cell return on Thursday so far bloods have been good and have had energy to get the housework done. Iāve not been overdoing it just enough to get by. I am due to go in to hospital on Wednesday so Iām assuming Iāll start to feel awful by then.
Monique.
Hi @Monique yes, donāt overdo the housework it is like the Forth Bridge by the time you think that you have done it the other end needs painting again.
I will be thinking of you going into hospital on Wednesday and please, when you can, update us how you are doing, be kind to yourself
Iāve only just picked this up - sorry
Iāve been on on ECP since July 2014 and I can honestly say it has given me back a lot of the life I had before ALL changed everything.
Whilst my acute and then chronic Graft-versus-host-disease post-transplant was being kind of managed (in my opinion abysmally) by immuno-suppressants (ciclospirin & steroids) it was ECP which got me off them.
But here is the thing, it took 2 years of fortnightly treatment to do so. It appears to take one heck of a long time to train/re-train an immune system.
Regarding useful tips, apart from those you will have already read at Anthony Nolan or on the patient consent form package in my opinion the most important thing is to have a positive attitude to the treatment.
I try never to forget how lucky I am, not just to be alive but also to have been offered this treatment which I could never have possibly afforded in a private health system.
I hope this helps but please do come back if you think I could answer any other questions.
Thank you so much for replying, my goodness I knew the two years time frame but Iām quite shocked you are still needing it 8 years after. Does that mean once you start it you never come off? At the moment Iām on ciclosporene and steroid creams but they are doing nothing. I am waiting for a central vein catheter to be fitted so I can start the ECP on Thursday but at the moment the hospital is struggling to find a slot to fit the catheter and I really want to get started on the ECP even though it sounds like Iām not going to notice much difference for quite a while. I am hoping however that I can go home and have the treatment as an out patient after the initial session. I try to remain positive but being in isolation whilst feeling well apart from the rash , I find myself getting very anxious. I just want to hear the magical words ā You can go home ā
My aim following admission for chemo post diagnosis was to go home and not return as an impatient!
To be fair I managed the first but not the second.
Following the first monthās chemo regimen I successfully managed to get through the rest of chemo and transplant as an outpatient, yes sometimes in the patient hostel but mainly from home. But this often took considerable persuading the doctors on my part.
Of course there were many bumps in my road needing further hospital admissions but thankfully over the 10 years these have been few and far between.
Anyway what I am trying to say is dealing with this can be done as an outpatient, and your aims are realistic and 100% achievable.
Returning to ECP, this I have managed by staying in hospital accommodation overnight between the two sessions.
To be honest Iāve gotten so used to it over the years, if and when they tell me I no longer need it I think I will miss these now 6 weekly trips.
ECP has literally been a lifesaver for me, getting me clear of the dangerous (but unfortunately necessary) drugs and mitigating my Graft-versus-host-disease. .
Hi Skye59, Iām new to this forum but saw your post about ECP. Iām 2y 8m post alloSCT and have done extremely well apart from getting acute moving to chronic Graft-versus-host-disease of my skin. It started around 90 days and gradually got worse. I used steroid creams to the extend that I started to get generalised steroid side effects, and my consultant suggested ECP. I found it very restful but very time consuming. I had two consecutive days every fortnight, and each treatment took around two hours, so with travelling time to the hospital, a good 4-5h each time. It stopped the Graft-versus-host-disease getting any worse, but after about 6 months I got admitted for an unrelated problem. That was actually my good luck, because ruxolitinib had just been approved for chronic Graft-versus-host-disease. It was magic - my entire skin cleared up within ten days. I weaned off it after 6 months but the Graft-versus-host-disease flared up, back onto the ruxo, and after another four months I weaned off successfully. That was five months ago and fingers crossed thereās no sign of Graft-versus-host-disease recurrence.
So in short, ECP has got good results but it is very time consuming, and my ECP nurse told me that people usually continue treatment for 2-3 years or even longer.
Ruxolitinib is expensive (but I suspect cheaper than ECP in the long run) - I think my consultant had to get approval from a specific drugs fund (possibly the cancer drugs fund?) but for me it has been life changing. Good luck!
Hi Skye59, me again. Just to say Iām not sure why you need a central line for your ECP. I had a cannula put in my antecubital fossa (large bend of elbow vein) each time. The ECP nurse told me that the vein would get very strong after a few treatments and could be used every time, and she was right. Definitely better than having a Hickman put back in !
Hiya,
Firstly the ECP nurse advised that my veins were not suitable for ECP so I have had a Hickman line put in. I had my first treatment yesterday and during the time spent on the machine a dermatologist consultant came to look at the rash. A skin biopsy was taken 10 days ago but the results are not yet known. He is not convinced it is Graft versus Host but might be a skin disease such as psoriasis which has laid dormant but with my immune system so compromised has taken hold. It has therefore been decided to suspend all treatment until the biopsy results are known which will hopefully be next week. I have everything crossed that the biopsy results will be conclusive and a course of treatment can commence. In the meantime I am spending another week in isolation in hospital despite feeling well in every other way.
Bad luck on another week in isolation I spent a total of six months in isolation with my pre-transplant chemo and then the transplant, so I definitely empathise. I hope they get a definitive diagnosis for you quickly, though I guess that if itās psoriasis or something dermatological youāll be back to steroids for treatment Best of luck
Welcome to our forum @diana and thanks so much for sharing your experiences, that is one of great values of our supportive forum.
I look forward to hearing more about you, so please do keep posting.
Look after yourself
Hi Skye . Read your story today . My prayers are with you . What I found helpful is routine and structure and rest ā¦ā¦!!! WhatsApp has been a blessing as I donāt have to talk for a text (my mouth gets tired ) but I can communicate with those I want to keep in touch with .
A week to a page, fun diary and ticking off when Iāve taken meds and done something planned has been therapeutic . Fill your house with music. I am a Christian so my first thing is worship music and a prayer .
I went back to work june but I work from home via online . It was tiring but again my diary and structure has help and I feel like Iāve got a bit of my life back .
I will be probably having my stems next year . Was too ill last year . My adult daughter lives with me since 2020 (unplanned but because of Covid) . I like my own space though to think and āwash my brain ā but sheās been a blessing .
Hiya,
The diary with fun things is a very good idea, I will introduce it. I have finally had the skin biopsy results back and I donāt have graft versus host but a very rare skin disease called Pityriasis Rubra Pilaris. It is a highly inflammable skin disease and my legs have blown up like balloons and my body is bright red. The dermatology department have come up with 3 possible treatments and my lovely haematologist is discussing it with her team to recommend the best course of action as I donāt want anything to impact on my Bone Marrow treatment. I hope they will then start the treatment and providing there are no side effects I hopefully will be able to go home. Sadly it looks like it will take some time for the skin to improve but as long as I am home and my legs reduce so I can get out walking again then my mental state will improve. It has been a tough three weeks but think a plan for the future is being mapped out. I just hope there are no side effects to the drugs for treating the skin disease which results in me having to remain in hospital for longer.
Hi everyone. Sorry i havent been on in a while! So after 44 days i finally got home. Not as i had of hoped as they needed to give me a gcsf injection to allow me go home as my neuts had dropped to 0.3 i think. However my engraftment was slow to start. In fairness i had been thru quite a difficult time during the transplant which was very rare and very unfortunate but i got thru it
Im now +54 days today and consultant says she is happy with me! Im out and about walking every day. I can do a few bits around the house. Hubbie has been pff work for a month but goes back 2moro. I feel ok about it. I have family not too far away if i spiked a temp but positive thinking! My clinic visits are being reduced from 2 to 1 weekly starting next week too.
Its difficult mentally as im all the time watching myself, my temp and then of course the blood counts. Willing them to be good each time. Am so grateful for the wonderful lady who put herself thru that process to give me her cells. I hope with all my heart i get to thank her properly some day. For now its keep going and take it a day at a time. Love to everyone xxx
Gosh @Ashob I bet you counted every day of the 44 days and now 10 days at home and it sounds as if you have turned a corner at last.
Be kind to yourself it must be natural to be time watching yourself, I feel like saying give yourself time, but wonāt.
As for the wonderful lady who gave you your cells I bet grateful just doesnāt even touch it.
Yes, just take it a day at a time and I hope you do not miss your Hubbie too much tomorrow.
Look after yourself you have been through a lot emotionally, physically and medically
I spent a total of six months in isolation with my pre-transplant chemo and then the transplant, so I definitely empathise. I hope they get a definitive diagnosis for you quickly, though I guess that if itās psoriasis or something dermatological youāll be back to steroids for treatment 