ECP = WC UV

Rather a cryptic title but it represents Extra Corporeal Photopheresis my latest rounds of treatment at Manchester to tackle the Graft Versus Host where as the attached pic shows I'm hooked up to a futuristic type machine which extracts as much blood as is safe for weight, blood counts, separates my white cells and exposes them to UV light before its all returned to my emaciated bod. They say they don't fully know how it produces a result but it takes a few months to bear fruit and treatment can last a year or so starting at 2 consecutive days a fortnight going to once a month later on. Each session is about one and a half hrs.

I'm very grateful for the opportunity to be given this revolutionary treatment. It can affect your eyes so ideally you need to wear shades for up to 24 hrs after and be wary of too much sun.

Hope all my Forum buddy's are in good fettle as we get well into Spring and my regards to you all. Chris x

45 Replies

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  • OK the pic failed but it ain't too pretty anyhow 😉

  • Hello mate. Glad to here from you but not as it represents your back in hospital... Tge good news is the staff won't have forgotten you and I'm sure they will take great care if you. I'm sure lots of people will send you as I do there best wishes.👍

  • So glad you are able to post a progress report, it is amazing the different things that they can do. Was there today with my husband who has once again contracted two more infections. He has complete kidney failure and is dialysis dependant. I have so much respect for all you SCT patients, it's a tough journey.

  • Hey you. Good to hear from you xx

  • Glad that you've been offered a new treatment but sorry you have to go through so much.

    Futuristic stuff sounds right for a Jedi as does light treatment .

    Still thinking of you xx

  • Hello Chris thanks for giving all your pals an update. Sounds like some really ground breaking treatment and I wish you all the very best for the programme you are having - many thoughts and sincere wishes that it will all in due course give you better times ahead. All the best. Jill.

  • Hello Chris so very glad to hear from you. It has been a very long road and my heart goes out to you and your good lady wife and family. Please God this revolutionary method will be just the kick start your system needs. Chris after all you have gone (and are going) through it proves you're a real fighter. Hang on in there. Best wishes. Constantly in my thoughts and prayers. Janice

  • Hi Chris, great to see you are back with us. I read somewhere about this kind of treatment and just how ground breaking it is, so onwards and upwards, and through you experiencing all of this, there could be a brighter future for many more.

    May the force be with you my friend. X

  • Eh up lad isn't technology amazing. You are in good hands Chris. Thinking of you and your family, keep positive and keep smiling even when you dont feel like it. Fake it til you make it. Xxx

  • Good to hear from you Chris. Fingers crossed that this treatment works for you. Thoughts and prayers for you xxx

  • Great to have news of you Chris wishing you all the luck in the world with this revolutionary treatment,prayers that it works for you.How much you have been thru,truly

  • Wishing you the very best. Our prayers are always with you.

  • Hi and thank you,

    I have been having my own little meltdown, as we know what the future might hold, but as I have told others don't wory until it happens !! Easier said than done, I have been out drinking with the "Wenesday club" and am always emotional at this time as my brave face starts to waver. You are an inspiration as well as a reminder as to possible outcomes and your posts will be a research tool for many in years to come, so please keep posting regardless of the pain, the hope/help/ who knows what IS HELPFULL to us all. And we all love you with different degrees even not realy knowing you, and wish you well.

    Good luck and have as much fun as possible,

    Ourlife

  • Just want to say how great it is to hear from you. We've missed you. Love Jx

  • Really great to hear how you are doing. Best wishes too for the new treatment. Are you at The Christie or the 'MRI? How are you feeling generally post SCT? I am admitted for mine on 30 May. I have been feeling ok about it but I am starting to slip now. As though I am on the edge of a cliff. Will there be life afterwards and what sort.

    Sending you a hug and really hoping your treated white cells are fighting fit. Xx

  • Hello Jane, what can I say except embarking on this journey is to a degree a step into the unknown for each of us. Some have few issues and keep relatively well to full recovery. Others aren't so lucky. But you must try and remain positive throughout hard as it may be here and there. I can't give you a definitive answer to your question about your life afterwards you just have to believe in why you've chosen to go to transplant and what not opting for it might mean for you. I wish you very good luck and should you need to ask me anything just get in touch.

    I had transplantt and am being treated at MRI.

  • I am from Stockport and would have been treated there but for our move here. If we move back at a later date, I will be your co patient! I am nervous especially because I am not fluent in French but have enough to get by. I asked my doc if my donor was french and did it mean I would therefore speak fluent french after the greffe..... It took him a minute to realise I was joking!

    Thanks for the offer of support, I may well take you up on that. This is the only group I am on that none of my family have access to.

    Best wishes with the wc uv xx

  • OK no problem. Do all they advise, drink plenty and use all the mouth washes etc. The transplant itself wasn't too onerous when I look back and I had a few laughs along the way. Keep in touch x

  • Hello Jane 65,

    Just 2 points:

    Firstly, as our hero Jedireject so rightly points out the SCT is a jump into the unknown (but also bear in mind that not undergoing an SCT may also be a step into the unknown about what is going to be the evolution of your illness in the future and when). I underwent a SCT 8 months ago following a complicated version of MF and things in the majority went and are going well - although I'm not shouting 'victory' for the moment, I think it is important for you to know that we all react differently and things can go well.

    Secondly, I may have mis-understood, but are you undergoing your SCT in France? If so, and you need help on a linguistic side of things, don't hesitate to drop me a line since I live and work in France and went through my SCT in a French hospital.

    My SCT was with an American, so it didn't enhance my language skills (if as originally planned it was done with a German doner I could have confirmed your theory about new language aquisition!!).

    Best regards

    Crapaud

  • Wow, fantastic. I am going into St Elois in Montpellier. All my docs speak English as does my Parisienne coordinator infirmiere but the nurses don't. My french is passable albeit I always imagine I sound like the policeman in allo allo!

    In many ways I feel confident. I am 50, I am otherwise healthy, passed all my prep tests. I had ET 2002, diagnosed with MF for last August. Jakafi worked for symptoms and spleen size but left me transfusion dependent. I went to see a Prof in Paris who said to proceed straight to SCT. And here I am.

    My apprehension lies in what the life after SCT will be like. I look at my daughters and grand daughter and wonder what will happen. And I look at my lovely husband and dread being a burden.

    Thanks so much for your encouragement. I will keep in touch as things Bob along. Keep well. Jane

  • Jane 65 ,,,

    I was admitted for major surgery to addenbrooks on March 14 th this year ,

    Before I went in I made sure I was as well as I could possibly be ,

    I ate as green as possible ,I drank cherry juice ,and I juiced as much as I could ,I ate oily fish every week ,no processed food ,no packets or tinned foods ,everything fresh cooked ..well the surgery took 4 hours ,,removing my hiatus hernia ,and repairing my ruptured stomach ...when I woke up I had 6 spots they had entered me , but 5 days later I came home ,my recovery has been so good ..I'm feeling well ..I'm doing deep breathing exercises ,I walk with my 4 dogs every day .,,what I'm suggesting to you ,get as fit as you can be ,before you are admitted ! That's the only way to take control ,make positive choices to be as strong as you can be ,, I hope this helps you ,,,twinkly xx

  • Thanks twinkly, I walk my dog dottie as much as I can. When I leave her on Monday 30th. Won't see her again until November at the earliest and then only if my doc says I am well enough. I have cried so much about that I can't tell you. We eat really healthily here anyway, all fresh and in season. Asparagus, strawberries and cherries right now.

    I was invited to look around mt SCT ward with my team nurse last week. They showed me the kitchen where they will prepare all my meals for the six weeks. Every single thing I will eat will be in a can, a jar or a pretreated microwave packet. Nothing fresh whatsoever! My one treat can be a party bag size bag of haribo sweets.....

    And I will be active as I have to use the exercise bike in my room every day. Lucky me.

    Thank you so much for your good wishes. Keep well. Jane

  • Try to keep in touch ,,I wrote to Chris all through his treatment ,,I'm here for you ,anytime. Twinkly xxx

  • Feel the force brave Jedi

  • So good to hear from you Chris. Good luck with the new treatment. I have everything crossed for you Chris, so I am looking pretty weird at mo! We are all thinking of you. Let us know how you get on when you are able Liz xx

  • Hi Chris so glad to see your post. We have all been thinking of you and hoping you are ok. Sorry to hear that you are still going through it but the new treatment sounds incredible. Hope you feel the benefits soon. Love and best wishes to you and your family.

    Karen xxx

  • Hi Chris. I am new to the site. I believe I joined just about three weeks ago. I read your post at that time. Your new treatment sounds incredible. Hang in there, wear the sun glasses and know we are all with you. XxxxHarlie

  • Good to hear from you Brave Jedi, sorry you're still going through the mill, but hopefully all will be well at the end of it. You must feel a bit like a guinea pig, including being in a cage! The treatment sounds futuristic, we've all got everything crossed that it works. I'm sure your wife and family are towers of strength for you. Good wishes and prayers for all of you! 🍀🍀

    Best wishes

    Lizzie

  • Great to see you back Chris - have all been thinking about you.

    Good luck with the treatment - sounds great for a Jedi. Lx

  • glad to hear from you wishing you well with the new treatment

  • Chris,sorry I did not finish my mail to you,meant to add all the luck and warmest best wishes for the treatment,sure you will cope ,so brave,an inspiration to us all,Hugs ,Love ,thinking of you and family Sally

  • So good to hear from you, Chris. I so often wonder about you and how you are doing but know you will come back here with news of your private war whenever you feel up to it. So glad to hear that you have some tech 'heavies' to fight on your side although the regime seems somewhat onerous. GVHD can be a real bummer can't it! If they ever manage to get on top of that one, which hopefully they will one day, they will have queues around the block for transplant. Keep up the good fight, my friend. Loads of love and positive thought coming your way -for you and your family- from here xx

  • Welcome back ,wayward son ! Missed your posts and updates ..you just lie back and let it happen .no matter how long it takes ,you keep remembering you are on a journey but at the destination you will be healthy and feel well ..so much love and caring coming your way ..not least from me !! Twinkly ol mother hen !

  • Hi Chris, life hasn't been the same without hearing from you....may this revolutionary treatment really transform things for you and take care with those precious eyes....warmest warmest regards to you and your fabulous wife too. Never forget you and you are, I think you must have guessed, rather especially loved by the Forum members. Tinkerbell13

  • Cheers All. I'm much more chipper and coming to life a tad though eyesight is compromised so all being equal I will be aiming to regularly contribute best I can. . Again your comments warmth cockles of my heart and lift my spirit. . X

  • Hey good to hear from you - sorry you have so much to go through xx

  • Hi Chris - It is so good to hear from you, and I know you are getting the very best care there. I hope you can feel all the prayers, thoughts, wishes coming your way. Prayers from me, and I remain in awe of your bravery! Marilyn

  • Hello Chris, good to hear from you again and you are certainly going through the mill with this transplant. It's opened my eyes to what's involved.

    Many thanks for keeping us all updated. Wishing you all the luck in the world and a speedy recovery.

    Mark

  • Hi Chris,

    Glad to see you posting again, sorry to hear that the way back to full recovery is taking such a strenuous path.

    My thoughts also go out to the donor (you told me who it was so I will not repeat 'online').

    Take care.

    Gary

  • It is so good to hear from you! Like the others, I have really missed your posts and was wondering how you've been. I'm so sorry you're still suffering from this, please keep us posted as you can. Hugs from the US. gail

  • Hi Chris-- Lovely to hear from you and to read about the futuristic machine and what it does. I'm curious as to how it feels when you have the treatment? Do you feel dizzy or lightheaded? It sounds like a wonderful invention, so now I'm interested to look at how many there are around, and a bit more about the machine.

    All good wishes to you and your family, its good to hear from you. We finally have spring here where I am in Manitoba, and its beautiful.

  • Hi Jean sounds lovley Spring in Manitoba. . I feel ok having the treatment but it can make you sleepy. I'm able to eat and drink ok during it. As ever you're relying on the expertise of the nurse operatives to ensure your well being and at least one has to be in attendance. There arent many machines in my region maybe 3 only. The company make their money on the sealed sterile single use pack which we were told are close on 1K each.

    Regards x

  • Hi Chris ,nice to hear from you, sorry to hear your still on going hospital treatments ,i appreciate its marvellous what they can do these days but golly gosh your one brave jedi thats for sure ,all the best Holly x

  • Great to hear from you Chris you've really been through the mill so wish you the very best of luck with your treatment. What a journey you're on the destination will be worth it. We all think about you loads and your family of course. Jane65 I so hope all goes really well for you everyone is so very different . I can fully understand how nervous you must feel. I was diagnosed with MF 7 years ago so far all is OK but you just don't know. I feel Twinkly is right about diet and exercise we have to do our best to stay as well as possible for as long as poss!!!!! Very good luck to you and everyone one else facing challenges on this forum!!!!

  • Hi Chris I've been thinking of you a lot

    Thanks for the up date you look great ,

    Hope this is the turnaround point for you buddy , take care and best of health to you , xxxx

    Pam X

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