Hi Folks, , Thought I'd post a pic of yours truly hooked up to my Electric Corporeal Treatment ECP machine last Thursday. The wonders of modern science, it is the stuff of Star Trek. Depending on a number of patient factors ie weight, blood counts the bod in charge either inputs info or works out how much blood I can afford to part with, opens a kit containing tubing and a centrifuge and sets it all up.
Over the next hour and a half the machine does its thing, takes the designated amount of blood via my Tesio Line separates it out and the white cells are routed into a flat clear hard plastic chamber where they are exposed to Ultra Violet light. Once zapped the whole lot is returned to me.
They are unsure exactly how the mechanics of this treatment works but for some it can help alleviate the effects of Graft Versus Host Disease particularly improving the skin and liver function. It's hard to measure the success which can take many months to bear fruit, and in my case I'm not sure it's worked to any great extent. Then again would I be worse without it ? Currently I attend two consecutive days a fortnight but this will soon reduce to once a fortnight or month. Each treatment costs roughly 1k.
You need to wear sunglasses in bright light for 24 hrs after because your pupils don't react and shut down as quick. And it can make you tired. I seem to tolerate it well.
Cheers Chris x
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Hi Chris I hope you are well today what a machine . I have never heard of it I do hope it helps your white cells it does look like it should be in a star track film . Me and my husband and son are rewatching all the Star Wars films well I watch them get bit confused but I must not talk ask silly questions when watching then they do over my romance films . Look after yourself you do so well best wishes poppy 6060
wow! I don't know what else to say, apart from you are the Jedi Knight so it seems fitting! Good luck and speak soon
Chris ,you undergo so much...it is beyond understanding isn't it ,all different treatment that you endure..,and I am scared of the scan I have to have next week,Childs play in comparison, had them before so shouldn't really be a wimp. You look good Chris,it must be doing something ,you stay cheerful...Best of Best wishes to you..lovely warm day here today,daffodils pushing thru...just had four days of minus 6/ 7 mornings,not much better thru the day....the world is topsy turvy,warm e- hugs for your recovery.Sally
Hi Chris, I must say you are a true pioneer of the medical world, hope for us all who have blood problems, good luck Jedi-Knight all many more years to you keeping us informed. June.xx
Hello our kid - that's certainly some procedure Chris isn't it - you are a grand trouoer for sure and I do hope you feel some good benefits in due course - good health is a precious thing isn't it and well worth fighting and enduring for so I understand all you do endure to get to the goal - all the best as always - Jill
Nah Yoda has pointy ears also. But I'll take the Vulcan Mr Spock. When I visited Universal Studio many moons ago I went on a scary ride where they inevitably take your fright face pic. Well I kid you not when I got ours I was Yodas twin. .
By the way I'm more concerned about my distended abdomen which is very uncomfortable. Hoping water tabs will eventually shift some of it. Reminds me of Pilsbury Dough guy 😁. . X
I have got a vision of the Dough Guy!!! Xx😺😺 Made me laugh and forget my knee which was having a grumble after horsing about with the grandchildren.xx Aime 😺😺
Cheers! Just thought I'd share my experience with you partly for interest but also to illustrate that advances and new treatments for blood conditions are coming on a pace. When I'm on the day unit at Manc Royal I can see others having their treatment whether it be transfusion, complete blood exchange or something in between. Occasionally there is someone donating Stem Cells and they use a similar machine to the one I'm on.
The donor has injections up to a week prior to make the Stem Cells spill over into bloodstream. There's a line in one arm which extracts their blood, the precious cells are spun off and harvested into a bag and their blood is returned up a line in their other arm. They have a colour chart to match to and are looking for a lovely raspberry shade. Fantastic eh? . . .
So don't ever lose hope no matter what because what is being achieved now is remarkable and surely more will follow.
I explained why I was wearing them to my volunteer transport driver and he said oh really I thought you were a posing git. . Hmm made me laff. Hope you're doing well Helen my friend. Never far from my thoughts. X
Hi Chris you may recall among your many followers frank my hubby has had Mylofibrosis for 5 yrs now he's still on the ruxolitinib this week he had his gall bladder removed and came out of hospital to day he is amased at what a brave man you are an inspiration to all people with MPN god bless kisses franks wife xxxxx
Thank You for your kind words Kisses, i do recall your hubby Frank. sounds like he is going through the mill somewhat. I hope he maketh a speedy recovery. MF is a hard, unpredictable condition to bear for both of you. But it can be a slow burner. Whatever happens in the future hope springs eternal. .
I don't see myself as brave but maybe with a few others I've blazed a trail and I'm happy that I'm able to give inspiration even if it's due to sharing tough times alongside better ones.
Hello my friend, wow !! that's all I can say you are truly an inspiration to us all.
Did read recently about this type of treatment and how they are having really good results with it, ( daily mail ) so here's to the future and people like like you who pioneer these treatments.
Anyway Chris, even though your are 'wired for sound' still looking good.
It does sound like the stuff of science fiction, its great you can share this with us.
My only concern is you mention about not being able to look at bright lights after, did they mention anything about getting wet or being fed after midnight too?
Haha no Paul I hadn't made that connection. I'm not doing too bad can't complain you know. Eating well again so happy about that. Always better when I can put fuel on board. Had a steak last night but it must be well done and I prefer medium, all to do with gut infection. I'm not allowed certain food and drink ie bottle conditioned beer coz of live yeast, and prawns , pate, certain soft cheeses etc.
It's truly amazing what medical science can do!! I never cease to be amazed by it. It's a great pic Chris. I hope it will help and that things pick up for you. I'm sure you know that all of us here hold you in our hearts and look forward to your posts. Keep smiling, and long may you keep us all smiling too. Karen x
Well, my friend, you are looking much better than in some pictures we've seen! I am only too aware of how looks can be deceiving as I am finding standing for any length of time is challenging now. The other day I was waiting for a prescription in the chemist and felt I needed to sit down. I took the only available chair and as I'm told I look well and much younger than my actual years I started getting filthy looks from others waiting in the queue. It just shows how we shouldn't judge folk though!
What I am curious about with your treatment though is how they ever discovered the potential in the first place? It seems incredible! Never mind, as long as it is hopefully working for you we won't question it too much.
Hi Jan, I don't know how it was discovered. I shall ask my provider see if they know. You're spot on about folk being quick to judge I've experienced loads of it whether it's been taking a rest, using my blue badge (boo hiss) or riding in my wee mobility scooter. . I am not able to stand for more than a few minutes at mo.
Hi Chris, I think what you're having must be similar to what my friend who has had stem cell treatment for multiple myeloma has had. She made us laugh when she told us about being informed that after having the stem cells put back in (she had her own) she would smell of tomato soup - she thought they were winding her up - but she did!! Afterwards a visitor stood near her commented "Oh whatever's for lunch smells nice" she raised her hand and said "actually it's me!" Cue strange look from said person! Anyway her treatment is going well and at the moment she is in remission.
I hope you continue to improve, your journey back to good health is a slow one so far but you'll get there. (Think hare and tortoise) Besides look at all the NHS workers you're keeping employed! Also I expect they are learning from your case so you're helping others as well.
Glad your friend in remission Lizzziep. . Tomato soup is new one on me so if I smell it at clinic I'll have a clue now.
Manc Royal is a teaching hospital so my consultant is permanently shadowed by student doctors from overseas and one learn more about GVHD from my case than he ever knew previously. So you are correct in your assumption.
Well, look at you Superman. You are also a Super Hero, pioneer of all things Mpn wise and probably the bravest man I know.
My silly little venousections pale into insignificance in comparison. Your sense of humour is still very much in abundance by the looks of it which amazes me no end. If anyone can conquer this, you can, and believe me when I say, you are an inspiration and a light of hope for us all I am sure.
You have faced the Dark side but here's a little bit of something you will understand.
For many, the Jedi Knight is the guardian of a precious dream; a dream of peace, a dream of justice, a dream of a brighter future. The fate of the galaxy depends upon the Knight’s ability to keep this dream alive.
To keep us safe Chris keep dreaming of that brighter future.
Yes Anne the Dark Side always looms large in my world and can try and claim you when your guard is down. I'm always striving to keep my dreams alive and look forward to the day when I can play in the park with my Grand Children. Simple pleasures.
Don't under-estimate your venesection treatments as I'm sure I would find them rather daunting. There are many undergoing far worse than I and I never forget that.
Hello again, Chris, the only word that comes to mind when you are 'online' is 'Wow'....you are a Wow Man and we admire you beyond words....whatever treatments you undergo, your extraordinary courage and just brilliant sense of humour shine through. (Still chuckling about the driver commenting 'Posing Git!'. Little did he guess!) Blessings and prayers, as ever, Tinkerbell13
It was truly lovely to see your photo - you are looking super good! Keep striding forward and wake each day knowing that you are one day better than yesterday. I am full of admiration x
Astounding technologies for an astounding individual. You never cease to impress, and you are the best medicine for me personally to keep my feet firmly planted in the reality of the various stages, and courage it takes to traverse the distance as a successful MPN (PMF) person...
Perhaps some day, I too, might gravitate to emulate your grace and eloquence, in the way that you serenely manage your condition...
You are my mentor, and the same for so many others here that share your conquests through the story of your experiences...
Thank you Chris, you remain an incredible inspiration and pioneer to us all...
When I signed up to Mpnvoice a few years back I didn't realise it was a science fiction show!
Joking aside, I hope that 2017 will be a little easier going for you.
Your personal battle in some way makes me feel a little guilty in mentioning my own issues - but just to let you know that my Jakavi treatment for my liver GvHD appears to be working and the dose is being reduced. For my muscle facia problems I have to grin and put up with it - apparently the drawbacks of the cure aren't worth the bother. Such fun GvHD
I read you are being treated at Manchester Royal, is that right? The reason for my question is that someone on the 'american' MPN net forum was looking for info on tip notch SCT hospitals in the Manchester area.
Cheers Gary, to my knowledge Manc Royal Infirmary is the only one with the expertise and specialist dedicated unit to perform BMT/SCT whether it be a full or partial transplant. And of course provide the necessary aftercare particularly in cases such as mine.
Just out of interest there is a Manchester in New Hampshire USA, could it be there? It was on a quiz prog I watched recently, Eggheads I think.
Thanks for sharing your Jakafi news I will let my consultant know. And sorry you are still having muscle fascia problems.
Yes Chris I did know there exists a Manchester in the US (I actually worked there from time to time - I also worked in the UK Manchester for a few years, even gave blood there; don't think they'd want any of my blood these days!!). Anyway the man in question was querying about UK hospitals, so I assume he meant Manchester, England.
Hi Chris, sorry I missed this. You look so well, even with the machine accessory. Why is it that you are hooked up to this? I assume it's to do with your BMT? I hope you get all the benefits and none of the fallbacks after all you have been through x
Hi jillydabrat - it's to try and alleviate the debilitating effects of my post transplant Graft Versus Host Disease - GVHD. Aiming to improve skin, liver, eyes and general wellbeing. -Chris x
Wow Chris you really are going through the mill aren't you. You are an inspiration and your cheerfulness and resilience never ceases to amaze me. I'm sure you must have your dark days, but you always keep shining. I welcome you sharing your treatments and experiences, and I am a great admirer of your wise words. How lucky are we to have the NHS. xxx
Yes indeed Mallard how right you are about our NHS. Long may it continue but I suspect there will come a time when it will all be outsourced , I hope that day never comes though. Was watching a holiday prog where a young girl developed acute appendicitis abroad and the docs wouldn't touch her until payment by credit card was made in region of 4K. She got infection so total bill about 6K. Hmm.
I guestimate my treatment thus far around 3-400K. A Stem Cell Transplant can be up to 250K. I have had a couple small bottles of a blood product that have cost £1200 per bottle. A bag of red cells cost about £120 and Platelets nearer £300. I have had so many (5 bags platelets one night prior to minor op) I've lost count. A box of 24 of one of my drugs cost several hundred pounds.
Anyway there you go just a taste of how it's so expensive to treat the numbers of folk they have to deal with, especially in cancer cases.
The numbers you're quoting seem similar to what they told me in France ~350k€ for a 'standard' SCT -however this does not include the post-SCT period and its mountain of medication (luckily this has been reduced to a small hill for me now).
I don't khow how much Jakavi costs in the UK but over here it's 3800€ a month - funnily enough there's not much difference in price between 15mg/10mg/5mg pills. It was the high cost of the Jakavi that delayed me getting the OK for my GVHD use.
Funny system here, on one hand they splashed out tons of money for the SCT and follow up, and on the other hand gave me enormous hassle for a flu vaccine costing 6€!
Don't get me wrong, I'm not moaning, I'm extremely grateful and indebted for the health care I've received, but sometimes the health service is difficult to understand.
Hi Gary , , I have similar as per your flu jab with a few of my GP supplied tablets in wanting to supply cheaper options but different brands. I guess the basic ingredient is the same but if it ain't broke don't try fix it is my view. Still can't blame them if they can get similar for third or more of cost.
Jakafi is £3200 for box 56 which is £57 per tablet. I got mine via the Cancer Drug Fund when I was on it prior to SCT as it was denied NHS funding by the controlling body for drugs The National Institute for Care and Excellence NICE.
So it appears we have similar experience and as you say sometimes it's hard to see the logic. I have encountered a fair amount of what appears to be wasteful practice as well.
Cheers buddy - enjoy your small hill of drugs, I'm about to tuck into mine.
Hi there you hero wayward son !! Sorry I haven't been around to nag you lately ..but Iv been in to hospital to get a new silver knee put in my right leg .who ever said it doesn't hurt ,,they lied !! The first weeks are agony .but once you do the exercise and get the mo.jo. Working again the body starts to recognise this alien ..I hope you are following the good doctors advice ,,it's not so easy for you to poggle on down to McDonald's these days I suspect .or pop in for the Amber nectar on the way home ..life is sweet when we accept all it has to offer in a positive mind set ! Love of family and good friends as you know better than most ,lovely boy ! You keepin touch with mother hen. I think of you ......twinkly. Xx💜
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