HSCT for MS Vlog #1 - Stage 1 Chemo
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- เผยแพร่เมื่อ 9 ต.ค. 2024
- Treatment vlog, as I underwent HSCT for MS on the NHS, at Derriford Hospital, Plymouth.
As the start of the vlog, this episode covers the first day of treatment - Stage 1 chemo, and includes some input from 'future' Chris, 4 months later.
This is my first vlog. Please be gentle, TH-cam.
This is so well made and incredibly informative, I'm sure this will help alot of people.
Massive thanks, Luke. I really hope so.
Hi there, thank you so much for doing this, I will be going for HSCT later this year, so I am so grateful for you to have done this! Cheers, CJ
I'm so pleased you've found the vlog helpful! I remember searching for hours to find something before I started Stage 1...
Massive good luck for later this year!!! I'm nearly 3 years post now, and it feels like a lifetime ago.
@@HSCTforMS Love to hear that! How do you feel after the procedure?
Super helpful, thanks. I go in for day 1 chemo tomorrow and hopefully understand what I'm in for.
Hi Mena. Thanks so much for your comment - I hope it all went ok? How are you feeling?
I think everyone's journey is different. But if it helps at all, the vlog follows things right the way through until full discharge 🙂
I shall keep fingers crossed for you
@@HSCTforMS all went well thanks. I've watched quite a few of your vlogs and so far they tell me everything I need to know. Btw my GCSF injections are pre filled so no faffing with drawing up the meds!
So very human and honest. It’s funny and I’m sure takes away the fear factor for people. You’re very brave.
I’m from UK but live in Singapore and got diagnosed with MS back in March and the neuros here have suggested getting the HSCT done so thank you. I have epilepsy too so hoping the treatment will stop both in one go. I can go back to a normal life of photography but in these uncertain times I doubt that is possible. But living a normal life with my family is one thing I hope that can happen disease free. So thanks for providing this content for people like me to watch and understand that whole procedure
Oh, wow. So you can potentially access HSCT as a first line treatment in Singapore? You're a photographer? What a nightmare - all my freelance friends (and myself) have been hit really hard by Covid. I hope you're ok.
Really glad the vlogs have been helpful. Massive good luck with trying to arrange your treatment.
HSCT for MS well it can be asked for but Dr’s won’t always go for it if your too far gone or don’t have the certain criteria. I am getting it because I am in early stages and doctors would like to try medications but I chose to go straight for this procedure because I have epilepsy too. I have not been able to do any travel this year at all because of the C-19 I had plans to go to Canada and Japan but those got cancelled. I have been in isolation since February with the occasional visit to the hospital to get bloods done and heart done etc all procedures to see if I am well enough to go ahead with the HSCT. All is looking fine so far but it has knocked my interest for photography quite hard and I haven’t used my camera for sometime now 😏 I am doing ok mate that’s the thing the whole diagnosis was a big hit for me and I didn’t take it too well but I am ok. Cash wise this thing is hitting like a ton of bricks and especially living in a place where it isn’t very cheap and nobody wants to buy any prints they just want to buy food to stock they’re shelves. Your videos have given me hope mate so keep them coming I look forward to watching your story. I too hope I can get through it as easy as you did 😄how are things in the UK now?
Thank you for this vlog your brave. I've had Ms for 26 years I could not do what you have done. Ex nurse here and I don't do sick so I agree with your wife.
That's very kind of you, Elizabeth. I just kind of plodded on with it in my little bubble - my wife had the much harder time of it at home!
I hope you're well :-)
You and your wife are so brave. I have highly active MS, and started Ocrevus in January after Tecfidera didn't work for me. I've been looking into HSCT for around a year now and this was really informative, so thank you for posting this video series.
Thank you so much, Daisy. I'm really pleased the videos have been helpful. Good luck with Ocrevus - I've got a friend on it and he speaks of it highly.
(My wife and son are brave. I'm really just a forward going horse, and trudge onwards!)
Thank you so much for this content. I truly appreciate your candor and inside look.
Hi Carolyn. Sorry I missed your comment.
I'm very, very pleased that you've found the vlogs helpful. I felt like a proper plonker while filming them, so I'm glad some good has come of it!
@@HSCTforMS just completed my transplant in the US. Anxious to hear an update on how you're doing. I'm +18 and knackered wondering when it gets better. Sending you all good vibes!!!
@@carolyndeming6184 I'm sorry to hear you still feel run down. It's only with hindsight I can say, but I think I was less than 100% for a loooooong time afterwards (although in my head, I was 'fine' after a few months)
My understanding is that it's different for everyone. And that there's a bit of a rollercoaster than goes with it. Have you posted in any of the HSCT Facebook groups (they're really good!) to a get a broader sense of recovery for most people?
Really useful video, I am having HSCT in May in Mexico, and this is what I need to see - warts and all, not dressed up, just saying it how it is. So thank you for posting it
Thank you so much, Catherine. Huge good luck for May (it'll be here before you know it) - I've heard a lot of good things about Mexico!
@@HSCTforMS I hope it will cure MS
Did you have the HSCT Catherine? X
Yes, it was 2 years ago last November. Have you had HSCT?
@@catladycath Not me, my son (24) is having it. Day one of chemo today (nhs). How are you feeling now? Sorry to be nosey 🙂
Great video! Grateful for the inside peek. The humor helps a lot :)
Thanks, Joe. My wife assures me I am not funny in real life, but much can be achieved with the power of editing!
Thank you so much for sharing your experience.
Glad it was helpful! :-)
This is so very interesting and well made. You are so incredibly brave and a complete inspiration.
Hello Chris, I’ve watched all your video’s and would love to ask you questions about your treatment.
Hello! Very kind of you to watch 🙂 (Also, it is a lot of my face, I can only apologise!)
It's been a few years now, but feel free to fire questions at me!
You are a true inspiration 👌👍
Very kind of you, John. Not really - all strength and inspiration comes from the wife (and bypasses me entirely!)
Behind every great man is usually an amazing wife.
Keşke türkçe çeviri de olsaydı daha iyi anlardım. Geçmiş olsun
very interesting, thank you
Thanks, Malachy! Not quite sure it reached 'interesting', but I will keep trying!
@@HSCTforMS I had HSCT for MS at Barts London and was really impressed with your story. Hope you're well and looking forward to watching the rest of your journey. All the best from Ireland.
are you healed?
Not 'healed'. Even at it's most effective, HSCT isn't a cure. But, I've not had a relapse since treatment (5 years now). Whereas before it was generally once every 18-24 months... Fingers remain firmly crossed that it stays that way.
Hey, can you please give me some form of contact, as I have questions regarding this treatment.
Hi, happy to answer questions if I can. If you give me your email address, I'll send a message to you direct and we can go from there :-)
@@BabaluFilmsCornwall hey my email is, Hamzamatloob@live.co.uk
Such a simple movement but SO EFFECTIVE! Why am I only just learning this at 53 yrs old??!🤣