วีดีโอ

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.

I'm so pleased to hear that - thank you! I'm a few years removed from the process now, but it's honestly amazing to know the videos are helpful to people who are where *I* was 5 years ago

I'm so pleased the vlogs have been helpful!!! Happy new year to you 🙂 I shall keep fingers crossed for you that HSCT is agreed as an option for third line treatment. Are you UK based? MS has behaved itself since my treatment - more than 4 years ago now! I've had a few symptom spikes - caused by stress or underlying infection - one of which led to a relapse query and MRI. It wasn't a relapse though. So that means 4 years clear... pretty good, given as I was relapsing roughly every 18 months before that.

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!

Hi Georgina! I am very well now - crazy that (nearly) 3 years have gone by... I have got another 8-10 vlogs on the drive, ready to upload... (which I'll get to doing one day!) But yes, those videos aside, you're right - I should definitely do an update video!! To answer - yes, I'm ONE HUNDRED PERCENT happy I did it. No relapses since treatment (whereas I was having roughly 1 year prior to HSCT). I completely understand it's not for everybody, but it was definitely right for me. Keeping fingers crossed for you re the trial!! When will you find out?

@@HSCTforMS thanks so much for your reply. I have contacted Professor Hobart and have requested if I could be considered for it. The trial which is currently on they are not recruiting for atm but they are treating people off trial. There is the MDT meeting on Tues so fingers crossed I will be considered. I have only had the one attack since showing my first symptoms a year ago, since then I had a flare up but no new symptoms. My brain is showing lots of lesions though so the disease is active. Im really hoping that although I’m very early on in the disease if I can get a super aggressive treatment I may well stop it taking hold. That’s absolutely amazing that you have had no further issues, you must be absolutely over the moon and feel like you have been given a complete second chance in life ☺️ I’m sure many of us would love to see the outstanding blogs when you get a chance 🤞🏻

​@@georginaandersen1737 Professor Hobart was fantastic. Very proactive - and talked to me about the benefits of an aggressive treatment early on, before symptoms become permanent. The overall criteria for me wasn't necessarily the activity, but that the activity occurred as a failure after Lemtrada. However, I know they don't give that anymore...so I'm not sure I really, really hope you get some good news after their meeting!!

Thanks so much, Charlie. I'm so, so pleased they were helpful 😊 Forgive my sketchy memory, but 4 months post transplant...you're home, but in isolation - and definitely still on a neutropenic diet?! I really hope you're ok, and that everything went well for you

​@@HSCTforMShow you doing?

Hello sir,please give us a update we researching this option,do you feel the progresion is halted what is your situation and owerall verdict as of today. thank you

Also I must say one of the coolest things I’ve ever seen in my life is when monkey (lol) made you a map home how sweet is that?

Hi Davsey. Thanks so much for your very kind words - it means a lot. The vlogs don't actually stop at 27...I have another half dozen or so sat, edited, on a hard drive. I just need to have a window where I'm not editing client work and I'll get them uploaded (if it helps, I don't think they're particularly interesting 🤣) I hope your sister is well. Is she in a position to be looking at HSCT as a treatment option? And you're the first person to ask about camera stuff! Thank you 😁 (I told my wife someone would care! 😂) I used a Sony A6400 with Sigma 16mm 1.4. With a Gorilla pod, Rode Video Micro and a Boling RGB panel light.

Sorry, replied with the wrong account! 🤦‍♂

That’s cool that there are more videos no rush I’ll be watching when they are there, My sister is almost 60, she has some walking issues and uses a walker, she takes no meds other than something for her restless legs. She had mentioned that she want to try stem cells. I think if she watched your videos and seen Just what was involved she might run for the hills but I still want to learn a little bit about it. Nice camera stuff by the way. Thank you for answering my comments I know your busy. How are you doing after the treatment.

I'm soooo pleased it's been helpful! Cray to think that you're in *exactly* the same place I was a few years ago!!! (Did you find the vlog, or did they tell you about it?) I had no idea what to expect, and couldn't keep it in my head, no matter how many times they tried to talk me through it🤦‍♂...which is why I wanted to vlog it all. They'll have so much more experience with MS patients now than what they did when I was in (I remember the nurses being often surprised at my blood numbers 🤣) Massive good luck!!!!!

@@HSCTforMS we actually found your videos from researching about the treatment when we were first told he was going to be having it! 😊 The whole team of doctors and nurses on braken and birch ward are absolutely amazing and so kind, I believe some of them remember you haha (from what my partner has said) I think he might have the same consultant as you had or something 🤣 Thankyou so much for the well wishes 🌟my partner is home for now until about 3 weeks time when he gets admitted for the next step of the treatment so trying to relax while we can and prepare for the next phase 😊👍🏼

@@shikari8612 Ohhhhhhh, must have been quite a surprise, finding a vlog (one of the *only* vlogs, if nothing's changed dramatically from when I searched 4 years ago) - being filmed at the hospital he was due to have his treatment in! Dr Hunter (consultant haematologist) is lovely. And Juan (senior haematology nurse) is also lovely (even if he did get a bit cross as me a couple of times 😂) I hope the 3 weeks go ok. I remember the hair falling out, like clockwork... Good luck with activation injections as well. I'll be thinking of you both in the coming weeks. Massive, MASSIVE good luck

@@HSCTforMS yes it was a huge surprise, couldn’t believe it was filmed in the exact same hospital as well haha 🤣 And yes! He has Dr. Hunter and Juan on his team of specialists, I’ve only met juan so far and he is brilliant 🥰 So far not much hair loss which is surprising but I’m sure that will start happening further into the treatment, and he got on alright with his injections too only started to feel the bone pain on the last day which was good 👍🏼 thankyou so so much again for your well wishes, we both really appreciate it 🥳 hope you’re doing well!

It's so hard with kids. Your 14 year old will be able to at least understand it, even if it is emotionally rough. But I know my son was 4, and we spent a LOT of time trying to prep him (got him books about parents going into hospital, got a Playmobil hospital, role played it, got him involved in prepping for treatment etc)... It helped. I think. But after a week, he would still cry and get upset most evenings when I wasn't there at bedtime. Video calls helped a lot! And I sent an *enormous* number of silly videos to make him laugh - he'd then send stuff back, and it made the time apart a little easier.

Thank you for the kind words, DuckyJoJo1! I had myeloblative. I'm so sorry to hear about your relapses since Lemtrada. I failed three times after 3 rounds (1 after rd 2, 2 after rd3) before starting HSCT. I hope you get started with your treatment soon... 3.5 years (ish) post transplant now - I feel good! No relapses. No improvement on old symptoms, but no further degeneration (which I take as a win)

Thanks so much, Tessa - the feedback is very kind, and it's wonderful to hear that the vlogs are even a tiny bit helpful. Massive good luck for your treatment. I shall keep fingers crossed for you :-)

And under Dr Hunter 😊

Dr Hunter is amazing, and super lovely! Massive, MASSIVE good luck to your son as well. It's a rollercoaster few months - but he's going to be so well looked after. (I always find it kind of amazing when other Derriford patients find the vlog...what are the odds?!)

@@HSCTforMS I take it you’re doing well still? Dr Hunter wouldn’t tell us how you were - confidential, I understand, but it’s SO good to get your reply 🤗👍🏻

@@lesleysmith5169 I am good! No relapses! 😊 I've not seen Dr Hunter since mid 2020 (please pass on my best, and tell her how lovely/amazing we thought she was). When I eventually finish editing from last summer, I'll do a 3 year update video 😁

@@BabaluFilmsCornwall It’s so great to hear you’re doing well - and we’re seeing Dr Hunter on Wednesday so I’ll be sure to pass on your kind words 👍🏻

It's all a bit strange looking back at it - I never *meant* to stop (at least, not when I did). I still have 4-5 vlogs sat, fully edited, on a hard drive. When everything when crazy with Covid, I had a bizarre uptick in freelance work, so the blog got parked... then Covid went on forever, I started weddings again (2 years worth in a 5 month period nearly killed me), and haven't stopped working since! I should do a 2 year update, at the very least (short version - I got some of my hair back, was blessed with a beautiful IVF baby, aged like a human/prune hybrid, and haven't had a relapse since :-)

@HSCT for MS It's lovely to hear about your positive outcome. A short final vlog would at least reassure anyone watching that things ended as well as expected (no relapses!) One could conclude that the rituximbab was so awful you couldn't bear to film it! I'm knocking about waiting for my admission in 10 days time, in isolation to ensure I don't get flu or covid!

@@menaruparel2013 Are you in Plymouth?

@Lesley Smith no I'm not, London having my HSCT right now

@@menaruparel2013 Wow! Good luck, prayers and I everything crossed for you! How are you doing so far? I hope you have some lovely nurses and doctors looking after you! Please keep us updated on your progress 🤞🙏🏻😘

I know!!!! When I got out (and very quickly the world went insane), I realised how lucky I was to have a 'normal experience with it all. With my wife working in a hospital, I know very well how prevalent Covid is again (and how resurgent flu has been this year) - I imagine everything is insanely stringent now...

That's very kind of you, Eva. Thank you :-) From round 1 chemo (not including the initial tests or neuro appts etc), to being at home, to stay, with no more unexpected hospital stays...three months...ish. I think about 6 months total if you include follow up clinics and discharge

Thanks, Brandy (Apologies for the delay in replying). I did 3 rounds of Lem (failed after 2nd), came out in hives each time - not fun. But it sounds like you had it far worse... I actually felt more rough after Lemtrada than HSCT. But it lasted *much* longer after HSCT - I wasn't back to 100% for months and months

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!

Hi Louise. I'm so pleased they've been helpful! (I always thought that if they made a genuine difference to even one person, they'd be worth it). I shall keep my fingers crossed she gets accepted! And then cross the rest of my fingers/toes/limbs the treatment goes well if she does 🙂

Thank you. X

Thanks, Tiffany. I'm doing really well! Not forgotten about all of this - not at all (even though it feels like a lifetime ago now). There are still 7 or 8 more fully edited blogs sat on on my hard drive... Basically, weddings started again - and I was very much not prepared for the workload. Only finished 2021 weddings in late March...just in time for 2022 weddings to start! I plan to pick up again when edit slate is clear. But if it helps, the next few aren't all that interesting 🤣 (I sleep a lot through Rituximab and try to get funding to turn the vlog into a documentary)

Hahahaha! Charlie has had a significant bit of artistic wall space for about 5 years. My favourite is a 4ft framed poster of his painting "Milky Way Creation". He's like a galactic scale Dali!

@@HSCTforMS Awesome! I see a future artist in him :D

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?

Haha! Thanks, Barry. I'm glad I'm not alone - 3 years later and my wife still insists I am quite mad.

@@BabaluFilmsCornwall ​ I got you're Weird comments. Sure look it nowadays, Grew my hair out below, long, 3 inches below my shoulders along with dying it mix of colours. MS can be a bit dull, boring and depressing so the colour brightens my day :) Watched all the vids, big thanks for that it has been quite informatative. Couldn't finish the Hickman vids though. Assuming I get accepted that'll be the worse thing for me, besides any hairloss I may get. Can't be bothered to hop between vids find which one mentioned getting waxed when things got removed so going to add a comment about that below. If you have a cannula or anything taped to your skin/hair have them remove in the natural direction the hair goes not against it.

Ohhhhh, I *love* the idea of growing my hair like that. And the colours! (Sadly, my hairline did not ever fully recover from the chemo, lol) Thank you for watching all the videos. I'm very aware it's a lot of my face... Hickman really isn't as bad as you think. And you'll count your blessings you have it when they're running 900 lines into you. Soooo much better than 4 cannulas. And that's a good tip re hair and medical tape wax jobs! Sadly, I think I'm 20% yeti. The hair (provided it is not on my head) grows lustrous and wild. It is angled in *ALL* directions! Haha!

@@HSCTforMS Changed display name for comments but wanted to update that I'm going to be starting Cyclophosphamide 26/11/22. Will be doing it in stages, 2 weeks from admission to Harvest is the plan and then Feb/March for second half. Kinda can't wait but also dreading it at the same time I tend to have my worse relapses leading up to Christmas and hoping autoimmune system can't be attaching nerves causing a relapse once I start 🤞 Oh and mentioned your Vlog to the Doctor and specialist Nurse and they had no idea about it or that it's linked on MStrust website. Maybe they'll suggest it to future patients and get you some more views

Ahhhh....it is a completely British anomaly then! I am now conditioned to it though. Somehow it hurts more if they don't say it! Haha!

I'm an American nurse and have never said nor heard that before hahaha 😂

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?

Hi Beth. Thank you soooo much for your very kind words 🙂😊 I'm really pleased the vlogs helped. I hope everything went ok with your treatment? (During the pandemic?!?! I can't imagine how militant you had to be with isolation...) Thank you for passing it on to your nurse. And thank you for reminding me of my (terrible) attempt at a catchphrase 🤣🤣

I love these vlogs - I haven’t watched them all yet but I will. The energy and positivity is certainly palpable - essential when a family is facing this treatment! How are you now Bethany??

There are - I was sent home with an enormous bag of anti virals, antibiotics and anti fungals.... They just didn't work! After this readmission, when I got home, I was basically ill non-stop for about 4 months. Then things settled.

@@HSCTforMS ow ok. Hope you are good now!

Very kind of you to say - thank you. I'm glad you've enjoyed them

I'm quite far removed from it now (18 months!). The whole thing was kind of like a weird alternative life experience. You could absolutely do it!!!

I felt normal a few days after rd1 (and that stayed, even after hair fell out etc). After the in hospital stay, I think I felt normal-ish a few weeks after being home. Massive good luck to your dad!!

@@HSCTforMS thank you so much. Do it want you lose weight or change the way you eat?? I have watch your videos on youtube. But i know everybody different far as the side effects

@@3eyesme675 I obviously had to follow a restricted diet for 6 months. And the chemo/steroids mess with your taste buds for a while, so I went off some foods. But after that first six months, I went back to eating what I did before!

@@HSCTforMS ok thank you so much. You have been very helpful

Thanks so much, Liudvika :-) It took a couple of weeks... but it was a super power that stayed for several months! As silver linings go, it's a fairly odd one!! I shall keep my fingers crossed for you

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 :-)

Hi Mihai. Please do, go ahead. Happy to answer questions if I can - but it's worth stressing, I can only go on my own experience. I'm no expert, and protocols differ between centres!

@@HSCTforMS thank you for your kindness . Email will be m1ha1_r92@yahoo.com And facebook Roșu Mihai .

I'm good, thanks Nudrat. I'm back to the baseline I had (outside of relapse) before the treatment started

So was I. It really was horrid going in. And for the next 2 hours. But you do get used to it. And when I saw how much the bags fill up after the fluid + fruzemide (incorrect spelling, no doubt), I was thankful for it. Otherwise, it was a massive pain in terms of getting around - getting it out brought genuine joy!! Massive good luck for your treatment

That's amazing! I'm really pleased for you. I was ill about 200 times in the 4 months after getting out - but thankfully not much at all since.

Nice! Did you got poet HSCT prophylactic medications as antibitoics and antivirals?

@@lush462 yes, fluconazol the first month, Bactrim the first three months (delayed start after 2ish weeks though), and acyclovir for a full year :) still no infections.

What?!?!?!!? Really?! Wow. That's amazing. I slept like a toddler on and off for the few days afterwards - you are clearly made of tougher stuff!

Ha, I had no option!

@@catladycath can I contact you plz ?

@@aymenahmed8781 yes of course. Ask away.

Thanks, Laura - she *is* brilliant! I strongly recommend everyone gets themselves a nurse wife. Infuriating, stubborn, but brilliant. If you don't have one on hand, it's worth asking a nurse on the ward to take the job!