HSCT for MS vlog #27 - Flu swab *INTO MY BRAIN*, EBV virus discussion

Kirsty (the very nice Healthcare Assistant) tries to put a flu swab so far up my nose that it tickles my brain. Some discussion about the EBV virus, a doctor who isn't listening to any of my nonsense, and I sign my consent for the treatment, Rituximab.
**Treatment vlog, as I underwent HSCT for MS through the NHS, at Derriford Hospital, Plymouth (October 2019)**

[@bethanytully8928]

I'm now 7 months post stem cell transplant at kings college hospital. I just wanted to take a moment to say thank you for posting these videos. It really helped me feel prepared whilst waiting to for my transplant in the middle of the pandemic (possibly the worst timing ever! 🙃). I told my transplant nurse about the vlog and she has added it to useful info for patients to help other people awaiting stem cell therapy for MS. I really hope you're keeping well. Keep smyelin! 🙂 Beth x

[@BabaluFilmsCornwall]

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 🤣🤣

[@lesleysmith5169]

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??

[@maeb.1097]

Thank you for sharing

[@menaruparel2013]

Thank you again for filming this process and with such good humour. I felt sad you stopped and hope you are well and that this is all a fading memory for you and your family. Best wishes.

[@HSCTforMS]

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 :-)

[@menaruparel2013]

@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!

[@lesleysmith5169]

@@menaruparel2013 Are you in Plymouth?

[@menaruparel2013]

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

[@lesleysmith5169]

@@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 🤞🙏🏻😘

[@C_harlie_J]

Hi Chris, I hope you are well, about 4 months ago I was in hospital having my stemcell transplant! And having you to watch helped me want to do it:-D so thank you so much for this film! Kind regards, Charlie J

[@HSCTforMS]

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

[@thres34]

​@@HSCTforMShow you doing?

[@iss8258]

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

[@evawoodford]

I’ve watched all of your videos. Thank you so much for being so educational and thorough! About how long would you say this whole process took??

[@HSCTforMS]

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

[@DuckyJoJo1]

These are very helpful. Honestly I really do appreciate these vlogs. I am considering going into a trial for HCST. I'm 2 years post round 2 of Lemtrada. I'm not going to go through a 3rd round as I did not react well at all during treatments.....it was crazy rough. Like CRAZY rough

[@HSCTforMS]

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

[@aymenahmed8781]

wanna ask plz answer back after hsct do u still have ms attacks and did it helped you with ya symptom's if yes could u give me from 100 how much it helped you , i would realy be happy if you replied with answers

[@lesleysmith5169]

My Son is having HSCT for MS at Derriford Hospital in a few weeks. I hope he finds the positivity and strength you show in these vlogs 😊

[@lesleysmith5169]

And under Dr Hunter 😊

[@HSCTforMS]

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?!)

[@lesleysmith5169]

@@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 🤗👍🏻

[@BabaluFilmsCornwall]

@@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 😁

[@lesleysmith5169]

@@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 👍🏻

[@sergioblumeersensitivotarot]

Hi from Madrid, Spain!! I am 29 year old, I'm just diagnosed with MS, only had last year pain in my eyes and since April, numbness in my feet and legs. I heard you said you only had sensitive relapses, so how could you treat yourself with HSCT? Would you recommend this treatment??? Are you having some medicine for MS now? You feel good? Mucha mucha suerte amigo, puedo sentir cómo te sientes \ a lot lot of luck friend, I can feel how you felt. Abrazos. Hugs.

[@aalss]

It’s now 2024, Happy new year ! Hope you are well! How has the ms been since your HSCT. I am currently waiting to find a third suitable treatment and HSCT is likely a possibility for me. I came across your vidoes and it had been enlightening watching your vlogs :)

[@HSCTforMS]

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.

[@georginaandersen1737]

Hi Chris, thank you so much for sharing your journey. Can I ask, how are you now? Was it worth it? I hope you are well 😊 I’m in Mid Devon and there is a HSCT research trial due to take place which I have requested to be part of, slim chance I’m sure but I’m now doing my research all about it hence finding your videos 😊

[@HSCTforMS]

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?

[@georginaandersen1737]

@@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 🤞🏻

[@HSCTforMS]

​@@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!!

[@davsey133]

Hello sir, I do not have MS my sister does I found your Vlog from number one all the way up to number 27 just incredibly awesome. I thank you so much I learned so much from these videos. I hate the fact that number 27 was the last onel I hope you’re doing well, and again, thank you for all your kindness and your humor is awesome . I enjoy photography quite a bit. What camera were you using and what lens? It looked fantastic

[@davsey133]

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?

[@BabaluFilmsCornwall]

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.

[@BabaluFilmsCornwall]

Sorry, replied with the wrong account! 🤦‍♂

[@davsey133]

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.

[@catladycath]

I flew home from Mexico the day after my Rituximab!

[@BabaluFilmsCoUk]

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!

[@catladycath]

Ha, I had no option!

[@aymenahmed8781]

@@catladycath can I contact you plz ?

[@catladycath]

@@aymenahmed8781 yes of course. Ask away.

[@3eyesme675]

My dad starts his chemo today. After a year do you start to feel normal again??

[@HSCTforMS]

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!!

[@3eyesme675]

@@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

[@HSCTforMS]

@@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!

[@3eyesme675]

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

[@mastringminds]

How are u fealing now?

[@HSCTforMS]

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

[@LittleDogLV]

It’s been over a year since your last video. I hope you’re doing good but I’m going to take this as a not doing well at all or you’ve gotten so well that you’ve moved on and forgot all about this

[@BabaluFilmsCornwall]

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)