Hi, everyone I’m Emma
Helena
And I'm Helena. And we both work at the MS trust. And as you might have heard before, we're recording this because of Coronavirus and social distancing. So apologies if the sound is a bit iffy at any stage, please bear with us.
Emma
We'd like to welcome you to our latest podcast, multiple sclerosis breaking it down. And this episode on HSCT.
Helena
HSCT has featured quite heavily in the media recently with celebrities like actress Selma Blair, even sharing her experience in the documentary introducing Selma Blair. But what exactly does this group of letters mean?
Emma
So luckily, we've got Claire, the head of information and engagement here with us today. And she's going to explain a little bit more about this. Hi, Claire.
Claire
Hello. So HSCT. It stands for hemopoietic stem cell transplantation. And it's also known as ahsct. And that adds to a at the beginning, just stands for autologous. And that means that the stem cells that are using the treatment are obtained from the same individual. So they are in fact, your own stem cells. So HSCT, or ahsct, can be used in all kinds of treatments for different conditions, including cancer, and, of course, multiple sclerosis. And the aim is essentially to reboot the body's immune system so it no longer attacks the myelin or causes inflammation in your brain and spinal cord, which is quite revolutionary when you think about it. What the what the treatment does, they aim to, they use quite high doses of chemotherapy to largely wipe out your existing immune system. And then they rebuild it with fresh stem cells, which had been collected from your blood.
Helena
An amazing treatment really. So thanks, Claire. And as you know, with MS, no two people's HSCT experience will be identical when we've been lucky enough to speak with two different guests who've both received the transplantation. So let's hear from them. And what they have to say. First up is Chris, who had HSCT on the NHS in Plymouth.
Emma
Hi, Chris, it's lovely to speak with you today. Are you able to start off by just telling us a little bit about the start of your MS journey and include things like your initial symptoms and your diagnosis?
Chris
Yeah, of course. So MS. The Journey sort of began about 15 years ago, I was 21. And I was doing a PGCE. So I was quite young comparatively. And one day I woke up and I couldn't walk straight. So I just was walking sideways. It was like I was drunk all the time. And other things I would slur speech, I started to notice my memory wasn't very good. And I had a slight sort of blurring of vision. Initially, I didn't really have any clue or understanding of what it was I went to the doctor quite a few times went to the GP. And they told me I had a middle ear infection. I think all in all over the period of like a month, I went maybe five times. And I got to the point where I was kind of thinking that there must be something psychologically wrong with me like if I've been to the GP this many times, and they didn't think it was anything real or anything significant. That is there something wrong in my head that's making me behave this way. And it was only when I went to go see a locum doctor and my wife, who was a student nurse at the time, suggested to them that I might have an MRI, they put me forward for that. And then I had a lumbar puncture the MRI, and then obviously diagnosed was clinically isolated syndrome. And then it was about 18 months later, I had first relapse and official MS diagnosis.
Emma
So if you hadn't sort of heard of MS. before that, what were some of the initial thoughts and feelings that you had when you were given that diagnosis.
Chris
I had heard of it a little bit, not a huge amount. I mean, it's not a culturally prevalent is something that people are acutely aware of. There's no sort of there are obviously famous people, they've got it and it's in the public consciousness to a degree. But it's not like a number of other conditions. So I knew a little bit. The extent of my knowledge was that President Bartlet on the West Wing had MS. And that was everything I knew about it really. So when I got the diagnosis, I was kind of I was kind of shocked. Obviously, I expected it after clinically isolated syndrome, there's a there's a very good chance you'll end up having a relapse and being diagnosed with MS. But when she told me, I didn't really have much reaction to it, initially, my wife was the guide girlfriend at the time, my wife who she would become react a lot more strongly. Obviously, she'd worked with people who were older and who had been through MS for a lot longer and were much further down that journey who were quite considerably disabled. And so she was quite worried about it. But I was kind of numb initially, or at least I thought it was and it turned out I was I hadn't really realised I didn't really realise that on reflection. It kind of spun me quite a bit for about a year afterwards. And it was only it took that kind of time to kind of come to terms with it and where I might end up and where I was statistically likely to end up and I yeah, I didn't do I don't think I dealt with it especially well, but I dealt with it fairly quietly.
Emma
Yeah, I heard that a few times recently people saying that their reaction was perhaps smaller than some of the people around them, because maybe they know more raw things like that.
Chris
Yeah. There wasn't actually… there were no big sort of, oh, no, I've got this. I remember telling my mum, my sister, and I didn't tell him for like a couple of months. Actually, to be honest, I didn't say anything to them. Because by this point, the relapses were kind of done, my mum had had, like a stroke, which was kind of the stressor that it's kind of what set off the first relapse. So I didn't want to tell her, I want to make her more stress. She was only just home at that point. But what I did tell them, they both kind of had a bit of a worried meltdown. And they sort of cornered my wife and started asking questions and stuff. And I think for a lot of people with MS, at least, I assume, so managing other people's worries and concerns about it is something, in a lot of ways. I'm more concerned about the my reaction to
Emma
So going back to you personally, what are some of the symptoms that you commonly experienced as someone with MS? And are there any things which you find might improve or make the symptoms worse? So some people, for example, find that heat can change their symptoms and things like that
Chris
Yeah, so in terms of my symptoms, outside of relapse, I've been quite a lot of relapses quite fast. I'm quite fortunate in the image, huge look really, really big. So the highest I've been in terms of on the EDSS score was 4.5. And that was a relapse. But when I got diagnosed, I got referred for HSCT. Outside of that, sort of 1.5 to two. So currently, I get some numbness in my feet, specifically, my big toe on my left foot, numbness in my hands, that's always there. My memory is the biggest one, my wife says it's like living with somebody who has early onset dementia, which is blissfully unaware.. in my head, I remember everything appropriately as somebody of 35 years should. But She assures me that it's pretty terrible, which is the biggest frustration for everyone around me. In terms what makes it worse, drinking. So if I go on a night out, I'll have not only a normal sort of mid 30s hangover, but also an MS hangover for a few days afterwards, coordination won't be very good, that kind of thing, every bit worse, fatigue, that kind of stuff. And in terms of what makes it worse, overall, me drinking is sort of sharp spikes, but stress. So I do weddings over the summer, and I work a lot of freelance stuff. And during that time, it's quite busy, quite stressful, that will tend to bring in more symptoms. And then when things come down, again, that tends to go away, heat will do something fatigue, but I'm not as badly affected by heat, as I know that some other people are.
Emma
And so you sort of mentioned your HSCT referral. Before we get on to that. Did your MS. Team discuss any DMD options with you? I think I read in the bio of one of your YouTube videos about you try and lemtrada is that right?
Chris
Yeah, we made like way back in the beginning.. so are you looking back a while ago now?
Emma
Yeah.
Chris
So way, way back in back. The first things that were offered the DMDs was given like pamphlets, stuff from pharmaceutical companies about Avonex rebith and some of the complex and I agonised over what I wanted to do for quite a while. In the end, I think I went with rebith. So injectables three times a week, sort of, you know, and anybody watching I imagined would know the flu like symptoms and all that kind of stuff. And then I went on to Avonex, similar efficacy rates and 33% reduction in relapses. And then after I failed on that, twice, they referred me for lemtrada. So I did two rounds of lemtrada, and then fails about eight months after the second round. And then at that point, I was given the choice: HSCT, which my MS nurse wasn't, like, hugely ofay with, but my wife, obviously nurse had researched an awful lot. Choice of HSCT, or a third round of Lemtrada, and I opted for a third round of lemtrada again. And then it was kinda like, well, there's no, there's not really any other choices. I could do that, or I could do the monthly infusion. So but yeah, it was HSCT seemed like the most heavyweight option. Statistically, I was told lemtrada, you know, it's an 80% reduction in relapses over five or 10 years, you know, my neuro who was involved in the first study for lemtrada told me that, you know, they have very, very high hopes for it. And that didn't really pan out. So presented with HSCT as the choice I played it safe with lemtrada when that failed. I kind of felt like I only really had that option left.
Emma
Yeah, so you'd sort of given it a fair go with all the other options first.
Chris
Yeah, yeah. So I know that there's discussions about whether or not it should be offered as a first line treatment, you know, you approach it aggressively and try to sort of intervene before disability and onset of symptoms becomes more permanent.
Emma
You mentioned that your wife knew quite a lot about HSCT. And she'd done some of the research for you. And was that so when you first heard about it, or where did was it from your doctor's mentioning and suggestion of it?
Chris
Oh, wife, my wife told me about it first. And she done quite a bit of research. I don't know how long it's been around as a treatment. But I'm aware that it now is becoming more prevalent. But it has been around in place in terms of clinical trials for a while. And my wife finds like clinical trials and those kinds of journal articles quite interesting. So she's looked into it quite a bit. I mean, around the same time that I was first talking about it, I think, if memory serves, there was the you know, that panorama programme, Can you cure my MS, which I never actually saw, even though even though it was it was relevant to me at the time, I think I kind of subconsciously chose not to watch it. But by the time I chose to do HSCT, and I wanted to watch it, it was it was already gone. But, you know, my wife was the one to tell me about it first. Obviously, with it being more risky treatment, I think it's something that maybe a lot of professionals who've been in MS care for a while, are gonna be more reticent to recommend in terms of risk benefit, that kind of thing. I don't think they push it and maybe don't know as much about it, as perhaps they do other treatments that have been around for a lot longer.
Emma
Yeah, I think that's true sometimes, isn't it? So where did you sort of find some of that information? Do you know any of the resources? Or was it just sort of a scout on Google and things?
Chris
I think it I don't know entirely. So my, my capacity to interpret those kinds of medical journals is quite limited. But my wife generally gives me the abridged version, she printed off loads of stuff. So she went to work. And she had like, thrown off, like 20 articles, looking at the benefits of HSCT and comparing it to other DMDs. And she gave it to me to read, which I did. But she didn't give me the summary. When we had a discussion later on. I don't know where she looked, obviously, being a nurse, and she has access, I assume, to those kinds of medical journals that perhaps most people wouldn't immediately find on a quick Google search. But I'm afraid I don't know. I'm very sorry.
Emma
yeah. Some people are just like, really medically minded, aren't they? And they can kind of take in all that information. And they know what it means that Yeah, I can't do that.
Chris
Yeah, no, I it's a real benefit. I'm fully aware that most people don't have the advantage of a nurse wife, you know, and I said this, I said this in the blog, and I said this an awful lot over the last 15 years of having MS. If it were me, I'm like a head in the sand forward going off. So I'll just trudge forward just sort of plodding forward and enduring or going through whatever happens, and making the best of whatever information I get, I probably wouldn't have sought out as much as I should have, I'm aware that a lot of people with MS become their own sort of advocate, and they do a huge amount of research. I don't know whether it's a conscious thing, whether I'm just really lazy. But I don't tend to do that, because I have the advantage of a wife to explain it ultimately. So she explains, sort of, as I said, the efficacy and the comparisons. And the way that the methodology of the treatment varies in some places to another, I forget what the shorthand for is, is it miablasive and non miablasive. The idea there's two different kinds of HSCT in the way in which they approach the chemo. And she explained the sort of the efficacy differences for those two. So yeah, I had the benefit of all the information that and the, the benefit isn't just being given the information I mentioned, a lot of people get that from neuro, she knew that she could had to explain it in very, very simple terms, for me to understand it, and to explain it again and again and again. And as I say, I don't think a lot of people would get that.
Emma
That's really handy. So obviously, HSCT is quite a divisive subject, people have really strong opinions on it one way or the other. What were some of the things that you had to consider when you thought about having the treatment.
Chris
So number of things. So I was I was fortunate enough to be employed, I do a lot of freelance work. But I also have a job teaching. So knowing that there's going to be time off work was a concern in terms of my colleagues and stuff like that. But that that was something that was fairly covered financially. I mean, I think I imagine for most people, the biggest concern is family, there's people around you that are going to have to continue on with life while you're up in hospital and going to have to rearrange their entire life around you in hospital for sort of four to six weeks. I know that in the UK, and I had the benefit of being done in the NHS, I'm aware that a lot of people looking at doing HSCT won't necessarily have that. But they have to look at self funding, which I know if I had been in that position to having to self fund, I can't imagine the kind of stress that goes into that. I mean, since doing the blog, a number of people sort of message and they asked me questions, like, like I know things. And they talk about having to fundraise and you know, doing Kickstarters and doing charity and like all these kinds of events. And I can imagine that being an all consuming stress that I fortunately didn't have to do. So for me, it was just concerned with that, like that was that was my big one. And that sort of remained my big one throughout the entire process.
Emma
And so going back to the referral process, what was that like? Obviously, your health professional mentioned that to you? Is that right or not?
Chris
So I think in my initial discussions, you have to forgive me the memories kind of fuzzy memories, not good. But I think I talked about it with my MS nurse. And I explained, because So MS. nurse asked after the failure on second lemtrada What I wanted to do, I then saw the neuro, and we agreed I was going to try a third round of lemtrada, when that happens, saw the MS nurse again. And she referred me to other neurologists in Derriford called a professor Hobart, who I think doesn't, I wouldn't say pushes HSCT. But he's a kind of advocate for the benefits of that treatment. And so she referred me there, which effectively changed my entire treatment team, up to Derriford, when to go and see Professor Hobarts, I went to go and see the people that do the chemo and she then they explained all the all the more specific risks. So it was like an hour, it was a 45 minute appointment, they were really welcoming when I went to Derriford for that meeting, I was only the second person that was going to be having HSCT there for HSCT for MS. I was the second person. So I went up there, they you know, they put aside room aside for us, they gave me coffee, they were very, very nice and very, very supportive. And they explained all the risks that would go along with having that kind of chemotherapy treatment across all the different stages from your first round, right the way through to isolation at home and the diet, you need to be on all that kind of stuff. And to be honest with you, it was a huge amount of information for me to take on board. And I took onboard very little of it. But again, thankfully, my wife was there, and she was able to talk me through it again afterwards, again, and again and again. But yeah, it was those stages. And then we booked in a time for me to go and do it. There was some level of discussion and negotiation around when I would go in, they were keen to get me in as early as possible. I asked to delay my treatment ever slightly by a few months, because obviously it was wedding season and being treated in June would cost me an awful lot of money. Whereas if I could get treated in late September, it would be quite different.
Emma
You mentioned that you were was it the second person with MS that was treated HSCT? Was that kind of something that you thought about a lot after they've mentioned that to you or..
Chris
Not really no because the professor Hobart told me that they were a fairly new centre for doing HSCT for MS. And he was the one that had talked to the team in terms of coming up with all the all the processes that they were going to put in place, and the way in which the treatment was gonna be given all of the sort of stages that were going to be involved. So I knew I was the second one. But they were very upfront about that. And they explained why they did everything. And it because they've been giving HSCT to people with cancer. I wasn't concerned about it in any way. What was interesting, obviously, when I had the treatment I was in for a while that I was told about some of the differences, the way in which MS. treat MS patients tend to present by comparison to cancer patients, which I found really interesting. But there were no concerns, per se about being number two.
Emma
So you mentioned earlier about how you felt lucky that you could get it on the NHS and obviously in the UK, and some people we know go to Mexico or Russia or various places abroad for this sort of treatment. Was that something you'd thought about? If you potentially had to go abroad? Would you have like continued with the treatment? Or was it something you hadn't really thought of?
Chris
It when the treatment was first mentioned, it was it was a referral, it was kind of clear that it was going to be NHS, so I didn't have to think about that for very long, we did discuss it. We talked about what we would do if that were the case, I mean, financially, it would have been obviously a huge, it's a huge amount of money wherever you go, and how much it costs by comparison to what it would cost private in the UK, or whatever it costs the NHS, it's a huge life changing amount of money. So we thought about it, we thought about how it might impact finances in terms of re mortgaging the house using our whatever statements we had that kind of thing. But there's say, Well, I know how fortunate I was to get it on the NHS, I really, really do understand that. And when people comment on the blogs and stuff, and they talk about having to fundraise, and they sort of talk about how big a decision is for that kind of thing. That's such an extra factor to have to think about, well, I just had to think about whether or not I was going to do it. And but to have to think about that. And I'm thinking about how it's going to impact my family. And then there's somebody else in that position. Who's going to have to think about who's going to impact their entire family financially as well. So, yeah, I, I didn't have to do it, which, which I know I'm really lucky.
Emma
So with your vlogs what were sort of the thinking behind creating some of those.
Chris
So when I knew I was gonna be going of HSCT obviously, because I work as a freelance camera operator and editor. So I wanted to see vlogs I wanted to see what people were doing. I tried to read blogs, and I found them interesting, but I need that visual components really engaged with something. And then I read even when you read sort of information on certain websites, they tried to make it really user friendly. I think they're not quite understanding how simple the user I am. And so I wanted to see somebody talking about it. And there wasn't a huge amount out there. I mean, there was a few vlogs of things but they weren't like consistent all the way through the journey. And a lot of the time it was shot on a phone up somebody's nose, that kind of thing. And I thought it would be It would give me something to do while I was in there, it will give me something to focus on. And if I could provide a resource that might be of even the tiniest benefit to one other person, then it's absolutely worth me doing while I'm in hospital with not a lot else to spend my time on.
Emma
Yes makes a change from reading Closer magazine or something..a bit more productive
Chris
I haven't read closer magazine for a while. But yeah, I don't know exactly what you mean. Yeah, being in that room for sort of five weeks in isolation room, it's an unusual thing, you know, it, you're, you're, you're in a bed for that amount of time, with very little else to do, and all these incredibly well trained and very lovely medical professionals come in and they give you food and they take your food away, and they get you to stand up so they can clean your bed, you have no other concerns, aside from being in that room. And there's a kind of, there's a kind of guilt in being there and having all the people rush around and fuss after you like that. So, filming the vlog. I mean, I was I was editing weddings and stuff as well. But filming the vlog gave me something to focus on. And it was it was a fun distraction, which I hope is useful to someone.
Emma
Yeah, I'm sure it will be I know, when we came across them at the trust. We thought they were really good and really interesting and informative. So that sort of leads on nicely to my next question of How did you feel during the treatment, sort of both from an emotional and physical point of view.
Chris
So the treatment obviously comes in, there's three stages, I suppose to the journey of it, you've got your round one, when you go in for your first round of chemo, where you're a day patient. And you go in and do all that kind of stuff. So you have a good first hit of chemo. And that's kind of an unusual thing. I didn't feel I mean, nobody feels good. To be honest, I didn't feel as bad as I thought I was going to, you know, I, I know I responded reasonably well to this, I'm aware that there are a lot of people who will be very, very sick. I felt a bit rubbish. I felt like not very good, obviously, throughout the day. And on the drive home. I took some anti sickness pills, and I didn't take them early enough. So I had to stop in the car pull over and vomit on the side of the road, and they get back in the car go home. But that was altogether not too bad. And then obviously, in part of that stage, you wait for your hair to fall out. Everybody hopes they're going to be in the number of people like there's a very small percentage of people whose hair doesn't come out. I was not in that percentage, sort of you wash your hair, and you look in the sink, you know, oh my god, it's like a terrible accident. So then you have to shave your head. So that's stage one. And then obviously, you've got your activation injections, and they do Bloods and they get your stem cells and all that kind of stuff. And then it's back in for your Hickman line. And then for this, there's the inpatient stuff. So there's, there's all the different stages, physical side, not terrible. No, no, it was very obviously unpleasant, but not but not as awful as it could have been..emotional side. I was fine. Like I said, forward going horse like not particularly stoic, but dim. And so I just kind of ploughed on forwards. And again, I tried to just kind of get on with it a little bit. But knowing what I was doing to my wife to see me looking the way I did. And even more than that, my son, who was I do couldn't really get his head around the whole thing, he was old enough to kind of understand that something was not good. And that daddy didn't look right, but not old enough to really understand exactly what was going on. And that was that was emotionally very, very, very difficult.
Emma
And for those people that haven't sort of watched your video? How old was your son at the time?
Chris
That's a very good question. So he would have just turned four, or just turned four. So we tried to keep them involved with everything in the run up. We bought him like he was really into playmobil all the time. So we bought him a playmobil hospital, and all these little like nurses and doctors and character and stuff and patients. And we tried to explain what was going to be happening to me using those characters. And he got it a little bit.. somewhat. And then we tried to involve him again. So he was the one who sort of tried to shave my head. And we tried to keep him give him as much information as we thought we could handle. But obviously, there are limits to what he can figure out. And ultimately, even if he kind of understands what we've told him, being told that he's not going to be here for six weeks isn't the same as Daddy not being there for six weeks.
Emma
So what were some of the things you found most challenging during the treatment, sort of some of the stages, maybe you didn't, and obviously none of it you really loved, but that you really didn't enjoy or some of the bits that you maybe didn't think about beforehand that were a bit of a challenge?
Chris
Yeah, that's a good question. In terms of particular challenges, so like I said, I was really lucky I didn’t get too sick, obviously, being in the hospital for that amount of time and having to being in hospital for that, that length of time. And you don't really have any personal boundaries. There's a lot of things that are, you know, what you would consider indignities when you're out in the real world and you've got people coming in and picking up all these great big pots of wee and walking out with them, all that kind of stuff. But in terms of when I think the worst moment of it, the catheter was something that was not what I that was worse than I expected it to be. which I think makes me a wimp, really, because my, my wife had to do that after that, you know, first of all, all of that kind of stuff. And I made a much, much, much bigger deal of it than she did. Other not so good things. I think really, it's more of a generalised, it wasn't great, there are the experience of being in hospital or hospital foods, not seeing family, all those kinds of ongoing things that are constantly on your mind. And I think if you if you let yourself sit in that you don't have other things to distract you. I think for me, it that emotional side of it would have been by far the worst, rather, rather than the treatment itself. Like the more physical thing, like going into the Hickman line, that wasn't that bad. I know a number of people are getting quite worried about the Hickman line. And you know, and I filmed the entire operation, like my wife was filming me while they were, they were jabbing and going into my chest, all that kind of stuff. But that wasn't too bad. Obviously, the chemo incredibly draining, incredibly tired, not feeling very good. Generally, again, I didn't get sick. So I know there's a lot worse for other people. And then it's the waiting, or the waiting is so long that you go you're basically doing the chemo is done all the treatment stuff, you've got your stem cells back. And then you just have to wait for your body to sort itself out and for your numbers to come back up from for them to say you're well enough to go home. And that wait, however long it is, I think mine was about 10 days is long. It's a very, very long way for them to eventually tell you can leave.
Emma
So after all of the waiting and all of that sort of side is done. What sort of aftercare Did you receive? And how did your health professional team manage this?
Chris
So aftercare was really, really good. Obviously, again, I had the benefit of nurse wife. So when you leave, they give you the most enormous bag of medication to take antifungals, antivirals, antibiotics, loads of stuff to pre-emptively protect your body from the infections that you will almost certainly get because you have no immune system. And it's difficult to try and come to terms with the fact that you're going to have to be very, very careful for quite a long time. So even though you're taking those things, you're still if you go out into the real world, you're gonna get sick and stuff like that. Otherwise, it was regular clinic appointments, where they were check bloods so that that was all good. It's up for big if you want to incline to mode, sometimes it takes a long time, you know, you go up and you think, Oh, I kind of wish they'd arranged it so that I could have my bloods when I first arrived and then they'd be ready for my appointment this afternoon. And those kinds of minor niggles, you know, in the grand scheme of things, like even though you moan about, you know that it's especially if it's on the NHS, you know that you're receiving something, you're incredibly lucky to be getting it. But they were really regular checking in the MS nurse, as I should say, as well. And if it were fantastic, they would come in pretty much every single day while I was in isolation, which I felt kind of bad about, because they come in and say, Oh, how are things going? How you doing today, and every day was the same. I'm fine. Thank you very much. I'm sorry, you had to put on your gown and spend half an hour away from your other other jobs to come and see me. But they were really good. They were really consistent. I really felt like I was actually being looked after. And the team on the wards on bracking unit were were really, really good as well
Emma
In terms of the recovery. So what did that look like? Were you like, did you have to stay at home for a considerable amount of time to make sure that you weren't getting those germs from the outside world?
Chris
I did. Yes. So there's I don't know exactly how long I can't remember how long you're meant to be at home. I know when I first came home, because my son was sort of going into nurseries and playgroups and stuff. And obviously kids get very ill and they carry like colds and stuff all the time. So that was a bit of a concern being at home. So I spent three or four weeks and my parents who were literally right across the road, and then back home. So I stayed in the house roughly three months, you know, when I did walks and stuff, but I didn't go to places where there were people started to pick it up again, for the three months following that. I was off work for around five months. And then I was back at work for roughly three weeks before Coronavirus started, and then immediately had to go back home and start isolating again for another period of several months.
Emma
When you went back to work. Were there any differences sort of like different levels of energy or anything that you found? Or was it sort of a little bit more back to normal for the three weeks,
Chris
You try and get back to normal I was I was really, really fortunate. My colleagues were lovely. And they took on a lot of my workload so that when I went back, even though I was back, and I was back to my normal hours, you know, I did a sort of a slight phased return, but I wanted to get back into it quickly. And then very quickly realised that getting back into it even slowly, was exhausting. And so my colleagues were really, really helpful. And they picked up a lot of stuff and they sort of took the slack as it were, for me not being quite up to speed. I think by the time I was sort of ready to go, you know, I was I was back at the way I should have been with teaching the back at the energy levels was roughly at the time that obviously things went a bit strange with the entire world. And I had to go home again.
Emma
And so it's been what sort of 18 months since your treatment now is that right? Yes.
Chris
Yeah, which I hadn't realised if we had been quite that long. So my first round of chemo was, I think, September 3 or something 2019. So, yeah, two full years.
Emma
And sort of have you noticed any differences in that time, then?
Chris
Well, so my understanding is that HSCT, obviously, as the norm doesn't generally make improvements, and again, my understanding is limited, I know that everybody's experience will be different. But if you get improvement, it's really fortunate, there's meant to stop progression. I didn't..so for six months after the treatment, it's about the treatment rollercoaster. So things will get worse, while your body is still trying to figure itself out again, things will be worse for a period of time. And they weren't like my memory was really bad. My coordination and sort of stability were quite poor. I might have, I think I'd have mentioned it to my left leg gives out quite a lot, but never actually fallen over. But my left leg was sort of given I almost stumble. It was doing that quite a lot. So that was worse, for a period of time, then it got better, I got back to roughly what baseline was before sort of outside of relapse. slight uptick in symptoms recently, the last few weeks. But on the whole things are back to roughly where they were… based on the rate of relapse I was having before I was having a relapse, you know, roughly every year to 18 months. And so it's been two years now. And although there's an investigation about the current uptick in symptoms, there isn't a strong opinion, there isn't a strong feeling there's likely to be a relapse. And so if it's been two years without relapse, that's really good. That'd be my longest route without relapse since diagnosis 14/15 years ago. So that's fantastic.
Emma
Yeah, that's a big positive then. So I guess this one, I can probably guess the answer. But if you could go back, would you do the treatment again?
Chris
Yeah, absolutely. I mean, I can't really, I can't really consider what the alternative would be. The thought of, for me, I'm aware, this is where I start to get gets a bit more morose, a bit more dark, the thought of, in 20 years, my you know, my son and my daughter having to have to be my carer in any way capacity or my ability to be a dad and do the things and the thought of that being inhibited. And putting that on them scared me. And so I absolutely want to do everything I could to try and make sure that didn't happen. And I know that decision is not for everybody. And that that that's absolutely fair. But for me, that was kind of my driver. So yes, I would 100% Do it again, even and I don't know what the position is, in terms of the NHS or whether or not having HSCT a second time is even possible. But if let's say, I do have another relapse, I would I think I would probably do the process again, in the hope that it would do the second time what I kind of hoped it would do the first time.
Emma
So what was it sort of, in your own words that you'd hoped it would do the first time.
Chris
What I wanted to do, what I was hoping it would do is kind of what it says on the tin for what people describe HSCT in a shorthand, which is that it will hopefully stop disease progression. I can live with the symptoms I've got I know I'm very lucky, like I said, lots of stuff, lots of relapses, but no massive life changing symptoms. If I were fortunate enough to have HSCT, and stay in that position, even for a long period of time and slow progression for 10/20 years. That'd be amazing.
Emma
And looking back, was there anything that you would do differently now? Knowing what you know now, even if it's something small, Or it can be something really big as well?
Chris
I should have prepared.. you send me these questions before and I didn't. I didn't, I should have thought of something. Honestly. No, I don't think there is anything I would do differently. I took in sort of what I would say anybody thinking of doing it, make sure you have lots of things to take with you to keep you entertained. I had an entire season's worth of weddings to edit. So I always kept busy from the moment I woke up until like 10 o'clock at night when I went to sleep. I was busy. But I can imagine what if I hadn't had that, you would go mad in that room. So I was lucky to be kept busy that way. So if I were to do it again, or I would make sure I absolutely have that resource that thing to be doing during the vlog kept me entertained as well. I know that this would be more of I write blogs instead as an alternative to do something different. Right? You know, I think I'd probably try and do more, more for my son in advance. There was a lot of things I did while I was in there. Really dim, silly daddy things I you know, I did little silly videos and pretended to do Batman or David Attenborough voices, all this kind of stuff. That's would make him happy. I would probably do more of that. And I didn't do loads of it because I was tired. And I sometimes I you know, I've said that that he'll be he'll be fine. Now, I should have known that better for him would have been to continue sending him a plethora of those kinds of videos to make not just his life and my wife's life easier as well. So that would be my objection.
Emma
Okay, that's a good one, I think. So are there any questions that you might have asked beforehand, if you could go back that you wish you'd sort of explored a little bit more?
Chris
I would say again, mine is different. I have a wife to explain everything to me. I know if it had been just me. I would have asked them to explain it all to me again, and to not feel bad about asking that question. So Nobody wants to seem like really, really dim, like, they don't understand stuff and nobody wants to be, you don't want to feel like you're a burden on somebody's time. Like, you know, you know, all these medical staff are really busy. But I would want to ask for every single explanation again very slowly and I would make my own notes as I was going to understand because they give you these little bits of paper and they all felt like photocopied stuff and it looks a bit ropey, but I would make my own notes and an effort to improve my own understanding. So basically, I would ask not one thing, I'd ask everything twice.
Emma
So is there anything you've learned about yourself from the process?
Chris
That I hate editing my own face? Primarily? No, no names of in terms of the treatment itself, I don't think is anything I've learned about myself, I think I've learned that I sort of the strength of the people around me was an enormous factor in my ability to just get through and just sort of plod on with it and made a massive difference. And that having things to entertain you and not being inside your own head, when you're doing that kind of thing. Is hugely important. Otherwise, I think I think the experience if you didn't have someone to distract, you would send you mad.
Emma
So HSCT has been in the media quite a lot recently, we've seen that Nicola Chapman Haste who's makeup artists and beauty influencer and as well, obviously, Selma Blair, was shortly released in a documentary about her journey. Are you sort of pleased that the topics being talked about more widely? And what are your thoughts on those?
Chris
Yeah, no, absolutely. I mean, any, it's an unusual thing to say, but like to have famous people who have to go through you don't you don't hope or famous, you don't have anybody, anybody gets MS. But to know there's somebody who is famous in the public eye that other members of the public will take note is really, really important. That's that goes for people, those people having MS and raising public awareness, generally, but the specifying that down to HSCT is even more beneficial. I know. So like, there are some people that have been diagnosed that famous, you kind of hope they're going to become a bit of a campaigner, or they're going to become kind of a face for it. And I know that's, that's kind of a big responsibility to hope somebody famous will take on board in their life, but that somebody's doing that can be a huge benefit to everybody else who's got the disease. So the Selma Blair, for instance, documentary. Yeah, no, I have not seen anything from it, I see posted post on Instagram. And the fact that she's been so confident and forward and happy to talk about and be, allow herself to be vulnerable in the public eye is a really, really big deal. And I hope it's of a benefit to general public awareness. Because I know that when I talk to people who are having MS and it's like, to me, I don't know, but I'm evil, I never usually mentioned it, I have to know somebody for a very long time before I bring it up. And then when you do bring up, they get kind of uncomfortable, and you feel uncomfortable, because you've made them uncomfortable. So most of the time, I just don't mention it. But if you know, there's somebody famous they'll have heard of, and you can point them towards that and say, Look, this is this is what it is. Or if even better, they've heard of it prior to your conversation. It just makes that initial conversation when you discuss it with the much easier.
Emma
Yeah, yeah, I think that's a really good point. Actually, I've got a friend who she because she knows I work at the MS trust. When I see her. She's like, Oh, I heard this thing about Selma Blair, in the news, or one of the mums with my kids at school was mentioned MS. Because one of her friends has got it. And yeah, it makes the conversation a lot easier.
Chris
Yeah, it makes such a difference. It makes it like I said, My only knowledge of it was that there was there was a scene in Family Guy where one of the characters mentioned they had MS. And President Bartlett and West Wing, I didn't know anything about it. And it took me a while to get my head around sort of trying to research it for myself. So even I would have benefited if there had been someone in the public eye when I was first diagnosed, let alone where I am now where I have to have those conversations and explain it fresh to new people.
Emma
So just to finish up, what tips or advice would you give to other people who might be considering HSCT as a treatment for their own MS.
Chris
Do as much of your own research as you possibly can. It's those the kinds of studies that I've looked at may not be for everybody, but ask for as many resources as you can from, from the start from your neurologist from your MS nurse, that kind of stuff, whatever they can give you, it may not be that you are able or willing or want to engage with all of it. But there might be some things that grab you might some things that you can take on board. Finding out as much for yourself will generally make most people feel more confident. And then when you get to the point where you're gonna go and do it, plan and prepare as much as humanly possible. So for me, it was a case of having lots of stuff to do while I was in sort of managing family and all that kind of things. But everybody's circumstance will be different in terms of what's going to be best for them. So consider what your life will be like for six weeks stuck in a single room. What do you need to get through that? Mean? There's nothing you can't really help how your body's going to react to the medication. All you can do is manage how you're going to be mentally while you're in there.
Emma
Brilliant. Thanks for speaking with us today.
Chris
Thank you very much.
Helena
If this was a commercial podcast, here's where there would be an advert. But as we're a charity we don't do that. So instead, we'd like to take this opportunity to tell you all about our fantastic resources for people with MS.
Emma
Our website, which is MS trust.org.uk has tonnes of information resources people affected by MS, including a page on HSCT. You can also visit our YouTube channel to watch a handy video which recaps what HSCT is and how it works.
Helena
Next up is an interview with Gwen. And unlike Chris, Gwen was not eligible to receive HSCT on the NHS. Gwen has got Primary Progressive MS. And at the time found that options were limited in terms of where she could go for the transplantation. So in the end, she settled on Russia. And here's what she has to say
Emma
So are you able to start off by telling us a little bit about the start of your MS journey, things like your initial symptoms and your diagnosis?
Gwen
I started getting weird symptoms that I had really bad vertigo. And it didn't really go away. So I saw my GP and he thought maybe I had an ear infection. And I was treated for that. But it didn't help. And then I started getting problems with my legs, when I was going walking, I'd be walking around my legs would just stop working, it was really bizarre. They didn't hurt. They just stopped working. So I suspected that I knew what it was because I already knew of somebody who had MS. And so I went to my GP and asked to be referred to a neurologist.. that took a couple of attempts to be referred. And then when I was referred, I was actually diagnosed quite quickly. Because of my age. I had an MRI, I had the electrical tests, I had a lumbar puncture and my history, and a very young keen registrar who was really good. He told me straightaway, I either had MS or a tumour on my neck. And when it was confirmed that it was MS. He rang and told me, you know, very quickly, so I was kind of relieved, actually, because I was, you know, given the choice, I thought, Oh, I think I can cope better with MS. And initially, I thought, I'm just glad it's me and not any of my children and that kind of thing. So I wasn't shocked, and I wasn't distraught, either. I just thought, well, this is something I've got to get on with now. Yeah, it was kind of, if you go through these things, you think which is more easily treatable and things like that, then of course, I was told that it was Primary Progressive MS. And that was more disturbing, really, because they said there was absolutely no treatment for it at that time. This was in 2009. They said, we can possibly help with some of the symptoms that you may have. But there is nothing that we can do to treat the actual disease. Basically go away and live your life. And that was it.
Emma
Did they tell you that you'd got a Primary Progressive MS from the beginning? Or was that something that sort of they told you MS. And then later on, it was primary progressive
Gwen
When they were first considering it, they just called it MS. But when they rang to say it's definitely MS. They said it was ppms. I fitted the classic profile for it my age and all of that kind of thing. So they knew from the beginning that it was ppms.
Emma
So you mentioned obviously at the time, there weren't really you know, disease modifying drugs or certain treatments available to you. Were there any sort of different options that the MS team discussed with you other than those?
Gwen
No I felt a bit abandoned. To be honest. I wasn't given any literature. I wasn't pointed at anybody. They said, oh, we'll we will refer you to an MS nurse. Eventually, it might take a while. I was really cast adrift, and probably dealt with it quite well, because I have a science background. And I'm used to do my own research and things like that. And as I said, I already knew somebody who had MS. So I kind of just took it in my stride. I think a lot of people might have been quite upset. Other people found it harder to deal with them than I did. My family found it very difficult to deal with. So I was having to deal with their emotions more than my own. Really.
Emma
I suppose that's like another challenge. I suppose you don't really think that you'll have to manage that on top of how you feel as well.
Gwen
That’s right. That's right. And especially when you're a mother and you're used to kind of keeping a lid on your own emotions to keep your own children happy and all of that kind of thing. Telling my my dad was really hard. He was distraught. In fact, quite a lot of relatives. I was gonna get on the phone. And at the time, I was still working, I was busy. I was a busy person, it kind of didn't impact too much initially on my life. So I just got on with that. Yeah.
Emma
Obviously you said, you know, you went away, you weren't really given many resources, at what sort of point did you start to think hang on a minute, maybe I'll do some research of my own look into what things are available and sort of come across HSCT.
Gwen
That was actually a couple of years later. As my disability worsened, I ended up having to be medically retired from my job, which was very distressing because I loved my job. And I worked in a school. And it also gave me the time to do more research. And also I started thinking, hang on, there's got to be something there must be something out there. They can't just kind of say, No, that's it. That's when I started doing lots of research. I found all of the… any research from around the world, the scientific papers that I could find, I found them and I read them. And I came across a blog by an American chap called George Goss, who had had HSCT that was the first time I'd heard about HSCT. So once I thought, there's hope that's when I really kind of dived in and did lots of research about it. I rang doctors I spoke to haematologists, who all thought it was a great idea. The neurologists weren't keen but the haematologist thought it was a good idea. And it got to the stage when I was choking a lot on.. even on just a simple sip of water. I was starting to panic about the way it was going. So I always thought, well, there is no other treatment, this is obviously going to get worse. I may as well go for it if I possibly can find somebody to do it. And that was the problem was getting finding somebody who would treat someone would ppms.
Emma
And what were some of those reservations that the neurologist sort of had.
Gwen
When I went along to my own neurologist, after I thought this is something that I might like to try. She was horrified, she said. But I would be brought back in a box that it was something that they only did for people with very advanced MS as a last ditch attempt to keep them alive. I'd taken printouts of lots of research that I've done the peer reviewed papers and everything but she just didn't want to read them. And she was very dismissive. I was very disappointed. And I'm glad it didn't put me off. You know, because I'd seen a local haematologist same Health Trust and everything. And he was saying it's a perfectly safe treatment. We do this day in and day out for cancer patients. We'd love to do it for people with neurological disorders, but we're not allowed to unless they're passed across to us by the neurologist, and mine wouldn't so I was forced to look elsewhere.
Emma
Is that sort of what made you start to look into go? Am I right in thinking you went abroad for your treatment?
Gwen
That's right, I went to Russia. And that's right. I knew that it wasn't available in this country at that time. And to my knowledge, there weren't any trials or anything going on in this country. And when I started looking into it, most there are quite a lot of countries that do HSCT for MS. But nearly all for relapsing remitting MS. Very few wanted to treat primary progressive. So when I looked around and I rang the doctors and all the rest, there were only two places that were prepared to treat me. One was Russia, and one was Israel. The difference between those two is not only price, Russia was a lot cheaper than Israel, but Israel do what's called myeloablative HSCT, which is a lot more severe treatment. It's much more extreme, and it's harder to recover from. I couldn't afford it anyway. So basically the choices made for me it was Russia or nowhere. So then I concentrated on finding out as much as I could about the treatment in Russia. I spoke to other people who had been there. I was the third Brit to go to Russia for this. So I spoke to the two people who had already been I spoke to other people from other countries who had been there who could tell me about the actual experience of it. And that's what convinced me to go for it.
Emma
And when you found out you were the third person to go to Russia was that sort of a mix of excitement that it was like quite a new thing? Or were you a bit nervous, obviously thinking, you know, there's not been that many people before me to go through this
Gwen
It was kind of nerve wracking. But by that point, I just thought, whatever I can do to stop this disease, I was worsening quite fast. So in because of in the space of three or four years, I'd gone from nursing to an EDSS of five 5.56 On some days. And I was scared about where it was going, you know, I still had teenagers at home, I wanted to be able to take part in their lives. And I think once I decided I wanted to go, I was just desperate to be accepted. And I wanted to be able to get the money together. That was another issue, of course. Yeah.
Emma
I guess for you, obviously, the benefits, the potential benefits really outweigh those risks and any concerns?
Gwen
Definitely. I mean, it's important to be really careful about your own risk attitude, and you've got to be prepared that it might not work. And you might have spent all that money and it doesn't work. And you've got to think to yourself, would I? If it all it Does this stop my progression? Would I be happy to live like this for the rest of my life? Because, you know, depending on how disabled you are, you might think I don't want to stay like this. And you can't assume that there'll be any improvements. So, but I knew I was gonna get worse if I didn't go. And that was it. So that I was when they said, Yes, we can offer you treatment. I was so relieved, and so happy. And it just gave me hope for the first time because I hadn't had any hope since the day I've been diagnosed really
Emma
Yeah. And then obviously, you touched on the money side of things. And obviously, there's travel involved and things, what were some of the other sides that you had to consider when you were looking into the treatment. Obviously, you had teenage children, and things like that to prepare?
Gwen
Yes, I was very lucky in that I had total support from my husband. He was a police officer at the time, and working shifts and things like that. So he offered to come with me to Russia, but I said that I'd rather he stayed at home and looked after the house and the children and make sure that kept going. And that's what he did. And in fact the money for paying for it came out of his pension fund. So it was, I was lucky in that I had that option. It was quite difficult. We had to organise a visa to go to Russia, which isn't the easiest things. And I think it's actually trickier now than it was then. But everything else apart from the flights was included in that in the cost. So at least we could budget for it. It's only a four hour flight to Russia. I've never been there before. And I've never actually flown by myself before either. So it was quite nerve racking until I got there. And I was met at the airport by a driver from the hospital. And I just kind of handed myself over into their hands. And let them take me you know where I needed to go. And I completely relaxed. Once I got there, I met the doctor who instils confidence. And they've treated so many people with HSCT from all around the world as well as their own Russian patients, that it's like a well oiled machine to them. I felt very safe.
Emma
That’s good. Yeah, that's what you want. Obviously, when you get somewhere if it's an unusual environment as well for you don't want to feel.. must have been a bit daunting. Going from sort of NHS where you know that everything's tied in and then going across to Russia How did they sort of manage moving across some of your medical information? Was that something you just had to tell them?
Gwen
Yeah, it was I just had to, I had to take any information that I had in writing from various specialists with me. But they spent the whole of the first few days just testing every single system. It was the best mot I've ever had in my life. They told me several things that I didn't know.. that I had cataracts that I had a gallstone carry lots of different things that I hadn't known before. Very, very thorough testing before they decide whether they to actually go ahead with the treatment because they want to make sure that you're safe to have it. So that was very reassuring. I just thought there wasn't anything that they didn't test from my eyes, right down to my feet.
Emma
At least you feel like although it was expensive to do in that way you got value for money
Gwen
Absolutely you know, the MRIs, they everything they found things they were saying they have a have a much more intense MRI machine. So they found lots more lesions than I knew about from here. But I was told I had only four or five lesions there, they found I had too many to count, that kind of thing, you know. So yeah, it was just so professional.
Emma
So you mentioned obviously, you went to Russia, because they were one of the only two places that treat people with Primary Progressive MS. Were they sort of quite open about discussing what you could expect from the treatment as opposed to someone who might have relapsing remitting?
Gwen
Not so much. I don't think there's a difference, or some as much as a difference in the outcome as there is in the percentage of people that it works for. It works for fewer people who have got progressive MS. And I don't think anybody really understands why that is. The success rate for ppms is about 70%. For relapsing remitting, it's higher than that. It's about 85%. It varies, you know, but that's about what it is. And after I'd had all my testing, the doctor said to me, he was convinced that it would benefit me. And he recommended that I had the treatment, I was happy to go ahead with that.
Emma
So looking now at the treatment, what were some of the emotional and physical changes that you notice? Like, how did you feel during the process, were there any sort of challenges
Gwen
I was really tired all the way through this treatment, I was there for a month, and I spent a lot of it sleeping. But interestingly, it was, it was a bit like being away at boarding school in a way because there were several other people there international patients from Australia, and America, and Norway, and we kind of bonded over our shared experience. And so when I wasn't actually having treatment, I was mixing with them and talking to them. And we kind of took ourselves through it like that. So emotionally, I felt quite well supported. Physically, it wasn't as difficult as I thought it was going to be. Because when someone tells you that you're going to have chemotherapy, you think, Oh, you No, I'm going to be sick, I'm going to have terrible tummy troubles and all of that kind of thing. But none of that happened for me. There were four days of chemotherapy. And I kept waiting and waiting to feel bad. On the on the fourth day, I felt a bit nauseous, and that was as bad as it got. As far as the chemotherapy was concerned. Later on in the treatment, I did have some bone pain, when my stem cells were given back and they were in grafting, I did get some bone pain, but you can bear it because you think it's temporary. You know, you know, it's for a purpose, you know, the reason for it, and so it was bearable. I think the most difficult thing I found there was maybe the food in the hospital wasn't great. But again, it was for a purpose. It was it was meant to nourish you for the reasons you needed nourishing. And it was again, it was temporary. So that was for me. It wasn't that bad of an experience at all. The actual food outside of the hospital is great. I have been back to Russia since to visit and the food is great. It was just the hospital. But that's the case here too, I think.
Emma
Yeah, I suppose you can't really be too harsh compared to some of them, like dry sandwiches and things like that. So did you have sort of regular contact with your family while you were there?
Gwen
All the time. Internet is fine. Um, it's not a third world country. You know, it's the internet is fine. I was on Skype and WhatsApp the whole time. Obviously, there's a time difference. So that was a little bit awkward. But no, it was great. And my kids would send me funny pictures and things every day to keep me going. And I could speak to them, you know, pretty much whenever I wanted to. So that wasn't a problem.
Emma
And after your treatment, what was the care like? Obviously, you would have had to return to the UK. Try and coordinate that back with your neurologist and MS team over here and to obviously link up all the care how did you manage that one?
Gwen
Before I went to Russia, I met with a haematologist as I said before and he offered to care for me when I came back As in to supervise all the blood tests and things like that and to have a plan of action if anything went wrong. Nothing did go wrong. So I went weekly to start with and then fortnightly and then monthly to my GP where bloods were taken. And they were passed by the haematologist and it all went fine. And a couple of months after I came back, it was my routine appointment with my neurologist. So I went along, thinking that she'd be thrilled to hear all about my wonderful experience. And she was really uninterested. It was really sad. I was, I was quite upset, to be honest, because I went in today, you know, I wasn't brought back in a box. And she said, Oh, good now that's good. That's good. Let's have a look at you then then. Fine. Okay, then see you next year. You know, it was, I felt so dismissed. And I thought you wasted an opportunity to learn, from my experience, because I was pretty sure that one day it would be coming to this country, which it is now of course, as you know. And I've never been back since then. So in the last seven years, I haven't seen a neurologist, I haven't felt the need to if I felt that my symptoms are worsening or anything like that, then obviously I'd have to go and consult a neurologist. But that hasn't been necessary. So I'm afraid that's not a very enlightening story with the neurology department.
Emma
That's a shame. Yeah, like you say, because even it's an experience to learn, an opportunity to learn about different experiences, and even if you know, you don't personally agree with it, it's good to explore the options for other people.
Gwen
That’s right. And I saw the MS nurse once after that, as well. And she was very interested in wanting to know all about it. So I told her, and I offered to speak to any other her other patients who might be interested in this as the treatment, the pros and the cons and the information. And but unfortunately, she said they weren't allowed to speak about it. She said, we're not allowed to tell.. if somebody raises it with them, I think they can respond, but they aren't allowed to raise it as a possibility. So that was the end of that as well. She said, Do you want to make a new appointment, and I said, I don't really see the point, to be honest. She said, well call if you need us. But other than that, we'll leave it at that then so and that's where it's gone. And of course, since then they have started doing HSCT in this country, which is amazing. But it's still quite difficult for people to get accepted for the treatment, they're quite restrictive in their acceptance criteria. So still, most people go abroad for HSC.
Emma
And for you, if you'd have that option, you know, they said, either try, you know, there weren't necessarily treatments available for you at the time other than HSCT. But if they'd said, you know, tick these boxes first, and then you can have it on the NHS or you know, you still have the option to go to Russia and pay for it. What do you think you might have done, if that was an option?
Gwen
It would have been a big decision. And, of course, it's really hard to ignore everything that I've learned between then and now. But now, I think I would still choose to go abroad. I often say to people that if one of my children was diagnosed, I'd want him to go to either Russia or Mexico, which is another really good HSCT facility. Because they have the experience, they do it day in day out, you're not kind of held wondering whether you'll get a bed or whether that's going to be taken for an emergency cancer patient because they're specific facilities just for people with MS. And also, the protocol is slightly different here in the UK. And although it's effective, though, it seems to me that they I really hate to say things against the NHS because I'm a huge fan of but they have more problems with infection than they then they do in Russia and Mexico. Which of course you don't want when you've had your immune system blasted. So although it goes against the grain, I would say I would still go abroad.
Emma
Yeah, that's fair. And talking about obviously your immune system being weakened and having to be extra careful. When you return to the UK was there sort of an isolation period that you have to be really careful for or stay inside or anything like that?
Gwen
I was so tired when I came home that I think I slept for the first month anyway pretty much but you do have to be careful. So it takes a good six months for you, for you to be able to kind of eat without thinking about the safety aspects of your food, for infection risks and things like that. A lot of people don't and they're fine. But I was very cautious. I wore a mask when I went out for the first month or so. I didn't have anybody come into the house for the first month. Obviously, my teenage children were still here. And you know, I had to put up with everything. But they didn't bring friends back for that first month or so as well. A bit like everybody's been going trough with the COVID thing, really. Except it was just me, just me taking care of everybody. So it wasn't too bad. I've always been a bit. I used to work in microbiology and things like that. So I've always been very cautious about hygiene and things like that. So it was fine. I didn't get any infections. So that was fine. Yeah, that's good.
Emma
Its almost like you had a little bit of a warm up, not that you'd necessarily want it. But for lockdown, you kind of knew how to handle it
Gwen
Welcome to my world. Yeah, that's right. Yeah.
Emma
So obviously, it's been, yeah, seven years since you had the treatment? Have you? What sort of changes have you noticed to the progression of your MS or just any changes in general, in that time
Gwen
when I was actually going through the treatment, I noticed that my fatigue and my brain fog improved. As I was going through the treatment, it was the most bizarre feeling it was like a veil lifting away, I could think in sentence, I couldn't string a sentence together before I went.. a bit hard to believe now. But then, so I thought, oh, it's working, I've already noticed that there's a positive change, it's working. And then after I came home, I noticed that I didn't have…I’d stopped taking tablets for things like my bladder and things like that before I went because I didn't want anything to interfere with the treatment. And then I noticed, oh, I don't need to start taking them again. And gradually, my foot drop improved. So only if I'm kind of very tired or whatever, now that it happens. But I used to have to wear a brace all the time on one foot, I had an intention tremor. Before we weren't I couldn't drop my eyebrows or anything like that without shaking, and that's gone. So lots of… the choking, the choking, it didn't go away immediately, I had to be still had to be careful. But now I can actually have a meal or a drink with other people around without being frightened to death that I'm going to choke or anything like that. So that is a huge benefit. To me, my mobility is still not great. It's about the same as before I went but there are so many little things that have improved that it was worth it. Even if I hadn't had these improvements, it would still be worth it because I'm not any worse. And I've deteriorated so much in the first four or five years of the disease that I'm pretty sure I would be in a really sorry state by now if I hadn't had HSCT. I haven't had the marvellous improvements that some people have. But I think that's really important not to expect that.. I kind of try to emphasise that to people, if I speak to them about it, I say it's not 100% guaranteed to work in the first place. So you've got to be prepared that you've gone through all that and not benefited. But if you can accept that, then the next thing is you've got, you've got to hope that it just stops the deterioration and that you're not going to get any worse. Can you live like you are now that's the second thing. And if they say yes, I just don't want to get any worse. And they accept that there's a chance that it might not work, then it might well be the right treatment for them. There's a lot to go through. It scares me sometimes how many people just look at the shining stars who have come through and now can run on beaches and things and think that's going to be them, you know? So I do try to caution people, but I'm a big fan of the treatment. I spent a lot of time since I came back, I have to set up Facebook groups to help people with information about how to go about getting HSCT and what is involved and why it works and all of that kind of thing. So I spend a lot of time doing that now.
Emma
And for you obviously, you know you said you need to be other people need to consider what they would do or how they'd feel if the treatment didn't work as well as they'd hoped. If you'd found that the treatment didn't work, did you sort of have a backup plan? Would you have just sort of carried on or would you maybe try? I don't know if you can do a second round of HSCT or anything
Gwen
You can but not very many people do but It is possible and they do a different protocol. At the time, I didn't know that I thought, you know, it was either it worked or it didn't. But I did know that if there was an initial good response to it, and then you kind of lapse back, that you could have more chemotherapy or more of the monoclonal antibody, and sometimes it can kick the disease back into remission. But that's what I would have tried. First, if I'd had any kind of worsening symptoms, I would have spoken to the doctor who did my HSCT Dr. Federico, and I would have asked him what he recommended. And then I would have gone with what he recommended. And if necessary, for instance, now seven years on, I'm fairly certain that it's not going to happen. But if this, if I did have some kind of worsening, I would go and have HSCT again, if I could afford it, it was, you know, I would, it wasn't so bad that I wouldn't want to do it again. And, you know, hey, I've got seven years out of it. It's, for me, it was a lifesaver, I think.
Emma
And did they give you any information on sort of how long they expect the effects to last? Did they say, you know, this is a 10 year thing? Or is it just go away and see how you get on?
Gwen
Pretty much that. Yeah. Dr. Federico emphasises that, you know, he says, good, good food, good mood, and good exercise. So he, you know, he is convinced that a lot of it is about your own attitude to it, if you expect it to work, and you do the, you know, whatever you can to get better physically and things like that, then you're giving yourself the best chance, if you go into it thinking it's not going to work. And who knows, maybe it won't be successful, you know, nobody quite knows, the brain is a powerful thing. And so, yes, of course, in the first year or two after treatment, every time any, you know, if I got a cold or something, and all my symptoms came back, I would be thinking, Oh, no, oh, no, it hasn't worked. Oh, no. But then, as the cold went on, my symptoms go back again. And, of course, once you hit five years, it's a bit like cancer, you kind of think I'm in remission. Now. I don't, I don't ever think I'm cured, because I still got so many symptoms, but I think I'm in remission. And hope long may it last
Emma
So if you could go back And would there be anything you do differently? So you know, sometimes you get to the recovery sort of stage, like you say, when you're in the hospital for about a month, and you might have thought, Oh, I wish I'd asked this question before. So I'd know what to expect and this sort of aspect of things, or
Gwen
I think I did a pretty good job of investigating before I went, I can't really think the only thing that I wish I'd known about was that they used steroids during the treatment. And I'd never used steroids before. Because I've not never had relapses. And I didn't know that taking steroids puts you at risk of developing a vascular necrosis, which is a bone condition. I didn't know about that. And I'm one of the unfortunate ones that did go on and get a vascular necrosis. So if I'd known that, in hindsight, I would have said, is there any way of minimising the amount of steroids we can use in the hope that it wouldn't affect me that way. But that is the only thing. The only regret I've got really is not having known about it earlier, before I had all of the disabilities that I have, you know, if I'd known about.. if I'd been diagnosed, and they'd said, there's this treatment called HSCT, I would have looked into it then I feel a bit bitter about that. To be honest, I really think people should know, even if it's not available in this country. If there is a treatment somewhere anywhere in the world that could benefit you. I think patients should be told about it
Emma
Obviously, you've done a lot of work to try and raise awareness of it. If you were diagnosed, maybe now. And you were looking around. Do you think there's more resources out there to help people? Do you think there has been an improvement in that time?
Gwen
Yes, I do. I do. And people look at the MS trust and things. They've included HSCT in their literature and things now and I think that is helpful, whether it's enough for people to catch the… I don't know, but certainly there's a lot more online now. There are lots more patient groups. And as the numbers of people who have been treated increases there are several thousand now people are more confident in going for it because they especially they haven't got a science background and don't understand how it works really they just going on whether other people have benefited really. So yeah, I think there is more out there and there are more places to get it done now as well. Even for ppms is there are more options. It's always nice to have options. So it is getting better. I think the I think the NHS could do a lot better. But I think they are hamstrung with money issues. I think they want to do it.
Emma
Yeah, there's only so much you can do with limited resources isn't there?
Gwen
But when you think that you know how many people there are with MS in this country, and there's only a couple of hundred that have been treated here with HSCT It's not great. To be honest,
Emma
if you were speaking to someone, as you I'm sure you regularly do, who was considering HSCT as a treatment for their own MS. What top tip or piece of advice would you give them?
Gwen
Do your research. That is what I would say. It's not the Holy Grail. It isn't a miracle cure, you have to decide whether you think it would benefit you. If you don't do it, will you regret it afterwards, thinking I didn't try everything I could. I'm very surprised and impressed at how many people go very soon after diagnosis these days when they obviously haven't got much disability. And so they aren't as aware of how bad things can get. But yet they're grabbing that baton and going for it and getting their lives back. If you go soon enough. It's like you never had MS in the first place sometimes. So. Yeah, do your research. There are a lot of scams, it's very important to do your due diligence and find out where is the best place to go. People will take your money if you're not careful. And for no benefit. So it's important to get go to the right places to the legitimate places,
Emma
And have you over time, sort of learnt what some of these scans look like if they've got any like really obvious trademarks. For people that are looking or..
Gwen
Yes, they tend to call themselves stem cell treatments. Whereas HSCT, the stem cell bit is a bit of a red herring in a way, because it's the chemotherapy that actually does the work of HSCT. So just being offered stem cell treatment is not going to do anything. There are lots of very plausible sounding clinics out there who say we can give you stem cell treatment, and it will help your MS. But it doesn't. Unless you get chemotherapy involved, it's not going to work. So that's what I would say to look out for.. is there chemo. But if you just had some kind of stem cell treatment, without the chemotherapy, you've not stopped the attacking cells. It'd be a bit like, if your house is on fire, and you started painting it again, before you had the fire put out. Yeah, that's, that's how I kind of put it. So the chemotherapy is the most important part of it, really. But it's very difficult unless you have got some kind of scientific knowledge not to be if someone said telling you yes, we can help you, people get desperate. People do get desperate when they have MS. And especially if they're offering it for a much lower price than HSCT is available for, you know, it's it is it's a lot of money. But there's no point in spending a lower amount of money for something that's not going to work at all, you know, because you've wasted hope you've wasted time you've wasted money. It's yeah, that's why I say do your research.
Emma
Yeah, definitely, you know, those scam programmes on the TV or say, you know, if it looks too good to be true, it probably is.
Gwen
But people want to believe that's why they fall for it.
Emma
So thank you so much for speaking with us today, Gwen.
Gwen
You're very welcome.
Helena
Gwen touched on some of the limitations accessing HSCT. And how options can vary depending on what form of MS you have here. We still got Claire with us. So could you tell us a little bit about what sort of things that make people eligible for HSCT on the NHS.
Claire
At the moment. hsct is available in a very small number of places in the UK, that we think that's likely to change in the in the very near future as there's a big clinical trial rolling out, which will mean that the people a lot of can get ahsct at a number of different hospitals all over the UK. Now, unfortunately, the eligibility criteria for this trial are really really narrow. And that's also the case for eligibility for ahsct on the NHS more genuinely. Trial so far have found that this kind of stem cell treatment does not work as well on primary progressive or secondary progressive MS as it does on relapsing remitting MS. And even within those people with relapsing remitting MS, it works best on very highly active rapidly evolving, relapsing, remitting MS, and in the end, probably best of all in the first 10 years on that, since diagnosis for that reason NHS hospitals are looking at that just that very narrow range of people. So largely, it's going to be people who haven't been diagnosed with for very long, they've been diagnosed with relapsing remitting MS. And they have continued to have relapses, even when they're taking a disease modifying drug. And some centres were even until very recently, only looking at people who had failed on something, continued to have relapses even on some of the most powerful disease modifying drugs that are currently available. in the clinical trials that are coming out as well. There's also eligibility about how disabled you can be before to, to be eligible for the trial. And then literally the EDSS scale, which is the way that we often measure the impact of disability on people. And typically, you need to be still able to walk unless you've recently had a very powerful relapse, which is temporarily caused that caused you to be able to unable to do that. And you have to basically quite fit, I think, in order to undergo the treatment machine itself, it's not risk free. hospitals tend to give a percentage mortality rate of 1%. Now, that's not just where stem cell treatment has been used on people with MS. That's where stem cell fuels has been used across the board. And certainly, recent clinical trials haven't had 1% mortality, they've had much less than that. But it's still a difficult and dangerous procedure to go through potentially, you are leaving yourself at risk of infection, you essentially for the short time, you don't have an immune system that we have to regrow it. And there's a potential side effects like developing a different autoimmune condition, for example, something like thyroid problems. So it's not for everybody. But if you are thinking about it, then get involved with something like the start MS clinical trial, which is about to be about to start recruiting is probably the best and safest way to do it.
Helena
I think it's interesting. You know, I've worked for the MS trust quite many years. And when you first started hearing about stem cell treatment, and they I think what Gwen was talking about what, that there is a lot of us lots of sort of fake claims of stem cell treatment that they say rather than HSCT. out there. And there was a big worry, you know, there were places I seem to remember there was somewhere in Holland, that was a big scandal about what they were doing. And, and there was a big worry. So there's a lot of people that were worried about it, I think it's great to see what sort of has changed and what has happened in quite short time really. I thought it was very upsetting to listen to Gwen's interview when she was talking about the NHS and the sort of reactions that she had from her neurologists. And I think I like to hope that things have changed since then, I when I did an interview recently, for our YouTube channel with Dr. Chamilia, she spoke about when they tried to refer people to stem cell treatment, but that she also has had private patients that have had it done somewhere else, like in Russia, and that she does sort of see as follow up afterwards.
Claire
Because if you can, it's not just a one off that you then put behind you and get on with life, you're going to need to be continually supported by an MS team, who need to be aware of what's happened. And also probably rheumatology and all sorts of other services in the NHS. So it's not, it's certainly not an end to your in your interactions with the NHS. So we know that a lot of people do travel every year to have this treatment overseas. And I think if as long as you're looking for really well accredited institutions, there's the JACIE, which stands for the Joint Accreditation Committee for this, and that's basically a kind of a sort of an international regulatory standard that that gives you some confidence the organisation that's offering that to you is..
Helena
if people are thinking about doing it abroad, I mean, obviously there is a lot of information on our website about the treatment itself. But I mean, we get people coming contact to the information team and also asking questions. And I think, you know, Gwen kept on saying, do your research, do your research. And I think that is the really important thing to take away if you are thinking of doing it somewhere else.
Claire
Absolutely. And I think there's a growing community of people who've undergone stem cell transplantation, either in the UK or abroad, and can share with you a great deal of really useful information to help you with your personal decisions. But I think, as I say, because we've got the star MS trial, starting in the UK, and that's going to be really big. And across, certainly England, Wales and Scotland, particularly, I think if that does open up, open up the doors and the possibilities for people because of course, once this is, even once that trials finished, that then be hospitals all over the country who delivered this treatment to people, and will have the confidence to understand what kind of patients who benefit from it, and who they might consider putting forward to so I wouldn't be surprised to see, to see more availability. Of course, if you do join a clinical trial, you're not guaranteed to get that treatment. Now, the star MS tried is putting stem cell transplantation up against treatment with some of the most powerful disease modifying drugs that we currently have licenced in the UK. So I think it's a really that's a really important thing to know, isn't it? You know, what are? How much better or worse? Or how does it work? In comparison, in comparison to the options that people currently have? One, once neurologists and people with MS and the NHS understand a little bit more about that, then there'll be less of that uncertainty that you talked about, about whether it's something that you should be considering
Helena
I think it would be great once people have been recruited, if somebody is on that trial, and they happen to have listened to this podcast, get in touch with us, because we'd love to talk to them and find out what it's all about and how it's all working. Because you know, I think the more we talk about it, the more interest and obviously, a lot of people who have said the criticism is that they haven't they haven't known about it, they haven't heard about it. So but I think things are gonna change now. Because certainly it's not a hidden thing.
Claire
No no, I mean, it's still the case that people with secondary progressive or Primary Progressive MS. might well feel quite disappointed about that. That but at least if they start with the, you know, those people with MS who are most likely to respond, well, then that will probably lead to the research expanding. But if we started with a very broad collection of people with all different kinds of MS at all different stages, then the research would be less powerful in telling us what we need to know about HSV. Two. So that would probably tend to shut down further research.
Helena
We're going to create lots of information in the show notes. So have a look, if you are thinking about this, or you want to do more research, then there's lots of information there. And we'll pop some links to some of the organisations that talk about it as well. And maybe even some of the Facebook groups that Gwen mentioned, as well. I have known Gwen for a while in the Facebook in our Facebook group, who had been an advocate it was great to hear her voice. Because you know, we've just seen her typing before. And it was very interesting to hear both her and Chris's story, I thought
Emma
and we'll also include a link to Chris's blogs on his HSCT journey in the show notes as well.
Helena
His videos are great, really interesting.
Emma
So remember that if you have any questions about MS, we're here for you. Our MS helpline is available Monday to Friday, except UK bank holidays and that's from 10am to 4pm. Outside of these hours, you're welcome to leave us a message and we'll get back to you as soon as possible.
Helena
And you can also find us on Facebook, YouTube, Twitter and Instagram and you can find this podcast on Spotify, Google and Apple podcasts and Amazon music. Get in touch and like they say like and subscribe. And as always, we'd also like to say a big thank you to Ann Chapman audio for the music for this podcast.