Paul from the MS community: Under what circumstances would you recommend HSCT to other MSers?
Dave Bexfield, MSers Expert and founder of Active MSers: Well, in general the researchers have said pretty clearly, you want relapse remitting MS, you want to be under 50, ideally even younger, and you should not have too much disability.
Ideally you should be able to walk on your own, maybe with a cane, but not much more, and you need to be in good physical shape, robust physical shape. And, I think critically, your MS needs to not be responding to other treatments and it needs to be moving aggressively.
I lost three EDSS points in a span of just a few months, I was just tumbling. I was the perfect candidate for this. And there was another person in my study who was also a perfect candidate for this and she needed it to save her life and we both had a discussion back and forth via email, and we were both comfortable with the fact that if this doesn’t happen, if this doesn’t work, we’re okay with the fact that we gave it everything we had and we tried everything possible.
I looked up her just recently and she passed away, not from the treatment, but from her aggressive MS, it wasn’t enough to stop it. That said, this is a lifesaving treatment for a lot of people, it’s more than 70% effective in relapse remitting MS, as far as keeping your NEDA – no evidence of disease advancement – over five years. Secondary progressive, primary progressive, you’re taking a big risk and your odds are not better than 50%.
And I don’t know, and people will say – and I’m going to get flamed by a lot of people for saying this – people will throw out, oh it’s a 50-50 chance, I’m willing to take that risk. And I don’t know if it’s a full 50 and I don’t know how long it will hold off your MS, it might hold it off for five years, it might hold it off for seven years, but to call it a cure and to fire your neurologist is just not smart. Don’t use the ‘c’ word unless it’s really going to be the ‘c’ word. And for some people it might be, but for some it might not be.
Paul: So I mean, yeah, you kind of approached this with sort of mental strength. So do you think this actually contributes to the effectiveness, like if you have the right mindset and actually believe that this can make a difference, then, you know, not sort of give up the hope, do you think that actually makes a difference?
Dave Bexfield: I think so. And I don’t want to dash any hopes of people looking to get this treatment, because like I said, I really think it can change your life, and it definitely transformed mine. I’ve been to, oh jeez, I want to say since the treatment, dozens of countries.
I’ve been to Machu Picchu, France and Italy and Russia and Latvia and Denmark and I’ve been all over the world and this treatment definitely helped give me resources to be able to do that, and deal with the travel, enjoy and really experience life, so I would not want to take that away from anybody, I just want to make sure folks, when they go into this, that they understand what they’re going through.
And I would also really highly recommend going into a clinical trial. And I realise there might not be a lot of them out there and they might be a control, which means you might not get the treatment, you might have to be on Tysabri or a different drug. But without those clinical trials we can’t get the evidence to have this be an approved treatment.
If it’s not an approved treatment, who’s going to afford 100,000 dollars plus to get this done. And we need to take a little bit of the – what’s the word I’m looking for – I don’t know, the challenge of getting this out there into the mainstream, and part of that is participating in clinical trials.