My Journey Toward a Stem Cell Transplant for Multiple Sclerosis
A personal story
I am not a medical professional. I claim no expert knowledge or expertise. The short article which follows is in no way intended as advice but rather has been built from my personal opinions, as well as my own unique experience. I tell it here purely for the interest of others embarking on the same journey.
You find out that finally, there seems to be something that works for people with Multiple Sclerosis. You see videos of people walking, and television stories of this MS miracle. It's a fact, people who've been forced by their disease into a wheelchair are getting up and walking! You can't believe it. You’re taken aback, surely this is a dream! You’d better check it out! The internet tells you it’s called Hematopoietic Stem Cell Transplantation (HSCT), and away you go, hurriedly searching out information.
Uh oh. It involves chemotherapy.
Hmm, it has better success for those in early stages.
You won't think about that now. You just want to be rid of MS.
And later, you’ve searched and searched. It does seem genuine, doesn't seem to be a scam.
But it’s not available where you live. Not even in the country that you live! Well that sucks.
Sucks big time.
But maybe not?
Because looky there, you find that you can have the treatment in Russia. Or Singapore. Or Israel. Or a handful of other countries.
You continue your search, you want to know EVERYthing.
Dollars + funding = hope
Then you see that you have to pay for it.
And that’s pay with a huge capital P. Start at around $50,000 and stretch yourself to around $120,000. Just depends on 'where' ... and, the currency conversion.
Well hey that’s no biggie is it? These days, everyone knows about crowdfunding and sharing stuff on all different social media platforms. You’ve got friends, and your friends have friends, and they’ll all be sharing your crowdfunding campaign, probably to the other side of the world ... well, if we lived in a perfect world perhaps.
But hope springs eternal.
Most of your friends would donate. Sadly, unless your friends are a rather well-heeled set, the amount you need to raise could be difficult or nigh on impossible to reach. But you still don’t care, in this day and age it’s all possible. Surely.
You plug on, because as everyone knows, nothing is impossible. And whether we know you or not, whether we donate or not, everyone will wish you the absolute best of success. Which has to be a good start.
Once upon a time ...
Now, let me tell you a story. The story of my HSCT journey (so far unfulfilled). Sorry. This isn’t another success story, or even a tale of woe. Not quite. Well not yet. Because right now I don’t know where my story will end.
Aha. ‘There don’t seem to be many of those stories’ I hear you thinking.
Well settle back and I’ll tell you my (so far) unfinished story - while I live in Australia, to my knowledge my story appears almost identical for many others who have delved into this treatment, and it could be the same for you.
Ohhh the dreams you will dream!
Like you I stumbled on the HSCT phenomenon. Hard to miss really, if you have a computer, or even a television set. It’s all the rage with us MS types. HSCT treatment involves chemotherapy, and apparently while chemotherapy is approved worldwide to treat certain other serious medical conditions, as well as MS in a few countries, here in Australia and in certain other countries, it simply isn’t approved for the treatment of Multiple Sclerosis.
Chemotherapy is serious stuff, so it’s understandable that it isn’t used ‘willy nilly’ - but you think it’s worth a shot. You tell yourself there’s no other chance of getting better. But at the same time you know there are risks. And so, you search some more.
You and I have or will read online of many people saying they have their life back after HSCT. Others say the progress of their disease has stopped. And some, in the later disease stage, have sadly seen no improvement. And there is the risk of death, it is less than 1%, but there's no denying that it is a risk a person would have to be willing to take. It's the old 'will the benefits outweigh the risk' question. And only you can make that decision.
And awaaaay we go ...
I began my search around six months ago, and discovered a trial for HSCT under way, close to me, but I didn’t meet one of the criteria - just one, which was enough to see that I wouldn’t be accepted. To me, having the treatment under trial conditions seemed the safest way to go, but like many others I wasn't to have that option. Which meant if I wanted to have the treatment I’d be heading overseas.
So a-searching I did go, once more. And I pretty much decided on Russia. Those guys are super smart over there. They know their stuff. And they seem to have a very high success rate. So I decided that’d probably be where I’d head, if I made the final leap. Singapore was my second choice. Reputable but more expensive.
It’s not an easy decision. Chemotherapy. I’d lose my hair, and probably be awfully sick during treatment. Aside from the risks, there is a long recovery period back home. Maybe even worse, complications during treatment or after you return home.
Am I brave enough? Should I burden my husband with more than he already has to deal with? I think that is the major stumbling block. My husband shouldn’t be my carer. I think that’s an awful thing to do to anybody. Of course I could be totally fine, I could sail through chemotherapy, and be just the same as when I started, or maybe even have some sort of miraculous recovery ... it’s not impossible - we know nothing is.
I’d done all the exploration, the research, and ultimately wasted a lot of precious time that I may not have. And I did reach the angry stage. Angry that I didn’t know about HSCT years ago. The last thing any of us want is to miss a possibly genuine opportunity.
So I figured I needed to at least try this one treatment that’s had success. Not 100% success. But success for over 70% of people (in later stages) so ‘they’ seem to say. I had to try an autologous haematopoetic stem cell transplant. Didn’t I? I decided 'yes'. For about a week.
I’m still tossing it all around. At this stage, you probably will be too.
Russia has a long wait for HSCT, and I got as far as preparing an email to send to the hospital in Russia. Haven’t sent it yet, might not need to. Nonetheless I’m all ready. I'm lucky enough to have the dollars available, so you'd have to say I'm actually tinkering on the proverbial brink.
Guess that all makes me sound a tad strange, and maybe bitter at times - I’m not. I’m impatient, that’s true. But I truly don’t blame anyone for the fact that the available drugs haven’t yet worked. Nobody has seemed to know how to get rid of this disease. The available drugs were all there was, and I’ve been offered them. Plus there’s no denying that there’s plenty of work being done to find that elusive cure. I think I speak for all of us living with MS, when I say we truly appreciate the effort, the knowledge, and the hours spent in the lab.
Put simply, we all want something that puts a stop to MS. Those of us who are living with it, and the medical professionals that treat us.
Is it any wonder that those afflicted latch on to these ‘maybe miracles’, when walking becomes difficult, when we lose so many silly little abilities that every able person takes for granted, when we discover that these little things are actually big things?
Don’t know what you’ve got til it’s gone. Just saying.
Ready, steady, go!
So, after months of research, and a long wait for my next neurologist appointment, I was ready. I’d again studied the criteria for the local HSCT trial. Ultimately, there did seem to be a glimmer of hope for acceptance into the local trial, so I was going to try that option first.
I’d spoken to the trial team. I know my chances of being selected are slim. I know it’s an awful treatment, involving chemotherapy. I figure that for possible improvement I can handle losing my hair, I can handle the nausea and vomiting. I get that the other awful risks are real.
Despite all the well-meaning folk telling me that no neurologist would support my decision, my neurologist IS writing me a referral for the trial here. So there! (voila! ... I can still laugh ... ! )
That referral comes with an option though. If I decide not to follow through. Hey, it’s a possibility. I’m just being honest. Another drug is about to be approved. Yes, approved. It does look promising, but ok I’m a bit sceptical. So many drugs were (or are) supposed to help. Maybe I just haven’t found my magic drug yet, or maybe it’s just about to surface. Could be?
And that is where I am. There is a slight chance of treatment near home, or I could soon be planning to travel to Russia!
Or still here, nervous at the prospect of chemotherapy, using treatment that doesn't seem to be effective, waiting for something that just might help. I know that sounds terribly depressing, but there are other drugs on their way, and if that is all I can comfortably do, that is where I could be. Here.
Or planning to head overseas.
No matter my final decision, I will be comfortable with it. I will have thoroughly explored all the options.
Either way, I’ll be hoping. Hope, the one decent thing all of us with MS - as well as our families and doctors - have in common.