HSCT Part 1: The Decision-Making Process
The decision to pursue autologous hematopoietic stem cell transplant (aHSCT) is a complex one, especially since very few patients have their neurologist's support. Autologous means derived from one’s own bone marrow. Beyond the major expense, recovery can be long and arduous (6 months to 2 years), and the four-week process itself sounds hideous. Despite these concerns, I am quite intrigued by HSCT and the possibility of it being a game-changer for my aggressive MS.
If I had known HSCT existed when I was diagnosed (2014), I would’ve done it in a heartbeat. Basically, I’d have done anything to get rid of this monster.
Deciding to pursue HSCT for my MS
I had many factors to consider. This is a summary of how I came to my conclusion in hopes that it may help others.
My quality of life
At the forefront, my MS poltergeist never relented no matter what I did nor how hard I tried. I felt as though I could never get on with my life as the daily survival took all of my energy, leaving me scrambling to catch my breath in between the relapses and decline.
I had to dig deep and ask myself some key questions, for example: could I keep living like this? Did I feel like I had a good life? Or was my MS at the table of every activity, desire, and need I had? The answers to these questions were clear as day. I felt like a wild bear trapped in a mouse-sized cage looking out at life through the bars. Something had to give. And fast.
Out of options
Aside from examining my quality of life with MS, I had to know I’d tried absolutely everything available to me pharmaceutical-based, including all of the best and most cutting-edge MS drugs (such as Alemtuzumab, Ocrelizumab and Cladribine). They all failed me for various reasons.
As far as alternative-based treatments, supplements, and diets, the list was long and never exhaustive. Everything helped to a certain degree, but nothing had lasting effects on neither my symptoms nor disease control.
That left HSCT. I evaluated the pros and cons carefully.
Weighing the risks
The risks for me were something I’d pondered heavily for several years. The possibility that it might not work for me was obvious, which would mean all the money and time spent recovering would be for naught. Worse though, there was/is the possibility that I may actually get worse. That is, the chemo is so strong that it might permanently damage the exposed axons remaining in my spinal cord. Adding fuel to the fire, it weighed heavily that my MS neuro repeatedly said in previous years it wouldn’t work for me.
Considering eligibility requirements
That aside, in order to qualify for the treatment (if it’s even approved in one’s country), there are particular criteria that need to meet. In Canada, it is not an approved MS treatment and is done under the guise of research. I recognized I was outside of their (very narrow) eligibility requirements, so if I was going to have it I would have to go out of the country and pay for it. That opened the door to needing to research facilities around the world, and select which was best for me.
Researching first-hand experiences
As a person who believes in science data more than miracle stories, I still felt it was key to hear real-life experiences of people who’d had HSCT (or were going through it) and what their background was with MS. I queried people on how long they’d had MS, which neural pathways had been lost (ie. sensory, mobility, cognition, vision, etc.), and whether their lesions were brain or spinal cord dominant. Did they have constant relapses or new lesions in the white matter? Most importantly, were they happy they’d had it?
Uncovering some hope
What I found was that very few people regretted having had HSCT. True, it doesn’t work for everyone, however, the majority were ultimately grateful that HSCT had stabilized their decline. Some had unreal life-altering success stories. One person ditched their wheelchair (and the nursing home) after having severe MS for many years. Others got rid of their cognitive fog or severe fatigue.
My head was spinning with hope from these stories, but I kept that tempered by the less-than-hopeful clinical trial data (that applied to me). People around the globe were traveling to Russia or Mexico to have this done. In Mexico, Clinica Ruiz had done over a thousand transplants for MS patients. That’s a lot of experience!
Discussing with my HCPs
Once again, I spoke to my various clinicians: General Practitioner (aka PCP), MS neuro, and other medical practitioners. None were against my decision, and they agreed I had nothing to lose. My MS neuro was surprisingly supportive this time and thought I might not have relapses anymore. He was happy to find me a top-shelf hematologist for my return. While no one said, ‘this is your ultimate cure Jenny’, upon reflection they also didn’t say, ‘no don’t do it’. Sometimes it’s the words people don’t say that I hear.
My final decision
Strangely, the decision for me after all this research came down to one simple question: what would my life be like if I didn’t do HSCT versus what could it be like if I did?
The answer: in all likelihood, my downward trajectory would continue if I didn’t have it. In contrast, if I had HSCT I would have a chance of stabilizing my disease, or better yet, perhaps some improvement. Like wow, what a novel thought!
I am not suggesting this is for everyone, but rather it is simply my thought process and ultimate decision. I have hope and it feels really good.
I leave January 30th...
Here are a few of the resources I used in my research:
How often do you use assistive devices to help manage your MS?