If you gave me 20 or even 100 guesses, I would not have thought my annual MS check up with my neurologist would bring the words “bone marrow transplant” into my life… but it did.
I had my Ocrevus infusion in early February, followed by an in-person visit with my neurologist. My heart rate was racing, my blood pressure plummeting and that was just a side effect from the morning’s infusion. I was tired, cranky and annoyed at waiting for my medical team to tell me the same thing I always hear, “You’re on the best medication we have, but there’s nothing else we can do.”
I don’t take it personally. I have tremendous respect and appreciation for my MS team. But people have their limits (even doctors) and I thought I had reached the limit of modern medicine to prevent my MS progression. You see, I’m a fun anomaly – my MRIs have been stable for years but my neurodegeneration is on a downward spiral. So hurray, I do not appear to be acquiring more lesions. But the ones that are there are dirty bastards.
Remember walking without assistance? Nope.
I walked out of my office in March 2020 at the start of the pandemic and over the next two years lost balance, proprioception and significant mobility. Amidst insane workloads, high pressure, unprecedented stress and fear of COVID and isolation, I was forced to come to terms with the fact that I needed help to stand, to walk and to function. For anyone struggling with this, don’t fight it. Get all the mobility aids you can, try them out and USE THEM. I now have an Alinker, multiple canes and a badass rollator. This loss of mobility was in addition to the crippling fatigue I’ve been battling (and I think hiding?!?) for years.
So my neurologist says, “I think you should consider bone marrow transplant.” To his credit, he paused and waited for me to catch my breath. I’m grateful for his superb bedside manner, calm demeanor and general nice-guy likability (they aren’t all like that… I’ve had a few). I was blind sided, dumb founded and quite simply, stunned. Was I silent? Probably not. But it felt like I was speechless — and for those who know me, that’s rare. He dove in with the explanation, medical and clinical process, approvals, timeline and efficacy. Most importantly, he told me what they don’t know.
I appreciate the clarity with which he conveyed trying this option as well as his inability to offer a guarantee. This grueling treatment option was cause for hope but the phrase “cautious optimism” was apropos. I’m not much of an order taker, and his delivery made me feel like we were partners, like we were in this together.
HSCT or bone marrow transplant
The goal of hematopoietic stem cell transplant (HSCT) is to reset the immune system and stop inflammation that contributes to MS. A specific type of HSCT, “autologous,” or aHSCT, uses stem cells from your own body instead of using donor stem cells. The current clinical trial, BEAT-MS is underway as we speak.
Let’s be clear, this is not standard of care for treatment of MS. It’s been around in the cancer community for years. The process, drugs and safety protocols for cancer patients are well established. But this is relatively unchartered territory in the U.S. and very smart medical professionals are trying to figure out the best protocol, how to measure success and the clinical criteria for recommending this treatment. There’s a lot going on.
A prescription for HOPE
This is not a cure. A phrase that has been said by almost every doctor, nurse and janitor I’ve encountered so far. The hope is to stop my MS in its tracks before my disability worsens. It is not meant to heal the damage to my central nervous system that has already occurred. But much like a computer, I’m going to reboot… and hopefully erase the errors that occurred and start fresh without broken code. Imagine an immune system that protects against outside invaders rather than attacking itself? What a novel concept.
Hurry up and wait
I’m in the midst of the waiting game and I don’t know the rules of play. My clinical team is exceptional but we don’t know how long anything will take and are at the mercy of insurance. In fact, despite receiving approval for an oncology consult and two days of rigorous testing, it is expected that I’ll get denied and they will have to appeal. How backwards is our insurance world when we know going into this arduous process, that insurance companies will actively block individuals from receiving the care their medical team deems worthy?!? That’s right, let’s give our medical professionals MORE to do.
With each stage I’ve sought as much information as I can get. My type A personality wants ALL THE INFO! You can read my post on the resources I’ve found helpful for anyone else exploring HSCT.
I hope my musings help others who have MS and never heard of this treatment (that was me up until my February appointment), as well as friends and family members so they can stay abreast of the plethora of overwhelming medical shenanigans.
If you have questions about HSCT or the process, feel free to reach out or leave a comment below. I would love to hear from you.