Chronically Joyful

On July 3rd, a choice was presented to me that I never thought I could refuse. My new doctor is heavily involved in clinical trials, and seeing just how active my disease has been lately, he put an offer on the table I’ve had a very hard time swallowing. 

Take a new, standard DMT (disease modifying therapy) or go through a stem-cell transplant. 

The trial has a 73 – 76% success rate, so it truly did give me a lot to think about. 

What would it do? 

If successful, this would be similar to the Mavenclad, but the effects would be a lot more hardcore, for lack of a better term. In short, it would generally destroy and then re-write my entire immune system from scratch, effectively ceasing any disease activity from continuing. While Mavenclad was doing something similar with my T (a type of white blood cell) and B (also a type of white blood cell, responsible for antibody production) cells, this process would be a bit more intricate.

That’s a big deal, right?

But wait, there’s more!

What would this process entail? 

I would need to undergo full Chemotherapy, while being inpatient at my local hospital for 4 weeks. Generally, the standard side effects folks have had with this experience include (but are not limited to):

• Hair loss (pretty standard for Chemo)
• Higher risk of infection 
• Various types of Cancers (also standard when compared to side effects for most DMTs)
• Easier bruising and bleeding
• Risk of infertility 

This was a lot to take into consideration as someone who just turned 30, possibly looking to start a family of my own when the MS drugs will allow me. 

The notion that I could stop the progression of this illness that has been wildly out of control over the last year is very, very enticing. I went from being the easiest patient a Neurologist could have to one of the most challenging; I’ve been managing this illness fairly easily over the last decade, it’s just within this last year that it’s really blasted off into a world unfamiliar to me. 

This was not an easy decision to make. And one I might not even have the opportunity to make. 

There is a blood test I was just informed about – the Neurofilament Light Chain. It’s a biomarker that is promising in the realm of showing disease activity; I had this done in July, where I ranked very high and very active. Because I took the third cycle of Mavenclad this year, I had to take it again just to be safe and confirm that the Mavenclad is indeed not working for me. I just had this test done again in August and I am within the expected normal range. 

I am furious. 

I am furious that this path was even recommended to me, and I am furious that I even tried to dose this again, knowing what I do now. It didn’t work for me, and it stopped working pretty quickly after completion. Am I tied to completing the 3rd cycle for the next year and a half? Is it even safe for me to switch at this stage? Do I suck it up and just let it try to work again? Will year 4 be as difficult as year 3, where it’s illegal for nursing staff to even talk to me when I have questions? My doctor at the time knew nothing about this medication so didn’t forewarn me that the drug is only FDA approved through the first two years, and anyone who “chooses” to re-dose it is left to an island of their own. 

I thought long and hard about this journey that I’m currently on, and the moment that wrote my decision in the sand was this moment:

being told that I only have about 10 good years left in me before this disease, or complications from this disease, apparently kills me. 

I was also told I would never run again after my diagnosis 10 years ago and we see where that went, so I take this news with a grain of salt and a casual side of depression LOL. But truly, if I really do only have 10 good years left, then I absolutely want to spend those living every opportunity, with no regrets.

So, if ever actually given this choice in this mess of a health journey, I would happily choose trying out Ocrevus because it’s been about 5 years of being told it positively changed people’s lives, and allowed them the grace of finding some peace. I will learn more in November, when I will undergo MRI scans again to truly get the big picture of what’s happening in my brain.

So, reader, it’s been a bit since this has been updated, but that is a major part of the reason why! An update on where this goes is sure to come, but in the meantime, I wish you only moments that bring you joy!