Everyone knows, I’m a science geek. I have researched how to treat my rare, unrelenting and unresponsive disease.
Last February 2022, I had HSCT in hopes of ousting my Poltergeist. I will forever be indebted to everyone for funding me for that. It is a two year recovery and the best case scenario for someone like me with advanced disease and heavy C-spine lesion burden was to simply halt the decline.
Seven months later, I have had major triumphs of functionality never experienced before in the last 8.5 years. There’s been some crazy drastic downs as well, making my head spin continuously wondering which direction it was all going. Overall, my disability level is decreasing.
This is where my miracle story is at. I feel like a statistic that doesn’t exist in clinical trials completed with HSCT and MS.
A number of people keep saying how was your vacation this summer? I shake my head thinking, it wasn’t a vacation. I was working to recover, and just live, whatever I could eke out. Huge gratitude to those who made many amazing days possible for me. You know who you are.
Unfortunately, I have had a little setback. I started writing this blog in August when a small relapse erupted (return of severe itch all across my body, plus another ugly symptom). I was told there was a chance at 6 months mark this could happen. It doesn’t mean HSCT didn’t work. I’ve had some treatment already and am waiting on clearance for Rituximab shortly to shut the relapse down.
Looking forward, like everyone I want to live without pain, bodily function close to normal, ability to walk, exercise, not live in poverty, a life without incessant discrimination, opportunity for joy, and feel hope in the future. To dream.
While I don’t expect I will be mountain bike or ski racing again, I desperately hope for more improvement.
This is why I applied for entry into a FDA Phase II Clinical Trial for Mesenchymal Stem Cells (MSC’s). Click here for more details on the trial.
Unfortunately, I didn’t qualify for entry into it, but have successfully gained entry to the treatment via the Right To Try legislation. This was a complicated process and it means that I will be able to access the treatment, although experimental at this stage, as many times or as few times as I need in the future.
The trial itself is being run by a non-profit called Hope Biosciences Research Foundation based out of Houston, TX.
I went to Houston August 22nd, and was finally able to meet my very special friend Amanda who had HSCT last October as well. She took care of me from the moment of my arrival to my departure. Plus we chatted nonstop! She’s a powerhouse of strength and brilliance. Thank you for everything my friend ❤️
In order to start the process of future treatment, we needed to harvest more of my own stem cells (via adipose tissue extraction). These are called mesenchymal stem cells.
Stem cells reside in different parts of the body and during HSCT they are harvested from the bone marrow. At Hope Biosciences, they have you go to a plastic surgeon to remove the stem cells from adipose tissue (fat). They were taken from my belly (see YouTube below: WARNING GRAPHIC).
The stem cells are separated from the fat, cleaned of toxins, and mixed with Hope Bioscience’s proprietary media to culture them in the lab. It can take up to 8 weeks for this to be completed. Click here for the process.
I will need to return to Houston in the future for my stem cells to be put back in me. This treatment is for restoration and regeneration only; not disease control. There are no side effects. No chemo. I have the option of having half of it put directly into my spinal cord (intrathecally) which an interventional radiologist does. Yup, that’ll be painful, but if it gives me better chance of improvement, I’ll do it.
Amanda, another girlfriend Sagirah and I toured their facility. I was only allowed to take certain images and will post in another blog. The three of us have all had HSCT at Clinica Ruiz and had a lot of very direct medical questions for them. I felt good after leaving Hope Biosciences.
Admittedly, there is no guarantee this will give me more functionality, since it’s still in the clinical trials process. Regardless, it is extremely promising regenerative medicine and I am very hopeful and excited to start this next previously unplanned stage.
The downside is that it will cost me, although at wholesale cost from the manufacturer (Hope Biosciences LLC.), as I am receiving this via the Right To Try. I will explain what the Right to Try legislation means in a future post.