Recovery Blog

AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED

UPDATED 23 December 2022

Two conflicting studies about HSCT and progressive MS have surfaced in the last two months. The first was an apropos article from Tomas Kalincik, PhD, of the Royal Melbourne Hospital in Australia in a late-breaking presentation at the 2022 meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The second was by Matilde Inglese, MD, PhD, study author and professor of neurology at the University of Genoa, in Italy, which was published in Neurology on December 21, 2022.

Dr. Kalinck's Study

The presentation was regarding AHSCT and Progressive MS. Kalinick's findings have long since been suspected, yet there are defintely some high-profile cases which contradict this new research. My mentor, George Goss, mentioned througout this blog, is one of them. Without George's detailed documentation of his experience, I might have not undergone my own such treatment. (My diagnosis at the time of my procedure was Relapsing MS.)

FROM: https://www.medpagetoday.com/meetingcoverage/ectrims/101495

New Evidence Sheds Light on Stem Cell Transplantation for Progressive MS

— Disability, relapses no better than disease-modifying drug

"Autologous hematopoietic stem cell transplantation (AHSCT) was not superior in preventing relapses or reducing disability progression compared with natalizumab (Tysabri) in progressive multiple sclerosis (MS), new research suggested."

Dr. Inglese's Contradicting Study

Dr. Inglese found the exact opposite results for patients with SPMS. The majority of the patients with similar disease progress and symptoms actually fared better with HSCT than they did with DMTs. As summarized by MS News Today:

"More transplant recipients also experienced clinical improvements that were sustained after three and five years. After 10 years, disability scores improved slightly for transplanted patients compared with worse scores for patients on medications." 

Matilde Inglese, MD, PhD, commented:

“Our results are encouraging, because while current treatments for secondary progressive MS have modest or small benefits, our study found stem cell transplants may not only delay disability longer than many other MS medications, they may also provide a slight improvement in symptoms.”

Read about her article in Neurology: https://n.neurology.org/content/early/2022/12/21/WNL.0000000000206750

Hematopoietic Stem Cell Transplantation in People With Active Secondary Progressive Multiple Sclerosis

 

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Check-In (Year 5.2)

I've been getting nudged to update this blog. I realize that I've been silent to an almost negligent degree. So sorry about that. I've been trying to move on from being "the guy who did the bone marrow transplant" to just being more of just some "guy."

Eight years ago, I saw myself as "the guy whose whole life changed due to a sudden medical problem." I bumped around for almost two years, constantly worsening until I was finally diagnosed with MS. Before the diagnosis, I surely thought I was going to soon die. When I was diagnosed, I had no idea what MS was, but at least I had new hope because now doctors could treat me, and hell, I had modern medicine to cure me. That new hope didn't last too long. Now I was being bounced around from drug to drug with little improvement. I thought now I was going to be kept alive longer while I continued to suffer.

Then I found HSCT as a real, potential solution. I had new hope. My title changed to "the guy who was going to go overseas to get a non-FDA-approved, experimental stem cell transplant." I held that title for only three months until for a month I became "the guy who's in Mexico getting a non-FDA-approved stem cell transplant." People made up their own reasons why the FDA hadn't approved this procedure. The most common misinformation I heard was that it was a moral issue due to the killing of a fetus or something like that. In the meantime, I suffered. I had to explain that my transplant was autologous, and it was still experimental because of the mortality risk.

Read more …Check-In (Year 5.2)

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No New Activity on MRIs (Year 3.6)

A couple of weeks ago, I had four MRIs: brain stem, C-spine, T-spine, and L-spine. I'll spare the details about the cost and pain they caused me. The great news is that there's no new visual evidence of activity related to MS! (Yes, that's great news; however, even better news would have been a decrease in lesion size or quantity; read on.)

I've had MRIs at annual intervals since I recovered from the chemotherapy given as part of the HSCT procedure, beginning about six months post-transplant. This was my third annual set; however, this was my first set that went all the way from head-to-tail. The tests were done without contrast (no gadolinium).

Read more …No New Activity on MRIs (Year 3.6)

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Bloodwork Back To Normal (Year 3.3)

I haven't had my bloodwork done in over a year now. After the HSCT and the six extra bi-monthly doses of rituximaub, my white blood cell (WBC) count never got over 3,800/ml. Low normal for me is considered to be 4,000 - 11,000. I was told that this was not dangerous because my neutrophil count was normal, and they are the body's first line of defense against infection. They also told me that some people who do HSCT never return to 4,000+, so 3,800 might be my new normal.

Well, surprise. A recent blood panel now shows my WBC to be 4,000. It just goes to show that it can take a few years for a body to return to normal. Still, it does continue to heal after HSCT, hopefully indefinitely. There's no doubt that I'm better in many ways than I was a year ago. And a year ago, I was better than I was a year before that. How many people with MS can say that they are slowly getting better?

Read more …Bloodwork Back To Normal (Year 3.3)

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Why Neurologists in the US Don't Recommend HSCT (Month +35.8)

I recently filmed a lecture for the local MS group. The MS genius, Dr. Timothy West, gave a fantastic 30,000 ft view of the world of multiple sclerosis from his point of view as a practicing clinician. He covered all the new technologies, current treatments, and the myriad of choices he must make in treating patients.

Someone in the audience asked, "what about stem cell replacement?" There were two interesting parts to Dr. West's answer.

First, he said that a patient's own assessment of his illnesses is much worse than how a doctor perceives it. That sounds plausible to me, almost to a frustrating level.

Second, he said that doctors practicing western medicine have an obligation to the Hippocratic Oath, which basically states, "first do no harm." According to societal norms, it's better for a doctor to do nothing and watch his patient slowly die than to intervene with a powerful drug and accidentally kill the patient. This is true even if the drug has a good chance of curing the patient and potentially saving his life. Doctors don't have the option of risking life if there's a less dangerous way. Think about the liability here.

Read more …Why Neurologists in the US Don't Recommend HSCT (Month +35.8)

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