In December, 2013, I will become one of the relatively few people with multiple sclerosis to undergo an exciting and unconventional autoimmune disease treatment called
autologous hematopoieic stem cell transplant (HSCT) at Northwestern University in Chicago. Out of the roughly 2 million people globally who have MS, just over 100 patients have received this treatment under the supervision of
Dr. Richard Burt, one of the world's top experts in the field of immunology.
MS is an autoimmune disease where the immune system mistakenly attacks the myelin sheath that insulates and protects nerves in the spinal cord and brain. As MS attacks continue, the body's central nervous system starts to short out and bad things happen to coordination, mobility, vision and other basic body functions. Early research trials have shown great promise in HSCT stopping this immune system attack. Because research data continues to be collected, Dr. Burt will not yet use the word "cure" to describe HSCT. However,
results so far indicate that HSCT is the closest thing to a cure that exists today. I am very excited to be part of this research.
The HSCT process, which requires chemotherapy and stem cell harvest over two months, is NOT quick or easy. You can see a complete overview of the procedure,
here. The transplant roadmap at that link outlines what will be my time commitment to medical procedures in Chicago. I am thankful for my supportive family as well as my my friends Anna, Tony,
+Doug Rohde and
+Sylvia Bachmann who will be accompanying me as caregivers and sources of sanity during parts of my treatment journey.
Why me, why now?
No doctor directed me to seek HSCT. In fact, my neurologist tried to discourage me when I sought the procedure on my own. Seven years of faithfully following his FDA-approved standard of care with MS drugs had failed me. I was in pain, crippled, scared and mad as hell. I couldn't legally punch him in the nose or key his Porsche, so I turned my anger into motivation to find better options. After screening out much online quackery and unhelpful advice to live on a paleo diet of free-range yak cheese, Tibetan prayer flags, quinoa and kale, I found legitimate technical white papers like
this one and
this one. I also started finding amazing stories like the young man in this
video who was part of an early HSCT research program. The video includes an excellent description of the HSCT procedure. These findings directed my successful letter-writing campaign to Dr. Burt and his staff
In June 2013, months before my first scheduled face-to-face meeting with Dr. Burt in Chicago, a vicious MS attack put me in a wheelchair and caused other severe neurological problems. But I did make it to Chicago in a borrowed wheelchair. Thanks to Goodwill for the wheelchair and Delta Airlines for accommodating the accessibly needs of a disabled solo traveler who did not know how to be disabled. Also thanks to Doug for straining his back getting my spasm-crippled body in and out of his truck. Every hope I had was hinged on making it to that meeting. The meeting was a success, perhaps partly because it was clear to Dr. Burt that I would have crawled to get there.
When I got back to Minneapolis, I faced the daunting prospect of stabilizing my condition until my HSCT treatment could begin. The best my neurologist had to offer was plasmapheresis, a dialysis plasma exchange process that temporarily removes the nerve-attacking antibodies in my blood plasma. It sort of works, so I guess I'm glad I left his Porsche alone. Though plasma exchange is now preventing nerve damage and has helped me start tenuously walking again, it is basically like bailing out a boat with a hole in it – new defective antibodies just keep flowing in from my defective, hyperactive immune system. Until I reset my immunity with HSCT, I am stuck with a semi-permanent catheter in my chest and weekly trips to a dialysis center. Through summer and fall, I have seen the dialysis nurses so much that they're starting to seem like family. Perhaps I should marry one of them... Wait, no, then she would not have to be nice to me.
Sobering realities and hope
MS severity varies widely from one person to the next. Correct treatment for one person is not necessarily right for another. Aggressive MS like mine often ends with the person permanently disabled and stuck in a wheelchair until they die. Though I pray for and admire the people I know who have come to terms with that fate, I will still fight to the last to try and avoid it myself. I am fortunate to have an audacious plan and something more than hope allowing me to think this is possible. And I hope this research will somehow help the larger MS population too.
One key to success with HSCT is not waiting until the disease progresses past the point of causing permanent nerve damage. Though my MS is severe and apparently drug-resistant, the good news is that my disease is still in an active inflammatory stage and has not yet progressed to an irreversible degenerative condition. This puts me at a balance point where the risk of treatment with HSCT is offset favorably by the odds that the procedure will halt the disease and improve my condition, perhaps to the point of total remission. My window of opportunity and time to act is now. Waiting helplessly for another year, hoping for the next MS drug that may or may not work, is no longer a forced option for me.
Chemo
Though "stem cells" is the trendy term that jumps out in the title of this treatment, high-dose chemotherapy, similar to what cancer patients receive, is actually the thing that will be used to stop my aggressive, nerve-flaring MS autoimmune attacks.
The high-dose, punctuated chemo used in HSCT is somewhat risky, but ultimately more effective and less damaging to the human body than the extended periods of low-dose chemo that neurologists sometimes prescribe for aggressive hard-to-treat MS like mine. The higher-dose chemo with HSCT is made possible by first harvesting adult stem cells from the patient's own bone marrow. Infection is a danger after chemo wipes out the immune system, so patient isolation and antibiotics are key to survival until the stem cells can be transplanted to rapidly build a new, properly functioning immune system.
Adult stem cells
The term "stem cells" tends to freak some people out, but before engaging me in a Bible verse duel, you should know that the HSCT procedure uses
adult stem cells, not embryonic stem cells. Really, check out the link. The science is fascinating and there is no ethical controversy surrounding adult stem cells.
HSCT also has nothing to do with the fraudulent easy-peasy stem cell mills in Latin America that have been exposed as snake oil ripoffs by
investigative journalists. Contrary to claims from the unregulated banana republic clinics, stem cells won't produce lasting autoimmune disease remission without first stopping the autoimmune response with chemo.
What, me worry? I could die from this procedure, but probably won't. As of yet, HSCT patient numbers represent a small sample size to base any medical statistics on. But I am an optimistic lab rat. So far, about 85% of people who have done HSCT had their autoimmune diseases halted, and, like the young man in the earlier video, many regained functional mobility to the point of feeling they are cured. Odds of mortality from HSCT are debatable; different experts with different agendas say anywhere from 0.5% to 5% mortality. Putting it into perspective, MS itself could kill me if it's allowed to keep attacking my brainstem.
Pay it forward
Despite MS, I've been fortunate to have the determination, energy, social support and available resources to pursue HSCT treatment. Though I'm still battling with my insurance provider and may have to pay for the entire treatment with my own money, I do not need or desire a fundraiser for myself.
However, I have been so
surprised and delighted by the many friends, colleagues and family members who have reached out and offered to help me during these past few very difficult months. I feel it would be a shame to waste all the goodwill and awareness of so many remarkable people, some of whom have family or friends also suffering from MS and other autoimmune diseases. So, please, please consider making a
tax deductible donation to HSCT research.
Donating directly to the HSCT program is important because most existing MS Society fundraisers are sponsored by large pharmaceutical companies with an agenda to sell very expensive MS drugs. Moreover, the vast majority of MS research is funded by pharmaceutical companies. HSCT is a procedure, not a drug, so it does not benefit from drug company research funding. HSCT research at Northwestern is funded primarily by grants from the National Institutes of Health, patients and donations. Donations lower the cost of treatment for future patients.
Thanks!
Wayne
*DISCLAIMER: Nothing in this blog constitutes medical advice. Nor should any of it be considered a credible source of facts or attribution for journalists. I am merely a self-educated patient pursuing MS treatment and sharing some of what rolls around in my addled brain along the way. The blogosphere is populated by lunatics, sages and fools. I may be one of them or all three. Believe and proceed at your own risk.
**My thanks to George Goss, Barb Yoder Coppins and all the participants in their moderated discussion groups for sharing information resources, encouragement, experiences and knowledge about HSCT.
