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First Steps: Confessions of an HSCT Survivor

Confessions? Survivor? Oh puh-leeze. So melodramatic, Dave. I know, right? But when I was preparing to get an autologous hematopoietic stem cell transplant (HSCT) in 2010 for my aggressive multiple sclerosis, I really could have used an insider’s look as to what I was getting myself into. I was part of the HALT-MS clinical trial sponsored in part by the National Institutes of Health, and I’ll say straight away that it saved my life. But it was so new that I had few resources and experiences to lean on. Here are just a few lessons learned, and some personal confessions, after going through a stem cell transplant — complete with high-dose chemotherapy and a lengthy hospital stay — for my ornery MS. Part one of this series is about the first steps to consider before undergoing HSCT.

Researching HSCT is, well, complicated

Before you pursue this path of treatment for your multiple sclerosis, a little research is in order. Okay, a lot of research. Today you can find fan sites galore with all sorts of advice on HSCT. And like most fan sites, they are predictably rah-rah with little balance for the “maybe-don’t-do-that” side. The information can be helpful, but take it with a grain of NaCl, as people don’t tend to boast about failed treatments. I recommend reviewing past research (I’ve posted all HSCT abstracts from the past 15 years on the forum at ActiveMSers) and sticking to reputable, unbiased websites. One last thing: HSCT is not “stem cell therapy,” which typically does not use chemo or involve a hospital stay and has little research to back up its effectiveness.

Your neurologist will not be overjoyed

So your interest is piqued. Even in 2018, HSCT still has many detractors, and when you tell your neuro that you are thinking — just thinking — of getting a transplant, he or she will become the WORLD’S DUMBEST, LEAST PROGRESSIVE, MOST CONSERVATIVE NEURO EVER. While that may technically be true, in all likelihood your doc just cares for you. And unless it is part of a clinical trial, getting HSCT probably will mean going abroad and spending out-of-pocket anywhere between $50,000 and $200,000 for a transplant at a facility that may not be terribly experienced with the treatment, a not-insignificant safety risk. Fortunately for all of us with MS, there are powerfully effective treatments today, in particular Ocrevus and Lemtrada, two big guns that were not available to me at the time. Had they been, they may have influenced my decision on whether to pursue a transplant.

Your health insurance company will deny your claim

Even though I had multiple relapses and dropped 3 EDSS points in a span of months, going from using the rare cane to a walker, my insurance company said no. Even after I produced dozens and dozens of positive studies, many in prestigious journals, they said no. Even after I had exhausted all available FDA-approved treatments for MS (Tysabri included) and was vying to participate in a trial backed by the US government, they said no. Until Phase 3 HSCT trials show widespread, unassailable success, insurance companies are going to say no virtually every time (with the possible exception of clinical trials). Don’t take it too personally. Or do, and fight them for five years and get your money back with interest along with an article in the New York Times.

The risks are plentiful. And you likely won’t care

If you are dead-set on getting a transplant, the use of the term “dead-set” is a realistic conclusion. But you will mostly ignore it. Your brain will rationalize that serious complications happen to other people. You will also scour the internet for stats that show it is safer than mowing your lawn or texting while crossing the street or some such thing. While HSCT has gotten safer over the years (the consent form I signed listed the risk of death at an admittingly frightening 1 in 20), it is still the riskiest MS treatment. By far. Bottom line: even today you have better odds of dying from HSCT complications than you do of winning $7 in the Powerball. There are other significant risks too, from likely infertility to permanent hearing loss (due to life-saving antibiotics) to potential blood cancers years later. It goes without saying, make sure your will and advanced healthcare directive are up to date.

Going into HSCT with realistic expectations is challenging

I’m an optimist. You don’t get HSCT if you think it isn’t going to work. But try to dial back the idea that this is the Holy Grail of MS research that will rid your body forever of this nastiness. Gone, like in Alien when that bugger popped out of that dude’s chest and scampered away. Holy Jesus. Sure, the alien left his body, but it didn’t end well. Know that after HSCT most people will not experience a dramatic reversal in disability, and the odds of the transplant holding off your MS for 5 or more years is considerably higher for the ideal candidate (one who is young, recently diagnosed with aggressive MS, with therapy failures) than for those with progressive MS who have had the disease for years. Tell yourself pausing progression — not being cured — is the goal, and any gains are gravy.

So that’s just a beginning taste of my HSCT adventure. Indeed, I could write a book on my experience with this topic, which conveniently I am currently in the process of doing. But that will take many moons. For the time being, MultipleSclerosis.net readers can look for more HSCT stories from me right here (along with many other less-stressful tales). If you have topics/questions/concerns you’d like me to address in future HSCT articles, please post them below with your comments. Until next time, be active, stay fit, and keep exploring!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • aminfla
    3 weeks ago

    My wife had the cousin disease to MS which is CIDP. In my humble opinion nothing beats HSCT for proven results and lack of negative effects.
    In January, a JAMA study of 110 patients with relapsing-remitting multiple sclerosis, the most common kind of MS, found that 98% of patients who received hematopoietic stem cell transplants showed no evidence of disease activity at year 1, compared with 21% of patients who took standard medications for MS. After five years, 79% of the transplant patients showed no evidence of disease activity, compared with 3% of patients on standard medications.
    This says it all! Look at the statistics of risks and even deaths(the DANGEROUS) treatment shows. 3(one due to staff error, one due to a heart condition that now prevents a patient from receiving HSCT and one from an infection that could not be stopped). Pretty good numbers! Dr Burt had refined HSCT to a very successful and pretty darn safe procedure.

  • Shelby Comito moderator
    3 weeks ago

    It’s important to keep in mind that treatments can affect people differently, but HSCT has definitely been very beneficial for some. Thanks so much for sharing your research and opinion here @aminfla, and I hope your wife is doing well.
    – Shelby, MultipleSclerosis.net Team Member

  • aminfla
    3 weeks ago

    My wife is as if she had never had CIDP. That is how well the HSCT worked. As of 2016 75 people had had HSCT for CIDP alone(for which HSCT was more successful than RRMS. Rather than “SOME” JAMA figures showed 98% of RRMS patients were in remission and no new lessions after one year. 78% after 5 years for RRMS. An amazing set of figures comparied to any drug as an alternative.

  • Salina
    2 months ago

    Hi Dave, thanks for sharing and I am sorry that the treatment was not too successful for you. Would you consider doing it again? I have not had HSCT yet but I am seriously considering it.

  • Emersontoby
    4 months ago

    Hi Dave,
    Thanks for putting this out there. I am seriously considering going to do the HSCT Treatment, and looking into options in India and Mexico. It seems it’s been 9 years for you since you had the treatment and it seems, from what I’ve read, to be still working after the years. I have and currently gone through 28 cytoxan infusions to treat my ms, not sure if that amount of past chemo will disqualify me, but we’ll see. Anyway just wanted to thank you for all the info, you are absolutely correct, there is no patient info out there.
    Best,
    Toby

  • aminfla
    3 weeks ago

    There is a large amount of info out there. JAMA, BMT, EBMT journals loaded with statictics.

  • MarlinCRPH
    7 months ago

    What astounds me is the fact that a proven treatment to halt, or prevent further decline is not fast tracked. I know the process is complex, and can be dangerous. The benefit outweighs the risk. However, MS patients are waiting, suffering, and declining. We need HSCT fast tracked NOW. My MS Dr., and I discussed the future of MS treatments a few weeks ago. She admitted after I asked if HSCT the real deal. She agreed HSCT is the future, is the closest to a cure, and the magic bullet. She said HSCT would be available in 2024 if all goes well, after I asked ( 14 years since you first received HSCT ).
    We have a tool to halt MS, so why isn’t the MS society, and MS community not insisting on the best proven treatment to help us. Let’s get motivated, and write emails to FDA, MS society, and etc to speed up the process.

    Lemtrada has many high percentage potential severe adverse reactions that are awful. Lab tests for 5 years to oversee any complications that may arise for a drug that may not halt the progression. Ocrevus is new to the market. Thus, we may not know about the risks vs benefit for years to come. Tysabri is effective, however the JCVirus, and the PML infection is a real concern. I have been on Tysabri since 2013 thru 2019. However, my Tysabri JCV is trending up thus we are planning to stop in a few months. I may switch to Lemtrada per the Dr.. Lemtrada/Ocrevus/Tysarbri are band aids in my opinion, they do not halt the progression, they just suppress the immune system to slow the progression.
    HSCT isn’t a bandaid. HSCT is proven treatment to halt MS to reboot the immune system. Do we chose a bandaid or a treatment proven to halt the MS progression. I am glad I found Dave Bexfield because he is on a mission to help motivate, and educate us. Open up your computer, or your smart phone. Send Pro-HSCT emails to help us get access to defeat MS. 2024 is a long time to wait for the best proven treatment per the experts/studies.

  • aminfla
    3 weeks ago

    Doctors just want PAYING CUSTOMERS not cured patients with no need to make office visits and get new prescriptions and followup tests. I worked in the drug industry and could curl your hair with behind the scenes info on the interactions between doctors and drug companies. This is why HSCT is kept a little secret. It works. Drugs have very limited success. And that success is only a temporary success.
    My wifes neuro(CIDP) got upset and had us leave his office when he told her, “If you go get HSCT the next time I see you you will be in a body bag!” We went back to his office after HSCT. (Before HSCT my wife was on a walker and heading rapidly toward a wheelchair). WHen my wife danced in his office 3 months post HSCT he said, “You need to leave my office now. We are done here!” Of course I guess his not getting $17,000 every 3 weeks from us upset his retirement plan. HSCT is the best thing out there.

  • Dave Bexfield — ActiveMSers author
    7 months ago

    Thanks Marlin, doing what I can. For the right patient, HSCT is devastatingly effective.

  • Karenalbs
    7 months ago

    Hi Dave,
    Thank you for sharing your experience, it’s, we pray every day for some new miricle drug or cure. How do I find out if my husband would be a candidate, I’m having trouble finding locations that do this treatment and like you said in your article his neurologist is not supportive so I would appreciate any advice you can offer.
    Thanks, Karen

  • Dave Bexfield — ActiveMSers author
    7 months ago

    Karen, sorry for the delay. In the US there are MS HSCT clinical trials that you can research at clinicaltrials.gov. There are several ongoing transplant trials in other countries as well. Some unregulated overseas sites perform the procedure, but that is not my area. Give my best to your husband.

  • Littlev
    2 years ago

    I really like Dave Bexfield’s statements on the stem cell transplant treatment for MS. I had my experimental treatment done in Seattle WA in 2010. As I did live in Nebraska at the time,(I had to live in Seattle for 6 months with different caregivers who came out to help. All paid for by a fundraiser that my friends and neighbors through for me) I knew if I didn’t get the chance to do this procedure I probably would not be alive today since my MS was very aggressive. I was fortunante enough to have an MS doctor who was just as pro active as I was when it came to my disease. Even though I was in RRMS I know it was only a matter of time before I would be thrown into progressive MS and then into a life of living in a 24 hour home care facility. I too had to fight for my procedure to be paid, but once they realized the monies they would be paying for any future treatments and drugs due to my MS being so aggressive (seeing the results from those who had already gone through it) I think the insurance company realized it was better off paying this now and being a part of what could be something great for MSers down the road. And that realistically the cost would be cheaper in the long run. Since MS drugs can run anywhere from $60 thousand a year or more. I do have to admit it was somewhat daunting signing away your life as they describe as much in detail as they could about what could go wrong and really never expressing what could go right. But in reality my MS wasn’t just a type of disease that I could have dealt with alone. I was losing cognitive abilities, living in constant agonizing pain and starting to have difficulty swallowing. It was just getting worse. I just hope and pray that Phase III of this study happens soon. Unfortunately all the research I do I have not heard anything about HSCT going into the third phase. It makes me sad. And yet again it’s not for everyone.
    FYI; I still have MS it wasn’t a cure! I can walk with out an apparatus, my cognitive abilities are not really back to normal but pretty close, I can swallow, I can travel but still suffer from MS fatigue and all the other amazing side affects from the treatment. But in reality if I only had these last eight years after the HSCT I would totally do it again. It wasn’t easy! But neither is MS. I just hope all the information they gained from people like Dave and Myself has helped to make the MS community better for new drugs or new treatments.

  • Dave Bexfield — ActiveMSers author
    2 years ago

    Always great to hear from a HALT-MS colleague. I am hopeful BEAT-MS, the Phase 3 version of our trial, will kick off later this year, but nothing is confirmed to my knowledge. Like Littlev said, this treatment is not for everyone but it did save our lives, and we hope Phase 3 will happen soon. Thanks for the insightful comments.

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