HSCT Is a Controversial MS Therapy. Would You Have It? I’ve Decided!

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What's Important Now

What's Important Now

There is little doubt that HSCT is controversial as a treatment, and some even say a cure, for multiple sclerosis. Some talk of great benefits; others feel the risks involved are too high.

Then again, if you look at the side effects listed for the various disease modifying therapies (DMTs), they can be frightening, with death sometimes being one of them.

It’s all a matter of weighing the anticipated benefits against the risks that may possibly affect you.

And, above all, having considered everything, every fact available, you have to remember that the ultimate decision is yours — and yours alone.

Two days ago, on Multiple Sclerosis News Today’s Facebook page, I let my position be known. I have done my research, I have talked to many patients with different forms of MS who have undergone the treatment, and I have talked with one of the world’s leading doctors who perform the treatment.

HSCT is Controversial: Decision Made

In short, I have made my decision. If medically suitable for it, I am going to put myself forward to have HSCT – autologous hematopoietic stem cell transplant. This is a procedure where a patient’s own healthy stem cells are harvested, then chemotherapy suppresses the faulty immune system. Finally, the healthy cells are reintroduced to build an immune system that does not have MS.

So, on Sunday, Oct. 9, I’ll be flying to Moscow’s A.A. Maximov Center to undergo four days of testing and medical assessment to determine if I am a suitable candidate for the therapy. Of course, there is no guarantee that I will be, but even if not, I’ll be armed with the results of an amazing series of medical tests that, other patients have told me, can reveal other problems that can now be treated.

Dr. Denis Fedorenko
Dr. Denis Fedorenko

I interviewed Dr. Denis Fedorenko, who leads the HSCT therapy team in Moscow, which resulted in me writing three columns here. And it was during our second conversation that I asked whether my irregular heartbeat (atrial fibrillation) would rule me out as a patient. To my amazement he said it was “not, by itself, a contraindication,” but that I’d need to go to Moscow for a thorough assessment.

And that is what is happening in October. My HSCT journey – some may call it an adventure – starts then. Hopefully, it won’t end then as well.

What of the risks? From everyone I have spoken to who has had HSCT, from research involving hundreds of cases, and from the opinions of many (though not all) within the medical profession, I have absolutely no doubt that the possible benefits far outweigh the possible risks.

Conversely, I have never had any form of DMT and, quite honestly, the possible, albeit rare, side effects are just too much to face.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis. 

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Ian Franks is Managing Editor of the Columns division of BioNews Services. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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  1. Lamar Freed says:

    The kind of risks HSTZ involve go far beyond any of the immune modifying therapies available. Nevertheless I have also discussed this with my wife, a physician. Trained as a psychologist, now disabled, I know how to read the research and the demographics. I have twenty or thirty years of life left. It’s not enough time for my brain to recover from the damage MS has already done. Even with a complete reboot of my immune system, I am unlikely to enjoy more of life than I currently do. But with the high mortality rate of this procedure the odds go against it.

    If it proves effective in clinical trials held in countries with standards of care more rigorous than Russia or Mexico, and the death rate comes down, I might consider it.

    • Ian Franks says:

      Hi Lamar, you must be reading very different research results than me. The mortality rate of HSCT is very low. I would not be putting myself forward for it otherwise.

    • Ellie says:

      Chicago has done the most I believe and no deaths for MS. Overall low mortality rate. The misconception that HSCT is “dangerous” needs to be clarified. The drugs we take put us at risk of death or organ failure. HSCT involves chemo and blood products so there will always be risks but my quality of life has drastically improved and it’s been 2 months for me. I’ve already discontinued 3 symptom medications. This is the closest option to a cure.

    • Daniela says:

      HSCT is a once and done procedure compared to the risks of living with MS everyday, and the ongoing risks involved with DMD’s. I just had HSCT in Chicago with Dr. Burt, and I would do it again!

    • Jodi johnston says:

      I thought only one person has died? I get frustrated with the help that’s out there, and. Because I live in Canada we are never able to receive treatments that our out in other areas of the world!! If I got a chance to get this procedure done I would be right on it. I have already gone to India half way around the world to get the liberation treatment done (CCSVI). As soon as it was done, I felt the blood releasing in my neck and flowing down! It was amazing! I could walk better, talk better, didn’t have to think about what I was going to say!! I think it is one of the top reasons I am doing better than any anyone in my support group. I walk the best, I still drive, I still work(very part time) I also have gone on to take Famyra and it helped me walk better in 3 or 4 days, if even that long and I’m still on it! I get IV steroids once a month which helps bring me back to life a bit more. All i want to say is I’m tired of hearing all the negatives going on about treatments when I feel Canadians are more in the dark than a lot of other countries. I do not want to move to the states and would not bring my children either. Sorry all the doctors and neurologists are against most of the new treatments. Including CCVIS. I went and got it done anyways and told them all about it. I still have stents in my neck and I have primary progressive ms. I will do anything to get more help. I have gotten sperated from my husband and I have two kids. Luckily I had time to spend with them for the whole time they grew up. They are older now, but they don’t much with me anymore, I don’t know if it’s just because they’re tenagers or they don’t know what they can do with me even though I try tell them. Ok I will go, thank you very much!!

      • Ian Franks says:

        Hi Jodi, you are right,one person died during the Canadian clinical trial but that was using the myeloablative protocol which involves using extremely high doses of chemo therapy to destroy the faulty immune system. However, the non-myeloablative protocol used to treat MS in Moscow, Mexico etc involves lower chemotherapy doses that suppress the immune system. The lower doses have proved successful in treating MS and cause less stress on the patients. Anyone comparing the Canadian trial with the non-myeloablative therapies are not comparing apples with apples.

  2. Ken Bloom says:

    As you probably already know, there have been no HSTC mortalities in MS patients under Dr. Fedorenko in Russia.

    Please keep us posted on your journey and good luck.

  3. Christine Camping says:

    I had HSCT performed in Mexico this past March, under the care of the wonderful Dr. Ruiz. I’m female, 45 yrs. old, and HAD PPMS.

    • Karen Bludworth says:

      Hi Christine – I also have PPMS and thinking about inquiring to Mexico. I have been on the Facebook forum, I was just wanting your experience. Thank you so much for your time.

      • Christine Camping says:

        Hi Karen,
        What would you like to know dear? I’d be happy to answer any of your questions.

        I am a 45 yr. old female, 5 children, married 11 years. Dx’d (diagnosed) in Feb 2011 after the birth of my daughter.

        I had PPMS. It left damage on the entire left side of my body. I wear an AFO (Ankle/foot orthotic)brace & have no use of my left arm or hand.

        The hardest part of HSCT for me has been the recovery. I never thought about this period of time. I focused on getting on the waiting lists & getting HSCT ASAP, instead. No regrets.

  4. Laura Cummings says:

    Good luck!
    I’ll be anxious to learn about a positive outcome. I will be very interested in undergoing this procedure/treatment.

    I was diagnosed over 27 years ago during games my college senior year.
    Since then, I married an Army officer who retired in 2014. I am a proud mom of two brilliant children whose future is very promising, both will add positvely to this world and those lives they touch.

    My goal is to make them prouder of me and show them than there is never any giving up!

    I am lucky that there were no drugs for MS when I was diagnosed which encouraged me to do my own research.
    I’ve been on a healthy gluten free free diet for over 10 years. I excercise as much as time allows. I jog a treadmill mile daily and do a few minutes of yoga stretching. I plan to spend more time on both, but college bound children take priority.

    I am excited to think what a difference I could make with more energy!
    Which is why very interested in
    God Speed.

  5. Rhonda Danielson says:

    YES! Yes, yes and yes.

    I have PPMS, an uncle that died of MS, and based upon family genetics, another 30-40 years to live.

    My uncle died unable to walk, feed himself, deaf, blind and unable to talk. That means he couldn’t tell people how much he was hurting. He had no “quality of life.”

    Anyone with MS who lives long enough will end up like my uncle. That’s the nature of a progressive neurological disease.

    One of the ugly truths about the current set of DMT drugs is that ALL of them eventually stop working.

    I do my research using quality and reputable science based resources; not limited to just the CDC and FDA in the United States. After all, there are many quality medical research institutions that have been in business longer than the CDC and FDA have existed.

    Based upon what we know about disease process (MS or any other autoimmune disease) stem cell therapy, either autologous mesenchymal or blood, or embryonic (cord blood or embryo)is the only existing viable treatment. It may not be a cure, but it is a treatment with a very high rate of success. A success rate 100% greater than DMT drugs.

    So, yes. If I had the ability to do HSCT, I would.

  6. Jess says:

    good luck and safe travels! I work as an RN at Stanford Hospital and it’s so exciting to see their progress. I also have MS (RMS) and have been very reluctant to go on DMTs because of all the risks they entail, especially PML (I am JC+). I know you aren’t as big of a believer in the diet/lifestyle approach but I feel it’s one thing that’s in my control. My neurologist at UCSF is leading a study for rHIgM22 (Phase I) & while I can’t participate I do hope it is successful – a remyelinating med would be fantastic! I wish nothing but the best for you and look forward to reading about your journey 🙂

  7. dianne welgan says:

    Hi Ian,
    Did you ever consider fetal stem cell treatment as opposed to HSCT?
    If so, what were your deciding factors? I suppose you know that fetal stem cell treatment is half the cost of HSCT.
    Thanks for your all your information

    • Ian Franks says:

      Hi Dianne, my research showed that autologous HSCT, where you receive back your own stem cells, is the much safer option without having the risk of my body rejectibg the ‘foreign’ calls.

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