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HSCT and MS

What's Important Now

In July, I wrote about how Julia Browning was getting on three months after undergoing Hematopoietic Stem Cell Treatment (HSCT) with Dr. Denis Fedorenko at the A.A. Maximov center in Moscow.

She was doing well, as you can see here.

Now, as a further three months have gone by, it is time to catch up with Julia’s progress at her home in the Bahamas — and you really must read this until the very end!

Interestingly, her recovery seems to have been unlike other patients who chose this treatment. She said: “I was told it would be a roller coaster ride.  So far, I have just been seeing improvements.  I had the usual stiffness and sore legs once I returned home, but I had expected that and just pushed it to the back of my mind and continued with life.”

Baxter
Baxter

Unfortunately, another part of her life has taken a hit, as Julia explained: “My constant four-legged companion, Baxter (pictured, left), became ill and was in and out of the vet on a drip. After two weeks I flew him to the U.S., where he was seen by a cardiologist who told me he had severe heart disease. I had the choice to keep him alive and see if he could recover some of his health, or let him go peacefully.

“He had lost 9 kilograms in two weeks, and I was having to force-feed him and attempt to get water down him. I wasn’t able to get his medication into him, which was vital for his partial recovery. I chose to let him go, which absolutely broke my heart.”

Family members decided that Julia should get away from the house for a while, to help her deal with Baxter’s loss. So, after confirming with Dr. Fedorenko that she could travel, they all went to Canada.  It was while they were there that Julia started walking some 16–18 kilometers (about 10 miles) per day while sightseeing.

“My husband had told me that I would need to rest, but I felt fine, so once I returned home I decided to keep up the walking,” she said. “I worked my way up to 11 miles per day. Because I have always been a fit person, Dr. F.  gave me his blessing to push myself in exercise.”

HSCT update: Walking and swimming

Julia Browning, 'HSCT Superwoman'
Julia Browning, aka “HSCT Superwoman.”

“A few years ago I used to watch adults swimming in the school pool when I was photographing students during their sports days. I remember wishing I could join in, but didn’t feel strong enough. My right knee is still giving me a few issues when I get tired, so I decided to try swimming because I knew it could help. I confirmed with Dr. F. that I could swim in a public pool, and then contacted one of the women who swims in the mornings. She told me to come down and give it a try. The coaches were fantastic, welcoming me to join for a week to see if I could do it. I used to be a swimmer when I lived in South Africa, so I very quickly got right back into training again. I now swim a mile each morning. Some days I am strong, but some days I really have to push myself.”

There was one panic a few weeks ago when Julia woke up with a numb left ankle. She explained: “My previous stem cell treatment, that was not HSCT, seemed to have gone well … until I hit the six-month mark and then the numbness started to creep back in. I thought the same thing was happening again.

“But I contacted Dr. F. who told me he thought I had just overdone it a little, so I took a break from swimming the next day and things returned to normal, thankfully.

Storm, the Brownings newest dog
Storm, named partly for Hurricane Matthew.

“In the meantime, my boys decided that they thought we should get another puppy.  I agreed that it was probably the right decision because I am still mourning the loss of Baxter. Storm, our new pup (pictured, left), arrived one week before a major hurricane (Matthew) hit us.”

Julia now continues to swim a mile, or slightly more, every day after she drops her boys at school in the morning. But she has reduced her walking to eight miles per day, on her cross-trainer, until Storm is ready to hit the road alongside her.

And the VERY latest?

I’ll let Julia tell you in her own words: “Having had my treatment six months ago, off I went to Fort Lauderdale for my MRI to see whether HSCT had worked for me. I was positive, with all my improvements, that it had, but after I had been caught out once before with another treatment that was meant to ‘cure’ me, I needed to see it in black and white before I would believe anything.

“I traveled to Fort Lauderdale for a brain, thoracic and cervical MRI. It was a Jewish holiday so the radiologist couldn’t read the images until the following day. The moment I received the email I forwarded it to Dr. Fedorenko, who confirmed that my disease had been halted. I am so thankful to him, and the entire team in Russia, for giving me my life back again,” she said.

Let me repeat her words, “my disease had been halted.” And, I add:

It is my personal opinion that HSCT, which necessarily includes chemotherapy, is a positive, working treatment for MS. It is used to treat relapsing and progressive types. It doesn’t need more trials; regulatory bodies should get their acts together and approve it now. Need I say more?

 

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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11 comments

  1. Samantha says:

    HSCT success stories are great, but what about the ones that fail.

    HSCT has a 70-80% chance of halting MS, lower in PPMS patients.
    My husband failed. We travelled to Russia in Sept/Oct 2014 – two years down the track he has progressed – even after top up chemo.

    Not all cases are successful – someone needs to cover that story.

  2. As the author of the popular MS blog Wheelchair Kamikaze, I’ve researched and written about HSCT quite extensively. I am a huge proponent of the procedure for the majority of MS patients, but must disagree with your assertion that trials are somehow no longer necessary.

    Anecdotal evidence is just that, the accounts of individuals without any measure given to the scientific method. Based on anecdotal evidence only, MS “cures” ranging from bee stings to CCSVI to high doses of antihistamines have, in the past, proven to be nothing but false hopes. Now, HSCT certainly is far more legitimate than any of the aforementioned therapies, but to suggest that the book is closed on the efficacy and best practices regarding HSCT is simply untrue.

    This is especially so when it comes to the treatment of progressive MS patients who do not show any signs of active inflammation in their disease, as evidenced in the form of enhancing lesions as seen on an MRI. Most of the legitimate centers offering HSCT will not treat such patients, and the practitioners most experienced in using HSCT to treat MS (Dr. Burt of Northwestern, for instance) emphatically insist that “no inflammation, no response”. In fact, that is the title of a paper published by Dr. Burt.

    While I am convinced that HSCT will, in the future, come to represent a paradigm shift in the treatment of the majority of MS cases, making blanket statements about its efficacy provides false hope to those with the most desperate forms of the disease.

    I am well aware of the anecdotal accounts of patients treated relatively recently for progressive disease with HSCT, but in reality there had simply been not enough time elapsed since their treatment (most within the last three years) to properly assess the success or failure of the therapy. Certainly, published trial data does not support the use of HSCT to treat patients who don’t exhibit enhancing lesions, save for a single paper published by Dr. Fedorov that contains many troubling contradictions within its paragraphs.

    Given that progressive disease does not appear to be driven by activity in the peripheral immune system, on a theoretical level it’s hard to fathom how HSCT might positively affect these cases. For those with active inflammatory disease, though, HSCT is certainly a game changer that deserves expedited examination by the MS research community. There is no time to waste…

    • Karen says:

      Thanks Marc
      So true
      I was rejected by Dr. Burt back in 2003 he was the first to verbalize that I was primary progressive
      A follower of Kamikazie and fellow member of ICONQUER MS

    • Dr. Bram Platel says:

      Excellent reply. I agree with all of your statements. Besides, I believe that for fast progressing, inflammatory and aggressive MS, the approval of HSCT needs to be sped up in all countries. Even if the treatment methodology is suboptimal, and not enough evidence has been gathered to support treatment for other patient groups, I believe there is enough proof of health economic benefits to having insurance companies approve this treatment for this subgroup as soon as possible.

    • Scott says:

      Dear Kamikaze
      Please let me vent by asking, did you realize, that Rituxan and Olcrelizumab are identical? Other than one is based on human protein and one is based on a mouse protein. You can look it up. (Rituximab vs Ocrelizumab in multiple sclerosis -NeuroImmunology)
      Rituxan has the same affect on someone with primary progressive multiple sclerosis as Olcrelizumab. This next article is what my Dr. meant when she said the National Institute of health was controlled by pharmaceuticals. (Progressive MS Clinical Trial of Rituximab Stopped After Drug Fails to Show Effectiveness – Multiple Sclerosis News Today.) What’s funny is this is written after it has shown effectiveness, as if nobody would notice. Go figure?. You could actually say the biggest difference between Rituxan and Olcrelizumab is, Rituxan has been FDA approved for 18 years.
      Notice there are only 29 people in the final trial. In most there are two to five hundred.
      One thing that’s not talked about very much, is Rituxan may have less side effects than Olcrelizumab. Now wouldn’t that be sad? Unfortunately for any concerned, I fall in the category of one of the last bastions of chronically progressive diseases left, where there may be as many as 50 to a 100 thousand in the United States and Canada that could live for decades, all be it a hideous existence, worth billions once a FDA drug is approved. Unfortunately still this earned me no urgent treatment. We all have to wait in line with the rest of the progressives until Olcrelizumab. Why is this? Why aren’t all primary progressive multiple sclerosis patients prescribed Rituxan until Olcrelizumab is FDA approved? Im shure there is a very logical answer for this very illogical conundrum. “$” I could never do their job. Guilt would haunt me constantly. Did it ever occur to you, or what I mean to say is, does it ever occur to Big Pharma that we may know several people taking rituximab for several different diseases, even off script. And yet I cannot have it because I have Primary progressive multiple sclerosis? What does this mean? Do you realize, that it occurs to me they have known for 8 years that Rituxan would help me. (Google clinical trails Rituxan) Would not the pledge, ‘I will do no harm, have obligated them to offer it to me. And yet they didn’t, and they still don’t and they can’t. And for eight years they have been telling people with PPMS nothing works for them.
      The golden rule is there is nothing for primary progressive multiple sclerosis customers, Excuse me, “patients.” since Olcrelizumab has come on the scene. And especially something like a transplant, that might halt the disease. It may not have occurred to you, but it has painfully occurred to me, that there is no possible way to truly know if I was a good candidate for the transplant. I do know this, since Olcrelizumab has come on the scene the 20% of multiple sclerosis customers who have primary progressive multiple sclerosis are now not good candidates for AHSCT clinical trials but Relapsing remitting otherwise are. When I was at Duke I was told there was a 20% chance that AHSCT would work for me. That is not what I have read and with everything else going on I believe that number is higher. For some reason he also told me my chance of death even using my own bone marrow was 5%. That may have been the case 10 or 12 years ago, but as of today, and I have found several sources that say it is actually now below 1%. This also makes sense because there is no chance of graft verses host when using your own bone marrow in the transplant. He had to of known this. I guess he just didn’t think I did, but these numbers are easily found.
      Of course from where I stand, or now can only sadly sit, that 20% chance sounds wonderful. Sadly for everyone who has seen my progression, the possibilities of halting and or even some recover from a transplant, versus the risk of less than 1% death has them saying, “go to Mexico or Russia,” and I have to explain that is only half a transplant. Not the same thing. But at least I would be getting a Rituxan I guess. No, I think I’m down for the count. The last four years, California, Washington, Durham and Charlotte to the tune of seven neurologist, $100,000 worth of Copaxone shots, The diets, the vitamins, watching my family pour out all their love and finances not counting all the research and then to come to the realization that it has all accomplished absolutely nothing. If I would have known just a years ago, when I could still walk, what I know now, I would have definitely gone to Mexico in stead of NIH, California or Duke. You would think after the amount of money, effort and volunteering for trials, you might be shown some respect. Instead I have realized they have had something all along FDA approve that could help, “Rituxan!” Not counting the Multiple sclerosis, this has truly taken its toll and knocked the wind out of my family and me. Because of their love for me they would never slow down in their quest for answers. But so far the answers they have found have taught them more about humanity than medicine. My love for them tells me the best possible thing for me to do now is let us all rest in peace, until I Rest In Peace and take the neurologist advice when discussing the risk of transplant, “It’s not the quantity of life but the quality that counts.” Especially when within a year they can get their 80 thousand a year for Ogreivu$ (Olcrelizumab) for what they have known for eight years could have put a dent in this disease.
      So I ask again, has it occurred to you why? And if so could you explain it to me? That’s OK, I think I already know. And unfortunately it’s just this simple. The figures are staggering. Once someone is prescribed Rituximab at cost 23,000 dollars a year it will be hard to justify the estimated 80,000 a year for Olcrelizumab, that is all but identical (soon to loose its patent in 2018) Rituximab. The isolated 20% of those two and a half million worldwide customers with Mutiple Sclerosis, of which 400 thousand alone are in the United States and have money. There are an estimated 200 diagnosis a week worldwide of multiple sclerosis patients that as much as 20% will soon have only one option. The fact that most of the hard work had been done in the research and developing and recreating Rituxan into Olcrelizumab means it stands to be one of the most profitable medicines in history, unless something like AHSCT gets in its way. Get the picture? Which at this point looks all but impossible in the land of the home and the free. Genetech will then have a monopoly on the first FDA approved medicine for Primary Progressive Multiple Sclerosis for what looks like at least the next twenty years and that’s with out influencing laws. This means they will allow primary progressive in AHSCT clinical trails in about ten to twelve years. Wish I could be here to see how well it works. Looks like Roche could be a good place to invest money. Not only because of the reasons I have stated, but because the next big news will be Rituximab, excuse me, Olcrelizumab, works for all 2.5 million customers, excuse me , patients around the world with Multiple sclerosis as long as they can afford it. If not I pray maybe they will be able to get the generic form of Rituxan that with out the laws changed should be available soon. And those 20% called primary progressive will have only been denied AHSCT for less than a decade or two for relief from a indescribable relentlessly debilitating disease that comes with exhaustion to the point that those who suffer from it have a hard a time describing it in a way that others can understand. Maybe,’too tired to talk comes close.
      So I beg of you, please slap some sense into me. Please tell me I’m an irrational conspiracy theorist. Please wake me up and tell me there is not a million dollar price tag on my forehead as long as I don’t get well. That this is just a nightmare and although the Bible tells me so, humanity could never be so cruel.

      • Dr. Bram Platel says:

        Wow that was a long reply 🙂
        You are right that Ocrelizumab is a derivative of Rituximab.

        The trial for PPMS’ers and Rituximab was the OLYMPUS trial:
        “Rituximab in patients with primary progressive multiple sclerosis: results of a randomized double-blind placebo-controlled multicenter trial.”
        http://www.ncbi.nlm.nih.gov/pubmed/19847908

        In the paper the researchers write:
        “Although time to CDP between groups was not significant, overall subgroup analyses suggest selective B-cell depletion may affect disease progression in younger patients, particularly those with inflammatory lesions.”

        The conclusion was that Rituximab in the entire group of PPMSers was not leading to significantly better results than the control group. However, they identified a subgroup for which the medication seemed to show promise.

        As far as I understand the patent for Rituximab was ending and a new one was filed and accepted for Ocrelizumab. With this new medicine (that Roche can sell for a high price), a clinical trial was performed in the subgroup of young PPMSers with Gadolinium enhancing lesions (active inflammation visible on MRI). This led to the ORATORIO trial.

        I don’t know how Roche will market this drug, whether it would be only available (or insured by the health insurance) to PPMSers who are young and have active lesions, or to everybody.

  3. Joan Quilter says:

    There is not enough information about the effect of chemo on MS patients who are in a weakened state, already. My daughter had active lesions, and could have gone to Northwestern for HSCT, but she was and is so severely disabled and weak that she and the family felt that the chemo might have killed her.

    • Tim Bossie says:

      We are truly sorry for the struggles your daughter must go through because of this terrible disease. We are also glad that you, along with your family, were able to make a decision based upon your daughter’s condition. It is important – especially today with more personalized healthcare – to be not only have the right information regarding these treatments, but also work together to make better decisions.

  4. Winters Cindy says:

    I agree 100% with Scott. I recently had HSCT in Puebla, Mexico. I investigated this for six years. My docs professed to know nothing about the treatment. I had the head of the MS clinic at Yale tell me it wasn’t being done in the US. When I mentioned the clinical trial, he warned me to be cautious of who was doing it. When I said Dr. Burt at Northwestern, he seemed very surprised that I had that information. My trip to Puebla was covered in the local paper. The MS specialist in the area stated we don’t know enough about it and really don’t know what they’re giving her down there. What a huge disservice to the 500 patients at that MS clinic. I was not the ideal candidate for HSCT–61 and SP but feel it was my best option. My brain fog is gone, bladder and bowel problems are very much improved, and energy level is high. These are huge for me and have resulted in the hope that tomorrow may not be better but at least it won’t be worse. PS. I cannot say enough good things about the treatment at Clinic Ruiz. Please checkout the Facebook page, Mexico HSCT for MS.

  5. Stephen E says:

    I believe the Tisch MS RESEARCH CENTER OF NEW YORK is holding one of the most promising trials for those of us with progressive ms. I just hope that other facilities around the world are watching because if Big Pharma and the FDA find some little excuse to shut the trial down at least we can go and have this promising procedure performed without them interfering.

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