This Is MS Multiple Sclerosis Community: Knowledge & Support

I am looking into clinical trials now, and they seem to be divided into the ones that have Autologous mesenchymal stem cell transplantation and ones that just say HSCT in the discription. Is there a difference? if so, does anyone know the difference in the types of therapies??

Thanks

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

It's necessary to not mix-and match terms indescriminantly (of which I see done all the time).

"Autologous" just means self, regardless of the stem cell type. So the stem cells are collected from an individual that will later be returned to the same person. (The corresponding treatment that uses donor stem cells is called "allogeneic." Stem cells from an idential match twin is called "synergenic.")

"Transplantation" necessarily means that chemotherapy is used to ablate the existing stem cells prior to the re-infusion of stems cell back into the body. (When someone gets a heart transplant they remove the old one first and do not put two hearts into one person. Same nomenclature use applies to stem cell transplantation.) If chemotherapy is not used then it cannot legitimately (or medically) be called a transplant. There are many scam stem cell treatment businesses around the world that often use the word "transplantation" as a marketing term when that is not a medically-acepted description since they are just re-infusing stem cells into the body. It's important not to be fooled here.

Only hematopoietic stem cells (that originate in the bone marrow) are capable of re-constituting the immune cells of the body (which all come from hematopoietic stem cells). Autologous stem cells are the preferred source since they are the safest for a prompt and complete recovery with the lowest risk. Therefore , the actual complete term is Autologous Hematopoietic Stem Cell Transplant (AHSCT). Only a Hematopoietic Stem Cell Transplantation (HSCT) is capable of stopping the damaging autoreactivity of multiple sclerosis and bring a halt to the progression of MS. Other stem cell types cannot do this.

Mesenchymal stem cells (MSC) differentiate to form connective tissues of the body and have no capability to re-constitue (and reset) the immune system since they do not produce blood or immune cells. However, there is some in-vitro research showing that MSC's do have some ability to secrete some forms of low-level cytokines that "may" be beneficial for repairing some existing nerve tissue damage. However, since there has not yet been any reprproducible curative benefit demonstrated in-vivo, this therapy has yet to show any scientific evidence that it produces clinical benefit. But maybe someday. I personally am really hoping so and fully support ongoing research activity. We're just not quite there yet.

BTW. . . there's no such medically accepted term for mesenchymal stem cell transplantation because "transplantation" requires ablation. If all the MSC's of the human body with their disperate endogenous locations were ablated, that would also certainly result in death of the patient. So for MSC's, only the term "infusion" is appropriate.

HSCT for treatment of MS is now in final stage FDA phase III trials. MSC infusion therapy has just started the first phase I trial at Cleveland clinic. (Keep in mind that only phase II and phase III trials are for the purpose of demonstrating/proving clinical benefit. Phase I trials are intended to establish "safety." So we're still a long way off for demonstrating repeatable results for MSC's. And if you can't repeat it, its not a cure. So far only HSCT has shown this.)

That was kind of what I was thinking George. Google fu was leading me to think direction already. Thanks again for all of the info. The new neuro I just saw says that I should pick a CRAB medicine and wait and see on hsct, due to the risks of later cancer, chemo side effects, and the fact that it is "not proven" yet. It is so much money that I am looking everywhere to see what options there are. I am looking really heavily into clinical trials, but they all seem to be closed in relation to hsct. There are a couple through the cleveland clinic that use these other types of stem cells, but I wasn't 100% sure of the difference, so I asked here.

Thanks

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

..

Not to answer for george, but the hsct protocol is to take some of your cells, clean them up, give you the chemo, and when the immune system is ablated, give them back to you to reset the immune system. This reboot, based on the new cells, is supposed to give you a fresh new immune system without whatever leads the t and b cells to attack your nerves.

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Exactly correct. No need for donor stem cells or embryoinic stem cells since one's own stem cells are used.

Hi Shucks,

Dr. Burt's HSCT phase III trial is open and they are currently recruiting patients. . . .

http://clinicaltrials.gov/ct2/show/NCT0 ... sis&rank=2

However I would like to add some additional comments regarding this. . .

1) Acceptance to this trial is exceedingly (extremely!) difficult because the inclusion/exclusion criteria is so absurdly narrow and will eliminate 99%+ of the people that would benefit from this treatment.

2) Even if someone were accepted to this (randomized) trial there is a 50% chance that the candidate would be assigned to the control arm of the study and not actually be able to have stem cell transplantation. In this case the patient would only have access to CRAB drugs that offer no hope of a cure. No need to be in a trial just for that. Your neurologist will be happy to prescribe them. That's pratically the only thing MS neurologists do anyway. Prescribe drugs. (You can probably detect my disaffected attitude about neurologists in general.)

3) For those fortunate few that are accepted to the study AND can receive actual HSCT treatment, I am unaware of any medical insurance companies in the US that will pay for the treatment. Therefore the patient ends up having to pay out of their own pocket, the cost being around $140,000. Another reason why I was very happy to get HSCT in Germany. It was less than half the cost. Plus I wasn't burdened with any additional follow-up study work that has nothing to do with getting healthier.

Just a couple other comments (sorry to bore you). . . .

- Your doctor is correct that there are some latent malignancies resulting from the treatment. However, because the treatment does not use ionizing radiation as part of the protocol, the danger & risk is substantially reduced with a mortality less than 1%. I wrote about this specific subject of latent cancers about half way down this page. . . .

http://themscure.blogspot.com/2010/02/l ... s-day.html

- Chemo side effects. . . . indeed HSCT is a serious procedure with uncomfortable and unpleasant side effects, not to be taken lightly. I felt rather ill for a week due to the chemo. But once past the procedure the patient recovers and it's all over and finished with, not having to repeat it again. For me, a more-than-equitable trade off for stopping (and reversing) my MS. Just anecdotal but so far all the other MS'ers I have communicated with that also had HSCT all say the same thing. No regrets from having the procedure.

- "Not proven?" Well, that depends upon who you ask and how to define what "proven" means. Certainly it's not yet FDA approved for MS. That will inevitably happen sometime around 2020 following completion of the phase III clinical trials currently in-progress (there are currently two in the US). HSCT itself is not an experimental procedure at all, having been completed on millions of people (for cancer) since the 1960's. So it's a very well understood procedure. And so far there have been nearly 600 people worldwide with MS that have had HSCT performed. So based on the population of phase II-and-later-treated-patients, it is a resounding successs with 100% of RRMS patients stopping their disease and 80% experiencing 'substantial' improvement of their existing symptoms. So its fine that the neurologist considers it experimental, but for me it is not since it cured me of the progression of MS. But maybe he just wants to maintain a steady paycheck by keeping you on CRAB drugs for the rest of your life? For me I'm glad to no longer take any drugs or medication for MS since my own HSCT procedure. My neurologist and the drug companies got the short end of the stick on that deal. He's a very nice fellow but I can't say that I'm unhappy with the situation.

Whatever you decide, more power (and good health) to you!

Best regards,

George

I applied today for Dr. Burt's study. The one requirement that I don't fit into is having used the CRAB medications for 6 months prior. I don't know if that's a deal breaker or not. With the aggressiveness I've seen in the last few months, I dont know how long I can wait to see how I progress right now. George, do any of the other folks you communicate with who have had it post in places like this? I would really like to hear from other folks who have this done if I am really going to start fund raising full on. I can't in good conscience ask friends and family to help in something unless I'm sure it works, and I'm only at about 80% now on it. I would like to discuss it further with folks who have had it done if at all possible.

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

I suggest perhaps communicating with Dave Bexfield. He's a really fantastic person, smart dude and all around nice guy. He and I had basically the same HSCT procedure around the same time except we had it done at two different facilities (he was part of the HALT-MS phase II clinical trial here in the US). Dave runs his own MS website and even has a forum page you can register with. I'm sure you can find on his website how to contact him. Let me know if you have trouble doing so. Here's his website. . .

ActiveMSers: Staying active with multiple sclerosis

http://www.activemsers.org/

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Hi Shucks,

Here are a few more patients that underwent HSCT that you might able to contact through their websites.

My End to MS – Chris & Erin

http://my-end-to-ms.blogspot.com/

Lisa’s Hope

http://www.lisashope.com/index.html

Barry Goudy (long history with HSCT treated in 2005)

Barry is a friend of Lisa so you may be able to contact him through Lisa

http://www.youtube.com/watch?v=Y8SAgUB5 ... r_embedded

And here is the story of Carmel Turner in Australia.

http://www.adelaidenow.com.au/news/nati ... 6004742545

Carmel and her really great husband Scott maintain their own website. Carmel and I had nearly identical treatments. I consider Carmel and Scott some of the most patient-oriented knowledgeable people anywhere regarding HSCT and I’m sure they would be happy to discuss the subjects with you. You can contact them through their website here. (Carmel’s story is amazing since HSCT has enabled her to get up out of a wheelchair and walk). . . .

http://www.msstemcell.com/

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I had several discussions today with the folks in charge of the study. The bottom line is that they told me to come get checked out, and then told me that they wouldn't take me for 6months. I must be on an interferon for at least 6 months and get worse prior to qualifying. As I was wrongly diagnosed for the last almost 7 years, I haven't been on anything. It looks like interferons are the only things that count, so I need t pick one and get over my fear of needles pretty quickly I guess. I am leaning towards avonex, as they all seem to have the same efficacy in the numbers, but this one only needs a once weekly injection. At least it would give me six months to get into some fundraising. Who knows, maybe it will work fine and I'll never get any worse. I am still really looking at this procedure, and hope it will get fast tracked between then and now. They did tell me that some of the insurance companies involved do cover a portion, but not all, of the costs. They wouldn't tell me if BCBS (mine) was one of them.

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Hello Shucks,

Is the requirement to be on CRABS for 6 months only to get into the study? What if you just wanted to pay for the treatment without being part of the study, would you still have to go on CRABS for 6 months?

I am praying for your best results. Good luck and thanks for sharing.

Regards,
Looking88

I didnt ask that particular question. The nurses I have talked to said that I was a good candidate, but needed to be on CRABS for 6 months before they would accept me. I still have no idea how to make 150k to pay for it, plus enough cash to live off of while I'm recuperating. I am hoping I can do some major fundraising. I'm getting going on it this week. I would like to figure out something about saving some baby having juice somewhere in case I ever decide to have kids after. I have tons of court over the summer and need to try some people, which are all time consuming. Right now I'm trying to figure out how to juggle it all.

JSH

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?