2 Years Post HSCT And MS Still Stopped

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Re: 2 Years Post HSCT And MS Still Stopped

Postby jabberwock » Fri Feb 17, 2012 7:49 am

Thanks so much to everyone for your detailed and informative responses. We are going to proceed with the steps needed to investigate this possibility further (appt with neuro and referral to Dr. Freedman) and in the meantime, I will be watching closely any new results from HSCT studies and procedures.

I will also be watching these boards closely for further updates from HUD45 in particular, as well as the lady who had the procedure done in India. I do understand the rationale behind the potential effectiveness between the myeloablative and non-myeloablative protocols, and I would prefer the myeloablative; not sure that my sister feels the same yet, and she is the one who will have to deal with the effects of the procedure on her body! In addition, Dr. Freedman uses the myeloablative protocol, and if he accepts her for treatment, it would be the least expensive and most convenient option for us.

Best wishes to all of you suffering from this wicked disease, and looking forward to good news from George on the baby front!!!

Bonnie
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Fri Feb 17, 2012 9:47 am

Bonnie, good for you and your sister for being proactive. For that alone you are ahead of the curve!

Dr. Freedman is a great doctor. He is one of the very rare neurologists in the whole world that support and conducts HSCT for MS patients. And yes, any Canadians treated by him will be covered (cost) under the Canadian health care system. What kind of good deal is that?!

If you can receive Dr. Freedman's (yes, its non-BEAM myeloablative protocol), that would be wonderful. But without actually knowing his detailed inclusion criteria myself, I suspect that he might have some restriction for treating a PPMS case (as most researchers around the world that conduct clinical trials usually have the same restriction even though there can be benefit for progressive cases). In the end if he agrees to do it I hope you will let us know.

I like that Dr. Freedman correctly states at the end of this video "Nobody's had this kind of success before [as demonstrated by HSCT]. This is the only [treatment] that I know of that reports zero inflammatory activity in 100% of patients going on 8+ years. There's nothing [else] like it."

http://www.youtube.com/watch?v=NhKci3UzSGE

And if you cannot recieve treatment in Canada, there are still alternative treatment locations (although unfortunately it will require a sizable cash payment):

http://themscure.blogspot.com/2011/06/g ... -have.html

I'll contunue to update regarding the PPMS woman that was treated in India (with BEAM myeloablative HSCT).

And thanks to everyone for the baby best wishes! In some ways having a baby if far tougher than going through HSCT. But admittedly both are exciting.

- George
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Re: 2 Years Post HSCT And MS Still Stopped

Postby FLJhawk » Fri Feb 17, 2012 6:30 pm

This is all interesting.

I am recently diagnosed at age 56 and have relatively "mild" symptoms still and I want to do what I can to keep them mild! I am considering the non-myeloablative treatment with Dr. Slavin, along with CCSVI. My thoughts are to do CCSVI next month to ensure my veins are ok (but no stents or large diameter balloons - I want to keep things very conservative and not do any damage) and then do the stem call thing. I am hesitant to do the chemo treamtent as it is so expensive and I don't think I am advanced enough to get the treatment. Indeed, I contacted the folks in Germany and they said I wasn't bad enough to treat, so I will have to trust that judgment for now. With the hope the non-myeloablative will stop my progression, temporarily at least, I will consider the myeloablative treatment (chemo) at a later date when it becomes more mainstream.

I hope this plan seems reasonable.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Fri Feb 17, 2012 7:46 pm

FLJhawk wrote:This is all interesting.

I am recently diagnosed at age 56 and have relatively "mild" symptoms still and I want to do what I can to keep them mild! I am considering the non-myeloablative treatment with Dr. Slavin, along with CCSVI. My thoughts are to do CCSVI next month to ensure my veins are ok (but no stents or large diameter balloons - I want to keep things very conservative and not do any damage) and then do the stem call thing. I am hesitant to do the chemo treamtent as it is so expensive and I don't think I am advanced enough to get the treatment. Indeed, I contacted the folks in Germany and they said I wasn't bad enough to treat, so I will have to trust that judgment for now. With the hope the non-myeloablative will stop my progression, temporarily at least, I will consider the myeloablative treatment (chemo) at a later date when it becomes more mainstream.

I hope this plan seems reasonable.


That's the irony here, FLJ. . . . HSCT works "best" on MS'ers that have an early disease status with a low level of accumulated disability before the disease gets very bad. In all likelyhood, both protocols (including the non-myeloablative protocol) is most likely to permanently stop the underlying MS disease in your case as you have described.

And on top of this, Prof. Slavin is highly unlikely to reject you for the non-myeloablative HSCT treatment. Seems like all you need to qualify for treatment at CTCI in Israel is a positive diagnosis of clinically-definite MS. Much easier to be accepted as compared to Germany. Just so darned expensive at $94K! :-(

I also understand that Manipal hospital in India is quickly approving and accepting MS patients for the (BEAM) myeloablative treatment, same protocols as I received. Much more affordable at $40K. :-)

If you decide to go for it, more power to you! From a treatment perspective, hard to call this a bad decision for your health. Good luck!
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CVfactor » Sat Feb 18, 2012 7:37 am

I wonder way there are no trials strictly for PPMS. It seems that there are no other alternatives for this type of MS. If the research indicates that the disease is stopped in 2/3 of PPMS this seems like a viable solution. Why is it up to these doctors who they will and wont treat?
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Re: 2 Years Post HSCT And MS Still Stopped

Postby jabberwock » Sat Feb 18, 2012 11:40 am

It is strictly my opinion that doctors, for a number of reasons, are establishing trials which have the greatest probability of successful outcomes. There is, of course, a limited supply of research funding, and it seems logical to assume that more funds are allocated to research projects/trials that are more likely to bring positive outcomes and attract additional funding for continuing research. And what doctor/researcher would not want to allocate his time and energy to work that is more likely to be successful, increasing his/her chance for professional acclaim??

Unfortunately (or fortunately), PPMS affects a very small percentage of the total MS population. Therefore, not only would a much smaller group of people benefit from the research, but there is a smaller pool from which to draw for trial purposes.

I believe that there will eventually be more trials to include PPMS patients, but not before there is mainstream acceptance of HSCT as a treatment/cure for MS. It is very sad that this may come too late for those suffering from PPMS today.

I guess we should be grateful that HSCT is available, although expensive, for those pwPPMS who believe it is the answer. All we will have is anecdotal results, but it is better than nothing!!

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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sat Feb 18, 2012 12:20 pm

CVfactor wrote:I wonder way there are no trials strictly for PPMS. It seems that there are no other alternatives for this type of MS. If the research indicates that the disease is stopped in 2/3 of PPMS this seems like a viable solution. Why is it up to these doctors who they will and wont treat?


Remember that clinical trials are not specifically intended to help individual patients. Trials are intended to prove a hypothesis in the context of a patient population. The research doctors discovered early on that HSCT works so (sometime miraculously) well on relapsing patients that they restrict the treatment population to just this group. This makes the doctors running the treatment trials look like medical superstars, boosting their standing, success and fame in the medical community. So even though later stage progressive patients also can benefit from HSCT (mainly by stopping the underlying progression of the MS disease), the doctors are not going to "appear" to be as successful as compared to when they can make people get up out of wheelchairs and walk again, such as the wonderful case of Carmel Turner:

http://www.youtube.com/watch?v=KEHgwPmK ... aWd_L5nf4F

However, for myself having had MS for 15 years and been SPMS for the last four of those, I was only seeking a halting of my disease progression. It was clear from the ealy study work that HSCT was the only "scientifically" proven treatment that had a real chance to accomplish this. So it didn't take me long to go from researching the HSCT treatment data to actually receiving treatment by paying for it myself. In the end following HSCT I was able to experience a 100% complete enduring halting of my underlying disease. For that alone, and for myself, I consider this as a "cure" for me. I now have my future back that I can continue on with confidence that I won't be in need of a wheelchair. And on top of this, HSCT has also provided to me the "bonus" of a 50% improvement of my pre-existing (pre-HSCT) accumulated MS symptomatic disability. For that I call it miraculous. Unfortunately this is not good enough for the researchers to acheive fame and glory so even today a person such as myself cannot qualify for any of the HSCT treatment trials, even though clearly I have benefitted tremendously. Sounds crazy, I know.

The lesson here is that doctors run the studies for their own personal reasons, whatever those may be. But luckily there are still institutions and doctors that will treat MS patients that can benefit from HSCT that doesn't involve doctor's personalities as the major motivating factor. In today's environment that has been primarily supplanted by a motive for profit. I'm personally OK with this since it removes the bias and predjudice of patient treatment selection.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CVfactor » Sat Feb 18, 2012 1:40 pm

I guess from my point of view this type of research should be investigated and funded by organizations in which the private sector would not be interested because of a limited return on investment.

Definetely The National MS Society and the NIH would fall into this category, so I don't understand what their purpose is anymore. When I used to give to TNMSS before I became sick I truely believed they were trying to help people with MS, but it seems they have really lost their priorites. Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sat Feb 18, 2012 5:22 pm

CVfactor wrote:I guess from my point of view this type of research should be investigated and funded by organizations in which the private sector would not be interested because of a limited return on investment.

Definetely The National MS Society and the NIH would fall into this category, so I don't understand what their purpose is anymore. When I used to give to TNMSS before I became sick I truely believed they were trying to help people with MS, but it seems they have really lost their priorites. Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.


CV, as usual you and I are of the same mindset. I can only imagine non-profit organizations are motivated completely by self-preservation and self-benefit. Accordingly, they will pander to the strongest of the momentum movements. Including the complete absurdness and irrationality of CCSVI that offers no hope of a cure. The only scientifically-shown curative treatment of HSCT be damned. C'est la vie. Eventually the truth will set us free (from MS).
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Re: 2 Years Post HSCT And MS Still Stopped

Postby FLJhawk » Sat Feb 18, 2012 10:19 pm

Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.


You cannot deny that CCSVI has helped, even if temporarily, a lot of people. Also, there is a huge demand for it to be investigated, and these societies have to listen to their membership. CCSVI is most likely not a cure for most people, but the fact people get better (even if for a few months or a year) would seem to be providing a huge clue regarding a true cure.

I am not even sure if stem cells is a cure. It does appear to work for a while, but if our immune system turned against us once, what is to prevent it from happening again down the road?

The one thing with CCSVI is that it is somewhat affordable and it is available. HSCT is quite expensive and very few people can afford it. If researchers can figure out ways to use CCSVI to even provide an extra year of quality life, then it will be worth it. We currently spend, what, a quarter of a million on DMDs for a person over not even a 10 year period and, according to one study, extend the quality of life by a few months.

I am thinking that the free outflow of blood from the brain and with an intact blood-brain barrier from CCSVI treatment, followed by some sort of stem cell treatment, might the current best way to cure MS.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sat Feb 18, 2012 10:57 pm

FLJhawk wrote:
Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.


You cannot deny that CCSVI has helped, even if temporarily, a lot of people. Also, there is a huge demand for it to be investigated, and these societies have to listen to their membership. CCSVI is most likely not a cure for most people, but the fact people get better (even if for a few months or a year) would seem to be providing a huge clue regarding a true cure.


I'm sincerely not slamming your comment, or your opinion. I do agree the placebo effect is real and that some people have experienced a temporary improvement because of it. But that doesn't substantiate any scientific indicaton of CCSVI to be a causative factor for MS, especially in light of the overwhelming scientific evidence for the role of autoreactivity in the pathology of MS. Probably a good vitamin regimen will accomplish a similar placebo improvement without the negative risk/reward benefit ratio of surgical intervention (people have died from CCSVI treatments as opposed to no deaths so far with the evolved HSCT protocols). I think the whole issue of CCSVI treatments sheds more light on human nature & behavior as opposed to anything associated with MS causation.

Perhaps it would be better for us to take this comparative discussion to the CCSVI forum.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby FLJhawk » Sun Feb 19, 2012 5:31 pm

No offense taken at all, George.

But my main issue was the question of can one catch MS again after being cured by stem cell treatment??? Following treatment, is there anything we can do to minimize the odds of catching MS again?
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Re: 2 Years Post HSCT And MS Still Stopped

Postby shucks » Sun Feb 19, 2012 5:51 pm

I think that is a valid concern, I probably got this thing in my mid 20s, though I was diagnosed last year at 30. IMO, even if it stalls it for 10 or another 20 yrs and it comes back, it is the only treatment that stops progression known to medical science at this time. In 8yrs of study, folks have been halted, and that's awesome compared to anything else going. I am praying to get final approval every day to do this thing.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CVfactor » Sun Feb 19, 2012 7:51 pm

For the CCSVI proponents I would ask that you take your opinions back to the CCSVI section.

As far a re-acquiring MS after HSCT (BEAM) your maximum odds would be the same as that if you were an identical twin with one twin having MS which is 30%.

However this value would only hold true if you re-experienced every immune system challenge in the same sequence as you initially did when you first acqured MS. The likelihood of this happening again would be very small.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sun Feb 19, 2012 8:10 pm

CVfactor wrote:For the CCSVI proponents I would ask that you take your opinions back to the CCSVI section.

As far a re-acquiring MS after HSCT (BEAM) your maximum odds would be the same as that if you were an identical twin with one twin having MS which is 30%.

However this value would only hold true if you re-experienced every immune system challenge in the same sequence as you initially did when you first acqured MS. The likelihood of this happening again would be very small.


True. Agreed that the likelyhood of the same environmental challenge as a causative factor would be quite low during adulthood. I would think the identical twin odds apply only if exposed to the same environmental factors at the same time. Usually the environmental exposure factors we face later in life are quite different as compared to the environmental expose during teenage years when thought to trigger MS. Probably why not a single MS'er having their MS disease activity stopped via HSCT has yet to relapse. This applies equally to the phase II trials at 9 years, and also the phase I trials at 12 years post-transplantation. We'll have to see if this remains true at 20 or 30 years. I'm betting it will for the simple reason that our environmental exposure as adults differ substantially as compared to when we are much younger and it is probably rather difficult to repeat the same sequence that triggers MS.
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