This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

This treatment is basically a bone marrow transplant. One of the guys I do Tysabri with, here in Melbourne, went and saw Dr Andrews and his team a few weeks ago. At the moment he is "98%" approved to go ahead with it, just waiting on a current MRI.

http://www.heraldsun.com.au/ipad/mum-iv ... 6004652530

This link is to an article in the Herald Sun, which was where Carmel's case was first reported. I think it contains a little bit more info than the other article you guys had found.

Thanks for the added info, Loader.

I have been communicating with Both Carmel Turner and her husband Scott in Syndney. Both very terrific people. Both Carmel and I had basically the same (BEAM protocol) stem cell transplantation procedure. Not only have we both seen our MS disease activity & progression completely stopped, but also have seen substantial symptomatic improvement on top of this.

For me I am most amazed that she was an EDSS 6 and nearly EDSS 7. She was just on the verge of being confined to a wheelchair and now she is up and walking around without any ambulation aids. Very nice.

Here is her website where she also posts lots of videos of her treatment and recovery. I'm sure they'd love to hear from you directly. . . .

http://www.msstemcell.com/

I also list some other Australia-related info on my references page. . . .

http://themscure.blogspot.com/2010/06/s ... rence.html

I was recently in chicago and went thru the screening with Dr Burt. My mri showed very little brain lesions rather all spine activity. Unfortnately nothing showed "enhancement." I say unfortunately because that was enough to be refused for the study. I believe all our lesions enhance at one time or the other and it just isnt always visible on MRI. So after an $8000 mri and about $2000 in appointment and hotel bills I am out just like that.

Does anyone knof if these patients were all RRMS? This is a requirment of Dr Burts proocol.

I'm sorry to hear that you could not get into Dr. Burt's MIST program. And also unfortunate that you spent so much money to finally be rejected. Almost seems unfair.

Although necessary to prove (and get approved) medical treatments, clinical trials are not intended to help "individuals," even though stem cell transplantation will help the vast majority of people with MS, regardless if the disease is relapsing OR progressive (I was SPMS when cured). Clinical trials are intended to prove hypotheses in the context of a population. Dr. Burt's MIST program's inclusion/exclusion criteria is so narrow that it is no exageration to say that 99%+ of people applying to the trial will be rejected. And on top of this because the phase III trial is randomized, even if accepted there is a 50% chance that any individual will not receive the stem cell transplant and will instead be assigned to the control arm and just keep receiving standard immunomodulator drugs that offer no hope of a cure.

I was rejected from both the HALT-MS trial (Seattle) and Dr. Burt's MIST trial (Chicago). But in the end for me it actually turned out to be a blessing because I could still have stem cell transplantation performed without all the unecessary complexity associated with a clinical trial. So the hospital that treated me (Heidelberg) wasn't running a trial and I could receive curative therapy without regard to anything except my own health. And on top of this the pricetag was substantially lower (approximately half the cost) as compared to treatment in the US.

If you are seriously interested in having HSCT to cure your MS, you can likely have it done the same place I did it (I have absolutely NO financial interest in this!). The info is all in my blog. As a side note. . . I've been communicating with a couple other people that will be going for the treatment next month (May). One of the people is SPMS and the other recently diagnosed PPMS. I think they are both likely to see tremendous benefit in stopping their disease activity.

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Absolutely no offense taken. And a very valid and fair question. . . .

Since there is no universal definition of what "cure" means (not even amoung doctors), it is up to each individual to decide for themselves what a cure is. As for me the definition was the same as my original objective. . . . "To stop or halt the underlying disease activity and completely stop the progression of my dease." This happens in virtually 100% of HSCT-treated RRMS patients, about 80% of SPMS patients (me) and about 65% of advanced (non ambulatory) PPMS patients.

But I also understand that some people will not accept this definition of a cure. Many people will want to see significant "improvement" or "reversal" of their symptomatic status. This usally happens in greater than >80% of RRMS patients, greater than approximately >65% of SPMS patients (me) but is unfortunately unlikely to occur to a substantial degree in advanced (non-ambulatory) PPMS patients. So I was EDSS 3.5 at the time of my HSCT. And today at 16 months post-transplant I am at (nearly) 2.0 EDSS. So luckily for me I have also experienced substantial improvement of my pre-existing symptoms (but not 100% reversal, which is unlikely to occur).

Scientists Reverse Early MS With Patients' Own Stem Cells
http://www.medicalnewstoday.com/articles/137238.php

"After an average follow-up of three years after receiving their transplants (which took place between January 2003 and February 2005), 17 patients (81 per cent) improved by at least one point on a [EDSS] disability scale. And for all [100%] patients, the disease had stopped progressing."

Here is a graph I put together (from the various phase I and phase II clinical trial data) indicating the relative probability of these two (stopping and/or reversing) curative phenomenon based on MS disease status at time of HSCT:

http://2.bp.blogspot.com/-PvejGH-NIG4/T ... al%2B2.jpg

And as much of a quantitative explanation as I could to describe the improvement status at one year post-transplant (and today at 16 months I'm a little better than as described here):

http://themscure.blogspot.com/2010/12/1 ... tatus.html

So it is up to each individual to decide if this constitues a cure. But for me it is because now my disease progression is 100% stopped with absolutely no new or added deficit and no new (MRI) lesion activity, all (every single one of) my symptoms have improved and a substantial degree of certaintly for my future health has been restored (makes planning for the future more possible). Basically, before HSCT I was headed toward a wheelchair and today I am definitely moving further away from ever needing a wheelchair.

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Lyon thanks for sharing the link to the other thread. This is definitely an interesting subject that I don't see talked about very often. You definitely could envisage the issue and also were light years ahead of me in looking at the subject of the definition of a "cure" (I don't mean that sarcastically since it is very astute of you to earlier bring up the salient points of the subject!) I didn't actually think that deep into what constituted a "cure" for me until I dove head-first into the whole issue of how to receive HSCT for myself.

So far it appears from the established clinical data that myeloablative HSCT (same protocol I received) has lasting curative efficacy. Especially considering the surrogate indicator that people lose immune memory aquired over a lifetime of exposure to infectious agents, environmental antigens and vaccines; requiring re-vaccination for all childhood diseases. So far all HSCT-treated patients (from phase II trials, onward) stop taking all immunomodulator drugs coincident with the stopping of the underlying MS progression. (I cannot say in more strongly-worded terms how very happy I am to no longer inject interferon!)

Bottom line. . . . I agree with you and I'm also hoping, not only for myself but for all others, that HSCT proves to be a lifetime cure. In the end, time will tell. So far, so good.

Bestwishes for your good health!

please tell me the cost of the treatment in Germany!

It was mentioned in this thread. It cost around 70 000 USD, I dont know what was USD/EUR relation at that time.

55,700 EUR or 81,200 USD to be precise

Good to see (read) you in the forum, Asher.

Just my recollection. . . doesn't that amount include a 10% excess buffer? If so then the exact price will be calculated at the end and and if its less than 55,700 Euros then they will refund to you. But if there is additional treatment cost required, then they will bill you. You have more recent info than I do so you would know better than I. (Of course total US$ will depend upon the exchange rate which unfortunately is rather crappy (for Americans) right now.)

As for my own treatment in Dec 2008 and Jan 2009 my total came out to just a little under 56,000 Euros. Probably because I insisted to receive Palifermin prior to my BEAM chemo and G-CSF Neulasta as part of my post-autograft infusion engraftment recovery. Both rather expensive drugs. Although not absolutely required, for your own comfort and prompt recovery I hope you will insist on the same. I suspect you won't be sorry for spending a little more for these.

Best regards,

George

right about now I dont even have 55 US dollar's because of this f'd up disease (used to be a Nurse) now physically can't do it anymore...unfortunately this is alot of our reality....money talk's...so I don't walk..lol...gonna laugh or I will just cry...33 yr's old and have seen 80 year old's walk and function better than I can...crazy isn't it??? gotta just wait on a clinical trial to come my way I suppose...did FDA trial for "rebooting immune system"...did NADA for me...helped 2 other's in my group though...read sig. below...did that too.......errrrrrrrrhhhhhh

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

So sorry to hear that you have had failed treatments, Leetz. MS is so damned insidious and unfair.

BTW. . . you mention that you participated in an FDA trial for "rebooting immune system." Any chance you can share what that treatment protocol was?

But no matter what. . . my sincere best wishes for your health.

Yes George, it includes 10% but costs always tend to exceed budget ant I do not expect a refund.