This Is MS Multiple Sclerosis Knowledge & Support Community

http://www.neurology.org/content/76/12/1066.abstract

What do you guys think?

Thanks Shucks. At first glance the bottom line of this report are either hopeful or unsettling, depending on which 1/2 of the glass you are looking at.

Never the less, there are a few things I don't quite understand:

1.

Clinical and MRI outcomes of 35 patients with aggressive MS treated with HSCT are reported...

Conclusion: HSCT is not a therapy for the general population of patients with MS but should be reserved for aggressive cases, still in the inflammatory phase of the disease...

This sounds to me like a circular argument. "Only patients with aggressive MS were treated" and so they conclude it's only viable for patients with aggressive MS?

2. This does not sound consistent with other numbers floating around. I wonder whether George could shed some light on this?

Asher

interesting. my neuro said the exact opposite to me. she mentioned how it was similar to many of the drugs when they first came out. how they would treat and experiment with patients with higher disabilities and not the RRMS just newly diagnosed. she feels the HSCT is most likely more beneficial the earlier the treatment. although, i'm not sure she's completely sold on the idea.

i am meeting with her next week and am going to discuss my HSCT potential treatment. it will be interesting to see what she says...although it will not change my mind either way.

Shaigat, I believe they talk about the treatment being best suited for aggressive/malignant RRMS, not SPMS and PPMS.

I see that the doctor in the article is from Greece, so they might be doing HSCT there. Anyone else with info on that? Just the death of 2 out of 35 patients from complications is troubling, in Germany think it was less than 5% if I'm not wrong. There is an e-mail of Dr. Vasilios K. Kimiskidis in the article, might wright him to see about options for treatment there. I'm thinking they say that it is for aggressive cases for two reasons: first the transplantation is dangerous and second and most of all it kills the revenue of the drug companies. Even at 60 000 euros this is probably two years of regular medication and that is not bringing that much money.

Pesho, Germany is 0,84%. The relative high % in this Greek study is due to the fact that some of these patients were treated up to 15 years ago. In the early days HSTC fatality rate was significantly higher than it is today.

Asher, i didn't even get a chance to read the article yet. i was just going by the quotes listed, 'aggressive cases". why this cannot be open to whoever wants it is beyond me. i know the risks of HSCT, but i have no idea with my MS nor does anyone else. it is truly frustrating and just downright absurd to me. its my body! i will make this happen, just not as easily and as quickly as i'd like.

i hope all is well with you on your recovery.

Asher wrote:Pesho, Germany is 0,84%. The relative high % in this Greek study is due to the fact that some of these patients were treated up to 15 years ago. In the early days HSTC fatality rate was significantly higher than it is today.

I've just wrote to the doctor in the article and I hope for a fast response. It is right over the border for me and if the price is something similar to India I could do it. I'm just wondering what is the recovery time from the transplant? I'm wondering because if I have to quit my job and now is not the best time for that. But I think health is far more important, so if it is possible I'm going for it.

Pesho- If u are on FB I would check out the groups there. HSCT for MS is the name. Most informative site currently from multiple points of view.

I don't usually post here, but I figured I ought to chime in before lots of misinformation is bandied about. I received an HSCT in the spring of 2010 and I purchased this study when it was released over a year ago and posted my thoughts on the ActiveMSers forum. The abstract does not tell the complete story.

http://activemsers.wssnoc.net/showthread.php?t=460

In fact, the abstracts of most (if not all) current stem cell (HSCT in particular) studies are posted in the "Dave's SCT Journey" area of our forum along with links to a number of different blogs, websites, and videos dedicated to the treatment. And, of course, my personal experience. I hope this helps.

http://activemsers.wssnoc.net/forumdisplay.php?f=6

Dave Bexfield, www.ActiveMSers.org

My first comment. . . . I'm always glad to see Dave Bexfield add his comments to this forum. Dave is the epitome of rational and well-constructed thought. Whenever he has something to say, I listen. And on top of that, he does indeed have many excellent and relevant references listed on his Activemsers website. http://www.ActiveMSers.org

And onto Asher's comments. . . he is onto an important issue, mainly his point that (I paraphrase) sometimes you can't see the forest because the trees are in the way.

This early Greek HSCT study used a protocol that is no longer used for treatment of MS. Mainly that they incorporated Total Body Irradiation (TBI) as part of the treatment protocol. It has since been learned that TBI offers no addition curative efficacy, but instead adds substantial mortality and morbidity risk that was responsible for the deaths seen in this early study. Since the HSCT protocols have evolved to "chemical-only" (no TBI) since circa 2002, there has not been a single MS patient death anywhere in the world due to HSCT treatment. Any claim that HSCT is wildly dangerous is ignorant and does not reflect the facts. Which is why I also favor the use of HSCT for a broader range of patients, including progressive cases (such as my own SPMS that demonstrated substantial clinical benefit).

Additionally, the authors of this paper do make the sweeping statement that HSCT should be restricted to rapidly-advancing relapsing forms of MS refractory to other (drug) treatments. It is really a shame to hear this statement being repeated. Although true that HSCT works "best" on such early RRMS cases, it has also been unequivocally shown to be effective (stopping of underlying MS disease activity & progression) for most every other type of MS patient, regardless of disease morphology at time of treatment.

Long story short. . . . the cited paper was nice data ten years ago. But frankly, because the HSCT protocols have evolved, this Greek study is mostly irrelevant.

But just to add a last note that I never see (first-hand) addressed by the medical community. . . . . something I wrote for the HSCT for MS Facebook forum. . . .

There are many reasons I have a negative view of the neurology profession when it comes to MS. Neurologists know a whole lot about nerves. But they know virtually nothing about the etiological cause of MS that has a hematological origin in the immune system.

Firstly, most neurologists are not educated, trained nor experienced in HSCT to stop the underlying MS disease process & progression. Therefore most (but not all) neurologists slam HSCT out of sheer igorance and beleif in long-persisting dogma that "there is no cure for MS." Well, there is no universal, or even a medical definition of what a cure for MS is. Therefore it is up to each person individually to decide for themselves what a cure is. As for my own personal definition, a cure is stopping the underlying MS disease activity and progression. And HSCT has done exactly this for me! (Actually better with a 50% improvement of my pre-existing EDSS.) So who made a neurologist (or anyone else) god to say that HSCT can't cure MS?

Secondly, the thing that really gets my gander is that neurologists usually focus solely on the clinical aspects of MS and totally ignore the important factor of Quality of Life (QoL). My own neurologist opposed my having HSCT because he said "MS isn't going to kill you and HSCT is so dangerous, why do you want to take this massive risk for little potential benefit?" What the hell did I just hear him say? First of all, your (neurologist ignorance) is soo very wrong about the medical and safety aspects of HSCT. My reply to him was "what's the point of living if my life sucks in a wheelchar (which is where I was heading before HSCT)?" He never even gave a though about QoL. Which is why today I am sooo glad that I ignored his opinion on this specific subject and instead went with my own research on the topic. If I hadn't, I wouldn't be cured of MS diseasse progression today.

So going back to Keelan Murphy's comments, don't let doctors make the personal value judgement for your own QoL. HSCT, or not.

By the way. . . I'm glad to say that I no longer have (or need) a neurologist.

Here is a QoL paper out of Russia that I found that reports on post-HSCT psycho-social (QoL) well-being that clearly indicates for the broader population people benefit well beyond just clinical efficacy:

http://www.stemcellms.ru/doklad11.php

I think one has to be careful about their neurologist because most of them base their treatment options on what is accepted medical practice. I don't think many will go out on a limb to reccomend something that is not mainstream.

The problem with MS is that it really is an immune system malfunction that effects a persons neurology. It would probably be more apropriate for an immunologist to recommend treatments to patients, but I guess this is something that will hopefully change in the future.

CVfactor wrote:I think one has to be careful about their neurologist because most of them base their treatment options on what is accepted medical practice. I don't think many will go out on a limb to reccomend something that is not mainstream.

The problem with MS is that it really is an immune system malfunction that effects a persons neurology. It would probably be more apropriate for an immunologist to recommend treatments to patients, but I guess this is something that will hopefully change in the future.

Completely agreed with your points CV. For me, I'm hoping that in the future MS will be "diagnosed" by a neurologist (since there are many similar neurological disorders that should be ruled out) and then get out of the way and let an immunologist or hematologist treat the MS patient and perform HSCT when appropriate.

Thanks George for your perspective. For a layman like myself the data the Greek are presenting is, to the best of my knowledge, the only longitudinal study out there. The way I understand it, in this study we are looking at results of the 'heavy handed' HSTC variant which should, if I understand this correctly, result in total ablation of the immune system. If so, I find the PFS data somewhat puzzling:

Results: Disease progression-free survival (PFS) at 15 years is 44% for patients with active CNS disease and 10% for those without (p = 0.01); median time to progression was 11 (95% confidence interval 0–22) and 2 (0–6) years.

Any thoughts/perspective on this?

According to the article at 15 years only 25% of the original patients continued to be progression free. Those statistics aren't exactly favorable when considering a treatment like this. Chemotherapy is very hard on the body and if i'm going to invest my time, money, and energy into undergoing a treatment such as this i'd like to be confident that it will completely rid me of this dreaded disease permanently.