2 Years Post HSCT And MS Still Stopped

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2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sat Dec 31, 2011 11:08 pm

Happy New Year everyone!

I can't believe it's been two years already. Strange, I can't even remember feeling ill from the treatment (even though clearly it's a yucky procedure to go through). My stem cell transplantation "birthday" was on Dec 29, 2009 and today my MS disease is still stopped and improving. I feel up to, and looking forward to having our new child (boy) expected March 10. I just uploaded my latest post-HSCT status if you're interested:

http://themscure.blogspot.com/2011/02/2 ... tatus.html

My sincere best wishes to everyone and their families for a prosperous and successful New Year.

- George
Last edited by georgegoss on Mon Jan 02, 2012 1:34 pm, edited 1 time in total.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby ApVish » Sun Jan 01, 2012 8:43 am

Happy New Year to you to George!!! Yor blog post was as usual promising to those of us who are in the early battle with this disease.

Honestly I no longer have the extreme fear that gripped me when I learnt about my DH's MS diagnosis. I am hoping we get a cure/better management for MS in the next 10-15 yrs.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sun Jan 01, 2012 3:23 pm

Thanks AV!

And I just received a comment today on my latest posting that I wanted to share because I thought it very nice and sincere, as follows:


January 1, 2012 11:25 AM

Christopher Martinsson said...

Hi! I received the HSCT-treatment in Sweden 10 month ago. My symptoms pre-transplantation was nearly exactly the same as your ones. I was nearly at 7 on the EDSS-scale and were in need of a wheelchair. I went from 3 to 7 in just a month or so. I had to quit my job as an airline-pilot, but now I'm back thanks to this treatment. It's fantastic and for me it's very much a cure.

As I still have some symptoms left I'm very curious to what you might have done different (if anything) during the "rehab" period from your transplant up to this day (2 years later)?

Happy New Year and all the best from Sweden!

January 1, 2012 12:25 PM

George Goss said...

Hi Christopher,

Thank you so much for your comments. I am so very glad to hear of your remarkable improvement in your health following HSCT. And of course I am also very happy to know that HSCT has enabled you to return to your profession as a pilot. I hope to be a passenger on your airplane some day!

Following HSCT the body just recovers and heals on its own. So I didn't do anything extra or special following my own HSCT other than to remain in generally good physical health. The main thing is to stop the underlying MS disease activity. After that the body will take care of itself.

Congratulations to you for having HSCT to cure your MS! All the best to you in this New Year.

George
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CVfactor » Sun Jan 01, 2012 4:07 pm

Hi George,

Im glad to see you are doing so well and that most of your your leg problems are eleviated so that you can walk long dustances again. I'm in the same situation you were in with my legs in that I can only walk about 200 yards before being exhausted. I also seem to have a lot of spasms in my legs.

But Im interested to know what you attribute your progress to? It seems to me that the only way to have improvement would be due to remylination occuring. If axonal damage was sustained as the cause of leg weekness it does not seem to me that this could be repaired (gray matter does not regenerate?).

Keep up with the updates because there are people on this site that beleive HSCT is a logical cure for MS.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sun Jan 01, 2012 5:49 pm

Hi CV,

Sounds like your current ambulation status is quite similar to my own pre-transplantation capability. Before HSCT if I really pushed myself hard I could probably get approximately 400 meters maximum walking distance and couldn't possibly go any further without some serious resting. I haven't pushed myself to the limit today, but I have been able to make a couple of kilometers without dropping from exhaustion. Its nice because now I can combine two, or more household errands in the same trip (such as supermarket and hardware store). Although I'm certain she would never admit to it, I always wondered if my wife thought I was being a baby and milking my disability. I'm glad that I no longer worry about this.

You're right about the point that once a nerve dies, its gone for good. However, the body does have the ability to form and connect newly-established neural pathways that bypass the older dead ones. This is a well-established phenomenon that has been shown to be most evident with stroke victims that have lost neural groups from blood (Oxygen) loss. Unfortunately this dead nerve "bypass" effect happens at an extremely slow rate, probably mediated by a complex cascade of cytokine expression. So, often (especially for progressive MS cases like my own SPMS) the repair will often take much longer and be less complete as compared to re-mylination as shown in RRMS cases post-HSCT (which is also why RRMS cases respond more favorably to HSCT). I think this is why the nerve function improvement for my legs is happening so slowly. But luckily at least it is happening, slowly but surely.

Side note. . . the confirmed existence of the aforementioned nerve bypass effect is also why I support the idea of possibly doing mesenchymal stem cell (MSC) infusion therapy following HSCT. MSC's are a potent mediator of cytokine repair messenger molecules that may be the causative agents invoking this new-growth nerve and connection effect (this is what the in-vitro studies have suggested anyway). Someday I may still go for (culture expanded only) MSC therapy. I haven't decided yet. But if I do, at least I've done it in the correct order. First, stop the MS disease activity via HSCT. Second, try to repair damage with culture expanded MSC infusion that "might" be more effective than the body can do alone.

Regards,

George
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Re: HSCT And MS

Postby seeva » Wed Jan 04, 2012 4:31 am

Hi Geroge my name is seeva from sydney australia. after red your last post to a indian m.s patients i have send a letter to DR. AMIT RAUTHAN, BANGALORE regarding HSCT stemcell for my PMS. But because my aged is 63 years old now he cannot fit me in to his HSCT program. the criteria for his program The patient should be less than 60 years old. so people like me cannot go for this treatment. Same think in australian dr. who done few stemcell treatments. in canberra. his criteria the age limit is under 55years old and maximum 5 years old m.s patients only can fit for the treatment. so we are out of stemcell treatment. you know any one we can try for HSCT treatment.
regards
seeva :roll:
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Re: HSCT And MS

Postby georgegoss » Wed Jan 04, 2012 9:15 am

seeva wrote:Hi Geroge my name is seeva from sydney australia. after red your last post to a indian m.s patients i have send a letter to DR. AMIT RAUTHAN, BANGALORE regarding HSCT stemcell for my PMS. But because my aged is 63 years old now he cannot fit me in to his HSCT program. the criteria for his program The patient should be less than 60 years old. so people like me cannot go for this treatment. Same think in australian dr. who done few stemcell treatments. in canberra. his criteria the age limit is under 55years old and maximum 5 years old m.s patients only can fit for the treatment. so we are out of stemcell treatment. you know any one we can try for HSCT treatment.
regards
seeva :roll:


Hi Seeva,

Yes, unfortunately in this case the "myeloablative" HSCT protocol (as performed by Dr. Rauthan in Bangalore) is rather aggressive medical treatment and it is rational to limit it for patients over the age of 60 years of age because of tolerability issues and possibility of untoward complications.

However, the alternative "non-myeloablative" HSCT protocol is less aggressive and can be administered to MS patients of any age with no restrictions. And the good news is that the clinical trial data shows that so far it appears to be just as effective to provide curative efficacy to MS patients.

Dr. Shimon Slavin at CTCI in Tel Aviv Israel will perform the non-myeloablative HSCT for you generally without restriction (if you are otherwise in sufficiently acceptable health). The downside is that he is currently charging $94,000 for the procedure, so I can understand how this would be a problem for most people to pay this price. His info is also listed on this page:

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

I am not aware of any medical facility in India that will perform a non-myeloablative HSCT protocol because (as opposed to a myeloabltive HSCT protocol) it is not a common medical procedure and it is unlikely that any doctors in India will be experienced with, or know how to do it.

Sorry to say this is the only additional relevant information I can add. My sincerest best wishes to you.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CureOrBust » Wed Jan 04, 2012 5:49 pm

Question from left field, did you go through an EBV infection as a child? and is it part of the post immunisation protocol in any way?
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Wed Jan 04, 2012 6:08 pm

CureOrBust wrote:Question from left field, did you go through an EBV infection as a child? and is it part of the post immunisation protocol in any way?


The question is very relevant.

As far as I know, I never suffered an infection of EBV, or any other related "herpes-like" viral infection. The closest thing I had of the herpes-type virus family was run-of-the-mill chickenpox when I was four years old.

Herpes family immunizations (VZV and chickenpox) are contraindicated and not recommended following HSCT because these vaccinations are a weakened live virus and the medical establishment does not want to risk the activation of such a viral infection. The only exception to this rule is (after waiting two-years post-transplantation) to have an MMR vaccination because the risk of getting measles and dying from it as an adult (7% death rate) outweighs the risk from the vaccination itself. So actually I will soon be getting an MMR vaccination, but not the other live virus vaccinations (VZV).

I would bet later in life when my lymphocyte sub-type population enter a homeostatic stabilization, then probably these other live vaccinations will be OK (for example elderly people are encouraged to get a shingles vaccination, which is VZV). I'll probably do it in another 15-20 years.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby shucks » Sun Jan 08, 2012 3:05 pm

Doesnt the re vaccination only apply to the myelablative protocol? I thought I had read that somewhere before.

As an aside, I have an appointment to meet Dr. Burt in chicago on 2-1, and hope it goes well. thanks to asher, packo, and george for turning me on to this idea a year or so ago. I have read everything and am scared and excited to get to talk to him in person about this procedure.

JSH
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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sun Jan 08, 2012 5:16 pm

shucks wrote:Doesnt the re vaccination only apply to the myelablative protocol? I thought I had read that somewhere before.

As an aside, I have an appointment to meet Dr. Burt in chicago on 2-1, and hope it goes well. thanks to asher, packo, and george for turning me on to this idea a year or so ago. I have read everything and am scared and excited to get to talk to him in person about this procedure.

JSH


Yes, you are correct. As opposed to the myeloablative protocol, the non-myeloablative HSCT therapy retains "just enough" immune memory cells that the patient need not be re-vaccinated. . . . Dr. Burt has published his reasoning for why the non-myeloablative protocol does not require re-vaccination as follows:

[For the non-myeloablative HSCT protocol for MS] "Autoreactive memory cells survive and autoantibodies, while significantly diminished, generally remain positive."

Congratulations to you Shucks for making progress in taking on your MS head on! Let us know if any of us can assist you with anything. If you do make it to Chicago (or elsewhere) for HSCT, perhaps I'll stop through during your hospitalization to say hello and give a little moral support. Keep on going!

And you keep this video of Dr. Burt in mind to help maintain the motivation. . . . .

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel
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Re: 2 Years Post HSCT And MS Still Stopped

Postby shucks » Sun Jan 08, 2012 6:40 pm

It would be nice to have a friendly face if it gets that far. I will probably go up by myself, as my fiance will have to stay and keep down the fort at home. My dad would like to come, but I dont know about that either. No matter what, i have a positive mindset and want to thank you guys.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby CVfactor » Sun Jan 08, 2012 9:06 pm

[For the non-myeloablative HSCT protocol for MS]
"Autoreactive memory cells survive and
autoantibodies, while significantly diminished,
generally remain positive."

Seems like the non-myeloablative method would be less effective over the long run to me if your immune system is not completely set to a naive state. I suspect that the initial benefits in this method may only be due to a diminished CD4+ T cell population.
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Re: 2 Years Post HSCT And MS Still Stopped

Postby shucks » Sun Jan 08, 2012 9:24 pm

Since Dr burt was the pioneer of the use of hsct for ms, I will defer to him.
"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

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Re: 2 Years Post HSCT And MS Still Stopped

Postby georgegoss » Sun Jan 08, 2012 10:07 pm

CVfactor wrote:[For the non-myeloablative HSCT protocol for MS] "Autoreactive memory cells survive and autoantibodies, while significantly diminished, generally remain positive."

Seems like the non-myeloablative method would be less effective over the long run to me if your immune system is not completely set to a naive state. I suspect that the initial benefits in this method may only be due to a diminished CD4+ T cell population.


I was thinking along the same lines. What I wrote about this specific issue in my blog (BTW. . . if I could not have received a myeloabltive protocol, I would have been totally OK with the non-myeloablative protocol as performed by Dr. Burt anf Prof. Slavin). . .

Following my own research comparing the two different HSCT treatment protocols I arrived at my own decision to seek the myeloablative (BEAM) therapy for one specific reason that is just my own thinking that can clearly be characterized as conjecture since I have no proof or evidence that I am correct in my logic here. . . . the surrogate indication of re-vaccination requirement following myeloablative (BEAM) therapy tells me that the immune system is definitively & completely rendered antigen naive and I think has a better possibility of remaining self-tolerant (and MS progression-free) for a longer period of time as opposed to the non-myeloablative protocol that does not render the body's immune system entirely antigen-naive. So far (at 8 years post-transplantation) the clinical results indicate that both approaches have shown substantially similar curative therapeutic benefit. But the question now is "what happens over a longer timeframe, such as 15 or 20 years?" Will the two approaches still have comparable curative efficacy? No one yet knows the answer because we have not yet hit this milestone. But since I was more interested in a durable long-lasting cure as opposed to a more rapid recovery timeframe, I chose the myeloablative (BEAM) protocol in the chance that it "might" have better lifetime curative success. Of course only time will tell on this since there is no way to know the answer today. I may end up eating my own words at some point in the future if my assumption is proven incorrect. On the other hand, if my assumption is proven correct I'm going to be extremely happy that I chose the myeloablative protocol. Eventually we'll see which way this proves out. But if you have MS and are looking to complete an HSCT procedure, you can consider these factors as part of your criteria and decide for yourself.
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