My CtrlAltDel - Status

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Re: My CtrlAltDel - Status

Postby Pesho » Sat Aug 25, 2012 2:36 pm

32 000$ in Israel? If this is the case, it could be a lot cheaper in other countries. Just I'm not sure if it only repairs the damage or it stops the disease?
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Re: My CtrlAltDel - Status

Postby Liberation » Sun Aug 26, 2012 6:47 am

Pesho wrote:32 000$ in Israel? If this is the case, it could be a lot cheaper in other countries. Just I'm not sure if it only repairs the damage or it stops the disease?


I know about only two clinics where they do colony expanded MSC treatment, one is in Israel and the other in the USA. In the USA, the treatment is $ 28,000, but there you have to stay in Houston for two weeks as you get three injections. Without colony expansion it might be worth nothing. If you knew a cheaper repuatble clinic with colony expanded MSC, I would be interested in.

The Prof told me that if you have no active lesions and if you want to avoid potential risks associated with HSCT then he recommends MSC. MSC should have an immunmodulatory effect and also it induces some repair.

As far as I know HSCT can reboot your immune system with an over 70% of success rate. Then, you should be ok for a long term. However, there are differences in treatment protocols that results in different results among clinics. This is why I would think you should go to a repuatable hospital, like Heildelberg or dr. Burt's hospital in the USA. I would avoid third world countries or East Europe. I know professors from East Europe, but they do not recommend this region.
Last edited by Liberation on Sun Aug 26, 2012 1:25 pm, edited 1 time in total.
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Re: My CtrlAltDel - Status

Postby Pesho » Sun Aug 26, 2012 12:06 pm

I'm from East Europe, Bulgaria :). I'm planing to go to Moscow for HSCT next year, but I will follow MSC treatment and I might go with that if it proves a viable option.
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Re: My CtrlAltDel - Status

Postby czapski » Thu Sep 13, 2012 5:16 pm

Maybe little off-topic, but I love You guys, this forum has given me hope and helped me live last 1,5 years (and coincidence or not - progression stopped). Similarly to You I have rather "exposed" job and live in "official denial" of disease (and I am 31 years old too ;)
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Re: My CtrlAltDel - Status

Postby Gogo » Fri Sep 14, 2012 5:06 am

czapski wrote:Maybe little off-topic, but I love You guys, this forum has given me hope and helped me live last 1,5 years (and coincidence or not - progression stopped). Similarly to You I have rather "exposed" job and live in "official denial" of disease (and I am 31 years old too ;)


I am glad to hear that your progression stopped. Keep up your good spirit! The present is not bad, we have HSCT and also MSC. Both are in clinical trials and both are available for public for money and the efficacy of both are confirmed, even with no 100% of success rate, but what the heck, in life there is no 100%. ...And the future will be just better.
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Re: My CtrlAltDel - Status

Postby shucks » Fri Sep 14, 2012 8:19 am

Glad to see you are doing better. I finally had to "come out" around work and to the community I am in in order to try to raise money for the HSCT treatment. I have gotten a bunch of patronization, but a fair amount of understanding and gnuine caring. I have been surprised that we have raised nearly 30k in a month. It is lowing down, but we are moving forward. I have recieved a lot of great information and support from the folks here and think Highly of nearly all innvolved with this forum.
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Re: My CtrlAltDel - Status

Postby Asher » Mon Sep 24, 2012 1:30 am

Hi,

The next chapter in an evolving story...

I promised honest reporting, so here we go. It took some 10-12 months for the chemo fog of HSCT to clear before I could start telling how I was really doing. The benefits and improvements I had reported were real but 14-15 months post transplantation I started to notice I had stopped to improve and I also noticed small and subtle signs that my MS was still active and that I am getting worse again. You see, after 15 years of MS one becomes extremely attuned and accurate about the slightest and most subtle changes in your physique. I'll spare you the details, but HSCT has stopped working for me and to quote George "this is a probability game, no guarantees".

So I'm back to square one. I let no grass grow under my feet and I have been to see Prof. Slavin in Tel-Aviv Israel two weeks ago. He is a remarkable person, took his time, was very thorough and very candid. Bottom line, you may have already guessed, the next 10 days I'll be on my way to Tel-Aviv for a BMA, 3 months after which I will go to Switzerland to have the cultured MSC's pumped into my failing body. If this works and should I experience even modest improvement, I'm willing to repeat this procedure once every 12-18 months (provided the Prof. is willing to adopt such a strategy).

So a somewhat somber post spiced with hope, yours,

Asher
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Re: My CtrlAltDel - Status

Postby shucks » Mon Sep 24, 2012 6:30 am

Asher,

I know I should know this, but were you rr pp or sp at the time of your treatment? I am sill in rr, but disability is slowly accumulating. I went to see dr Burt and have been fundraising ever since. I is great to have your perspective on this.
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Re: My CtrlAltDel - Status

Postby Asher » Mon Sep 24, 2012 2:33 pm

Hi shucks, I'm SP. You're more likely to fully benefit from HSCT as statistics are on your side.
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Re: My CtrlAltDel - Status

Postby shucks » Tue Sep 25, 2012 6:26 am

Please keep us posted. I guess what dr Burt put in his last paper about inflammation being the key is really the key to this crazy disease.
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Re: My CtrlAltDel - Status

Postby Gogo » Tue Sep 25, 2012 1:12 pm

shucks wrote:Please keep us posted. I guess what dr Burt put in his last paper about inflammation being the key is really the key to this crazy disease.


shucks, what do you mean by "inflammation being the key"? The worst part of the disease is the progressive stage and that part is not inflammatory with no active lesions. This stage is neuro degenerative and not inflammatory.
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Re: My CtrlAltDel - Status

Postby shucks » Tue Sep 25, 2012 3:38 pm

A big part if the theory behind hsct as a treatment is to stop the underlying inflammatory disease activity to ward off the next two stages of the disease. Along with having an immune naive system to replace the old malfuntioning immune system.
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Re: My CtrlAltDel - Status

Postby Liberation » Wed Sep 26, 2012 1:26 am

shucks wrote:A big part if the theory behind hsct as a treatment is to stop the underlying inflammatory disease activity to ward off the next two stages of the disease. Along with having an immune naive system to replace the old malfuntioning immune system.


Sorry to jump in, guys, but I am in contact with Dr Slavin just as Asher does. You are both right, shucks and Gogo. Dr Slavin told me that he only recommends HSCT when you have active lesions, so there is an active autoimmunity, but he does not recommend it when you do not have it. Then, something else is wreaking havoc, a neurodegenerative process is taking place. This is the case mostly with SP an PP, when he recommends MSC. As reaching progressive stage takes sometimes even twenty years, it will be interesting to see the effects of HSCT that time around. It is also an interesting thing, what is the relationship between autoimmunity and the neurodegenerative process as most of the SP and PP patienst have no active lesions.
It is also an interesting thing that EAE, the mice disease that they base MS on, can be cured by drugs, but none of the drugs developped can cure MS.
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Re: My CtrlAltDel - Status

Postby Asher » Wed Sep 26, 2012 8:24 am

orry to jump in, guys, but I am in contact with Dr Slavin just as Asher does. You are both right, shucks and Gogo. Dr Slavin told me that he only recommends HSCT when you have active lesions, so there is an active autoimmunity, but he does not recommend it when you do not have it. Then, something else is wreaking havoc, a neurodegenerative process is taking place. This is the case mostly with SP an PP, when he recommends MSC. As reaching progressive stage takes sometimes even twenty years, it will be interesting to see the effects of HSCT that time around. It is also an interesting thing, what is the relationship between autoimmunity and the neurodegenerative process as most of the SP and PP patienst have no active lesions.
It is also an interesting thing that EAE, the mice disease that they base MS on, can be cured by drugs, but none of the drugs developped can cure MS.


And still so much remains an enigma: why do the statistics show some 70% of SP and some PP patients benefit from HSCT? Is it that they were wrongly diagnosed, or is it that the neurodegenerative process does involve some kind of inflammatory activity? Perhaps George could offer some perspective?
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Re: My CtrlAltDel - Status

Postby Liberation » Thu Sep 27, 2012 9:01 am

Asher wrote:Hi,

So I'm back to square one. I let no grass grow under my feet and I have been to see Prof. Slavin in Tel-Aviv Israel two weeks ago. He is a remarkable person, took his time, was very thorough and very candid. Bottom line, you may have already guessed, the next 10 days I'll be on my way to Tel-Aviv for a BMA, 3 months after which I will go to Switzerland to have the cultured MSC's pumped into my failing body. If this works and should I experience even modest improvement, I'm willing to repeat this procedure once every 12-18 months (provided the Prof. is willing to adopt such a strategy).

So a somewhat somber post spiced with hope, yours,

Asher


Hi Asher,
Did you have to pay consultation fee for meeting Prof Slavin? I just kept contact with him through emails and now I sent all the required info to him for MSC and am waiting for dates for the treatment. If you can share any info you received from Prof Slavin I would really appreciate it. Unfortunately, through emails it is not possible to get the full picture. I am wondering whether winter, when infections are more prevalent, are a good time to get the treatment. Switzerland must be cold in winter time. Any precautions that must be taken to enhance the success of the treatment? Anything about predicting who might benefit? Does Prof Slavin follow patients' conditions after treatment? Any statistics? You probably read that Prof Miller's team in the USA found out that it is likely that different individuals' stem cells contain different amount of a specific growth factor that influence the success rate. Any opinion on that from Prof Slavin?
Wish you a successful treatment and really curious what you found out when met Prof Slavin.
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