My CtrlAltDel - Status

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Re: My CtrlAltDel - Status

Postby shucks » Tue Jun 12, 2012 7:00 pm

You guys are inspiring
"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: My CtrlAltDel - Status

Postby Liberation » Tue Aug 21, 2012 12:33 am

Asher wrote:Thank you Kevin. So glad you are going to get treated! Good news is that your recovery will be speedier as your HSTC is milder, whilst not being less effective, at least so it seems. Wish you good luck, although you will not needed, your in very competent hands. Let us hear how you're doing once you 'get back on your feet' :-D Asher


Hi Asher and others,
As some of them might know I have been following stem cell treatment for quite a few months and now I just made the decision that I would do it. I am in talk with Dr Slavin about a stem cell therapy. Since I have PPMS he thinks that the aplicable stem cell treatment, HSCT or MSC should depend on my MRI whether it shows active lesions or not.
Anyway, even the cheapest treatment would cost $32,000, HSCT would be even much more expensive. As this would really burden me financially, as $ strengthened circa 50% to our local currency, I would be really interested in any way to raise some funds. Unfortunatelly, interest rates at the banks are over 10% in my country.
If anyone has an idea how to do it, I would greatly appreciate it.
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Re: My CtrlAltDel - Status

Postby shucks » Tue Aug 21, 2012 4:00 am

I am holding a battle of the bands and silent auction this Friday to help raise funds. We got a couple local bands to play and a local beer distributor to donate beer and wine. I have know idea how muchoney it will raise but it will be a blast.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby Liberation » Tue Aug 21, 2012 7:04 am

shucks wrote:I am holding a battle of the bands and silent auction this Friday to help raise funds. We got a couple local bands to play and a local beer distributor to donate beer and wine. I have know idea how muchoney it will raise but it will be a blast.


Thanks, shucks. Have any of you tried contacting companies directly or something similar? I think Asher mentioned something like this. I am trying to get an appointment for MRI soon and then Prof. Slavin would recommend a treatment accordingly. Unfortunately, I am short of money and prices are very high.
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Re: My CtrlAltDel - Status

Postby Pesho » Wed Aug 22, 2012 10:02 am

Just a quick question. I might find a facility in Bulgaria that could do HSCT. Just wondering if it a good idea to make the procedure in a hospital, where they don't have much experience with it? I'm almost 100% sure I will go to Moscow next year, but it might be a lot cheaper in Sofia.
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Re: My CtrlAltDel - Status

Postby shucks » Wed Aug 22, 2012 11:36 am

We had luck getting small donations from companies, but what companies are more apt to donate are gift cards and merchandise to auction off at raffles or silent auctions.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby shucks » Wed Aug 22, 2012 11:45 am

Pesho,
I know that others will say that the procedure is so common now for leukemia that pretty much anywhere can do it. I see stories like Stella's as a caution to use the best facility possible. While finances might make me change, My heart is set on Dr. Burt in Chicago, though it is 150k american dollars. I am nowhere near that in my fundraising, so may have to compromise. Theorists alway have the ability to think big.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby Pesho » Wed Aug 22, 2012 11:53 am

I'm also thinking about donations. I work in a multinational company, just don't want to try and get the money from there. And I might loose my job if they find out, so I rather be ready to be without a job, rather than being surprised. Don't know if anyone had any success with indiegogo, but there are just too many petitions out there :(. And also, most people won't give money for something that is not accepted as a treatment yet :(. Also the risk of getting infertile, I don't have kinds yet so it also something I'm thinking about.
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Re: My CtrlAltDel - Status

Postby shucks » Wed Aug 22, 2012 12:14 pm

I have had the same concerns. I am in a public appointed job and can be bumped for any reason or no reason at all since it is a "higher profile" job, and at 31 years old, I am in the "kid having" mindset myself. OI have been saving vacation time over the last four years to the point I have 12 weeks saved up, andf hope that would cover me for the procedure if I can get the money raised.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby Liberation » Wed Aug 22, 2012 12:22 pm

Pesho wrote:Just a quick question. I might find a facility in Bulgaria that could do HSCT. Just wondering if it a good idea to make the procedure in a hospital, where they don't have much experience with it? I'm almost 100% sure I will go to Moscow next year, but it might be a lot cheaper in Sofia.


Hi Pesho,
when I mentioned HSCT to my neuro, he said that it is scientifically supported and it is something that according to our current knowledge should help; however, he thinks that in most places the death rate is still very high around 5% this is why he has reservations about it. Just one additional note, he mentioned that he also has MS patient in his family. This is why I think it is very important to have the treatment at a very reputable hospital, like that of Dr Burt.

The other thing that Dr. Slavin told me that currently, they offer two stem cell treatments, one is HSCT, the other is MSC therapy. He told me that patients whoses MRI show no active lesions he does not recommend HSCT, rather MSC. I am still waiting for his reply to get an MRI done.

I do not know how reliable are the numbers that Prof Slavin told me but he mentioned that MSC shows a 60-70% based on his experience.
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Re: My CtrlAltDel - Status

Postby shucks » Wed Aug 22, 2012 12:34 pm

Dr Burt says the same thing about active lesions. Having a gain in lesion count between different MRIs also qualifies for "active lesions" since there must be inflamation for new lesions to accrue.
"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

Who is John Galt?
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Re: My CtrlAltDel - Status

Postby Liberation » Wed Aug 22, 2012 12:45 pm

shucks wrote:Dr Burt says the same thing about active lesions. Having a gain in lesion count between different MRIs also qualifies for "active lesions" since there must be inflamation for new lesions to accrue.


To me, it seems logical what you are saying.

I would be happy of trying any of the two stem cell therapies if there wasn't such a huge financial burden and therefore, financial risk.
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Re: My CtrlAltDel - Status

Postby Pesho » Wed Aug 22, 2012 12:48 pm

What is the price of MSC therapy? Only available in Israel with prof. Slavin?
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Re: My CtrlAltDel - Status

Postby Liberation » Wed Aug 22, 2012 1:04 pm

Pesho wrote:What is the price of MSC therapy? Only available in Israel with prof. Slavin?


It is $32,000. I think he is the most experienced with MSC. He was heading the department at Hadassah and the clinical trials with MSC in phase 1. There 11 persons out of 15 improved in EDSS on average circa 1 point, while the others did not deteriorate in EDSS in 6 months.

Most of the ongoing clinical trials is based on his protocol. He completed several MSC treatments and he never experienced any major side effects. He said that the only risk is financial that you lose $. He said that the success rate is circa 60-70%.

If money weren't be part of the equation, I would not hesitate a minute.
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Re: My CtrlAltDel - Status

Postby Liberation » Wed Aug 22, 2012 1:09 pm

Pesho,
Ican send you in email an official study about phase 1 clinical trial completed at Hadassah
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