How do I buy HSCT treatment?

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trisca
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How do I buy HSCT treatment?

Post by trisca »

I've been googling for an hour. I found the irf website with a list of hospitals in the world that perform the procedure. But do they do it to anyone, as in not in a clinical trial? Is there a place I can just pay for it. (Presumably not in the us because I don't have an endless source of funds.)

How do you go about getting it???
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tzootsi
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Re: How do I buy HSCT treatment?

Post by tzootsi »

Here's are some links:

http://www.ctcicenter.com/

http://www.the-stem-cell-center.com/

Good luck, don't know how effective they are.
trisca
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Re: How do I buy HSCT treatment?

Post by trisca »

Thank you!
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1eye
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Re: How do I buy HSCT treatment?

Post by 1eye »

Israel is probably different, and I would have thought the US was different, but advertising treatments for EAE does not give me a lot of confidence. Even after Obama supposedly reversed George Bush and made embryonic stem cells legal, are there no stem cell lines that can be used? My brother had to wait for a donor to be found for his marrow transplant, and now gets host-graft problems. But it did treat his leukemia. Why can't embryonic cells be used, even if they are not free of genetic matching requirements?

If you told me it was not available in Canada, I might believe you, since Steven Harper did a lot of appointing, but I'd be willing to take the Science Minister to task on that. Even if they can't afford to treat everybody with MS, if they could treat only R-R, I'd be for it. If they had to limit it by age I could handle that too, but I think it should be available no matter how old you are, if it works.
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trisca
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Re: How do I buy HSCT treatment?

Post by trisca »

The stem cells are taken from your own blood, separated out via a machine, then chemo to kill off your immune system, then your stem cells are re-introduced.

The cost of the procedure is less than one year's worth of dmd.
TeresaL
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SCT

Post by TeresaL »

I went to StemGenex in CA. Used own fat cells. Didn't work for me. I also have Lyne. My friend went to mex for embryo SCT she is still in wheelchair. Didn't help her. If I do it again. Will go to celltex in Houston tx
SarahBlair
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Re: How do I buy HSCT treatment?

Post by SarahBlair »

I believe Tel Aviv Israel has suspended HSCT for MS recently. This is being reported to be the case on at least one Facebook page.
WilliamWallace
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Re: How do I buy HSCT treatment?

Post by WilliamWallace »

Trisca, if you haven't already you should subscribe to the main facebook group covering HSCT (https://www.facebook.com/groups/149103351840242/). This is a private group but someone will usually grant you access fairly quickly if you request it.

From there, if you look in the files section, you'll find a list of facilities world wide that provide this treatment along with the requirements, costs, contact details, etc. Most of them also have individual facebook groups if you want to find out about a facility in greater detail and get in touch with other patients.
romayana
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Re: How do I buy HSCT treatment?

Post by romayana »

https://www.facebook.com/hsct4ms/

http://www.hsct4ms.com/

In Israel, only prof. Slavin's clinic has been closed. Hadassah Medical Centre and Shaarei Zedek Medical Centre, in Jerusalem, performing the treatment.
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1eye
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Re: SCT

Post by 1eye »

TeresaL wrote:I went to StemGenex in CA. Used own fat cells. Didn't work for me. I also have Lyne. My friend went to mex for embryo SCT she is still in wheelchair. Didn't help her. If I do it again. Will go to celltex in Houston tx
I would not be surprised if I went to Mexico and got ripped off. I have not heard anything about stem cells derived from fat cells being used to treat MS.

The thing that happens with HSCT which is not even alluded to in the name of it, and which has nothing to do with using homologous cells, or with graft-host donor-mismatch problems (because the donor is you), is the so-called immune system reset, which is basically killing off all immune cells, including the ones that know how to fight VZV, measles, mumps, the flu, tuberculosis, etc. So after the HSCT you can get all those things. How the immune system is "reset", is what typically varies depending on who is doing the treatment. It can include Campath, other mabs, radiation, and fairly nasty chemo drugs. Watch out for shingles.
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tzootsi
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Re: How do I buy HSCT treatment?

Post by tzootsi »

I'm very leery of overseas stem cell clinics - however, if you google Holly Huber, you will see lots of blogs on her positive outcome getting stem cell treatments in Central America.
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CureOrBust
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Re: How do I buy HSCT treatment?

Post by CureOrBust »

I am not saying its the case here, however, be wary of people/personal posts. A recent story on 60 minutes (Current affairs) here in Australia told the story how a patient was being paid to make posts on her treatment. In the beginning, she had positive results, which faded with time, but the posts had been made. I think she may of even been paid a commission off the back of new customers she brought to the clinic. The clinic was found to be run by shonks.

Don't look for the positive posts, although they will be much easier to find. Search high and low for negative or neutral
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