My 1 Year post HSCT update

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reallyreally
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My 1 Year post HSCT update

Post by reallyreally » Fri Oct 24, 2014 6:54 pm

Just returned from Northwestern from my 1 year check up from my stem cell transplant with Dr. Burt. I have not been on any MS medication since August of 2013. My MRI with contrast of brain and spine showed no new lesions. I am still a 1 EDSS (down from a 4.5 14 months ago). I will return again next year. But, so far their study shows 10 years out; patients remain stable and do not progress. They are inundated with inquiry's now, So happy other people are hearing about this. Interview with Dr. Burt on MS connections:
http://www.msconnection.org/Blog/August ... An-Intervi

Pesho
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Re: My 1 Year post HSCT update

Post by Pesho » Sun Nov 02, 2014 9:52 am

Your progress is very good reallyreally. 3.5 points EDSS for 14 months is more than good, usually they say 3 points for a period of 2-3 yars :). Hope more people get the procedure and to become more common.

reallyreally
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Re: My 1 Year post HSCT update

Post by reallyreally » Mon Nov 03, 2014 9:04 am

Thanks! I am very happy, feel very lucky. I hope more and more people find out about this; and that Dr. Burt publishes his findings soon. I will continue to post updates, though doesn't seem like there is a lot of interest for this treatment here.

reallyreally
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Re: My 1 Year post HSCT update

Post by reallyreally » Mon Nov 03, 2014 9:06 am

Pesho--What happened in your pursuit of treatment?

Pesho
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Re: My 1 Year post HSCT update

Post by Pesho » Mon Nov 03, 2014 10:42 am

reallyreally wrote:Pesho--What happened in your pursuit of treatment?
Well, found a doctor and battling government health agency at the moment to allow the procedure. And we are just after elections and no one is paying attention. Otherwise it is illegal to perform HSCT for MS, although it is done for other conditions on daily basis.... Stupid laws.

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CureOrBust
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Re: My 1 Year post HSCT update

Post by CureOrBust » Tue Nov 04, 2014 3:49 am

Firstly, great to hear you are doing so well!
reallyreally wrote:I have not been on any MS medication since August of 2013.
I thought they changed their treatment to include 1 year of copaxane? This is HiCy at John Hopkins isn't it?
reallyreally wrote:..But, so far their study shows 10 years out; patients remain stable and do not progress.
I also thought they had some relapse such as ChrisHasMS? if this is HyCy... :?

reallyreally
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a

Post by reallyreally » Tue Nov 04, 2014 6:54 am

CureOrBust wrote:I thought they changed their treatment to include 1 year of copaxane? This is HiCy at John Hopkins isn't it?
This was the HSCT Hematopoietic stem cell transplantation (HSCT) at Northwestern under Dr. Burt.

It is not the same protocol (HICY) that they use at Hopkins or UTSouthwestern In Dallas, TX or any other number of cancers centers around the country. Super basic difference between the two treatments: The HICY treatment is the administering of 4 days of high dose Cyclophosphamide; sometimes followed by a year of copaxene. The HSCT uses a combination of immune suppressing drugs, and your own stem cells which are harvested earlier.

More detailed information on both:
HSCT: http://www.stemcell-immunotherapy.com/
HICY at Johns Hopkins: http://www.hopkinsmedicine.org/news/med ... d_patients

At Northwestern there are many FDA approved clinical trials utilizing stem cell transplantation for autoimmune diseases and vascular diseases. DIAD pioneered and performed America’s first hematopoietic stem cell transplants to treat: Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma.)

http://www.stemcell-immunotherapy.com/

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Chilax
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Re: My 1 Year post HSCT update

Post by Chilax » Thu Nov 06, 2014 7:17 am

I had my HSCT procedure at Northwestern in Chicago during 8/11. My MS has remained stable; the one, two and three year follow-up MRI's have consistently revealed no new or enhancing lesions on the brain and spine.

Attached below is a Facebook page with approximately 2,500 members. The FB page is dedicated to providing information regarding Dr. Burt's HSCT protocol for MS and other autoimmune diseases. In the ‘files’ section you will find tons of very useful information.

https://www.facebook.com/groups/burthsct/

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