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sandonpoint Family Member

Joined: Feb 23, 2008 Posts: 26
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Posted: Sat Feb 23, 2008 2:40 am Post subject: Full text of recent study at Stony Brook . |
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This is a very interesting technique.
I did a bit of research for those interested the link to read the full text and the is below.
Here is the link
http://rapidshare.com/files/94168957/1388.pdf.html
Cheers
Sandon |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sat Feb 23, 2008 8:18 am Post subject: |
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| what? |
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Lyon Family Elder

Joined: May 04, 2006 Posts: 5345
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Posted: Sat Feb 23, 2008 8:44 am Post subject: |
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Hi Sandon,
At least for us, the link leads to a web hosting site.
Bob |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sat Feb 23, 2008 8:53 am Post subject: |
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Bob you word things so much better than I do.  |
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Lyon Family Elder

Joined: May 04, 2006 Posts: 5345
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Posted: Sat Feb 23, 2008 9:01 am Post subject: |
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| chrishasms wrote: | Bob you word things so much better than I do.  | I wanted to let Sandon know that I'd actually like to read it........but in the time since I've checked pubmed and the internet and wasn't able to find anything new from Stony Brook.....regarding high dose cyclophosphamide/MS anyway.
Bob |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sat Feb 23, 2008 10:31 am Post subject: |
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While I'm in MD@JH I will see what kind of info I can get my hands on, and make sure the wife keeps you up on everything!
Also, I'm sick! With a cold, Bob! LOL
Glad it's now, but I hope the wife gets it quick so she can get it over with. Her boss has it, I have it, so hopefully she is next.
SOOOOOON lol |
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Loobie Family Elder

Joined: Sep 12, 2006 Posts: 2096 Location: Dayton, Ohio USA
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Posted: Sat Feb 23, 2008 10:50 am Post subject: |
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Bob and Chris,
Rapidshare is a file sharing site. If you go down to the bottom, click the "free download" button and type in the 4 letter code, you get a PDF document from Stonybrook that I found very informative. I'd try it again, but do what I said about clicking the free download. It is not a program you are downloading, but rather the PDF file that someone put out there to be shared. I think it's a lot like the photo sharing sites. Give it one more try, I guarantee you will like the document if you want some "light" reading. |
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Lyon Family Elder

Joined: May 04, 2006 Posts: 5345
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Posted: Sat Feb 23, 2008 11:15 am Post subject: |
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Hi Chris,
No one can tell you not to worry, but I think you are in good hands. It may be a hell of an inconvenience, but if ANYTHING is a concern to JH when it's time for your treatment, they won't risk problems and you'll have to reschedule. I'm sure that would drive you nuts, but it's better than accepting unneccary risk.
You, or someone had mentioned that over 250 people have been treated so far. I'm sure at this point they're getting a pretty good system down.
Thanks Lew,
Now that I've done it, I'm glad you explained. I would never have realized there was a file there to be downloaded.
It's from 2006, the latest HDC paper from Stony Brook I'm aware of. I'd already read it.
I've always found this one interesting. I wrote the researcher about 6 months ago to ask if the lady still was showing no signs of progression, but never got a response http://www.msu.edu/~lyonro/hdcold.pdf
Of course cyclophosphamide has been around for many years, but to my awareness this accidental overdose is the first time that high dose cyclophosophamide ALONE was found to stop the MS disease process.
Bob |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sat Feb 23, 2008 1:49 pm Post subject: |
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Yes I agree with you Bob. I'm in great hands!
I'm done being worried. I'm the only one on either side I can tell thats worried lol!
If someone told me I had cancer I would do chemo so why not this right?
I just wish they would have done some more men in the prelim, but hey here I am! |
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Lyon Family Elder

Joined: May 04, 2006 Posts: 5345
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Posted: Sat Feb 23, 2008 3:24 pm Post subject: |
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| chrishasms wrote: | | If someone told me I had cancer I would do chemo so why not this right? | That's kind of the way that I look at it, but in the past, experimental MS treatments were dangerous and not beneficial so the mindset has become "wait until you're desperate before trying anything unorthodox".
Hopefully things like revimmune are going to change people's outlooks to one in which they try the unorthodox before they have lost a bunch of function.
| chrishasms wrote: | | I just wish they would have done some more men in the prelim, but hey here I am! | I'm not sure what figures you are talking about. Are guys less than 25% of that result?
Bob |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sat Feb 23, 2008 5:05 pm Post subject: |
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If you go to the site, and look at the pdf, it shows the breakdown of the original 13.
One of the 13 quit. I have a hell of a time reading all this stuff. It gets jumbled now so if I miss it sorry. Hopefully that goes away as well.
12 of the 13 chosen were woman. The 13 was a woman. 6 of the 13 were RRMS. The rest were SPMS.
The data directly shows a correlation between age, and disease duration. The people with RRMS (activity on MRI) showed the best EDSS improvements while only one of the SPMS showed any. Also it made me happy to see that a good deal of the people were only reporting at 6 or 12 months, not even the full 24 months.
Right now I hear a bell going off too. Sucks I agree but explains the protocol for sure.
So from what I can tell, I got nothing to loose but my life.
I'm being over dramatic lol |
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Lyon Family Elder

Joined: May 04, 2006 Posts: 5345
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Posted: Sat Feb 23, 2008 6:25 pm Post subject: |
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| chrishasms wrote: | | If you go to the site, and look at the pdf, it shows the breakdown of the original 13. | Thanks Chris, I should have put 2 and 2 together since we were just talking about that file.
| chrishasms wrote: | | One of the 13 quit. I have a hell of a time reading all this stuff. It gets jumbled now so if I miss it sorry. Hopefully that goes away as well. | Kind of like the beginning of Star Trek where they say "to boldly go where no man has gone before". A common sense guess is that you're going to experience some measure of improvement in every quarter, but some are going to be below the ability to measure.
Bob |
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Jamie Family Elder

Joined: Jan 08, 2008 Posts: 596
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Posted: Sat Feb 23, 2008 10:48 pm Post subject: |
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I for one had not read this.
It's a great summing up.
Two weeks to go! |
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sandonpoint Family Member

Joined: Feb 23, 2008 Posts: 26
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Posted: Sun Feb 24, 2008 6:23 am Post subject: |
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Just read the other pdf about the patient in brazil, interesting.
Just a question about this statement towards the end of the article
"We predict that this form of therapy may induce long-term remission in approximately 40% of MS patients, at significant enhancement of quality of life compared with any other form of presently available treatment"
Where did they pluck 40% from ?
Cheers
Sandon |
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chrishasms Family Elder

Joined: Sep 15, 2006 Posts: 1117
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Posted: Sun Feb 24, 2008 8:50 am Post subject: |
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If you look at the PDF I think it's because it's improving EDSS in 40% of the patients in the trial. Mostly, the people with RRMS.
I think there idea of remission is showing a clinical improvement just as in Cancer remission, well, you feel better ad show clinical improvement as well. If you are damaged beyond repair that may not be remission.
I think and I say this with a big huge capitalized, I THINK if you have RRMS, and no permanent damage, this is going to be a huge, huge, huge, treatment.
Wow Jamie, 18 days to treatment lol |
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