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She said she can assure there have only been 20 patients treated with Hicy for MS at JH: 9 in the study and 11 off label.
She says she'd be happy to clear it up for anyone who thought they heard different.
It's clear that there is some misunderstanding going on.
Quote:
I was told by Steve Faccett of Virginia who was receiving this the same time I was - HE was told by the Docs close to 100 had been treated and all were getting better.
The study itself, the published one, is not showing 100% success with every patient getting better, so the statement in that quote is not quite right, but it depends what a person means by "better" perhaps.
ALso, they are now understanding that the people who had the most enhancement on the initial MRI are better candidates. They also learned that they need to add something to keep the immune system from reverting to its old habit, thus copaxone is now going to be added.
Obviously you can't learn something like that unless you are having people who are not as successful as you hoped.
I still see that there are people like the MS case study with the accidental Hicy who had a long term remission for years (oh let that be me), as well as the many other diseases well treated with long term remissions and years of no disease activity, so small numbers in the MS group don't mean a person will not succeed with MS.
And geez, at least a person can get it if they want to; I know people who begged to get into trials they thought would be the real deal, then to not know if they got placebo or the real thing. That's not fun.
My MS is progressing and personally, I will have to do something soon. I may choose this over novnatrone which has always worried me (maybe unfairly). I am also an RN and I care deeply about full disclosure, so you see me interested in the numbers and details. I am always a litle slow to get on board! If someone is ready to go full ahead on a new treatment because they are up against it, I say bravo, I hope it goes well! But if you are going to do that you ought to know that that is what you are doing!
be well!
marie
Joined: May 04, 2006 Posts: 3397 Location: Mid-Michigan
Posted: Tue May 20, 2008 3:57 pm Post subject:
Thanks for pursuing that Marie!
Marie wrote:
The study itself, the published one, is not showing 100% success with every patient getting better, so the statement in that quote is not quite right, but it depends what a person means by "better" perhaps.
I am only offering this as my take on the situation, although it's been my opinion for a couple of years and I've yet to find something to more sensibly explain the situation In truth, this outlook of "demystifies" the "mysteries" of RRMS......and in a way, all of MS.
The symptoms of RRMS are initially almost exclusively owed to inflammation, so something (rebooting with HDC?) which stops the disease process and stops the inflammation provides seemingly remarkable results.
On the other hand, doing the exact same thing (stopping the disease process and inflammation) a little later, when the symptoms are less owed to inflammation and more owed to permanent damage "seems" less successful and is (and has always been) incorrectly viewed by us as less than 100% effective, despite the fact that expecting better results once the damage is permanent defies logic.
In other words, our current perception of "100% effective" results is illogical, unreasonable and unobtainable.
I know I sound like a broken record, but it bears repeating....The BEST we can hope to do is to stop the disease process as evidenced by lack of further progression. I know that's time consuming and not as flashy as the JH researchers would like, but it's honest.
I knew and said a long time ago that using improvement of symptoms as a primary endpoint and trying to claim credit where credit isn't due would come around to bite JH researchers in the ass, and it's happening already.
Bob
PS....I notice that Chris posted below and I want to point out that I did a later edit on this post which I doubt he would willingly agree with. _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Last edited by Lyon on Tue May 20, 2008 6:28 pm; edited 3 times in total
Well well said. No matter what those of us that get to stop this bugger will have some damage left over. It's going to be up to science to help us figure out how to fix myelin and black holes.
Joined: May 04, 2006 Posts: 3397 Location: Mid-Michigan
Posted: Tue May 20, 2008 7:16 pm Post subject:
chrishasms wrote:
I hope we do end the progression.
It's such a shame that MS is such a rotten disease to try to glean conclusive evidence from!
Admittedly it's not conclusive evidence but I think it says a lot in itself that many intelligent people and big money are involved with Revimmune.
You might think that they would be pushing a closed label, double blind clinical trial because in the past that has shown to be the quickest and most likely way to attempt to show the safety profile and distinguish the results of a treatment from the placebo effect. That is obviously absent from what we've seen from Johns Hopkins regarding Revimmune....why??
As mentioned earlier, there are smart people and money involved in this, so why the departure from the past?? Seems to me that JH researchers and the money behind Revimmune are pretty confident that Revimmune either
A: isn't worth a tinker's damn
B: has a known safety profile and is so effective that the constraints normally needed to distinguish from placebo are unnecessary and is only situation needing documentation specific to MS.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
I think because it's pretty straight forward. We give you this and you improve or at least stop progressing and we can look at an MRI and you have no new lesions, nothing active, and the ones you have a year later after treatment are smaller plus your EDSS stabilizes or goes down.
To do a placebo of an existing cancer drug could be tough. I'm just glad I don't have to figure this crud out and they do. I just showed up. LOL
Joined: May 04, 2006 Posts: 3397 Location: Mid-Michigan
Posted: Tue May 20, 2008 8:43 pm Post subject:
chrishasms wrote:
I think because it's pretty straight forward. We give you this and you improve or at least stop progressing and we can look at an MRI and you have no new lesions, nothing active, and the ones you have a year later after treatment are smaller plus your EDSS stabilizes or goes down.
I've paraphrased it often and have tried to remember where I read it for a year. I might not even be taking it the way that Dr Ebers intended, but it's a good read for a good think.
For some reason this phrase burnt itself into my (admittedly poor) memory
Quote:
One of my teachers, commenting on the value of a surgical procedure,
which he had devised, stated that clinical trials were unnecessary since it resembled the
suspension of a lead ball out the window—if it went up when released you knew this was
significant.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
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In truth, this outlook of "demystifies" the "mysteries" of RRMS......and in a way, all of MS.
It's such a shame that MS is such a rotten disease to try to glean conclusive evidence from!