Tovaxin Open Label Extension Schedules

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Loobie » Thu Oct 02, 2008 3:51 am

We, my coord. and I, talked to Opexa and they said they could not do the epitope shift 'test', whatever that is. I wasn't sure the reasons why, but I do know that they are going to try and determine that and adjust at some time, at least that's what I remember. If I'm not mistaken, they did say that sometime in the 2nd quarter, maybe, but since I've exited the trial, I really didn't commit it all, or I had to make room for a phone number or something :D . The discourse in the Tovaxin thread sure has gotten emotional. I think this is a natural response to hoping, with every bit of my heart and soul I might add, along with everyone else, against hope that this was going to fix us. As I've always stated, you can check the history of my posts, it doesn't work for ME. Neither did Avonex, and it works for many. Part of accepting you have this is the realization that nothing may work in your particular case, and that is a hard pill to swallow.

I can't in good faith tell everyone to "calm down". Do you guys remember the lunatic named Loobie who was going batshit because they delayed my extension stuff so many times around X-mas last year? I sure do. At any rate, we should not pass judgement all over each other based on our emotionally charged reactions to all this news. As Mike has pointed out, there are different ways to look at the data. I wish we could all get together in about three years and have a beer over the news that could come out by then. One thing to keep in mind is that we are all arguing about our interpretations. It's much easier when you have absolute empirical evidence about something. But once opinion gets involved............well just read the top four or so threads on here and watch the fur fly!
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News!

Postby JanethePain » Thu Oct 02, 2008 7:28 am

I just got the call from my coordinator that I've been on the Real Gunk, too! She said the neuro will have a folder of info ready for discussion on Visit One: I guess this will be all the MRI results and stuff.

Sounds good to me! In fact, it sounds so good I'm hungry. This calls for something loaded with a week's worth for fat and sodium (deluxe cheeseburger of some sort and PREMIUM onion rings), chased with a big old piece of hot fudge cake.

And REAL coffee, of course.

Here's to all of us! :D
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Re: News!

Postby av8rgirl » Thu Oct 02, 2008 8:24 am

JanethePain wrote:I just got the call from my coordinator that I've been on the Real Gunk, too! She said the neuro will have a folder of info ready for discussion on Visit One: I guess this will be all the MRI results and stuff.

Sounds good to me! In fact, it sounds so good I'm hungry. This calls for something loaded with a week's worth for fat and sodium (deluxe cheeseburger of some sort and PREMIUM onion rings), chased with a big old piece of hot fudge cake.

And REAL coffee, of course.

Here's to all of us! :D


Congrats Jane!! Woohoo!!!

If you get information about your MRI then I want to know about it. You can quote what I was told from my trial coordinator, of course, after you get your information.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Re: News!

Postby Lyon » Thu Oct 02, 2008 8:36 am

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Postby Lyon » Thu Oct 02, 2008 9:21 am

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Postby mommasan » Fri Oct 03, 2008 5:46 am

Hi,
I had HiCy and even though I am 22 years into this disease I have gotten a lot of function back. Still, I was beating down the doors at Opexa trying to get Compassionate User status for Tovaxin. I dwell over the question: Why Didn't It Work for some people? Why did it appear to make some worse?

Is it possible that once the vaccine attenuated over time in the system of those with a Very vigorous response that their stimulated immune systems continued to respond to the original target- their myelin? The increased number of myelin reactive T-Cells would do their job by presenting the antigen to the B-Cells thus putting the cascade into overdrive.

I am probably way off base.

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Postby JanethePain » Fri Oct 03, 2008 5:53 am

mommasan wrote:... I was beating down the doors at Opexa trying to get Compassionate User status for Tovaxin...


Does this mean you joined the trial at some point?
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Re: News!

Postby JanethePain » Fri Oct 03, 2008 6:00 am

av8rgirl wrote: Congrats Jane!! Woohoo!!!

Many thanks... I've about decided they'll call me for the first shot(s) around Trick or Treat so I'm thinking about making a costume of "a well person" for the occasion.

av8rgirl wrote: If you get information about your MRI then I want to know about it. You can quote what I was told from my trial coordinator, of course, after you get your information.

Great minds think alike, as ever! :D I have every intention of bringing out my LONG list of questions--happy to add the condescension from YOUR coordinator to the list; and I plan on summing up the tome with a "you neuros are going to have to get some consistency here--we MUST have compassionate and competent point people here."

I'm almost ready to bet dollars to donuts that the success rate for a lot of patients will have a lot to do with a non-stressful environment of certain study sites.
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Re: News!

Postby JanethePain » Fri Oct 03, 2008 6:01 am

Lyon wrote:
JanethePain wrote:Sounds good to me! In fact, it sounds so good I'm hungry. This calls for something loaded with a week's worth for fat and sodium (deluxe cheeseburger of some sort and PREMIUM onion rings), chased with a big old piece of hot fudge cake.
I love you dearly........at least in part because you are so sick and wrong! :wink:


:lol:
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Postby Lyon » Fri Oct 03, 2008 6:04 am

..
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Postby mommasan » Fri Oct 03, 2008 6:12 am

Hi Jane,
No, they never accepted me. They said they couldn't divert resources to Compassionate User status. As I had MS for 22 years, I was well over the time limit.

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Re: News!

Postby av8rgirl » Fri Oct 03, 2008 2:08 pm

JanethePain wrote:
av8rgirl wrote: Congrats Jane!! Woohoo!!!

Many thanks... I've about decided they'll call me for the first shot(s) around Trick or Treat so I'm thinking about making a costume of "a well person" for the occasion.


how do you do that?

JanethePain wrote:
av8rgirl wrote: If you get information about your MRI then I want to know about it. You can quote what I was told from my trial coordinator, of course, after you get your information.

Great minds think alike, as ever! :D I have every intention of bringing out my LONG list of questions--happy to add the condescension from YOUR coordinator to the list; and I plan on summing up the tome with a "you neuros are going to have to get some consistency here--we MUST have compassionate and competent point people here."

I'm almost ready to bet dollars to donuts that the success rate for a lot of patients will have a lot to do with a non-stressful environment of certain study sites.


Non-stressful environment? Maybe we should write a definition of that for them! LOL!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby patrickm » Tue Oct 07, 2008 7:07 am

Called my doc on Monday and was told that they had the results but wanted to see their patients in person to give them out. I go in on Friday.

And as bummed as I am to not have my results, judging by the confusion and emotions on here, a day later I'm feeling that it's not such a bad thing for me to be in the office to discuss in person, ask and answer questions, and decide about how to move forward.

Will report back results and decisions when I get a chance.

:?
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Postby ssmme » Tue Oct 07, 2008 10:18 am

I had my third vaccine today. Nothing really to report only that a different nurse gave me my vaccine and she was more meticulous about the procedure. When giving me the shots she pushed the plunger very slowly and did it over a period of 25-30 seconds in each arm.
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Postby Loobie » Tue Oct 07, 2008 12:00 pm

That was the same way my nurse did it too. He said it was in the procedure to do it that way.
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