Tovaxin Open Label Extension Schedules

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Sweetyhide » Mon Sep 29, 2008 11:09 am

My 3rd injection has been rescheduled to Oct 15th, due to storm.
I also called my coordinator and she had them fax info that I was on Placebo before.

I honestly thought I was, but questioned it when I looked at the past year OVERALL. I did really well, compareable to past years.

Edit!
Coordinator just called. My vaccine is on schedule and has been made so tomorrow is #3!
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Postby av8rgirl » Mon Sep 29, 2008 1:13 pm

Sweetyhide wrote:My 3rd injection has been rescheduled to Oct 15th, due to storm.
I also called my coordinator and she had them fax info that I was on Placebo before.

I honestly thought I was, but questioned it when I looked at the past year OVERALL. I did really well, compareable to past years.

Edit!
Coordinator just called. My vaccine is on schedule and has been made so tomorrow is #3!


Good to hear from you Sweety! At least you know you were on placebo as you suspected.

Glad you are getting your injection as scheduled tomorrow.

I still have not heard anything.... :(
“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 av8rgirl » Tue Sep 30, 2008 11:15 am

I was notified today that I was in the drug group! Coordinator didn't have any other information for me, just that I had been receiving drug, not placebo.

She asked me if if I wanted to continue in the trial and I said yes.

I am now waiting for the results of blood redraw #3!
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Postby TWG » Tue Sep 30, 2008 1:40 pm

av8rgirl; maybe that's why they cannot find MRTC in you!!

I found out today I was on the real tovaxin as well. I was convinced I was on the placebo as I had a nasty relapse between shots 4 and 5. My walking abilities have also diminished.

It was decided to wait until my neurologist can review my MRI's before we consider my next move. As a laymen, maybe it's because I've had MS for 8yrs. Earlier studies were for people that had MS for shorter periods of time, just a hunch.

I'll check back in when my course of action is decided.
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lars » Tue Sep 30, 2008 2:27 pm

Hi All,
Lars has been a placebo patient. Shitty timing, my cell line is ready to produce vaccine and they want an answer. I don't have one.
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Postby Lyon » Tue Sep 30, 2008 2:50 pm

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Last edited by Lyon on Wed Jun 22, 2011 3:35 pm, edited 1 time in total.
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Postby av8rgirl » Tue Sep 30, 2008 4:17 pm

TWG wrote:av8rgirl; maybe that's why they cannot find MRTC in you!!

I found out today I was on the real tovaxin as well. I was convinced I was on the placebo as I had a nasty relapse between shots 4 and 5. My walking abilities have also diminished.

It was decided to wait until my neurologist can review my MRI's before we consider my next move. As a laymen, maybe it's because I've had MS for 8yrs. Earlier studies were for people that had MS for shorter periods of time, just a hunch.

I'll check back in when my course of action is decided.

Gee ya think!!!

I was dx'd in 2001. So, I've had MS, very active I might say, since then. I started the trial in Jan of 2007, first injection in March. I had a nasty exacerbation in August of 2007, just before my last vaccine in September of 2007. I had to beg for IVSM. I was down for almost a month, literally.

I asked my site coordinator about MRI information...here's what I was told:

"Per the sponsor, they are not releasing the study MRI results to the subjects until the final study report has been submitted to the FDA and the manuscripts have been published. As for the MRTC results, that is a proprietary assay used for research purposes and they are not releasing that information either ."

So, I won't be getting any MRI information.
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Postby Lyon » Tue Sep 30, 2008 4:26 pm

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Postby av8rgirl » Tue Sep 30, 2008 4:27 pm

Lyon wrote:
av8rgirl wrote: So, I won't be getting any MRI information.
I guess I wouldn't expect them to make copies of the images but it seems they could enlighten you to noticed trends. You've GOT to have the most user "unfriendly" coordinator in the US!
Bob


Ya think!

:twisted:

And all I asked for was trends...didn't ask for each individual MRI. All I really wanted to know is if I had any new lesions...and that was my answer. Oh well...whatever.
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Postby TWG » Tue Sep 30, 2008 5:23 pm

av8rgirl: I tested positive for MRTC's the first time, bummer, considering I was on the real juice. Still waiting to see what my neurologist recommends. Considering your case, I might have had an epitode <SP> shift !?!? I wonder if Opexa would release that info?
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Postby av8rgirl » Tue Sep 30, 2008 5:57 pm

TWG wrote:av8rgirl: I tested positive for MRTC's the first time, bummer, considering I was on the real juice. Still waiting to see what my neurologist recommends. Considering your case, I might have had an epitode <SP> shift !?!? I wonder if Opexa would release that info?


You know what, I wouldn't use me as an example. I have been a MS out of the box case since day one! Two doc have presented my case at seminars because I don't fit any "scenario" for treatment. The joke usually is if there are side effects to any drug, I will have them and I am usually in the 1% category for most meds! I kid you not.

I was one of the first people in the world to be seriously allergic to Zantac! GSK sent one of their top reps out to test me b/c NO ONE is allergic to Zantac. Well, I am. It damn near killed me...one tablet.

I hope you get some information.
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Postby Lyon » Tue Sep 30, 2008 6:01 pm

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Postby hmtucker » Wed Oct 01, 2008 2:35 pm

Lyon wrote:As long as there can be nothing but gross speculation at this point, I have to wonder if there might not be an abundance of different MS epitope relationships, but that they vary greatly in importance and that maybe, just maybe by fate or design, the original treatments were aimed at the most important.

Considering treatment dose is still 45-50 million MAYBE the additional strains being put to use since then don't serve much more purpose than to "water down" what had been the optimum dose in previous formulations.


Bob,

Let me see if I can clear up your idea of epitopes and how they relate to the Tovaxin protocol. An epitope is a science nerd term for a small part (usually 7 to 10 amino acids) of a protein that an antibody or T-cell recognizes and binds to.

Now, let's think of a hypothetical situation. Let's say that you have a bunch of differently colored balloons. When you roll the balloons across a big matt with special colored tape each balloon will only stick to the special tape that is the same color, i.e. red balloons only stick to red tape. So, if your matt only has red tape on it and you roll all of the differently colored balloons across the matt you will only trap the red balloons. Now you put a lot of different colors of the special tape on the matt and when you roll the differently colored balloons across the matt you are going to trap balloons of different colors.

In the Tovaxin protocol think of the MRTCs as the differently colored balloons and the epitopes as the differently colored special tape. Each specific MRTC will only bind to one specific epitope. The more specific epitopes that you present to the total MRTC population the more specific MRTCs you will capture (just like with more colors of tape the more colors of balloons you will trap). Different people have different sets of MRTCs so by increasing the number of different epitopes you increase the probability that you will capture the specific MRTCs that are causing problems for each person that can then be grown up and used as a vaccine.

Clear as mud?

Mike
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Postby Lars » Wed Oct 01, 2008 3:14 pm

Mike,
Thanks, that made sense and I have an overwhelming urge to go to a Carnival.
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Postby Aggie03 » Wed Oct 01, 2008 8:15 pm

Well, I found out at the end of last week from my previous site coordinator that I was on the real thing. I think that it is funny how I haven't heard from my current site coordinator at all, but she has not shown much compassion or has cared much since I've been going there. It also has seemed that she doesn't want to be too forthcoming with info, my belief is that is because she works for the lead evaluator.

Anyway, I have been doing really well and am going to continue with the study. I have only had very minor things come up and at my previous site we did not consider them major relapses. I hope they do release the MRI findings soon and tell us something. It has sucked being in the blind for so long not knowing what is going on.

I still miss my old site in Colorado.


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