TOVAXIN ROLE CALL

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby ewizabeth » Mon Jan 29, 2007 4:33 pm

Anonymous wrote:ewizabeth-- do you think the score they gave you is accurate? After reading some of the posts here, I got very concerned about the scores in this study being potentially inflated. I sure hope that's not the case!


Oh I don't think mine was inflated. :( Matter of fact, I'm afraid that it would go up if I had an even more thorough test. (Such as a day's worth of neuro-psych tests or something...).
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby ewizabeth » Mon Jan 29, 2007 4:41 pm

flipflopper wrote:Ewizabeth, my EDSS score is 3.0. My highest score yet! :( My EDSS has really increased in the last two years. I also really want something effective in the very near future!


Hi Flip,

Well, let's hope this Tovaxin will work well for all of us. I had some relapses here and there while on other treatments, but not like the big ones I had before starting on any treatment. I had some weird thing with my right eye when the neuro was testing them that nobody has noticed before... No signs of ON though. I have residual damage with each relapse, and then little things just seem to get worse over time too.

I hope you have smooth sailing through the rest of the trial. You're closer than me, so keep your chin up! :)
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby IHaveMS-com » Mon Jan 29, 2007 5:00 pm

Hi to all,

If you test positive for MRTCs, they can make vaccine from your blood. Some patient's cells grow much faster than others. I have very fast growing cells. One of the reasons that my study has taken so long to complete was the difficulty in finding patients that could produce the 90 million cells necessary for each injection in the high-dose group.

I saw a chart or a graph of the amount of MRTCs obtained from a bag of blood. It is a very small number from which they must grow an ample supply of cells to make five 40-million dose injections. There are only 1 or 2 MRTCs per 1 million T-cells.

There was one person in my study who had difficulty producing enough cells for the mid-dose. I assume the comment about whether or not Opexa would be able to make vaccine from a particular patient's blood is relative to the growth rate of the cells. If it took a year to expand the cells out to the necessary amount for the vaccine, that would probably exclude the person from being in the study. It would not mean that the company could not make vaccine from the blood given a sufficient amount of time.

I had blood drawn on 12/26/06 for my next series of injections. I was told that it would be about 8 weeks before the vaccine would be ready. A 6-week turn around would be very fast. Most vaccine productions will take 8 to 12 weeks. Even though they told me 8 weeks, I assume it will be 10 weeks before I am back in Houston.

Somewhere a new member who is in the study did an excellent analysis of how MRTCs are found. The data he used was from my original study and since then the company has increased the number of peptides used from 6 to almost 100. They now have the new and improved vaccine. I have updated his analysis with the new information.

The Tovaxin protocol uses an assay to detect myelin reactive T cells (MRTCs) from approximately 100 different peptide fragments over 3 of the major myelin proteins to identify an individual’s MRTC set. The initial screening determines if an individual has circulating MRTC's that react with these myelin peptide fragments (called epitopes). A negative result means that MRTC's could not be detected by the assay. The inability of the test to detect MRTCs may mean that an individual does not have adequate levels of MRTCs to be detected, that interfering substances may have been administered to the individual (such as steroids local and systemic) thereby rendering the MRTCs incapable of being detected in the assay.



Both people with MS and healthy subjects make MRTC's. In people without MS the immune system realizes that those cells are "self reactive" and they are not allowed to expand. In people with MS at certain times and for as yet unknown reasons, these MRTC's are allowed to expand. This often results in a flare-up that may result in a relapse.

This is a link to how your EDSS is determined. http://www.mult-sclerosis.org/expandedd ... scale.html I have always said that the EDSS is a terrible way to measure MS disability. I have a staggered gait and a noticeable tremor. Many people with and EDSS of 3.0 may have no noticeable signs of MS to the casual observer.

According to Wikipedia the phrase "In like Flynn" refers to Errol Flynn's reputation as a womanizer.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby flipflopper » Mon Jan 29, 2007 5:10 pm

That’s very interesting information. Thanks Tim!
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Postby Lyon » Mon Jan 29, 2007 6:42 pm

oo
Last edited by Lyon on Sat May 14, 2011 10:04 am, edited 1 time in total.
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Postby IHaveMS-com » Mon Jan 29, 2007 7:58 pm

Hi Bob,

I would absolutely agree with your comment. I am sure that Opexa is very confident that they will be able to make vaccine for flipflopper and anyone else they draw a bag of blood from. Since anyone going into this or any other study has enough other things to worry about, I would not want to think that someone who has tested positive for MRTCs would be worried about being able to make vaccine.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby flipflopper » Mon Jan 29, 2007 8:55 pm

IHaveMS-com wrote:Hi Bob,

I would absolutely agree with your comment. I am sure that Opexa is very confident that they will be able to make vaccine for flipflopper and anyone else they draw a bag of blood from. Since anyone going into this or any other study has enough other things to worry about, I would not want to think that someone who has tested positive for MRTCs would be worried about being able to make vaccine.




It seemed logical that Opexa wouldn't "invest" in me by paying for an MRI, more neurological exams and by flying in someone to draw a bag of my blood if they didn't have good reasons to believe that they could make a vaccine for me.

Nonetheless, after reading your response, I have to say that I feel much better :)
Last edited by flipflopper on Mon Jan 29, 2007 11:12 pm, edited 1 time in total.
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Postby sh8un » Mon Jan 29, 2007 10:33 pm

Ok...sooooo...if everyone makes MRTC's, then does that mean that if you are making detectable amounts that you are having a relapse or can you still have a relapse and not have any detectable MRTC's. Can it be possible that you would have a relapse but not be able to have enough MRTC's to make a vaccine in time? How many of these MRTC's do you need to have to attack the perfect spot to show signs and symptoms of MS? Still very confused...
NN
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Postby Lyon » Tue Jan 30, 2007 12:24 pm

Hi Neda,
I don't know if he's gone yet but Tim mentioned that he won't be around until the 20th.

In the meantime, can you clarify what you mean by this?
How many of these MRTC's do you need to have to attack the perfect spot to show signs and symptoms of MS?
especially specify what you mean by "the perfect spot".
Thanks, Bob
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Postby sh8un » Tue Jan 30, 2007 7:27 pm

Hi
By "the prefect sppot" I mean the sright spot to cause increase in disability.
NN
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Tovaxin

Postby sandyw » Wed Jan 31, 2007 6:00 pm

I did not make the MRTC's the first time but did the second time. I just recieved the phone call to get another MRI and round of testing so that I can get the vaccine on Feb 28th. I am scared to death. I am afraid that I am making a mistake and will be hurting myself. I have never been on anything but I am feeling MSy when I never used to. I have trigeminal neurolgia, mild. I have burning on the top of my left hand and foot. My head does feel foggy at times and my vision is affected. More so when I get to the end of the day. Any suggestions out there? I am 43 and a mother of two wonderful children. I just want to keep this at bay until the are off to college at least, 5 more years. I wish someone could tell me what to do.

Sandy
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Re: Tovaxin

Postby Lyon » Wed Jan 31, 2007 6:17 pm

sandyw wrote:I wish someone could tell me what to do.
Sandy
Hi Sandy,
Evidently you've done some research into your disease or how could you have known about Tovaxin and had the conviction to enroll in the clinical trial? Evidently at some point you felt you had good reason to enroll and now that the time is approaching you are second guessing what at one point you considered a good decision?

These clinical trials are scarier than most people realize. My wife is also in the Tovaxin trial and we are experiencing nervousness although evidently to a much smaller degree.

No one can tell you what you should do and I doubt that anyone here is willing to try but is there anything less we could do to help?

Deep down what do you want. Someone to talk you into participation or out of it?

Bob
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Postby ewizabeth » Wed Jan 31, 2007 6:26 pm

Hi Sandy,

My doctor thinks this is very safe, even compared to things like Tysabri. Because they are making a vaccine just for you from your blood.

I know it can be scary though. I also have two children, and I'm progressing. If I don't take this, I'll have to take something else. I can't let myself get worse without fighting the disease. I'm hoping that this treatment might someday be able to help my sons or their friends if, heaven forbid, they get diagnosed with MS.

The decision is yours of course. Maybe you could make a list of all the pros and cons. What might happen if you do, or if you don't. I hope that you'll take one of the disease modifying drugs even if you decide against the Tovaxin trial.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby CureOrBust » Thu Feb 01, 2007 1:09 am

are alternative treatments such as statins or nutrirional items out of the question while on the trial, by the trial?

I am not on the trial, and never limit myself to a single course of action against my MS.

and I think we have a new name for the list in the first post. welcome.
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Postby CureOrBust » Thu Feb 01, 2007 2:10 am

sh8un wrote:Ok...sooooo...if everyone makes MRTC's, then does that mean that if you are making detectable amounts that you are having a relapse or can you still have a relapse and not have any detectable MRTC's.
I dont know about having a relapse without MRTC's. However, from my understanding of MS its the combination of MRTC's and a permeable BBB that causes a relapse. So I would guess you could make a heap of MRTC's, and if they dont get into your CNS, you wont have a relapse.
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