Av8rgirl's results on Tovaxin - Phase IIb

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Thu Oct 23, 2008 4:23 pm

patrickm wrote:
av8rgirl wrote:I feel cheated and deprived. I wanna see mine!


that would be because you have been. Wanna come to my next appointment and look at mine? At least it's something. ;-)


Since I've met your neuro personally, do you think he'd mind?

I've actually met several of the clinical trial docs due to my association with the FDA and NMSS.

Still waiting on a response from mine re: treating my current relapse....
“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 » Thu Oct 23, 2008 6:15 pm

av8rgirl wrote:
Since I've met your neuro personally, do you think he'd mind?


I'm not sure about letting somebody else from the study in. On the other hand, since we're not blinded anymore, what difference would it make?

Still waiting on a response from mine re: treating my current relapse....


let us know! and what happens when you tell them that others are getting to see their results now that we're open label?

p
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Postby av8rgirl » Fri Oct 24, 2008 2:51 pm

patrickm wrote:
av8rgirl wrote:
Since I've met your neuro personally, do you think he'd mind?


I'm not sure about letting somebody else from the study in. On the other hand, since we're not blinded anymore, what difference would it make?

Still waiting on a response from mine re: treating my current relapse....


let us know! and what happens when you tell them that others are getting to see their results now that we're open label?

p


When I mentioned that, here's what I was told:

OPEXA sent me this information re your MRI's and MRTC.
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 .

I was told that both sets of study data were paid for by Opexa and are not required for standard of care.
Soooo, guess that's your answer. Sorry it couldn't have been more.


Soooo, you can read the between the lines as well as I can! In addition, any time I mention that I get information from other sources, I am told that I am not supposed to interact in any way with other trial patients...

Soooooo.....I am not here.


8O
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Postby patrickm » Fri Oct 24, 2008 8:01 pm

errmmmm, WTFrak?

They seem by the book at Wynn's. Double and triple check...dot every i and cross every t. even check my driver's license to make sure I'm me and I have to read my labels to verify I'm getting what I'm supposed to be getting. Took copies of my label supplements.

I can understand the blood work, but the MRIs make no sense and no difference! I wasn't offered copies or anything, but dang!

wow. I'm really sorry.
p
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Postby av8rgirl » Fri Oct 24, 2008 9:59 pm

patrickm wrote:errmmmm, WTFrak?

They seem by the book at Wynn's. Double and triple check...dot every i and cross every t. even check my driver's license to make sure I'm me and I have to read my labels to verify I'm getting what I'm supposed to be getting. Took copies of my label supplements.

I can understand the blood work, but the MRIs make no sense and no difference! I wasn't offered copies or anything, but dang!

wow. I'm really sorry.
p


I know he does everything by the book. Like I said, I've met him. And know him from the Tysabri clinical trials. He was the PI for for friends trial when she was in the Tysabri/Avonex trial...sooooo....ayup! I don't get it.

But...that's life.

He still hasn't returned my neuro's phone call re: this relapse and treatment. I am getting worse.
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Postby patrickm » Sat Oct 25, 2008 8:58 pm

Super sorry to hear that! Plz keep us posted and I'll think happy, anti-inflammatory thoughts!
8)
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Postby av8rgirl » Mon Oct 27, 2008 3:43 pm

Now I have a cold. Which just adds to the problems.

What next?

New site coordinator, well, not new, return of #3.
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Postby av8rgirl » Tue Oct 28, 2008 6:28 pm

av8rgirl wrote:Now I have a cold. Which just adds to the problems.

What next?

New site coordinator, well, not new, return of #3.


I got a tidbit of information today. My neuro found out from clinical trial neuro that brain MRI shows no progression. Good NEWS!!!

I am going for a spine MRI, no steroids, and I started on Lyrica today for the leg pain. It only took a week to get all of this going.

Cold is much worse.
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