Tovaxin Open Label Extension Schedules

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Wed Sep 24, 2008 7:39 pm

Lyon wrote:
av8rgirl wrote:If I am once again negative then I wait another 90 days to be retested, if I am positive then I get the procurement visit scheduled!!!
It will be nice to see the positive result!
Bob


Yes, it will be nice to have a positive .... it only took the tech 4 sticks to get those 13 tubes of blood out of me today! I was happy to see the new consent forms with fewer blood draws in the new trial! Thank YOU whoever!!
“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 TWG » Thu Sep 25, 2008 1:05 pm

I was originally schedule to receive my first OLTERMS shot on 10/18/08, but hurricane IKE delayed that. I am now scheduled to receive my first shot Friday 10/24/08 at 1:30pm. I am continuing with this study, going to ride the bull till the buzzer rings!
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lyon » Thu Sep 25, 2008 1:50 pm

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Last edited by Lyon on Wed Jun 22, 2011 3:34 pm, edited 1 time in total.
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Postby Lars » Thu Sep 25, 2008 3:54 pm

TWG,
I really admire your "mission to complete", I have the utmost respect. And as a professional Bull rider for some 20 + years, I really appreciate the "ride for 8 attitude" and metaphor.
Good thoughts your way,
Lars
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Postby flipflopper » Fri Sep 26, 2008 9:34 am

I have been taking a break from visiting this site since the last time I posted. Mike, could you please remove me from this list?


To everyone else who was in this trial, regardless of what you decide to do next, I wish you the best of luck

FF
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Postby Lyon » Fri Sep 26, 2008 1:34 pm

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Postby ssmme » Fri Sep 26, 2008 2:38 pm

I received a phone call from my IIb trial site coordinator. She told me that I was on placebo during the trial and wondered if the injections (I've had 2) in the extension study were doing anything. I let her know that I don't notice any difference yet. No better but no new symptoms. Maybe there will be a difference after the next shot on 10/7. The 100 day club is still about 6 weeks off.
My coordinator said that Opexa will need to complete another stage 2 trial before moving into stage 3. She feels that Tovaxin may turn out to be a great treatment for the newly dx'd with RRMS and especially for those newly dx'd at a young age.
I told her I would continue in the extension study to see myself through the series of injections especially since I was on placebo for all that time and would make a decision at that point on what my next step will be.
Have any of you all heard similar info from your trial sites?

Marcia
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Postby flipflopper » Fri Sep 26, 2008 3:36 pm

Thanks Bob! I have nothing to add for now. Marcia, I also heard from my trial coordinator today. I was on Tovaxin during the trial
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Postby av8rgirl » Fri Sep 26, 2008 3:37 pm

ssmme wrote:I received a phone call from my IIb trial site coordinator. She told me that I was on placebo during the trial and wondered if the injections (I've had 2) in the extension study were doing anything. I let her know that I don't notice any difference yet. No better but no new symptoms. Maybe there will be a difference after the next shot on 10/7. The 100 day club is still about 6 weeks off.
My coordinator said that Opexa will need to complete another stage 2 trial before moving into stage 3. She feels that Tovaxin may turn out to be a great treatment for the newly dx'd with RRMS and especially for those newly dx'd at a young age.
I told her I would continue in the extension study to see myself through the series of injections especially since I was on placebo for all that time and would make a decision at that point on what my next step will be.
Have any of you all heard similar info from your trial sites?

Marcia


Thanks for the update Marcia!

I hope the news is traveling West fast! I've not heard a word except that I have my next appt scheduled if I don't convert. It's Jan 7th. Otherwise, status quo.
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Postby Ant148 » Fri Sep 26, 2008 3:48 pm

turns out i was receiving tovaxin the whole time in the IIb. got worse, mri and otherwise. it's over, johnny, it's over...
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Postby Lyon » Fri Sep 26, 2008 3:52 pm

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Last edited by Lyon on Wed Jun 22, 2011 3:34 pm, edited 1 time in total.
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Postby av8rgirl » Fri Sep 26, 2008 3:59 pm

Ant148 wrote:turns out i was receiving tovaxin the whole time in the IIb. got worse, mri and otherwise. it's over, johnny, it's over...


You received MRI results as well?
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Postby Ant148 » Fri Sep 26, 2008 7:45 pm

i received the WHOLE shebang straight from my trial site neurologist; mri results, the placebo or drug revelation, and a strong recommendation to stop before things get even worse. this came on the same day Scott called me to schedule a procurement!!! to say i was shell-shocked by all this would be an understatement of the century. i'm still trying to process everything and decide how to proceed forward in treating my damn ms. sometimes life is real funny that way...
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Postby Loobie » Sat Sep 27, 2008 6:24 am

I already posted my blinded status in another thread. I was on placebo, but have continued to worsen after 5 injections in the extension. My 'exit the trial' appointment is on 10/7.
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Postby av8rgirl » Sat Sep 27, 2008 10:45 am

I never heard anything. Guess the news hasn't reached us clear out here in the boonies yet.... :cry:
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