Who's next for the 100 Day (+) Club?

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Who's next for the 100 Day (+) Club?

Postby hmtucker » Mon Jul 07, 2008 1:09 pm

Howdy all,

I'm curious, who's the next person that will be joining the 100 Day (+) Club? My first injection is July 15 so I won't be eligible until October 23.

Mike
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Postby av8rgirl » Mon Jul 07, 2008 7:21 pm

Congratulations. I just had my first redraw. If I test positive, then comes the procurement draw, then the wait for the vaccine to be made. So I am along ways off...my guess would be September for my first vaccine... :(
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Postby Sweetyhide » Tue Jul 08, 2008 1:21 am

My first injection is July 22nd.
So I am only 7 days behind you.
Which is weird since I was about a month ahead of you in the first part.
I don't know why I keep dwelling on being behind, I guess I am just tired of waiting!
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Postby av8rgirl » Tue Jul 08, 2008 6:30 am

Sweetyhide wrote:My first injection is July 22nd.
So I am only 7 days behind you.
Which is weird since I was about a month ahead of you in the first part.
I don't know why I keep dwelling on being behind, I guess I am just tired of waiting!


Congratulations Sweetyhide!!! Can't wait to see your postings on how you do on the "real stuff."
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Postby hmtucker » Tue Jul 08, 2008 1:16 pm

OK, why don't we put together a list of everyone's schedule? Let me know where you're at in this process and I will compile it into a list and maybe put it up as a "Sticky." As it stands:

Lew-- 5th injection ~July 23
Mike-- 1st injection July 15
Sweetyhide-- 1st injection July 22
Marcia-- 1st injection ~August 15
av8rgirl-- awaiting MRTC results from 2nd blood draw

Who else is in the lineup and where are you at?

Mike
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Postby TWG » Tue Jul 08, 2008 1:48 pm

• 5/27/08 Received notice I’m MRTC positive from 5/9/08 appointment.
• 7/2/08 Opexa called for med. survey, said Life Blood Biologic would call within a week for the big blood draw appointment.

Notice the incredibly long period between MRTC Positive and the call from Opexa (36 days). I still haven't received the call from life blood for a procurement! 42 days and counting...........zzzzzzzzzzz[/i]
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lyon » Tue Jul 08, 2008 3:16 pm

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Postby flipflopper » Tue Jul 08, 2008 6:03 pm

TWG wrote:• 5/27/08 Received notice I’m MRTC positive from 5/9/08 appointment.
• 7/2/08 Opexa called for med. survey, said Life Blood Biologic would call within a week for the big blood draw appointment.

Notice the incredibly long period between MRTC Positive and the call from Opexa (36 days). I still haven't received the call from life blood for a procurement! 42 days and counting...........zzzzzzzzzzz





TWG, I was wondering if you had your procurement visit. I guess you are just like me....you are still waiting!


My last appointment for the phase IIb trial was 5/5/08. I received an e-mail from my trial coordinator on 6/2/08 telling me that my information had been faxed to Opexa and that Lifeblood will be contacting me shortly.


I got a call from Lifeblood on 6/10/08 and I answered the questionnaire by phone and then I was asked for my availability in the next two weeks to have my procurement visit.


However, when he saw that it would be better for me if he could come to me instead of me going to my trial site (I live far from my trial site) he offered to see if he could make the necessary arrangements to come here (which is great!). That is what is being done now and I think this is what is causing the delay. I have not had my procurement visit yet. I keep being told that it is going to happen "very soon" but it still hasn't happened yet...
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Postby hmtucker » Wed Jul 09, 2008 6:18 am

TWG wrote:I still haven't received the call from life blood for a procurement! 42 days and counting...........zzzzzzzzzzz[/i]


You are very patient! I would call and leave a message for Shannon at Opexa (281-272-9331 x3405) daily to let her know that you need to be scheduled ASAP! For better or worse, calls to Shannon usually results in action and information.

Mike [/list]
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Postby TWG » Wed Jul 09, 2008 8:09 am

• 7/2/08 Opexa called for med. survey.

My site coordinator made this happen through Opexa. Seems summer vacations, MS conferences etc. caused delays all around. I'm hoping life blood biological doesn't have any summer time delays as well. I'm more than ready to get started!!
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Postby Lyon » Wed Jul 09, 2008 9:23 am

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Postby hmtucker » Wed Jul 09, 2008 9:53 am

Lyon wrote:In an odd quirk of fate, before I even typed my last posting the trial coordinator called my wife yesterday to make her aware that the blood sample taken at her last appointment (6/19/08) showed mrtc's and that they will be calling to schedule the big draw.


Bob,

Is this a John Kerry moment here.... "there were no MRTCs before there were MRTCs?" What happened between when you were called on 6/20 with the report of no MRTCs and the call today with the report of she's making MRTCs and you need to schedule a procurement?

Mike
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Postby Lars » Wed Jul 09, 2008 10:39 am

Mike,
For your list; Lars 1st extension visit and MRTC blood draw July 2, 2008.
Awaiting results.
By the way, besides a big spike in my EDSS, I may have single-handedly skewed the research data from the 11b trial. I had misunderstood the Pasat (or whatever the hell it's called) test and apparently did it wrong for a year. My coordinator gave me the last test and thought I was an idiot (I guess my nurse assumed I was too and decided it wasn't worth discussing). After discussing my misunderstanding, I re-took it and missed 1 answer. It was much easier the right way than the way I had invented. So I have gone from no answers right for a year to nearly all answers right. I'm sure Opexa is wondering what I'm on!
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Postby Lyon » Wed Jul 09, 2008 11:13 am

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Postby hmtucker » Wed Jul 09, 2008 11:32 am

Lyon wrote:Evidently the call yesterday involved the most recent blood sample and showed mrtc's of ample types and amounts to schedule the big draw.


OOOHHHH! That makes sense. That's interesting that your wife's research clinic knew the MRTC test results from her previous visits. I wonder if asked, if my clinic will share my MRTC results with me?

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