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hmtucker
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Joined: Nov 29, 2006
Posts: 67
Location: Versailles, Kentucky
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 Posted: Mon Jul 07, 2008 3:09 pm Post subject: Who's next for the 100 Day (+) Club? |
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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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av8rgirl
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Joined: Apr 04, 2008
Posts: 97
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| Posted: Mon Jul 07, 2008 9:21 pm Post subject: |
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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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Sweetyhide
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Joined: Jul 21, 2004
Posts: 34
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| Posted: Tue Jul 08, 2008 3:21 am Post subject: |
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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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~Sweety
Peace, Love and Potato Salad |
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av8rgirl
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Joined: Apr 04, 2008
Posts: 97
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| Posted: Tue Jul 08, 2008 8:30 am Post subject: |
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| 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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hmtucker
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Joined: Nov 29, 2006
Posts: 67
Location: Versailles, Kentucky
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| Posted: Tue Jul 08, 2008 3:16 pm Post subject: |
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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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TWG
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Joined: Jul 09, 2007
Posts: 33
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| Posted: Tue Jul 08, 2008 3:48 pm Post subject: |
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• 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]
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Diagnosed with MS in Feb. 14 2000. One of the IIb trial guinea pigs. |
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Lyon
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Joined: May 04, 2006
Posts: 3135
Location: Mid-Michigan
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| Posted: Tue Jul 08, 2008 5:16 pm Post subject: |
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At this point it's uncertain when my wife will be in the running for the 100 day club. The Michigan trial coordinator called on 6/20/08 to say that mrtc's weren't detected in my wife's blood and therefore vaccine couldn't be made.
Per protocol her blood will be retested for mrtc's every 3 months.
Although that particular situation is one hoped to come from the Tovaxin trials (induce/entice the body to stop producing mrtc's) it's kind of an eerie/uncomfortable situation to have waited all that time for the real thing, only to find that she doesn't need it/can't have it.
I'll post when/if she starts producing mrtc's again, but Tim has mentioned in the past that a few people treated in earlier trials have gone for many years without producing detectable mrtc's and have yet to need/be retreated.
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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flipflopper
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Joined: Nov 10, 2005
Posts: 113
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| Posted: Tue Jul 08, 2008 8:03 pm Post subject: |
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| 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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hmtucker
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Joined: Nov 29, 2006
Posts: 67
Location: Versailles, Kentucky
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| Posted: Wed Jul 09, 2008 8:18 am Post subject: |
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| 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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TWG
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Joined: Jul 09, 2007
Posts: 33
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| Posted: Wed Jul 09, 2008 10:09 am Post subject: |
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• 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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Diagnosed with MS in Feb. 14 2000. One of the IIb trial guinea pigs. |
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Lyon
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Joined: May 04, 2006
Posts: 3135
Location: Mid-Michigan
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| Posted: Wed Jul 09, 2008 11:23 am Post subject: |
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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 (6/19/0 showed mrtc's and that they will be calling to schedule the big draw.
I guess I'm one of those people who would whine if they were going to hang me with a new rope because now I'm disappointed that she's back to making mrtcs!
Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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hmtucker
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Joined: Nov 29, 2006
Posts: 67
Location: Versailles, Kentucky
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| Posted: Wed Jul 09, 2008 11:53 am Post subject: |
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| 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 (6/19/0 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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Lars
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Joined: Mar 22, 2007
Posts: 222
Location: Durango, Co
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| Posted: Wed Jul 09, 2008 12:39 pm Post subject: |
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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!
Lars |
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Lyon
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Joined: May 04, 2006
Posts: 3135
Location: Mid-Michigan
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| Posted: Wed Jul 09, 2008 1:13 pm Post subject: |
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| hmtucker wrote: | | 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? |
Hi Mike,
Hopefully I'm up to the task of a logical explanation!
My wife's most recent appointment was on 6/19/08 and at that time blood was drawn and she was told that mrtc's were detected in an earlier blood sample and that she would be called to schedule the "big draw".
The next day she was called and told that due to an error mrtc's really hadn't been detected and that she could go on any treatments of her choosing or she could opt to have her blood tested periodically for mrtc's.
Of course I'm getting all this second hand but it evidently also was discussed that her blood sample from the day before would be checked for mrtc's and might show a different result.
Evidently the call yesterday involved the most recent blood sample and showed mrtc's of ample types and amounts to schedule the big draw.
??Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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hmtucker
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Joined: Nov 29, 2006
Posts: 67
Location: Versailles, Kentucky
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| Posted: Wed Jul 09, 2008 1:32 pm Post subject: |
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| 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?
Mike |
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