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ThisIsMS.com :: View topic - Tovaxin Open Label Extension Schedules
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Tovaxin Open Label Extension Schedules
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ssmme
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Joined: Sep 23, 2007
Posts: 160
Location: Lexington, KY

PostPosted: Thu Aug 28, 2008 7:30 am    Post subject: Reply with quote

Bob I'm so sorry. It's like road block after road block. Hopefully it won't lead to a dead end. Geez! You would think that a half pint would still allow them to get a bunch of cells. I wish Jaime better luck if there has to be another stick.

Marcia
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DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
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JanethePain
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Joined: Jun 14, 2007
Posts: 123
Location: Historical Glendale, OH: Home of the Squirrrels

PostPosted: Thu Aug 28, 2008 8:30 am    Post subject: Reply with quote

Lyon wrote:
I'm not sure what is going to come of the blood draw today. Things started clotting and they were only able to draw 1/2 pint instead of the normal pint.

Jamie called the coordinator, who thought 1/2 pint might be enough but will check with Opexa and will see if the situation is going to result in a re-draw.

We couldn't figure out why they didn't just do a different needle stick and draw the rest, but there must be rules that the entire has to come from the same hole or some such.

Bob


If her blood started clotting in one place, the "message to clot" would have gone all over her system by the time they had Arm # 2 ready for "draining." Crying or Very sad

It's waaaaay past the season (unless you're close to a neato place to get odd odds-and-ends), but if you can load up on some sassafras and hydrate Jamie with the tea, that'll thin her blood for the short term!

Now I want a cuppa!

GOOD LUCK and keep us posted!
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Lyon
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Joined: May 04, 2006
Posts: 3371
Location: Mid-Michigan

PostPosted: Thu Aug 28, 2008 2:33 pm    Post subject: Reply with quote

Thanks for the sympathy and info Marcia and Jane.

I have a bunch of sassyfras trees out by the road so the tea is do-able. What do you use, the bark or the roots?

Bob
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av8rgirl
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Joined: Apr 04, 2008
Posts: 164

PostPosted: Sun Aug 31, 2008 6:55 pm    Post subject: Reply with quote

I am not so sure about the clotting message Jane. In the past when I have had those huge blood draws, you know the 15 vials done, most times they can only get 5 or 6 vials out of one vein before I start clotting. They just move to the other arm or sometimes even another vein in the same arm and just keep drawing.

I hope the 1/2 pint is enough for the vaccine for Jamie. Seems like it's been one thing or another to hold up the progress.

I leave on my trip to Wales on the 9th, return the 17th, then re-draw number 3 is on the 24th. Hopefully, the time will fly by since I am keeping busy until the next re-draw. These 90-day waiting periods are killing me....
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av8rgirl
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Joined: Apr 04, 2008
Posts: 164

PostPosted: Sun Aug 31, 2008 7:00 pm    Post subject: Reply with quote

Lyon wrote:
Thanks for the sympathy and info Marcia and Jane.

I have a bunch of sassyfras trees out by the road so the tea is do-able. What do you use, the bark or the roots?

Bob


Use the roots of young shoots.

http://www.fw.vt.edu/dendro/forsite/rodney/rodney1.htm
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Lars
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Joined: Mar 22, 2007
Posts: 273
Location: Durango, Co

PostPosted: Mon Sep 01, 2008 8:35 am    Post subject: Reply with quote

Bob and Jamie,
I too hope they were able to get enough blood for your lab work. I have, on occasion had trouble producing enough blood for the clinical draws (seem to be ok with the procurement draws) and was told by my nurse on those occasions that she must be in a vein close to a valve. I had never heard of such a thing but she assures me it is true. Like av8ergrl, they move to a new spot and finish the draw. Bob, it must be as you suspect that moving to a new vein to finish the procurement is against protocol or ? Hang in there!
Lars
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flipflopper
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Joined: Nov 10, 2005
Posts: 127

PostPosted: Mon Sep 01, 2008 1:02 pm    Post subject: Reply with quote

Bob, I really hope that they can make a vaccine for Jamie! I guess everything is moving along for everyone else. Av8rgirl, I hope you have a great trip and I wish you the best of luck on your next appointment!


Here's my update. I had my last appointment of the phase IIb trial during the first week of May and I tested positive. After, I was told that my procurement visit would take place in the next 2 weeks every two weeks for months!



After being scared of making plans during the last 4 months (and not making any travel plans for all this time), I got a call last week telling me that my appointment would be 2 days later. Now, I had my procurement visit.


Last edited by flipflopper on Fri Oct 03, 2008 3:37 pm; edited 1 time in total
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Loobie
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Joined: Sep 12, 2006
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Location: Dayton, Ohio USA

PostPosted: Mon Sep 01, 2008 5:33 pm    Post subject: Reply with quote

Bob,

Thinking about you and Jamie. I hope she gets that worked out! One thing that I ALWAYS make it a point to do is ask for the big needles. Now I don'tknow if that was something I could do for the bag, but I always ask for that for the tubes. Maybe they have a bigger needle for a bag also? Not sure, but it sure makes the process go much faster during all the tubes. Don't know if that would really help if you were clotting since there probably isn't a big enough needle if you are clotting. Anyway, good luck and maybe ask about the needle size and see if they've been using the tiny ones.
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Lyon
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Joined: May 04, 2006
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Location: Mid-Michigan

PostPosted: Mon Sep 01, 2008 6:05 pm    Post subject: Reply with quote

Thanks ff and Lew,
I wasn't in the room but Jamie still insists that the people at the blood place had no clue what they were doing. According to her they kept opening some valve and exposing her blood to the air and that's why it clotted prematurely.

To be honest, the trial coordinators have got drawing her blood down to a science but there must be some legal or protocol reason that an independent company draws the blood in this situation.

Bob
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Sweetyhide
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Joined: Jul 21, 2004
Posts: 42

PostPosted: Mon Sep 08, 2008 12:29 pm    Post subject: Reply with quote

Just an update:
My 3rd injection is Sept. 30th
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TWG
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Joined: Jul 09, 2007
Posts: 52

PostPosted: Thu Sep 11, 2008 6:54 am    Post subject: Reply with quote

Got a call yesterday saying my vaccine is ready. I'm scheduled to receive my first vaccine on 10/10/08.
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Lyon
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Joined: May 04, 2006
Posts: 3371
Location: Mid-Michigan

PostPosted: Thu Sep 11, 2008 2:08 pm    Post subject: Reply with quote

Thanks for the info TWG. Still haven't heard whether half a pint is enough for Opexa to do what they need to do and I imagine we're a long ways from hearing when her first dose of the extension is going to be.

Bob
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Lars
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Joined: Mar 22, 2007
Posts: 273
Location: Durango, Co

PostPosted: Fri Sep 12, 2008 10:25 am    Post subject: Reply with quote

TWG,
Yeehaaa!!!!
Lars
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TWG
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Joined: Jul 09, 2007
Posts: 52

PostPosted: Tue Sep 16, 2008 12:10 pm    Post subject: Reply with quote

Was scheduled to receive my first phase IIb shot 10/10/07, however, I just received this e-mail from my trial coordinator.

"Opexa was caught in the Ike nightmare and is out of power, so they are suspending all vaccine production and procurements at this time (not that they could do it anyway with the power out). So, we’ll need to cancel your October appointment. I’ll get back to you when they give me more information.

Sorry for the delay but can’t do much about the weather.

Regards,"

Will keep all updated to when I get rescheduled.
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Lyon
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Joined: May 04, 2006
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Location: Mid-Michigan

PostPosted: Tue Sep 16, 2008 12:28 pm    Post subject: Reply with quote

TWG,

I'm sorry, thanks for the news, even though it kind of totally sucks and raises a lot of questions.

I guess I'm kind of surprised that a lab which is doing such expensive and important work doesn't have generators which automatically kick on when the power goes off and just what the real extent of this situation is going to be?

Bob
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