Tovaxin Open Label Extension Schedules

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby ssmme » Thu Aug 28, 2008 6:30 am

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.

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Postby JanethePain » Thu Aug 28, 2008 7:30 am

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." :cry:

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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Postby Lyon » Thu Aug 28, 2008 1:33 pm

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Postby av8rgirl » Sun Aug 31, 2008 5:55 pm

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....
“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 av8rgirl » Sun Aug 31, 2008 6:00 pm

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
“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 Lars » Mon Sep 01, 2008 7:35 am

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!
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Postby flipflopper » Mon Sep 01, 2008 12:02 pm

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.
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Postby Loobie » Mon Sep 01, 2008 4:33 pm

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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Postby Lyon » Mon Sep 01, 2008 5:05 pm

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Postby Sweetyhide » Mon Sep 08, 2008 11:29 am

Just an update:
My 3rd injection is Sept. 30th
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Postby TWG » Thu Sep 11, 2008 5:54 am

Got a call yesterday saying my vaccine is ready. I'm scheduled to receive my first vaccine on 10/10/08.
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lyon » Thu Sep 11, 2008 1:08 pm

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Postby Lars » Fri Sep 12, 2008 9:25 am

TWG,
Yeehaaa!!!!
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Postby TWG » Tue Sep 16, 2008 11:10 am

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.
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lyon » Tue Sep 16, 2008 11:28 am

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