finally OUT part 1

Lars · Post by **Lars** » Tue Mar 03, 2009 5:20 pm

Well the fine folks at Genzyme have given me the boot. I am apparently not treatment naive because of the 28 days I was in the open label with Tovaxin and I am not eligible for Care 2 because I wasn't on treatment??? The clinical Neuro went to bat for me and still, NO. The only thing more frustrating than MS is trying to find a useful treatment for it. I would like to once again thank Opexa (Tovaxin) for all their help in placing the appropriate landmines in my treatment options path.
Peace,
Lars

Loobie · Post by **Loobie** » Wed Mar 04, 2009 3:46 am

That sucks Lars, I hope you get some resolution, but you have to be pissed.

ssmme · Post by **ssmme** » Wed Mar 04, 2009 8:07 am

Lars,
I bet if you made the trek to AIN here in Lexington, KY you'd get right in. The door is open. Come on East.

Marcia

Lars · Post by **Lars** » Wed Mar 04, 2009 8:44 am

Marcia,
AIN? Is that the off label site Mike talked about? Because I was privy to the chain off command avenues that the Neuro here took and I don't think there is anyone higher in the Genzyme world to OK me in the trial. Thanks for your help. Where are you in your treatment time line?
Lars
Wow, I just looked at your post again and saw that your treatment dates are......now. God Bless and good luck!

patientx · Post by **patientx** » Wed Mar 04, 2009 9:34 am

Lars,

That really sucks being in no man's land like that. Sorry things are so screwed up.

Maybe if your neuro is willing to work with you, you could go on one of the CRABs for the required 6 months, then try to get in the Campath trial.

ssmme · Post by **ssmme** » Wed Mar 04, 2009 9:45 am

Lars,

I was treatment naive going into tovaxin. Got placebo then got 4 of 5 injections during the extension study. I got into care MS II. If you came here you'd probably get in if you met other requirements like a documented exacerbation in the last 12 mos. Maybe ultimately it's up to the trial site. Who knows....

Marcia

Lars · Post by **Lars** » Thu Mar 05, 2009 8:02 am

Marcia,
Did you ever take any of the crabs, that seems to be the "in" for Care 11
Lars

ssmme · Post by **ssmme** » Thu Mar 05, 2009 9:41 am

never

Lars · Post by **Lars** » Thu Mar 05, 2009 8:18 pm

Marcia,
The only thing I can come up with is a recollection of a very brief conversation I had with my site when this all started. I believe there are different requirements for private vs. public sites. My site is at the University of New Mexico Hospital and that may explain a lot. I suppose I'll get on the phone again....uhggggg.
Thanks,
Lars

Lars · Post by **Lars** » Fri Mar 06, 2009 12:56 pm

Marcia,
Could I burden you one more time for your clinic's phone #?
Be Well,
Lars