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finally OUT part 1
Posted: Tue Mar 03, 2009 5:20 pm
by Lars
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
Posted: Wed Mar 04, 2009 3:46 am
by Loobie
That sucks Lars, I hope you get some resolution, but you have to be pissed.
Posted: Wed Mar 04, 2009 8:07 am
by ssmme
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
Posted: Wed Mar 04, 2009 8:44 am
by Lars
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!
Posted: Wed Mar 04, 2009 9:34 am
by patientx
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.
Posted: Wed Mar 04, 2009 9:45 am
by ssmme
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
Posted: Thu Mar 05, 2009 8:02 am
by Lars
Marcia,
Did you ever take any of the crabs, that seems to be the "in" for Care 11
Lars
Posted: Thu Mar 05, 2009 9:41 am
by ssmme
never
Posted: Thu Mar 05, 2009 8:18 pm
by Lars
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
Posted: Fri Mar 06, 2009 12:56 pm
by Lars
Marcia,
Could I burden you one more time for your clinic's phone #?
Be Well,
Lars