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Joined: Mar 22, 2007 Posts: 407 Location: Durango, Co
Posted: Tue Sep 15, 2009 7:47 pm Post subject: letter from Opexa
Hey All,
I just received a notice that I have a certified letter from Opexa at the post office. I have to be out of town for 3 or 4 days and can't get by to pick it up. Has anyone else gotten a letter? I'm dying to know what's up. I'll let you know when I am in possession, It's probably a bill!!!! Oh by the way, I haven't made my way down out of the mountains just yet but I found a nice neighbor that occasionally lets me use his Internet service.
Be Well,
Lars
That's funny. We've had a notice for a certified letter in the mailbox for two days and my wife was wondering what it was, although ours didn't say it was from Opexa.
She signed in the wrong place yesterday so the mailman didn't deliver it. She signed correctly today and I put it in the mailbox tonight so we won't have the certified letter until tomorrow PM when I get out of work.
Basically says being sent out all TERMS participants asking if it's OK to share specimen data with third parties for additional research. No private data about you in particular will be shared. You have until 25Sep09 to refuse. I plan to let them use mine. Keep the ball rolling I say. _________________ Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
Joined: Jun 14, 2007 Posts: 193 Location: Historical Glendale, OH: Home of the Squirrrels
Posted: Wed Sep 16, 2009 10:52 am Post subject:
TWG wrote:
Basically says being sent out all TERMS participants asking if it's OK to share specimen data with third parties for additional research. No private data about you in particular will be shared. You have until 25Sep09 to refuse. I plan to let them use mine. Keep the ball rolling I say.
I'm glad y'all started a thread about this because I missed the mail!!! ... got the notice and FORGOT to pick it up yesterday. So I just went to the post office.
Same thing. I wish they'd gone into more detail about just WHAT this wil mean to us!??!?!?!
In just the last couple of days, it looks like that stock is sure recovering. Any thoughts as to WHY this is happening... of course I'm looking for a good omen!
In just the last couple of days, it looks like that stock is sure recovering. Any thoughts as to WHY this is happening... of course I'm looking for a good omen!
Same thing. I wish they'd gone into more detail about just WHAT this wil mean to us!??!?!?!
Sounds like all our thoughts are on the same page.
I was disappointed that the letter wasn't an invitation to re-start the IIb extension but hopefully it's more than wishful thinking on my part to think the letter might be a prelim to that?
Bob
Joined: Jun 14, 2007 Posts: 193 Location: Historical Glendale, OH: Home of the Squirrrels
Posted: Thu Sep 17, 2009 8:15 am Post subject:
Lyon wrote:
JanethePain wrote:
Same thing. I wish they'd gone into more detail about just WHAT this wil mean to us!??!?!?!
Sounds like all our thoughts are on the same page.
I was disappointed that the letter wasn't an invitation to re-start the IIb extension but hopefully it's more than wishful thinking on my part to think the letter might be a prelim to that?
Bob
I thought I posted yesterday afternoon... can't remember what pearl of wisdom I dropped here... or thought I dropped... it's gone now!
One of the blurbs I read awhile back mentioned that the proceeds from that stem cell stuff would be used to plunge ahead full steam with MS stuff. I also remember reading something that they would start up with Phase III.
Now a looooooooong time ago, we had some info that Phase III's parameters would be expanded to include "progressive" patients. Which is as it should be, IMHO.
I just wish Tim would drop back in to catch up with us. His trial phase ended a good eight weeks before ours and I've been wondering how he's managed a year without vaccine. Would the prior time he's been in the study (what was that, a couple of years ahead of us because he was in Phase I?) have given him the "juice" to make it a year?
In short, I want this study back on track and I want it NOW. I am not in the least demanding, by the way. _________________ Jane the Pain
In short, I want this study back on track and I want it NOW. I am not in the least demanding, by the way.
I've never thought so...if that's OK with you....SIR!
I did get a short little email from Tim a week or so ago. He didn't go into detail but said he was doing fine and that he'd get with me later......hasn't yet though.
You did leave us pearl of wisdom yesterday......take your time and look a little closer...........
I received the letter as well. I hope this means that they will be moving forward soon with the study as I would like to get back to some form of treatment. I have not had any treatment since the study ended and have not needed anything.
Keeping my fingers crossed.
Brad
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Sun Sep 20, 2009 4:47 pm Post subject:
I just got my "you have a certified letter" when I was out in California. I plan to pick it up tomorrow. I'm not going to re enter the trial as I voluntarily quit after two relapses on the 'real stuff', but they are welcome to use my information for whatever they need to do. If this is really helping people, especially when dx'd early, then get it to market I say. It was the only med. I took that didn't have the nasty side effects. _________________ http://myhopefuljourneyintoactualmsrecovery.blogspot.com
I hope the recent stent adjustments/improvements offer what nothing else has been able to so far Lew.
It seems that all you have to do is ignore the letter to allow them to use your specimens.
I noticed today that in the Re: they mention "Study Approved by Liberty IRB 5 September 2009" so they do have something in the works in which they might also ask you to fill out a questionnaire about your experience later. I'm not sure how you feel about that?
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Mon Sep 21, 2009 6:39 am Post subject:
I'm down with advancing research no matter what. If this works for some people? bring it on. Hell, I'd take the day off to talk about my experience on it to advance it. Thanks for the surgery well wishes; much better this time as the stent he placed was much lower. The thing I've always thought is this: The "stuff" Tovaxin regulates, and even Campath, which REALLY seems to be working, have maybe found the targets that do the damage and will probably eventually be able to regulate what needs regulated and "push this sucker out" like is the AIDS approach.
My thoughts, and why I've been to Califonia twice, are maybe that by restoring the flow, these things that need regulated just don't misbehave in the first place. So whatever the approach, if it's working for some and giving some relief, I'm in it's corner. I still don't 'trust' anything yet as we all know that relief and "this thing is leaving me alone" have to happen over time. So even as far as the CCSVI and myself are concerned, I'm still holding my cards close as I won't trust anything to be "it" until a long time has passed. I couldn't have said that a while back as I was still feeling pretty good. But now that I'm in the camp where MS affects just about everything, and it does every day, I'll really be able to say with conviction if it's working.
So for me, I don't have interest in getting back in the trial personally since I've already taken other steps whose story still has to play out, but I'll answer any question or fill out any form that they want. Once again, I think that this is showing, like all the pharmacologicals seem to, that if you catch it while it's RR, then you have a much better chance of good change; i.e., not even ever tripping over into progressive. There's more than one way to skin this cat I do believe. I hope I personally have hit on the thing that's causative, but I also hope that stuff like this will give people another opportunity to take a benign acting (no heavy side FX) drug and just never have to deal with it either. So whether it's surgery or stem cells, as long as it's giving people hope and keeping them well, I'm in. It didn't work at all for me, but that could be because I was already progressive. Just thoughts, but the way everyone has viewed my MRI as "unchanged" for so many years now just leads me to believe I was. I mean my one neuro. told me I had seven new lesions one time. My new neuro., viewing the same disk, can't find them. So did he maybe stretch to fill out his roster for Tovaxin since I was so willing? Who knows the answer to that. All I know is that I now have my new neuro. and Dr. Dake both telling me that I don't have any enhancing lesions, "unremarkable MRI", and my old telling me I do/did, so I just don't know about that, but my suspicion was that I was already SP by the time I got the real Tovaxin. _________________ http://myhopefuljourneyintoactualmsrecovery.blogspot.com
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... got the notice and FORGOT to pick it up yesterday. So I just went to the post office.
