TOVAXIN ROLE CALL

IHaveMS-com · Post by **IHaveMS-com** » Thu Jun 14, 2007 9:59 am

Hi to all,

Quote from Jane

So if someone can allay my fears about Tovaxin turning into a cash cow for a Big Shot pharma and not getting where it needs to go, I'll be okay.

Without elaboration, I don't see the company being gobbled up. If you want a possible suitor, look at who Dr. Zhang is working for.

Quote from Jane

That and making sure the doc who got this ball rolling in the first place gets the Nobel Prize for Medicine. At the very least!

My father has already discussed this with him, but he is truly very humble and didn't want any groundwork done on his behalf. If Tovaxin does what everyone hopes it will do, and the rheumatoid arthritis vaccines proves to be as effective as Tovaxin, then we will see.

I think the waitress wants me to leave and my brothers are tired of watching me post, so I will go back on vacation.

leeeeeway · Post by **leeeeeway** » Sun Jun 24, 2007 10:42 am

Hey,
I know that this isn't the prevailing thought regarding profit these days but it seems to me that since there are supposedly only 400,000 of us with MS in the US, the only thing standing between "cash cow" and "who cares" is the revenue. The revenue from these MS drugs is what keeps the pharmas interested and you can bet if Tovaxin makes it that far it will cost a boatload because it is tailored to the individual. And thank heaven because if there wasn't a great deal of money there, they wouldn't bother...

Lee

Lyon · Post by **Lyon** » Sun Jun 24, 2007 11:30 am

Hi Lee,

I agree with what you are saying, not only regarding Opexa and Tovaxin but with all the pharmas. If there wasn't a profit margin there would be a lot less research and potential new treatments.

Regarding Opexa I find it very honorable that their President has already stated that when available it will be priced at around the same price as the crabs. Whether or not that becomes a reality I can't say.

Regarding Opexa specifically? I'd like to see them become solvent enough that they can continue full speed ahead with other work they have planned which include vaccines for some of the other autoimmune diseases.

I don't think people with MS have an inherent disdain for the drug companies but you have to admit that it's really questionable what people on the crabs are getting for their money (or their insurance company's money, in which high costs obviously raise insurance rates) considering that the crabs are over $20,000/year and there is reason to question if they offer efficacy above placebo.

It's one of those deals in which you think you might be getting screwed but you can't prove it any more than those pharmas can prove that you aren't.

Regardless of the fact that you can't prove anything, it makes it impossible to like or trust them.

Bob

Lyon · Post by **Lyon** » Wed Oct 10, 2007 4:12 pm

My wife and I returned home not too long ago from her final injection of this phase of the Tovaxin IIb trial, although this isn't the end of this phase of the IIb.

I'm not 100% sure, but I think her first injection was May 14 or 15 and that time next year will be the beginning of the open label phase.

More appointments 'till then for MRI's and EDSS testing.

Bob

Lars · Post by **Lars** » Mon Oct 15, 2007 2:13 pm

Bob,
Is the open label a year from the first injection, acceptance into the study, signed paperwork, or? I have heard different things. By the way, have you heard of any symptom changes from the masses during the 3 month "hiatus"?
Lars

Lyon · Post by **Lyon** » Mon Oct 15, 2007 3:02 pm

Lars wrote:Is the open label a year from the first injection, acceptance into the study, signed paperwork, or? I have heard different things.

Hi Lars,
I'm almost sure that I mentioned at one point that the year went from the date of first injection and Tim agreed but I would have to try to find that post again. As far as I'm aware, none of the paperwork from the trial specifically mentions this point.

I'll also send a query to the Tovaxin IIb trial website and I'll let you know what I find out.

Lars wrote:By the way, have you heard of any symptom changes from the masses during the 3 month "hiatus"?

I haven't heard a thing, but then again it's unlikely that I would. It's obvious that the clinical trial staff know that I spend time on thisisms so the situation isn't one of them giving me information and instead is one in which they pump me for information regarding what people are saying about it on this site. Last time I could only relay to them that the hiatus has caused it to be very quiet on the Tovaxin thread!

Bob

Loobie · Post by **Loobie** » Mon Oct 15, 2007 3:36 pm

I think it's almost to the day one year. My next appt. is for Nov. 27 and that is the same week I got my first injection last year. They talked about having to schedule me again for another bag of blood between now and then. I almost can't wait. Things just SSUUCCKK right now and I hope this brings some relief. I sound like a broken record, but I can get too dizzy to function normal and weak in the legs with almost no effort. As I tell everyone I'm getting really good at sitting around.

Lyon · Post by **Lyon** » Mon Oct 15, 2007 3:46 pm

Wow, I didn't realize you were so far ahead of my wife.

I'm so excited for you. You deserve the time to go quickly and I'm counting the days!

Thanks for hopping in and letting me know that so that I can quit scouring through the old posts.

Bob

IHaveMS-com · Post by **IHaveMS-com** » Mon Oct 15, 2007 5:30 pm

Hi to all,

My next appt. is for Nov. 27 and that is the same week I got my first injection last year. They talked about having to schedule me again for another bag of blood between now and then.

52 weeks from your fist injection, a bag of blood will be drawn from which new vaccine will be made. I believe there is a plus or minus 7 days allowed. With the new vaccine, everyone in the IIb trial will be receiving their own personalized "real stuff". I believe I have posted this before, but it is worth posting again.

Everyone should be making sure they have an appointment as close to the 52-week anniversary of their first injection. I am not sure what other people have had as a turn around from bag of blood to vaccine being ready, but I assume it is 8 to 12 weeks. At that point everyone would be starting the series of 5 treatments, but this time, everyone is receiving the real thing.

I have wanted to make a post about what to do before giving that bag of blood so that you will have the best vaccine possible, but I have not been able to learn much that would be helpful. I will start a thread about that next week, and people can add other information about masking MRTCs.

Lyon · Post by **Lyon** » Mon Oct 15, 2007 5:32 pm

I haven't even read your post yet.....but I was pretty well convinced we'd hear from you tonight

IHaveMS-com · Post by **IHaveMS-com** » Mon Oct 15, 2007 5:35 pm

I was getting a little cramped in my phone booth.

Lyon · Post by **Lyon** » Mon Oct 15, 2007 5:39 pm

IHaveMS-com wrote:I was getting a little cramped in my phone booth.

I had to pick something up from IGA and during the drive I came up with the plan to ask on the Tovaxin thread if anyone had heard from the "skinny redhead" lately.......to see if that would draw you out

You showed up before I had the chance.
Bob

IHaveMS-com · Post by **IHaveMS-com** » Mon Oct 15, 2007 7:35 pm

According to the height weight charts, I am right to the pound.

hmtucker · Post by **hmtucker** » Tue Oct 16, 2007 5:59 am

So the big question for those of us getting ready for the extension trial is when is the pint of blood drawn for the extension study vaccine? Is it prior to the 52 week mark or at the 52 week mark? At my 28 week visit a couple of weeks ago I asked these questions and the answer I got was that Opexa had not told them/didn't know when the pint would be drawn because the final protocol for the extension study was not in place yet. Lew's post indicates that his trial center wants him to schedule a blood draw before the 52 week mark. On the other hand, Tim indicates that the blood draw is at the 52 week mark. So, does anybody have the real and final word from Opexa?

Mike

IHaveMS-com · Post by **IHaveMS-com** » Tue Oct 16, 2007 6:27 am

Is it prior to the 52 week mark or at the 52 week mark?

It should be at the 52-week mark. I don't think it can be any earlier because the study was designed for 52 weeks.