Extension blood draw rescheduled!

[ssmme]

Lyon,

I don't know. It seems that we Tovaxin lab rats are concerned we may not make MRTC's this time around for the extension study. If that's the case why can't they make vaccine from our last bag o' blood (It's almost St. Paddy's day )

Marcia

[hmtucker]

Why is it that if they can't currently make vaccine from the new blood draw that they can't continue to make vaccine from our last blood draw. I thought that theoretically they only needed one pint to make a lifetime of vaccine. If they continue to check our blood for our MRTC count it probably won't matter from which batch the vaccine gets made. The number of MRTC's may change but the makeup of the MRTC's doesn't. Am I missing something here?

Marcia,

I can't remember where in some of the reports that Opexa has published but they describe "epitope shift." What this essentially means is that the MRTC profile at time point x can be different than the MRTC profile at time point y. So it is entirely possible that the makeup of the MRTC's does change. That's the beauty of the Tovaxin protocol in that it can adapt to what your immune system is doing right now not what it used to be doing.

Mike

[ssmme]

Thanks Mike. The concept is more lucid to me now. I didn't figure epitope shift into my own logic. I guess that means we're all in suspense until the day they say they could find MRTC's and can schedule us for our big blood draw.

I don't recall reading in any threads that there is anyone that can't have their MRTC's identified this time around. Have you come across anyone who isn't producing for the extension study?

Marcia

[Lyon]

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[patrickm]

Hey.
My understanding is that if you're not making the MRTCs, then you don't actually need the vaccine. That's the whole thing. Also the epitope shift could happen because the previous vaccine beat down the majority of your initial MRTCs and the ones left were missed or in a huge minority on that first draw. Now the majority bad guys are gone and thus the shift. So they'll need to make vaccine that focuses on the remaining MRTCs.

I understand the feeling that you want to be producing MRTCs. It's tied to the same reason that I'm guessing those of us who feel in some way rotten are hoping that we're on placebo so that we may yet feel better thanks to vaccine. If I'm producing MRTCs, whether or not I was on vaccine or placebo, then there's hope that I'll feel better there as well. Who knows if we'll feel better or not on the vaccine but if we don't relapse, I guess that's the thing. At least I keep telling myself and then quickly try to consider the alternatives.

CRABs are roughly only taking 2 bullets out of a 6 bullet cylinder, then spinning and hoping the gun doesn't go off. In Russian Roulette those are HORRIBLE odds if you think about it. Hell, in Vegas those are horrible odds and this is my life.

My struggle is to remember this when I start feeling especially retarded and gelatinous. That's why I signed on and I'm guessing that's true for y'all too.

Hope what I said makes some sense. I'm paraphrasing what I remember from some of Tim's posts.

Ah, blessed sleep.

be well,
p

[ssmme]

I've got another question...once again I apologize about not getting time to just read old threads but I have 4 kids (one going thru puberty and the other 3 are five years old) and not much uninterrupted spare time...Does the immune systems MS illness change as RRMS morphs into SPMS? If we morph during the Tovaxin protocol will Tovaxin stop working on us. Will MRTC's no longer be detectable? Will the vaccine become ineffective? Is this even known or hypothesized about?

Marcia

[Lyon]

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[patrickm]

The picture which goes through my mind in comparing Tovaxin and HDC against the other treatments is of trying to put out an oil well fire. All the other treatments are trying to spray the fire out with a fire hose, while Tovaxin and HDC turn the valve off to the oil supply.

That is a wonderful analogy. I'm gonna use it. I grew up in West Texas so that's something that friends and family should be able to understand. thanks.

Tovaxin = Red Adair

[Lyon]

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[NHE]

That is a wonderful analogy. I'm gonna use it.

Here's my analogy... HDC is like using a bull dozer to weed your garden while Tovaxin is like getting a bunch of gardeners to come in every day in three 8 hour shifts to pick out anything that might resemble a weed.

Here's another analogy that came to me last week... With MS I often feel like I tie a knot at the end of my rope and then hang on. Then the rope stretches! Needless to say, things haven't been going all that great lately.

NHE

[Lyon]

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[hmtucker]

Lew,

Not to bring up a sore subject, but how are things going with your vaccination schedule? Are you going in this week for your first round of shots?

Take care,
Mike

[Loobie]

Hey Mike,

I promise not to go on a rant like last time when you asked this! I literally just got off the phone with my research coordinator. I have not got my schedule for dosing yet. We are now at 81 days (that puts the 69 day thing out) and he said he has heard nothing from Opexa. I am going to be calling Shannon at Opexa after I finish this post. The crazy thing is that now that we are getting very close (I would have to imagine) I am having a mother relapse. And this time everything is bilateral so I can't even use a cane or anything since it's both legs. I can walk about 100 feet and then the tingling starts, another 100 and I'm walking like I have cerabral palsy and lost my crutches. In other words it's getting bad for me right now. I'm sssssoooooo scared because all last year we would put off any intervention because of the Tovaxin dosing schedules. Well right now we are probably only days away and I may need steroids.

My Dr. thinks the 'action' is happening in my thoracic spine, so I had one of those marathon spinal MRI's with and w/out contrast. The reason I called my coordinator was to see if he had heard anything from Opexa. I keep hearing you don't want any NSAIDS before your shot, but that makes me think that actual steroids would be even worse. I started feeling this way a few weeks back and then I sort of stabilized for about a week. Well now it's back with a vengeance and I just don't know what to do. I don't want to sabotage my first dose, but I feel like if we don't take some intervention pretty damn quick, I'm screwed.

I don't know what I'm going to do with all of this. I know my dose is close (I mean it has to be, right?) so part of me says just wait it out. My problem is that during all my waiting around, I'm having progression, and it's fast. I read all of Chris's Johns Hopkins stuff last night and I'm just about ready to take matters in my own hands and go do the Revimmune. There is just no control I have over this process, and since there now is an option that I can initiate and push through I'm right there ready to move. The sounds of silence are driving me f'ing crazy right now. I just can't function in an environment where I'm getting worse and worse and I'm told to just sit on my hands. Maybe if I can get an actual dosing date out of Shannon it will put my mind at ease, but to answer your question specifically, I haven't got dosed yet and haven't got a dosing appointment yet, and it's been 81 days since blood draw. I'll let you know what they tell me at Opexa.

Lew

[hmtucker]

I promise not to go on a rant like last time when you asked this! I literally just got off the phone with my research coordinator. I have not got my schedule for dosing yet. We are now at 81 days (that puts the 69 day thing out) and he said he has heard nothing from Opexa. I am going to be calling Shannon at Opexa after I finish this post. The crazy thing is that now that we are getting very close (I would have to imagine) I am having a mother relapse.

Lew,

I'm sorry to hear that things are going so bad for you right now. Not that it makes things better, but the time that it takes from the big blood draw to vaccination is strongly tied to how fast your MRTC's grow in culture. With some types of cells, the growth rate is very fast and with others it is very slow. I would bet that the growth rate for different peoples MRTC's is very different so the 69 day figure was for a generic batch of MRTC's.

How long did it take from blood draw to vaccination at the beginning of the IIb phase? As I understand it, for everyone who entered the IIb study the viable Tovaxin MRTC vaccine was made and then people were randomized into the real vs. placebo groups. So, how long it took at the beginning of your IIb trial may be an indication of how long it will take for the extension. In my case, it was 14 weeks from the big blood draw to my first round of shots.

Keep us updated,
Mike

[Loobie]

You know I wish I would have kept track of that. I didn't, so maybe me clinging to that 69 days was not the right thing to do. At any rate, it has to be soon. Shannon has not called me back yet, but she did last time, so I'm thinking she will again. My coord. called me back and said that they would still dose me even right after steroids, so that's a positive for me right now. Tovaxin or not, I need to stop the bleeding!