Tovaxin Update
 

I have officially finished Phase IIb - double blind phase of the Tovaxin clincial trial today. For those of you who have known me for awhile, can you believe it's been a year?

I spent the day at the hospital today getting my blood drawn (oh Taffy, don't look!), MRI, complete physical, neuro exam and then I signed the consent forms for entering Phase III, OLTerms, or Open Label Terms study.

I will know in two weeks if I am still producing those Myelin Reative T-cells so they can make the vaccine. This time I will know if I get the real stuff and not placebo.

They won't unblind us until sometime in November when all 150 of us have officially completed the entire trial. All 150 of us have been dosed, but some have not completed the observation portion of the trial.

That's what I know so far. There have been no adverse events reported in Phase I or II and the drug has been in the system since 1991.

YAY!!!

It IS hard to believe it's been a year! Bravo to you and thank you for your being in this study. May we all benefit from what you have done, but especially YOU!! You deserve it! :hug::hug:

I know that there has been a lid on too much communication about the trial (for good reason, I suspect), but when are you permitted to talk more about the trial, Cheryl? I've been curious about some things . . .

Cherie

Cherie

There are some things that I can answer, and some I cannot. A lot of the study results are being presented at the AAN Conference.

I do not know if I was receiving placebo or real drug. That is one thing for sure I can answer.

Have you heard from Sweetyhide lately? Did she get into the OLTerms study?

I'm looking forward to the AAN Conference information, for learning more about Tovaxin, and to see how the LDN trials panned out too. I have had a good feeling about Tovaxin from the get-go, and really hope the trial results are positive.

Sweety is doing pretty good. She doesn't know whether she was on the real thing or not either, but I think she suspects she wasn't. She made improvements overall, but I think this may have had more to do with Copaxone not agreeing with her (and getting off of it). Who knows though. :cool:

Yes, she has been accepted in the next part of the process, but has recently come down with a cold/virus so I think her first "for sure/real" treatment might have been delayed. I'll see if she can come on and update you herself (she is a member here, but haven't seen her post here in a while).

Well, I'll leave my questions till after the AAN meeting, as you will likely have more freedom to decipher the information at that time . . . . :D

Cherie

Wow Cheryl, that went by fast! You're such a trooper for all you've gone through for this trial! :hug: I hope you and all the other Tovaxin patients have great results!

Thank you for what you have done! Now on to Phase 3!

(You are suppose to warn me first....not mention the BD thing first....:thud:

(Guess who was supposed to get her "B" checked and has not done that yet?)
(Anyone what to watch me faint?):thud:

Thank you FG!

I am happy to hear that Sweetyhide has been accepted in the Phase III. I haven't seen her post either and tried finding her elsewhere but she's disappeared!

I warned you Taffy...:p

And another thing....GO to the DOC otherwise I will be back here shortly and drag your scraggly bee-hind in there myself!!! :D

Hey Av8rgirl!
I didn't disappear, I was hiding! ;)
Actually I lurk out at ThisIsMs. They have the most active Tovaxin discussions.

I did get accepted into the extenstion. Heard back that my MRTC's are still alive and kicking. Just waiting on them to schedule my blood draw and hoping this cold is gone by then. I have had a few delays, mostly due to paperwork.
I should have already had my first dose by this month. Now I am looking at maybe July when my first dose is ready. :rolleyes:

I am still keeping my blog. It's much more active now that things are happening.
http://360.yahoo.com/sweetyhide

http://members.aol.com/sweetyhide2/smileys/1.gif
Here's to us lab rats and the hard work over with!
Now on to the good cocktails!

You warned me after the fact FG!:mad::D

And if I take that script in the "B" suckers....

I will start laughing, sweating, and then....possibly lights out...that's with the first tube.

How many do they get out of you?

(closing eyes)

Ok.....I will brave up....

I don't want taffy to miss this so I put it in big bold type...



13

That many FG?

:eek::holysheep::mfr_wha::Sick::shocked::sorry::

You are so brave!

I know! Next time...have them do one more and I will give it to my Dr....:D

Watch it FG; Twippy will have you piddling in her speciman cup next.

http://dl5.glitter-graphics.net/pub/...u72nw08pp0.gif

Good Idea Dm! FG? :D

Oh, by the by...what type of music do you like to listen to? You could also lay on that nice little bed, put a soft towel over your eyes, listen to some tunes...say for um, 45 minutes about.

What do you say? Buddy old pal? Are you a go?

Cheryl, you are such a trooper! I really admire your dedication cause I know you were sick for an extended period a couple of months ago. Good for you!

It will be very interesting to see if your skinny little bod is complying and producing those Myelin-reactive T-cells. We're all pulling for you!

Gee Twappy...I pee in a cup too and I also have an MRI with and without contrast. But I don't listen to no stinkin' music while I have my MRI...shoot, I take a nap! They cover me up with a nice warm blankie...and I just close my eyes and have myself a nice little nappy for about 45-50 minutes...:D

:eek:...they let you sleep??? I always go at 7:00 a.m. after a night's work. I end up falling asleep and the woman ALWAYS wakes me up. She says I twitch and move and snore and talk and that it's messing up the MRI!

I forgo the warm blankie, and drink coffee before the MRI. I end up having to pee during the MRI and THEN I have to drive home and try to go to sleep after being exposed to sun and having caffeine running through my veins!

I always ask for some really loud band that I dislike to stay awake too! I think last time it was punk rock...:mad:

Thanks for the offer RW, but FG is already taking that spot.

You wouldn't be interested however in a little x-ray...just squeezes you a bit. Don't take long or nothing. Whatda ya say? Are you in?:D River?....

Um...NOOOOO!

As a well endowed woman, I HATE those squeezies! My parts weren't designed to flatten out or I would have developed them shaped like a shirt box! :p

Well rats!

http://dl10.glitter-graphics.net/pub...odvp0je8zc.jpg

WooHoo, Cheryl..:) Keeping my fingers crossed for you. I hope this is your magic potion. :hug:

ROFLMOA! We went to the pet store today for supplies and the man wanted to know if he could get one of those for the cats!!!:eek:

not funny


i can feed you to the cats

http://texnat.tamu.edu/ranchref/pred...ats/bobcat.jpg

Hey Now! I DENIED HIM! We bought "Midnight Crazy Balls" instead! I did get to pick out a few fish to take home next time we are in town!!!:D

Nice avatar, RW

:D

:p Which one?

whatever...:p

Sorry to drag the thread back, but, is Tovaxin indicated only for RRMS?

Here's the link to the clinical trial information regarding the current recruitment for the OLTerms trial opening.

To answer your question, RRMS and CIS.


http://clinicaltrials.gov/ct2/show/N...tovaxin&rank=2

What about in the longer run, Cheryl? Tim (one of the first advocates and volunteers) had PPMS, didn't he, and he seemed to do really well. :confused:

Cherie

He was in the initial testing and I think Tim could answer that a lot better than me.

The trials now are designed for RRMS and CIS as the protocol is approved by the FDA.

As for the longer run, I have no idea. I am just a lab rat...I know nothing...absolutely nothing...seriously. I am not trying to evade your question Cherie. I truly know nothing!

:p:p

I haven't seen Tim around in a couple of years, I don't think. Do you know if he still out and about on the forums?

It's probably the same as all drugs/meds, where people with SPMS and PPMS end up trying it eventually, even without trials backing it. Why not, eh?

I like that someone with PPMS has tried it and he seems to have had considerable success though. It's all good.

Cherie

I thought he was still posting on thisisms, but maybe not.

I heard from Tim he is not PPMS. He did have 1 CD-8 cell in his MRTC set, and CD-8 T-cells are usually associated with PPMS. Since his study had both RRMS and SPMS, how he was classified didn't matter.

I hope that answers your question.

Thanks a lot, Cheryl. He was quite disabled when he started, and saw considerable improvement. Hopefully it wasn't just the "remitting" stage then . . . and was indeed due to the treatment.

I have my fingers and toes crossed on this trial. :)

(I haven't been looking over at that site in years . . . maybe I'll have a look if he is still updating.)

Cherie