First extension dose today

A board to discuss Tcelna as a treatment for Multiple Sclerosis

First extension dose today

Postby Loobie » Wed Apr 02, 2008 12:27 pm

Well it finally happened. I got my first shots today and pretty much only have one thing to report. I did have a slight shot site reaction. No band-aid ring like Tim. The nurse had to circle "reactive" on the chart they fill out when they check after 5 minutes. It was very slight and it also itched slightly for about a half hour. By the time the hours was up, it was back to normal. Who knows what that means. I know it's the real stuff now so maybe whatever is in it causes a little irritation, but like I said, it was very slight. So nothing really to speak of. I just felt like writing that I had actually received a dose.

I discussed people getting "kicked out". They said that at my site there have been three that quit producing MRTC's and got the boot and my coord. had said that he knows that there are plenty others around the country as well. So maybe Chris's experience wasn't so unique, although with all the participants from his site getting the boot, it still sounds fishy to me, but I digress as Chris said to move on so I will.

Nothing to report. If something comes up, I will post it. I talked at length with my Dr. about Hi-Cy also. My neuro. went to Johns Hopkins and he had lots of input into the whole deal. He was fully aware of the whole thing and after I mentioned Dr. Brodsky, he brought up Dr. Wiener's name from Harvard. I guess he's the guy who came up with the whole idea back in the late '60's. He didn't try to discourage me from it at all. He told me it's my health and no matter what is going on with the trial, I have to do what I think is best. He said he would warn me of anything I wanted to try that was "quacky", but he understands how much I communicate with the MS community and he said if I opt for that he still wants to be "fully in the loop". He said that there were patients that they treated back when it was a new therapy and he said they were the really severe cases. He knew it was "coming back around" and said that if it's being done at JH, he is sure that the aftercare is ten times better with all the new stuff to build you back up.

I can't say I was surprised with his cooperative attitude because he is pretty cool, but I was very glad that he didn't say "you don't need that", or try to discourage me in any way. He did tell me that he knew Cytoxan could be hard on the heart and other things, but he said how I felt was going to be the deciding factor to see if I want the risk. So I was very gladdened by the fact that I don't have a close minded neuro. when it comes to Cytoxan and that he will be in my corner if I go that route.

So hear I sit waiting for the Tovaxin to "work". I know it doesn't treat symptoms and feel like it's "working", but just keeping me from relapsing is going to be something here lately. I have decided that if I have 0 relapses after the third dose, too hang tight and watch Chris's "build up" of his immune system with great interest.

And, yes, the real Tovaxin is cloudy, not crystal clear like what I got last year. The vial did make it look like tea, but after he pulled the drug out, I noticed the vial was slightly tinted, so I think it's more cloudy than anything. At any rate, first extension shots went off without a hitch, so I'll let y'all know if anything changes!

Lew
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Postby TWG » Wed Apr 02, 2008 12:48 pm

Thanks for the update! I wonder why the people where booted for not producing MRTC's, if they where on the real stuff, I would think this was to be expected.
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Postby pvns2005 » Wed Apr 02, 2008 2:38 pm

Remember I did produce MRTC's and they did the blood donation to make the vaccine and waited over a month to drop me so it was something else that got me booted from the trial.

Congrats Lew...
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Postby Terry » Wed Apr 02, 2008 5:16 pm

Congrats, Lew. Maybe the bad days will be behind you now. Keeping my fingers crossed.
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Postby Sweetyhide » Thu Apr 03, 2008 2:08 am

Image
yeah Lew!

Good to hear someone has started and also how it went.
I believe you are the first person to report on the web.
Some of your info is very informative! :wink:

I am waiting for the blood draw schedule. They just called me with all the questions. The lady was sure it would be this month. Then I have to wait for them to make my stuff. This time around is taking forever. I was hoping to have my first dose by this month before all the delays.

Image


PS~Chris, I know you want to move on and I also promised myself that I wouldn't dwell on whatever happened with you, but it's hard not to keep coming up with different reasons why your center let everyone loose.
Knowing that you went as far as the donation and still was booted out doesn't set me at ease since I haven't even reached that far yet.
~Sweety
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Postby Loobie » Thu Apr 03, 2008 2:37 am

Thanks all,

I wasn't going to get too caught up about the "tint" of the drug (thanks Neda), but we had all already had this discussion about what the stuff looks like and how I was told not to look while others were actually told they had to look and sign off. All I can say is I hope someone's theory about MRTC's, their eradication, and the effects it will have on MS is right. I start getting freaked when I think of it that way.

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Postby Lyon » Thu Apr 03, 2008 5:28 am

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Last edited by Lyon on Mon Nov 28, 2011 3:48 pm, edited 1 time in total.
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Postby ssmme » Thu Apr 03, 2008 7:03 am

Loobie,

I'm awaiting the phone call from LifeBlood for the blood draw OR a phone call from my neuro's office telling my I didn't make MRTC's. At the first hint of feeling any improvements please let us know. I'm at least 2 months out at this point.

I'm sending good thoughts your way!

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Postby hmtucker » Thu Apr 03, 2008 9:59 am

ssmme wrote:I'm awaiting the phone call from LifeBlood for the blood draw OR a phone call from my neuro's office telling my I didn't make MRTC's.


Marcia,

It was my understanding from AIN that Opexa would call you directly concerning whether or not they detected MRTC's. So after 3 weeks you still have not heard from anyone about your test results yet?

Mike
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Postby ssmme » Thu Apr 03, 2008 11:44 am

None at all. I'm carrying my cell phone almost constantly here on vacation to make sure I won't miss the anticipated call. It's hard to do when you're near the water almost all day. I guess maybe I should just put the phone down and not think about it. What's the saying...a watched pot never boils.

Thanks for asking,
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Re: First extension dose today

Postby hmtucker » Thu Apr 03, 2008 12:30 pm

Loobie wrote:They said that at my site there have been three that quit producing MRTC's and got the boot and my coord. had said that he knows that there are plenty others around the country as well.


Lew,

Why were people kicked out of the study for not continuing to produce MRTC's? Isn't that the point of the Tovaxin protocol to get people's immune system to the point where all MRTC's are eliminated and no longer detectable? With the blood draw to test for MRTC's for the extension study it was described to me that if they could not detect MRTC's that I would be monitored once every three months for the presence of MRTC's.

Help me I'm confused,
Mike
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Postby Loobie » Thu Apr 03, 2008 2:22 pm

Mike,

I'm a little confused by it too. If you read Chris's post you can see he got the boot even though he produced them. I do think that the point is to, at some point, not be able to detect MRTC's. Maybe it's if they can't detect any and you are still progressing. I just don't know for sure. I will PM Tim and ask if he can help explain. He seems to understand the proposed effect and the relationship to MRTC levels pretty well. I'll PM him and ask him to post his response on here.

On a side note, I did have a mother headache today and was run down. That does happen to me from time to time, so there is no way that I can totally chalk it up to the shot, but the way it went away on it's own after about lunch was surprising. I usually have to take a couple of 800 Motrins (4 hours apart of course) to get those types of headaches to go away, and sometimes it just dulls it out a bit. I didn't take any NSAIDS since I read from Tim to avoid them around your injection time. I believe that it's something you should do with all vaccines, so I was bound and determined not to take any. I didn't and it eventually went away. Like I said, weird, but the headache and fatigue are not weird, so who knows?
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Postby Sweetyhide » Thu Apr 03, 2008 2:58 pm

hmtucker wrote:
ssmme wrote:I'm awaiting the phone call from LifeBlood for the blood draw OR a phone call from my neuro's office telling my I didn't make MRTC's.


Marcia,

It was my understanding from AIN that Opexa would call you directly concerning whether or not they detected MRTC's. So after 3 weeks you still have not heard from anyone about your test results yet?

Mike


I was notified via my trial coordinator.
It also took longer this round for them to let me know than last time.

BTW~ I also was told if I didn't produce the MRTC's that I could retry every 3 months.
~Sweety
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Postby ssmme » Thu Apr 03, 2008 4:24 pm

Sweetyhide,
How long did it take for them to contact you after your final IIb visit? My final visit was on Mar 13th. I'm carrying my cell phone on my hip 24x7. Should I just put it down and walk away?
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Postby ssmme » Thu Apr 03, 2008 4:27 pm

I forgot to say that I was given a schedule for the extension study and the extension study blood draw should have happened on April 3rd. I think that should have happened today but I've heard nothing yet.

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