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I need opinions!

Postby Libreni » Tue Sep 19, 2006 4:50 pm

Truthful, heartfelt, from your gut opinions.

Tovaxin trial: Would you/wouldn't you? why/why not?

I've been contacted. I qualify. They want me.

I'm not sure if I'm prepared to be a guinea pig...

I'm also not sure if I'm prepared to live with not giving it a try...

Thanks for your input. :)
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Postby Lyon » Tue Sep 19, 2006 5:11 pm

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Last edited by Lyon on Sat May 07, 2011 9:31 am, edited 1 time in total.
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Postby sh8un » Tue Sep 19, 2006 9:54 pm

Wow...what a difficult question to answer. I think that I can't really say right now what I would do if I were put in your position. I know that sitting here, I would definitely try Tovaxin but I would want to know that I am getting the vaccine. Which of course is not possible with a double blind study. However, you do get the vaccine after the first year. Which means that you have 50% chance of not getting the vaccine and still be in the trials and get a year’s worth of info and after the year is up and the news is great, you can then choose to get the vaccine. I would also ask you to think about the disabilities that you have right now. Are you concerned enough at this time that you think you need to try something else NOW? Like I have said before...in theory (just like any other drug) this sounds great but there is also something scary about turning your own immune system on itself. Having said all that and just to be a little confusing, Tovaxin is one of my greatest hopes. So, I think that for me, the biggest thing I would do is look at how my MS is acting and choose accordingly. It is scary to be a guinea pig but then again that is how new and effective drugs are discovered. If you can get your hands on dr. Zhang's previous published studies with monovelant T cell vaccines that would be good to read as well. Tovaxin will not be a cure, you will always have to get your blood checked and be vaccinated if needed. The hope is that the damage is stopped if the t cells are stopped from attacking. I also wonder if the researchers have info that they could share with you, about how the participants from the last trial are doing at this time. The timeline with Tovaxin trials is really confusing because I thought that the trials had started in in june but now I am not so sure what the heck is going on. Oh...I would also ask about what possible side effects they are expecting. Not just what side effects the participants had.
Anyway, good luck with you decision.
NN
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Postby Libreni » Wed Sep 20, 2006 7:27 am

Thanks to those who posted. I really appreciate it. I have A LOT to think about...

My level of disability is very small, relatively speaking. I have minimal function in my left arm/hand. I can only walk short distances without having to stop. But, I'm thinking if I can do something now, maybe I won't have a wheelchair in my future...

any more opinions are welcome... :)
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