This Is MS Multiple Sclerosis Community: Knowledge & Support

I will do my best to keep it up to date. I agree on the double blind stuff. That's why the recent smoked cannabis trials never worked. It was obvious who was getting the weed! I don't know if I should expect any shot site reactions on the Tovaxin. I guess we'll just have to wait and see. It should be getting underway soon as I gave blood to make the drug yesterday (9/12/06).

ditto!

One more thing about all the negative crap that is thrown about here. I absolutely hope to see results. I am very optomistic about this trial but also mature enough to know that if it doesn't work, I won't be "crushed". The whole MS thing is a major let down in the first place. Why not have hope? I have a friend who is an oncologist and he told me that in almost all of the people he treats who recover there is a common denominator; a positive attitude. He also stated that almost all of the negative attitude patients had much harder times recovering if they recovered at all.

That is why we get so hopeless feeling at times. This isn't like cancer. There is no possibility (at least for now) of the "when this is over" scenario. There is no light at the end of the tunnel. No painful, awful therapy that we can endure and possibly kick it. That being said I will use my favorite quote "The beauty of doing nothing is that you can do it perfectly. Only when you do something is it almost impossible to do it without mistakes. Therefore peple who are contributing nothing excepth their constant criticism can feel both intellectually and morally superior."

I use this quote because yes, I may be just blindly hoping this will work, but at least I'm not sitting on my duff offerring nothing more than skepticism for anything new. The overwhelming response is "Good Luck", but I have become successful to this point in my life by ignoring critics and I think I'll continue to do so.

oo

It seems that with at least 3 people from here doing the tovaxin trial - carolew, loobie & bob's wife, we should get some good feedback.

hmmm... are they saying they cant do this for all people? That could put a dent in the golden effective ratio they tout. Did they give you any indication of what % of people they cant?

CureorBust,

That is what they told me at the beginning. I had to go in and donate 18 test tubes of blood so that they could do full bloodwork, but they also said it was to check out whether or not my blood would make the T-Cells as desired to make the vaccine. It is obviously something they have run into, but they provided me no insight as to what percentage of people will not be able to produce them.

Lyon,

I sent you a PM with the info. you asked for.

Lew

Just for the record. They never called me for this trial.....

mmmm...I wonder if you only make required amount of reactive t cells during an attack???? It would be really interesting to find out from the researchers.
NN

I will ask that question from my research coordinator. I'm not sure anyone knows at this point, but I will pose the question and post the answer I get on here.

Lew

oo

The criteria they gave me was this:

Been dx'd approx. 5 years ago give or take
No CRABs for 1 year or longer
Recent evidence (new lesions, new clinical presentation) of an attack
Low EDSS

What I took from this was that they wanted to catch people who were actively building up new lesions, but who did not have much disability. I could be dead wrong but it looks like they want to make sure that everyone in the trial is definitely RRMS and not ready to go SP since apparently the RRMS population is the initial target.

They've called me for the study. I'm not sure if I'm going to do it. I want to, but it's a 2 hour drive each way, and I have to figure out what to do with my kids...

oo