When did you receive your first vaccination?
November 14, 2003
What dose did you receive?
This question only applies to someone in the I/II dose escalation study. I was first in the low-dose group receiving 7 to 9 million cells. On January 31, 2005, I was moved into the mid-dose group. Since I was in a study to show safety and the proper dose, I was moved into the mid-dose group after the mid-dose was shown to be safe. The mid-dose is what everyone in the IIb trial is currently receiving or will receive when they move into the extension study. The mid-dose is 30 to 45 million cells.
How many millions of cells?
The question of dose is only relevant to the I/II dose escalation study. Anyone who is currently receiving Tovaxin will be getting the mid-dose, with the exception of a few people (2 or 3) who are finishing up the high-dose part of the dose escalation study. The high-dose is up around 90 million cells.
What was your overall experience?
Did you get better or worse?
My EDSS went down and I have regained many lost functions. I would add to this question a third response -- Did you get better, worse, or stayed the same.
What side effects did you notice?
None, and I never had an injection site reaction
MRTCs, Masking/Suppressing, and Some Thoughts
I hope everyone has great disease reversal, but the bottom line is, if going forward, you are never worse than your worst day in the past, Tovaxin is working.
From what I can tell, the people in the extension study wake up each morning looking for what function they have regained today. I hope it works that way for everyone, but that is not what the hope for Tovaxin. Its purpose is to stop the attacks.
If when you wake up each day, you do not sense any regained function, you can be disappointed in your body's inability to restore itself. If on the other hand, you wake up and are feeling more disabled that your were at your worst point, then you can be disappointed in Tovaxin.
Some things to consider if your are in the Tovaxin trials:
1. It isn’t an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won’t think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary