First extension dose today
Posted: 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
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
