So I got my fifth shot today. I've been being kind of quiet on the Tovaxin thread because I just didn't have anything really concrete to report. Well at my EDSS evaluation, I'm back up to a 4; skipped right on through 3.5. Since I'm not having any "new" symptoms I was kind of hoping beyond hope, but the last week has just been more downward progression of my walking ability. I had to use the wall and was severely limping by the end of the "long" walk (500ft. is a long walk?..sheesh). I took my dose but me and my neuro. (who saw me after the shot) have decided that we are going to call it quits in this trial unless something ground breaking happens in the next couple of weeks.
I'm not getting new stuff, but the leg weakness is just getting worse and worse; I just can't look the other way anymore. I was holding on to the hope that nothing new meant no progression. But after we talked about the amount of progression I've experienced in two years and then put it out there that if this keeps up, where will I be in two more years. I just had to put my head in my hands for a bit. He is checking for me to see if I can get in the Campath study with Tovaxin so recently coursing through my veins. 75% get Campath, 25% get Rebif in this study. He says he is really liking what he is seeing in Campath studies. I don't know how you would not totally be able to tell the difference between Rebif and Campath. I mean one is every other day and the other is like Tysabri. That's kind of a question since I'm not sure about the schedule for dosage of Campath, but I know it's not every other day!
I can't believe I'm considering another trial, but at least there's no risk of 'flying naked'. As you have all heard me talk, I'm wanting to do HiCy. I just talked to Carrie and they are full until the first of the year. Maybe I'll just wait it out and hope it's not too late. I just feel like I got hit by a truck (because of the news, not the MS). I was hoping beyond hope that Tovaxin would be it for me. It doesn't appear to be so I can't go off and have a big ass pity party. I've got to move on and hope I slow this party down a little bit. I'll let you all know if I get in the Campath/Rebif thing. I think I'll know if it's Rebif since Avonex damn near killed me. But for now, 75% odds seem pretty good.
I need some love people. I'm not one to stay down in the dumps or feeling sorry for myself for very long (usually thanks to GWA
) and I don't plan on starting now. I was sitting next to a gal today at my site who was barely able to walk with a walker (she was getting Tysabri) and instead of really bumming me out, she really cheered me up (a little
) because we just laughed and joked and had a nice talk. It just made me feel like if that's my fate, I can be like that too. As long as I keep that attitude, maybe this won't steal my spirit. I just need to take a deep breath. I was already pre-planning this possibility anyway, but once it actually happened, it was more melancholy than what I envisioned. Maybe because I found out JH is full until '09.