WOW, what an interesting but very stressful journey to finally get to this point! The short version of the story is that I was a Tovaxin lab rat who received Tovaxin during the 1 year of the Phase IIb trial and then 4 out of 5 vaccinations in the extension phase before Opexa ran out of money and shut the study down. At that point it seemed like the obvious thing to do was enter the Campath MS-CARE II trial and with a lot of back and forth with my study site and Genzyme, Genzyme finally decided to let us Tovaxin lab rats in.
By this point it was late February and I was severely disappointed to learn that I had been randomized to Rebif. I started my MS journey on Betaseron and had not done well on it at all so I couldn't justify 2 years on Rebif waiting for the crossover to Campath. My best option at this point was to pull out of the study to pursue Campath as an "off-label" treatment.
For off-label treatment my choices were the Advanced Neurosciences Institute in Franklin, Tennessee or hoping that my regular neurologist here at the University of Kentucky (UK), my place of employment, would prescribe it. I almost didn't make the appointment with my regular neurologist because he is a tightly wound guy and I was more than sure that he would not prescribe it. I did make the appointment though and after I informed him that I was planning to go to Tennessee for Campath he agreed to prescribe it to me for treatment here at UK. He wanted his clinic to be a Campath study site but did not get his stuff in a pile to get it done and based on the Phase II data and conversations with other MS docs it was his belief that Campath was the best thing going.
GREAT, I thought! Then the neuro clinic couldn't find a place to do the infusions because they were not set up to give me their only IV room for an entire week. So, I was back to the Tennessee option. However, I continued to try and find a place to do the treatment here at UK and with some help from an oncologist colleague I secured a spot in the cancer center's infusion lab. GREAT, I'm back at UK, I thought. By this point my neurologist had gotten cold feet and he and I debated back and forth for a couple of weeks until he finally got back on board to prescribe Campath. GREAT, for real this time! Finally next Tuesday, May 26 I will begin the 5 days of 12 mg Campath infusions according to the CARE-MS II protocol (the infusion center is open 7 days a week)!
I can't wai to get this new chapter started! I will try and do fairly regular updates on my progress here under this topic heading.
Last edited by hmtucker
on Tue Jun 02, 2009 6:26 am, edited 2 times in total.