This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

Take care,
Mike

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Mike,

Couple of questions, if you don't mind. How did you know the place in TN was doing Campath off-label?

And will you doc follow-up with regular blood draws, like in the trial protocol?

Thanks.

Primarily, the doc who I had been going to at the research site for Tovaxin as well as the CARE-MS II study told me that the MS clinic in TN was doing Campath off-label. My regular neuro doc here at UK also knew that the place in TN was doing Campath off-label and I had seen rumors of it here on thisisMS.


Yep, I will do the regular monthly blood draws here at UK according to the CARE-MS II protocol.

Take care,
Mike

Yay!!! I wish you the best of luck and please e-mail or post here what is happening. Make sure they prescribe the acyclovir. I took one a day for 30 days. I also had reglan for nausea and benedryl for the hives during the 5 days of treatment. They are doing iv solumedrol during the treatment aren't they?

This week will go by sooo slowly for you in anticipation.

Take care!!

Marcia

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Marcia

Thanks Marcia! Since my doc is new to the Campath game, I asked Laura at AIN to email me the infusion protocol that they use which I then emailed to my doc and the PA. I picked up the prescriptions of Acyclovir, Reglan and Hydroxyzine yesterday so those are already in hand. Yep, I will receive 1 gm of Solumedrol for the first 3 days of the infusion process.


Oh my, you are right about this!!!!!!

I'll keep updated.

Mike

Good luck Mike. I am in Tennessee and I keep seeing these new campath stories poping up from Kentucky. It would be cool to actually meet all of you guys at some point. The first week is not bad. If you are like me you probably won't begin to feel the effects until a week or two after the infusions. My trial doctor had me take ibuprofen and tylenol on a rotational basis during the infusions. Talk to your doc about this - it definitely helps.

Thanks for the well wishes! Yep, it would be interesting to meet up with all of the Campath folks. Marcia and I have met via the Tovaxin trial site and it's always good to put a face to a name as well as swap stories. I will definitely talk to my doc about the ibuprofen/Tylenol regimen.

Take care,
Mike

Hello all,

I have now finished the Campath infusion protocol and things went very well. The Campath infusions lasted for 4 hours the first 2 days and then 3 hours for the last 3 days. I did not have any real problems tolerating the Campath as I did not have any fevers, chills, nausea, etc. during the infusion process. For the evening after each infusion I did experience a bit of tightness in my chest but that was gone by the next morning. The rash/whelps showed up during the last infusion and for that they gave me 50 mg of benadryl IV. Within a hour the whelps were gone and have not returned.

Overall I feel pretty well but I do have less energy and by the end of the day of not doing much I'm pretty tired and generally weak. I will take this week off from work and then start trying to get back into my routine. During this week I plan to take things pretty easy. However, my balance has been a problem for a while now and with the added weakness it's a little worse. So I will start to do a few balance type exercises to force my muscles to do something for a living instead of wasting away. All of this will be done cautiously as I don't want to do more damage than good by pushing things too much.

Take care,
Mike

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Hey Mike,

You've been dosed. YAY!!! The best way I can describe the post-campath weeks (and months for me) is that you are slowly crawling out of a hole. All of a sudden you discover you can do something that used to take a huge effort. It hits you like what I always call a V8 moment. Sorry for the cliches but it's the best way to describe it.

My favorite moment was when I was walking toward the entrance of a bank on a particularly blustery day in April and a lady walking out of the bank had one of her bills take off in the air. I ran after it....R-A-N after it and caught it for her without even thinking. It was only a $5 bill but it was a glorious save. My husband was there and couldn't believe that I did it. That was a moment when I knew I had improvement. Whether permanent or temporary is yet to be determined but I will take it for what it is.

I hope you have moments like this in your near future.

Marcia

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Marcia

Hi, Mike.
I got my infusions the last week in April, and I'm feeling pretty good. I've been biking 5 miles at a clip on the w/es, and last Sunday I went 8.4! I haven't been able to do anything like that since - well, since NEVER!!!
I tolerated it all very well, except for the rash on day 4, which wasn't even unpleasant.
Hope you have the same experience.