Last first phase and first extension visit

Loobie · Post by **Loobie** » Wed Dec 05, 2007 5:08 am

Well I got my last first phase and first extension visit done today. They give you a much more thorough going over (almost a full physical) and all the usual stuff for EDSS. I'm now a 4. That really blows for me psychologically but what are you going to do? My blood bag for the extension is set for a week from today, but my research coordinator said to "just pencil it in" since they still have to get word from Opexa on whether or not I have MRTC's. I didn't know you could "lose" them, but I suppose when the drug is working, there will hopefully come a time when you have lost them. I doubt that's the case with me, but we'll see. I can't find out soon enough since working full time is starting to take a lot of effort. Keep your fingers crossed!

MaggieMae · Post by **MaggieMae** » Wed Dec 05, 2007 8:15 am

Figers crossed and a little prayer too.

Lyon · Post by **Lyon** » Wed Dec 05, 2007 8:52 am

Loobie · Post by **Loobie** » Wed Dec 05, 2007 9:38 am

Yes, but each time when they draw all those test tubes of blood, they must check for MRTC's is all I can figure. They also have to follow protocol to a T, and I would imagine that initial screen is a protocol requirement to begin the extension. I think they check before the bag is drawn in case they don't find what they are looking for and they can then cancel it. That's all I could figure.

My neurologist's office was a zoo yesterday. I was doing my "long walk" and I must have had to get out of the way of a dozen different drug reps. The Teva people were there going over Phase III stuff for Laquinimod (sp?). They also had another group in there concerning a drug I had never heard of. It's probably been talked about on here but I just didn't notice. It sounds very cool.

It is for SPMS'ers. It is called MBP, or some combination of those letters. It is an every six month infusion of a "myelin basic protein". From what I gathered (and that can always be suspect

), they put the protein in you and it keeps your MRTC's occupied with that rather than with our "nerve insulators". The story behind it was the most compelling part to me. Some guys up in Canada have a very close relative, I believe they said sister, with MS. They developed this approach and it is supposedly working very well for her and she is SPMS.

Like I said, this was my research coordinator trying to explain it to me during my testing, so I don't know if I got the facts straight. The reason I'm interested in learning about this one is that my wife's aunt is in the trial. If anyone on here has heard about this and can steer me down the road of learing about it, I would greatly appreciate it. We probably ought to start with the correct name! My wife's aunt is as sweet as the day is long, but she could not tell me the name of the drug that she is enrolled in a trial on. That amazes me, but she is in her early 60's and she has never liked to even talk about her condition, much less research it; so I volunteered to do some for her. Hell, we probably have a thread on here for it under the intial name and I've just never read it. If I remembered the company name that would be a start, but I don't even remember that! Can anyone say brain fog?

MaggieMae · Post by **MaggieMae** » Wed Dec 05, 2007 10:33 am

It is probably MBP8298. I have been following this trial also. Let us know how your Aunt is doing.

Loobie · Post by **Loobie** » Wed Dec 05, 2007 10:51 am

I will do that!

Lars · Post by **Lars** » Wed Dec 05, 2007 3:57 pm

Loobie,
Thanks for the post. We are all sending you good thoughts, prayers and energy. You have been very patient and a good example. Now its my turn, I'll try to follow in your footsteps.
(you will) Be Well,
Lars

Lyon · Post by **Lyon** » Wed Dec 05, 2007 5:34 pm

Lars · Post by **Lars** » Wed Dec 05, 2007 6:17 pm

Bob,
I suppose I have been hesitant......but here you go. I put most of this on my journal page but sometimes forget to duplicate it here, and I also forget that nobody reads that.
I had my re-lapse eval. on 11/28, No question about the relapse. EDSS went from "I can't remember because it didn't matter" to about where Loobie is. I started a steroid infusion today (12/5/07 Dr. recommendation) hoping to get this behind me and on with the trial. My target for open label is June. Wish me a speedy journey.
Thanks for the posting reminder.
Ever Forward,
Lars

Loobie · Post by **Loobie** » Thu Dec 06, 2007 4:54 am

Thanks for the kind words Lars. It sure doesn't feel like I've been patient internally! As I've said before, this trial thing has a dynamic all it's own. Just the thought of getting something that may work can overtake your thoughts and make MS "time sensitive". We all know from listening to the people who have had this disease for years that "the answer is just around the corner" can leave you wanting, that's for sure. But it sure does suck when your know that your disease is working overtime and all you are doing is waiting. I mean my blood draw is supposed to happen next week and from there I will get the drug when it is ready. That means that I have done everything within my power to make sure this happens as soon as possible.

I think that's the hard part; having no power or control over it all. Once again I'll pull out my oft used AA parallel. What's the first step towards acceptance in AA? Admitting you are powerless. I have been doing a bit better in regards to acceptance. I have fought and fought through exercise, prayer, and everything short of voodoo. It makes you feel great while you still feel good, but eventually you just have to accept that you have MS. You can still do all the other things that you can control, like diet and exercise, but I have come to the conclusion that fighting on the acceptance of your disease front is a losing battle. Just in the last two weeks I have had to ask for a handicap space at work and I think that started it for me. I was walking about 300 yards from my car to my office. I was getting to my office and having to take a pretty good break to get my legs back under me. That wasn't working because I have to pee about every 10-15 nimutes for about the first two hours in the morning and this was causing me not to get the rest I needed to recharge after the parking lot walk.

But just saying "I have MS and I may have to make changes I don't want to" sucks the green weenie to say the least, but after I crossed that hurdle, lo and behold I was feeling like I had more energy in the morning. All that time I was hurting myself by trying to fight it and not admit that I may need special accomodations; more or less hurting myself to keep from saying out loud that I have a disability. I don't know, I'm still learning as I go, but it has helped me to just admit it and try to start accepting the fact this is real and it may take me down, or it may not, but either way, I have to try and not fall down the black hole of despair and self pity. This is definitely a journey. Any maybe more of a journey of self discovery than anything else.

Lyon · Post by **Lyon** » Thu Dec 06, 2007 6:21 am

MaggieMae · Post by **MaggieMae** » Thu Dec 06, 2007 6:56 am

Bob,

I was thinking the same. If Lars and Loobie continue to progress in the extension trial..... They just can't. They are going to do better.

We are hearing from some who see good results (like your wife) and I'm just hoping that those we don't hear from are also seeing good results in the trial, but are just out enjoying life - not worrying about research because they feel they have found their answer in Tovaxin.

Loobie · Post by **Loobie** » Thu Dec 06, 2007 7:07 am

I hope you are right Maggie. I feel (probably since this is all fairly new and I'm scared to death) that I may be compromised in my ability to work in very short order if something doesn't change quickly, and that's why I'm so time sensitive right now. If I can just eek out another year of work (and hopefully much, much more after I get started on Tovaxin) I will feel so much better since my wife will have her RN by then. If something happens between now and then, I have 0 income and that's my biggest fear and source of stress right now.

IHaveMS-com · Post by **IHaveMS-com** » Thu Dec 06, 2007 7:16 am

Hi Loobie,

My best wishes on your vaccine. I was always going to post how to make the best vaccine, but after asking many questions, there is not much to say. Stay away from the list of drugs that Lars posted http://www.thisisms.com/ftopic-3826-0.html Don't take any NSAIDs after your injection. A little exercise before the injection might be of benefit.

Yes, but each time when they draw all those test tubes of blood, they must check for MRTC's is all I can figure.

When they takes some tubes, they are always looking for MRTCs. They are also checking other blood levels unrelated to MS, but necessary to monitor your health. Eventually the vaccine will be fine-tuned for everyone. That is, some patients may need one dose a year and other may need it every 8 weeks forever.

I am in Chicago for my Grandmother's 99th birthday, so I won't be online much. Again, my best wishes to you and everyone going into the extension study.

Loobie · Post by **Loobie** » Thu Dec 06, 2007 8:18 am

Tim,

Thanks for the info. (link). I will use the advice about the exercise also. I just want to go into a cocoon until my drug gets here, but a little advice from someone who's been through this already is nice to get.

After all, you are the "Godfather". I thought I would try and change your superhero status to mob boss status since I figured pinstripe suits won't chafe nearly as much as blue tights! Seriously, thank you for staying as involved as you do in terms of keeping us grounded as we go through this trial. I, for one, greatly appreciate it.

Have fun in Chicago. That is where my wife and I have always gone to get away some weekends. I love that town.