Loobie's 100 day club thread

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Mon Jul 07, 2008 3:15 pm

Loobie wrote:I called Carrie Trekker at JH today and she picked up right away. She is emailing me what I have to do to get the whole process started. I'm still waiting a little longer, so I thought it would be good to get the ball rolling and see if there are any long lead time items I have to procure. I really, really want Tovaxin to work. I think it may be the answer for many, many MS'ers. But my wife looked at me this weekend and asked how long am I going to wait? It's a valid question. Save for the brief respite I had, everything has gone down hill and we are going to be at 5 months here pretty soon, and I really don't know if I was on the placebo or not, so I could have been on Tovaxin for about 18 months now. I already went through why I thought I was on placebo based on what it looked like, but I really don't know. I thought about what she had said and translated it into this: if it keeps getting worse at the rate that it is right now, next year I'll be about a 6 or 7 on the EDSS. So for me, and I can't speak for anyone else, time is of the essence.

I did have one disconcerting thing happen in our conversation though. She did say that, at least for now, they are not taking anyone who is secondary progressive. So I have to get an MRI and compare it to the one I had right before the trial. If there aren't GAD enhancing lesions, you're excluded. They are gearing up to try it on SP soon, but aren't taking it now. So I figured WTF, I can get my MRI and my records together, send them off to JH, if get excluded, I'm still in. If not, then I'll probably start packing.


Thanks for your honest answer Lew.

If Tovaxin isn't working, then you are absolutely right, why continue. It would be the same if you weren't in a trial and on an approved therapy such as Beta or Copaxone and it wasn't working. Find something that was. Your health is all you have...you gotta keep looking til you find something that works!!

Good luck Lew.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby Terry » Mon Jul 07, 2008 3:31 pm

Hey Lew,
Don't be sorry for one second that you posted about your good days. We all need to hear about those as we celebrate with you and those kind of posts give us hope.
Likewise, when you are in trouble, we mourn with you.

In Lars' words...
Be Well, really, really well.

Terry
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Postby chrishasms » Mon Jul 07, 2008 3:52 pm

Hey not everything works for everyone bud especially if you are going SPMS...now you can at least know you did all you could to beat this while you were RRMS. (I hate those subsets)

Now it's time for you to pursue another way to go, but remember, at least you are still fighting and to me that means you have already won.

You always have all of us as your cheerleaders...no offense Cheerleader :P
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Postby av8rgirl » Mon Jul 07, 2008 4:17 pm

chrishasms wrote: not everything works for everyone


Hmmmm, where have I heard that before!

You know Lew, we all have bad days, some of us more bad than good. Lately that's seems to be all I have.

Do what you have to do to get better...think I already said that!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby IHaveMS-com » Mon Jul 07, 2008 5:09 pm

Hi Lew,

I am also very sorry to hear that your situation is not improving.

I was surprised to read the latest data from my study that 75% of the patients had an epitope shift. Even with that, the overall results were that 73% of patients remained relapse-free at two years. http://tinyurl.com/6r92z4

From the latest data, 13.6% of the patients in my study did have a worsening of EDSS. I don't know what the percentage will be in the current study, but my study vaccine started out with only 1 protein and 6 peptides. The current study vaccine uses 163 different peptide fragments from the 3 major myelin proteins to identify an individual’s MRTC set. 109 of these peptides have been found to identify MRTCs.

If someone has a lot of ongoing epitope shifts, Tovaxin may not work for them. If they have an occasional shift, Tovaxin should have no problem.

You may be in the situation where your body is producing several new MRTC lines that were not present when this round of vaccine was created. I believe your protocol says if in the doctor's opinion the patient is worse for 12 weeks, the doctor can request that Opexa draw more blood, and if there is still MRTCs or an epitope shift, new vaccine will be made. I assume you have new cell line(s).

You may wish to pursue having your blood tested and new vaccine made if you have new MRTCs. This could be done while you are waiting to see if you can get into the other program. If you have new MRTC lines, you can decide what is the best course of action for you.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby patrickm » Mon Jul 07, 2008 5:17 pm

Loobie wrote:Pat,
I wouldn't describe our camping trips as stressful and energetic. ...Hell, I exerted less energy in a long weekend of camping than I do in one day at work.


OK. Sounds like work to me, but I will take your word for it. Was it hot out there? I'm not sure where you live, but being out in the heat as opposed to inside in the AC could obviously not help things.

Please understand me, I'm NOT trying to say that you don't feel like absolute crap—before, during or after camping, was just questioning whether camping should be the final, potentially life-altering barometer of unawesomeness, that's all. Obviously for you, the answer is yes.

I'm not a camper so it seems really hard to me and being out in the heat would definitely NOT help me unless there was cold water to soak in nearby. On the other hand, maybe you were camping up in the cool, cool mountain air and your only issues was skeeters.

Loobie wrote:Also, placebo effect or not, what happened happened; i.e., it was real to me.

Seeing how this is the internet and I know none of you personally, what good would it do for me to make that shit up? I was walking with pain free and energetic legs for a good bit there. I can't explain it, but it's not that way now and that is what it is. Psychosomatic? Maybe. Real? Maybe. Who knows for sure. I just know I hadn't felt that good in a really long time and it was for more than four days and I got excited and posted about it. That pretty much sums up what's happened. As of now, that period where I got a little better may as well have never happened for all the good it's doing me now. That's one of the things that really sucks about this whole process. You are basically 'waiting by the phone' for something to change. When it does, and it's in a positive direction for days, I am going to get really excited. Maybe I should have waited longer to post at all, but I was chomping at the bit for something positive that lasted longer than four days, so there we are.


Loobie, I think you're misunderstanding me and possibly the concept of placebo effect.

First, I was NOT questioning how you felt. You felt how you felt and you feel how you feel. I certainly was not and am not suggesting that you didn't. How you felt was real, and we were all really psyched for you. I think we all have enough going on that we certainly don't need to make shit up good or bad to tell a story. Definitely NOT what I was trying to say at all.

Second, placebo effect is real. The person who feels how they feel really feels how they feel—mind over matter based upon a perceived outside positive stimulus. My neuro gleefully details how good of a placebo responder she is. Under placebo effect, you not only perceive that you are getting better. You DO get better by the same concrete physical testing that we all go through. You have just THOUGHT YOURSELF BETTER. But you are better. It's not made up.

Now that I've got that out of the way, I'm also NOT saying that what you experienced was placebo effect. I don't know you at all and I have no clue. I was just thinking out loud. It's what I do and I apologize for it.

I'm also not sure how you would have placebo effect when you're on the real drug. I guess if it really didn't work for you, but your body convinced you that it did for a very short time, that would be possible, even while the drug wasn't really doing what it was supposed to.

My question was simply how you could have had such a huge bump up and then a huge swing down. I'm very curious if this has happened to others in the study. Maybe this isn't abnormal at all and your body is still working on stuff you just can't see/notice? I have NO idea, but as you said, your improvement was no illusion, just as your dip has been no illusion.

I am also curious what the expectations from Opexa are on rebounds. We have heard Tim's informed opinion and personal experience on the vaccine that he has had, but we have also heard that what Tim has had, at least up until this point, is probably different than what we've all had under OLTERMS. For all I know, a 6-9 month rebound might be normal in the more severe cases. <shrug> That doesn't mean that you sit there and take it. Maybe you can't. Again, everybody's gotta do what's best for them. I assume that's why we all got into the trial in the first place.

Please accept my apologies for making you stressed out. I should have been much more clear in what I said, or perhaps just kept my mouth shut entirely, though that is not my forte. I do NOT think that you should have kept yours shut. You have been very animated, but also very careful and clear about what you are experiencing and that, I feel, is what this board is for: sharing both the emotional expression and personal experience that goes with MS and TERMS.

Most humble apologies, sir.

Hang in there.
very best,
patrick
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Postby Loobie » Mon Jul 07, 2008 6:11 pm

Pat,

No worries about anything. We sound exactly alike; saying what comes to mind always. Believe it or not, and anyone in Ohio will tell you, this 4th weekend was probably the coldest I remember. It was damp out too and we were all sitting around the fire at night with freakin' sweatshirts on! I couldn't believe it. I brought one sweatshirt and I left it out in the rain on Thursday night and it rained all night long, and then it was damp and it wouldn't dry out! This global warming is killing me :wink: . But seriously, it was very cool out even during the day. On Sunday it really heated up, but we were out of there before 11:00am.

Yeah, if you don't camp and picture pitching tents and the like it would look like work. We camped for almost 10 years in tents. I tell everyone that dogs me for having an air conditioner on my camper that I've earned it, damnit! We really don't rough it at all. I've got a fridge, AC, the works. I just back that dude up, put the jacks down and we're camping.

What Tim writes about having another blood draw is very intriguing, I had no idea that they would do that. I'll have to call my coordinator back and tell him I want to check into that. I even asked him about epitope shift since I went from a 3 to a 4 in one month's time and he gave me the deer in the headlights look and I forgot to talk to my neuro. about it. My coordinator is quitting anyway and going for his PhD in neuroscience or something like that. It's a doctorate, but he won't be practicing medicine. I wish him well though. He's screwed a few things up, but my site has so many trials going on right now, I don't know how he keeps it all straight. Anyways Pat, sorry if I snapped back a little. I had been a plant manager for 15 years up until two years ago. Sometimes I get flushed initially, but it takes an awful lot to get to me past my initial reaction to things. I've been called everything but a man of God, a drug dealer (that guy was seeing if he could get me fired.... right before I fired him), and every other nasty name you can think of. Hell one time I fired a guy and woke up about 15 seconds later when I was pulling myself off the ground after he sucker punched me, so please don't think I'm upset about it. Like I said, I usually just say something to get it off my chest and I move on. You and me have always been cool and as far as I'm concerned we still are. No offense taken at all.
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Postby Lyon » Mon Jul 07, 2008 6:38 pm

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Postby patrickm » Mon Jul 07, 2008 7:08 pm

Loobie,
Groovy. I feel much less rotten now.

That kind of camping I think I could manage! That means microwave popcorn, so I'd be good.

Please let us know what they say about a retest. If there is such a thing, you'd sure seem to be a prime candidate.

I guess none of us know what normal is since nobody's been on the exact drugs that we're all taking before. That's where the guinea pig thing comes in. As I've said before, they eat guinea pig in Peru.

We are all pulling for you. Except that one guy. :wink:

word brother.
p
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Postby av8rgirl » Mon Jul 07, 2008 7:19 pm

I love reading this stuff. I learn so much. I didn't know about the retesting for new MRTCs. Thanks!!!

There's also a lot of studies going on at my site as well and the coordinator I have is NOT keeping things straight! That scares the crapola out of me!

Anyway, off topic here.

I hope you get some answers Lew and they get things straightened out for you so you get to feeling better again. Seriously.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby patrickm » Mon Jul 07, 2008 7:57 pm

av8rgirl wrote:I love reading this stuff. I learn so much.


I know! Me too!

A fridge and microwave popcorn in the wilderness! A right cross to the jaw and sleeping on the job at firing time! Who knew??

I feel blessed that my docs and nurses are so methodical. Some of the steps seem pretty silly, but hearing stuff like this makes me appreciate why the do them.
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Postby flipflopper » Mon Jul 07, 2008 9:01 pm

av8rgirl wrote:I love reading this stuff. I learn so much. I didn't know about the retesting for new MRTCs. Thanks!!!


I agree, I didn't know that either! :)







Lew,


I think it's great that you are doing everything you can possibly do at this point; from discussing your progression with your neuro, to asking if you really can be tested again for new MRTCs while, at the same time, looking at all the other options available to you (Revimmune etc...)


I hope to read that somehow, Tovaxin will start doing it's job for you but if that doesn't happen, I hope that you will truly benefit from what you try next.


Thanks a lot for posting about your experiences! I am a little lazy but I promise to post anything that I consider relevant when I start receiving my vaccines from the extension trial
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Postby cheerleader » Mon Jul 07, 2008 9:11 pm

Lew-
ah, jeez, buddy. Just got back from our trip back east, and was hoping to read a continuation of your beer/dancing/carousing adventures. I'm so sorry you've been progressing. We're all hurting with you. Hope you're looking into the new blood draw Tim mentioned- and I'm really proud of you for getting things together for Johns Hopkins.

Just know we're all sending our good thoughts, cheers, prayers and positive vibes. Hold onto the good stuff.
with much hope,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Tue Jul 08, 2008 2:28 pm

Thank you guys for all your positive thoughts and prayers. It really makes me feel good. :) . Well I emailed my neuro. today and sent him a copy of Tim's post concerning the check for epitope shift, so we'll see what happens. As I always do, I will let you know how it goes live and in color 8O .
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Postby Lyon » Tue Jul 08, 2008 2:52 pm

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