Extension blood draw scheduled!

Loobie · Posted: Tue Dec 18, 2007 6:43 pm Post subject: Extension blood draw scheduled!

Well if finally happened. Two months behind schedule, but it finally happened. Bob told me to call down to Opexa and bug them since I was all screwed up about nothing going on. Lo and behold, the next day my blood draw gets scheduled. Coincidence?? Probably since they said they did all the first round of blood draw scheduling that day. They scheduled me for Dec. 26. I'm so freakin' happy to get this process started. I guess that means I won't get my first jabs until Mid/Late February, but at least it's moving forward. I hope I have better news to share than all the bitchin' I've been doing. I'll let you all know how getting the real stuff goes for me. Tim's feedback has kept my expectations about running the Boston Marathon next year to minimum, but after this last year, a slow down or stoppage of my progression would be awesome and realistically all I should hope for.

I can't wait! Halle-freakin-luya!

Lyon · Posted: Tue Dec 18, 2007 7:21 pm Post subject:

It's good to hear Lew!

As far as running the Boston Marathon, as far as I know it remains to be seen how much someone can force recovery once the disease process is stopped.

Gut feeling is that it's going to require more pain per gain, because it's not just a matter of exercise but also trying to incite signals to reroute. It'll be interesting to see how much reversal of disability someone can eke out with mule headed stubbornness.

I'll watch with interest mule.....er, Lew.

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

sh8un · Posted: Wed Dec 19, 2007 1:28 am Post subject:

hey
thanx for the update. i hope that it will go well for you. i am happy that you are excited.
NN

Loobie · Posted: Wed Dec 19, 2007 6:44 am Post subject:

That will be my mantra if I get to where I can crank up my exercise a little bit; "Create new neural pathways, Create new neural pathways....". As for the mule headed stubborness, I definitely have that in my "arsenal".

Thanks for the support guys.

Lars · Posted: Thu Dec 20, 2007 9:42 am Post subject:

Loobie,
Congratulations and thanks for the update. Very, very happy for you!
Hang in there, you're almost home.

Since I hate to start a new thread, I will update here. It has been been almost 2 weeks since my last infusion. I have regained some use, but have certainly not returned my previous state of not returning to the state before that. More damage every every time leads to more questions about regaining function. I have spoken to my clinic and am back on schedule to receive my last dose of placebo on Jan. 11th. June (end of my year) seems far away, I hope my team is more efficient than Looies has been.
Be Well,
Lars

Loobie · Posted: Thu Dec 20, 2007 12:13 pm Post subject:

I really think they will be. I talked to them at Opexa and they were more or less 'gearing up' for the extension. Now that they are processing the blood draw requests, your's should fall right in line.

TWG · Family Member Joined: Jul 09, 2007 Posts: 49

Hey Lars,

I have had two nasty relapses, never had relapses like that when I was on the CRABS. The 'Roids never got me back to where I was before, but did always help after about 10 days. Go back to the clinic 1/18/08 for my 3rd of 4 visits after my 5th shot. I hope it is all resolved before my May vaccine draw, I believe it will be. The doctor agreed with me that I was on the placebo, and the doctor is blinded as well. Doc' said of the 5 in the study 1 has improved to the point you can't tell if they have MS, 2 have had minor improvements and no relapses, And 2 have worsened, I suppose I'm one of the later. I asked if doc' believed in Tovaxin, the response was a resounding "absolutely and I need to get you on it as soon as possible." Both of the responses where encouraging, as they should be to all as well. I think it is good I started somewhat later so phase III will be resolved before I hit my blood draw. Heard my coordinator has received phase III paper work for review, so maybe we will all get a new years surprise, she said trials generally announce in the New Year, probably a bean counting thing. Anyway, hang in there and merry Christmas to all!!

ssmme · Posted: Thu Dec 20, 2007 4:49 pm Post subject:

TWG (and anyone else with more info or an opinion for that matter),

Your neuro seems to be much more forthcoming with info than what mine is. I asked how others in our clinic are doing with Tovaxin and he said that he couldn't give out that information. I asked what he thought of Tovaxin and he said that since there's only 5 in our clinic enrolled in Tovaxin that there wasn't enough information gathered by him to give me an answer only to say that IF I am on it then I am doing well and should consider keeping in this course of treatment (ie Extension study). I also asked the research coordinators what they thought about Tovaxin and they both said they couldn't discuss their opinions of the treatment with me because it might sway my decision to continue on it and that it wouldn't be ethical.
Ethical schmethical, I WANT OPINIONS!!!! We're talking about the next step. This is a HUGE decision for me. I plan on sticking with it. Is everyone else out here in IIB going into the extension study? Speak up and give me some opinions and some idea on how your doing. Has your dr given out any opinions or info like TWG's did or are they more like mine and very closed mouthed about it. Speak up...Hello out there...

Thanks,

Marcia
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DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.

Lyon · Posted: Thu Dec 20, 2007 6:45 pm Post subject:

Hi Marcia,

I can only say that my wife is going on with the extension.

Of course everyone's situation is different, but we never considered otherwise.

I mean, to us the extension has been the "brass ring" from the very beginning and the double blind placebo phase has been something to endure in order to get from point A to point B.

I was convinced about Tovaxin before I even mentioned the trial to her and regarding the cost/benefit (not financial cost) ratio there is still nothing out there that is close to it.

I've never asked the trial coordinator or neuro here what their opinion of Tovaxin is........they know I'm active on this site and lately they've been pumping me for info Embarassed

but next time we go, I'll ask and see what they say.

The first time we met the trial neuro I was bragging up Tovaxin and she was bragging up....I think it was copaxone. She said that in all her years of neuroing she hadn't had anyone on, whatever drug it was, progress to the wheelchair.

At the appointment of the second Tovaxin injection, when my wife's EDSS had gone from 3.5 to 1.0, it wasn't anything the neuro said but it seemed obvious to me that she could hardly contain herself, as if she had never seen anything like it.

We all know that there's a lot of information in this trial we aren't privy to and I hesitate to say that my wife is on the "real thing", but that appointment sure led me to believe that someone with a lot more training and years of experience was convinced that something special was going on.

That's all I can think of that might be of help.

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Loobie · Posted: Fri Dec 21, 2007 7:10 am Post subject:

The only reason I got in the trial was the extension. My Doctor and coordinator have been forthcoming with information. They've told me that they can give me any information they have, so it sounds like you Doctor may just not know, or for whatever reason, feels it is best not to tell you. Since you will be making the decsion to go into it, I'd let them know you want to know some stats. What's going on in the trial, except for who is on the placebo, is not "classified" information. They are free to opine at will with you.

Lars · Posted: Fri Dec 21, 2007 9:41 am Post subject:

TWG,
Thanks for the post. Sounds like you have a great team. I have always been impressed with the amount of info sharing I have received from "Doc" and team. I have never received the "I can't share that with you" response, in fact I have often been amazed at the openness of the staff. They are the reason I will strive to continue into the extension.
All the Best and Merrry Christmas.
Lars

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 141

Loobie · Posted: Mon Jul 14, 2008 5:43 am Post subject:

That sucks Cheryl. My staff has always been very open with me and once we started talking about it, they actually ask me what people are talking about on the forums and how it's going for others.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Lyon · Posted: Mon Jul 14, 2008 6:06 am Post subject:

It's got to be a stressful situation Cheryl but you've mentioned that you've got a new person or a couple new people on your staff and they probably don't know a lot and are there isn't a lot they can tell you. When they say "I don't know" they might be giving you an honest answer.

Trial staff that have been around since the beginning have been involved with over a year of information sharing and conference calls with Opexa, where someone new hasn't had that education.

Add your recent steroid treatments and the effects of masking and the trial staff probably honestly don't have the answers you seek.

I'd call Opexa and ask to voice my concerns to one of the doctors and I would also try to keep in mind that Opexa isolated your mrtc's earlier and will again when the steroids clear out and if you aren't adding anything else to your system that masks.

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 141

Thanks ...

That's just it...this new staff person was added, she didn't replace anyone. So the history from the beginning is still there. Oh well. Maybe I ask too many questions so she is being told to tell me she doesn't know so I will go away. That's how I feel. No rapport, no connection anymore.

As for the steroids, I was tested before I did steroids. 2 weeks before. Then 75 days afterwards.

I follow the logic. I guess I am just trying to understand and find out if there is anyone else who has tested negative.

I am sorry...I am not a whiner, but I am starting to feel like one.
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Tovaxin Lab Rat