Extension blood draw scheduled!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Extension blood draw scheduled!

Postby Loobie » Tue Dec 18, 2007 5:43 pm

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!
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Postby Lyon » Tue Dec 18, 2007 6:21 pm

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Postby sh8un » Wed Dec 19, 2007 12:28 am

hey
thanx for the update. i hope that it will go well for you. i am happy that you are excited.
NN
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Postby Loobie » Wed Dec 19, 2007 5:44 am

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.
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Postby Lars » Thu Dec 20, 2007 8:42 am

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
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Postby Loobie » Thu Dec 20, 2007 11:13 am

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.
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Postby TWG » Thu Dec 20, 2007 11:14 am

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!!
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Postby ssmme » Thu Dec 20, 2007 3:49 pm

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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Postby Lyon » Thu Dec 20, 2007 5:45 pm

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Postby Loobie » Fri Dec 21, 2007 6:10 am

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.
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Postby Lars » Fri Dec 21, 2007 8:41 am

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
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Postby av8rgirl » Sun Jul 13, 2008 10:20 am

Lars wrote: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


I realize this is an old thread, but wanted to bring it back up to discuss.

I get the "no sharing of info" and no talking about others in the trial at my site. They won't answer questions and I've been told not to discuss openly on any forums about the trial.

You are lucky Lars that your doc and staff will be open and honest with you. I can't get anything. This site has been the best place for me to ask questions and get answers.

Like I said in my other post, I feel alone.

I too started in this trial for the extension study, for selfish reasons as well (I have failed everything else and I am looking for something to help treat the MonSter disease), and to help find something to treat this disease for others.

I am a little frustrated right now as I feel like that cartoon of the mushroom....in the dark ...
“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 Loobie » Mon Jul 14, 2008 4:43 am

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.
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Postby Lyon » Mon Jul 14, 2008 5:06 am

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Postby av8rgirl » Mon Jul 14, 2008 6:47 am

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.
“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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