Tovaxin Open Label Extension Schedules

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Thu Jul 24, 2008 6:02 am

Lars wrote:Mike,
Lars is Myelin reactive, awaiting procurement date. I can assure you that if Lars were not reactive, he would be waiting for a IVSM shipment tomorrow followed by a call to JH.
Lars


Congratulations Lars! I hope your procurement appt is scheduled quickly.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
User avatar
av8rgirl
Family Elder
 
Posts: 216
Joined: Thu Apr 03, 2008 2:00 pm

Advertisement

Have not started extension study yet

Postby danny » Sat Jul 26, 2008 11:48 am

Hello, in another area Lars wondered if there were others who have not started the extension study yet, I have not. Opexa is coming to the research center where I go for a site visit the first week of August to go over the protocol with the team. They told me to expect a start the end of August. I have not had another large blood draw yet but was told I would be in the study. I have not posted info because I am waiting to know for sure if I will be or not (MRTCs); the whole idea of being in this study was the part about getting the real tovaxin in the second part of the study. Danny
User avatar
danny
Newbie
 
Posts: 3
Joined: Thu Sep 06, 2007 2:00 pm
Location: Florida, USA

Postby Lars » Sat Jul 26, 2008 2:22 pm

Danny,
Thanks for posting. I think I can speak for all of us in saying, the more input and contact with other trial members the better. Have you had your 1st extension visit yet, i.e. the MRTC draw? How did the 11b year treat you? Good to hear from you and stay in touch.
For the general listening audience, I called my coordinator immediately after getting my MRTC results and asked her to try and work out the "big draw" when I was going to be in Denver on the 14th of August. I received and e-mail hours later written by my coordinator to Opexa stressing the importance of making this work and a return e-mail from Opexa saying they would make it work. I love my coordinator!
Be Well,
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 3:00 pm
Location: Durango, Co

Postby Loobie » Sun Jul 27, 2008 4:27 am

I love your coordinator too! Man, I had to do all that pushy stuff myself!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby av8rgirl » Mon Jul 28, 2008 4:57 am

I do, too. It seems that every time I ask a question, I get chastised. It sure is different at every trial site. Now I am not even allowed to ask anything for fear of getting kicked out of the study. :(

Thanks for posting Danny. I too am curious about your experience and if you have had more than one blood test for MRTCs for the extension study. Welcome!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
User avatar
av8rgirl
Family Elder
 
Posts: 216
Joined: Thu Apr 03, 2008 2:00 pm

Postby Aggie03 » Mon Jul 28, 2008 6:36 pm

Lars,
That's why I miss good ole DD the best site coordinator out there.

(notice I put ole and not old, she would find me in TX and kill me for that) :)


Brad
User avatar
Aggie03
Family Member
 
Posts: 31
Joined: Mon Apr 28, 2008 2:00 pm
Location: Wylie, TX

Postby flipflopper » Thu Jul 31, 2008 11:01 am

Mike, when you get a chance, could you put "awaiting procurement" back next to my name?



My trial coordinator called me at the end of last week to tell me that she was cancelling the appointment I had this week. She told me that Lifeblood informed her that they should be able to come to me for my procurement visit instead of me going to my trial site. Hence, I go back one step. I am still waiting for Scott to give me a call to schedule an appointment for my procurement visit.







Lars wrote:For the general listening audience, I called my coordinator immediately after getting my MRTC results and asked her to try and work out the "big draw" when I was going to be in Denver on the 14th of August. I received and e-mail hours later written by my coordinator to Opexa stressing the importance of making this work and a return e-mail from Opexa saying they would make it work. I love my coordinator!




Wow Lars, I think you will have your procurement visit before me. My last appointment for the phase IIb trial was in the first week of May.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 3:00 pm

Postby Lyon » Thu Jul 31, 2008 11:50 am

..
Last edited by Lyon on Wed Jun 22, 2011 2:27 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby JanethePain » Mon Aug 04, 2008 3:35 am

Lyon wrote:Still waiting here too!

I said my wife isn't in a big hurry but for crying out loud, in all this time we haven't even heard when procurement is going to be, and then there is a long wait for the vaccine after that!

Bob


You bet a "long wait!" ::: drumming fingers::: I'm already twelve days past that ten-week mark! Grrrr...
Jane the Pain
User avatar
JanethePain
Family Elder
 
Posts: 223
Joined: Wed Jun 13, 2007 2:00 pm
Location: Historical Glendale, OH: Home of the Squirrrels

Postby Lyon » Mon Aug 04, 2008 11:07 am

..
Last edited by Lyon on Wed Jun 22, 2011 2:27 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby hmtucker » Mon Aug 04, 2008 12:27 pm

Lyon wrote:My wife has been very patient, but she mentioned last night that it's been weeks and weeks and she hasn't even heard anything farther regarding a blood procurement date, not to mention the long wait after that for the first injection. Someone needs to get it together because that's just too long and too inconsiderate to expect people to endure.


Bob,

If I were you I would be on the phone daily leaving a message on Shannon Inman's phone at Opexa (281-272-9331 x3405) especially since this is nothing more than paperwork and scheduling for Opexa and Lifeblood to take care of business. This is not how it should be but in my case after making calls to Shannon I received prompt action on MRTC test results and procurement scheduling as well as info regarding my first injections.

Something to think about,
Mike
User avatar
hmtucker
Family Elder
 
Posts: 100
Joined: Tue Nov 28, 2006 3:00 pm
Location: Versailles, Kentucky

Postby Lyon » Mon Aug 04, 2008 12:33 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:27 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby flipflopper » Mon Aug 04, 2008 3:16 pm

I am still waiting and I did all these things. When I didn't get the results of my MRTCs test after more than 2 weeks, I left a message to Shannon Inman. I believe I left her a message on a Friday night and the following Monday, I received an e-mail from my trial coordinator telling me that lifeblood will contact me soon and my procurement visit should take place in the next two weeks.


Then, finally, Lifeblood gave me a call. Scott saw that it would be more practical for me if he could get someone to come to me instead of me going to my usual trial site (which is far away) so he said he would try to see if that could be done.



Since I received the MRTCs test results, I have been told that my procurement visit would take place in the next 2 weeks every two weeks for months! I have been told this mostly by my trial coordinator but a few times by Lifeblood. I promised friends from out of town that I would go visit for 1-2 weeks this spring/summer but I still have not made any plans since I am constantly told that my procurement visit will be next week or the week after. We are now in August!



I told my coordinator that while I immensely appreciate that Lifeblood is trying to come to me instead of meeting me at my usual trial site (that does make my life a lot easier), I might rethink the whole thing if I have to wait months to have my procurement visit. She said that it shouldn't make a big difference and she told me again that my procurement visit should take place very soon.



I'm a little annoyed so this post is simply to vent. I won't mind any of this (and I will feel extremely lucky to be in this trial) if Tovaxin publishes great phase IIb results but today I'm a little annoyed!



I hope your wife will have her procurement visit soon Bob!
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 3:00 pm

Postby JanethePain » Tue Aug 05, 2008 11:47 am

flipflopper wrote:... I'm a little annoyed so this post is simply to vent. I won't mind any of this (and I will feel extremely lucky to be in this trial) if Tovaxin publishes great phase IIb results but today I'm a little annoyed!...


I try to keep my "grateful" face front and center, too, but I'm lately getting worried (as well as annoyed). I mean, sheesh, guys, we're probably less than a year from the start of Phase III. Phase III means a LOT of lab rats in the equation (I was once told "5000" or so). If Opexa is this (seemingly) overwhelmed with 150+ (our gang and the first batch with Our Very Own Tim) of us... can you imagine the snafus when they rev up for Phase III?!?!

Okay, that's enough fear-mongering for one afternoon. I need some medicinal Cheetos.
Jane the Pain
User avatar
JanethePain
Family Elder
 
Posts: 223
Joined: Wed Jun 13, 2007 2:00 pm
Location: Historical Glendale, OH: Home of the Squirrrels

Postby Lyon » Tue Aug 05, 2008 12:29 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:28 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

PreviousNext

Return to Tcelna (Tovaxin)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service