Tovaxin Open Label Extension Schedules

av8rgirl · Post by **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.

danny · Post by **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

Lars · Post by **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

Loobie · Post by **Loobie** » Sun Jul 27, 2008 4:27 am

I love your coordinator too! Man, I had to do all that pushy stuff myself!

av8rgirl · Post by **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!

Aggie03 · Post by **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

flipflopper · Post by **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.

Lyon · Post by **Lyon** » Thu Jul 31, 2008 11:50 am

JanethePain · Post by **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...

Lyon · Post by **Lyon** » Mon Aug 04, 2008 11:07 am

hmtucker · Post by **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

Lyon · Post by **Lyon** » Mon Aug 04, 2008 12:33 pm

flipflopper · Post by **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!

JanethePain · Post by **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.

Lyon · Post by **Lyon** » Tue Aug 05, 2008 12:29 pm

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Tovaxin Open Label Extension Schedules

Have not started extension study yet