I hadn't noticed that post earlier but she was signed in as a guest and I haven't seen her since so I guess I won't add her to the list just yet.
Bob
CureOrBust wrote: and I think we have a new name for the list in the first post. welcome.
TOVAXIN ROLE CALL
My wife got retested 1/31. So far, she left multile messages at the office, no one has called back.
She is of the attitude that if it was positive, they would have called. I am more of the opinion that some other delays may be going on.
Anyone have similar delays out there? Or, is it just a case of unconcerned/irresponsible/coldhearted attitude?
She is of the attitude that if it was positive, they would have called. I am more of the opinion that some other delays may be going on.
Anyone have similar delays out there? Or, is it just a case of unconcerned/irresponsible/coldhearted attitude?
Hi Gary,
I don't know what state you are in but here in Michigan we've experienced numerous delays and exactly what you are experiencing.
On a personal basis the people are really nice and helpful and although it doesn't make it any easier I have to think the situation is what they've told me that it is. That taking on clinical trials is an added source of income they seek but it's also in addition to the workload of their normal duties.
Additionally, although people like Lew have already been treated several times, some states are still getting things around. My wife is the first in Michigan and has yet to be treated, so everything we we do is the first time for everyone involved and it's time consuming.
Keep calling and try emailing the coordinator because you deserve some kind of explanation.
Bob
I don't know what state you are in but here in Michigan we've experienced numerous delays and exactly what you are experiencing.
On a personal basis the people are really nice and helpful and although it doesn't make it any easier I have to think the situation is what they've told me that it is. That taking on clinical trials is an added source of income they seek but it's also in addition to the workload of their normal duties.
Additionally, although people like Lew have already been treated several times, some states are still getting things around. My wife is the first in Michigan and has yet to be treated, so everything we we do is the first time for everyone involved and it's time consuming.
Keep calling and try emailing the coordinator because you deserve some kind of explanation.
Bob
gkalman wrote:My wife got retested 1/31. So far, she left multile messages at the office, no one has called back.
She is of the attitude that if it was positive, they would have called. I am more of the opinion that some other delays may be going on.
Anyone have similar delays out there? Or, is it just a case of unconcerned/irresponsible/coldhearted attitude?
Hello Lyon and all,
I started wondering where the heck those involved with the Tovaxin trials have been hiding. I haven't been able to find more than a few people throughout the web with the exception of timswellness which seems to be everywhere. I thought of starting a site to corral the volunteers but couldn't figure out how to locate them. In other words, glad I found you. I am to go for bloodwork on 3/23/07 in Colorado Springs. I must admit to some feelings of guilt for just starting when I know many are nearing completion and are anxiously awaiting info regarding drug vs. placebo.
I'll try to post as this rolls along.
Thanks,
Lars
I started wondering where the heck those involved with the Tovaxin trials have been hiding. I haven't been able to find more than a few people throughout the web with the exception of timswellness which seems to be everywhere. I thought of starting a site to corral the volunteers but couldn't figure out how to locate them. In other words, glad I found you. I am to go for bloodwork on 3/23/07 in Colorado Springs. I must admit to some feelings of guilt for just starting when I know many are nearing completion and are anxiously awaiting info regarding drug vs. placebo.
I'll try to post as this rolls along.
Thanks,
Lars
Hi Lars,Lars wrote:I started wondering where the heck those involved with the Tovaxin trials have been hiding. I haven't been able to find more than a few people throughout the web with the exception of timswellness which seems to be everywhere.
First, welcome to the site. I'm glad you found us. Actually, a few more potential Tovaxin IIb entrants have popped in than I have listed on the first post of this thread. But they popped in because they have websites, regarding the clinical trial, that they wanted us to view and I haven't seen them come around again. The last time I checked out his website, one of them..Chris, hadn't produced the necessary mrtc's.
Actually no one is nearing completion. My wife is the first person in Michigan to go through the process and would have had her first treatment the first week in April but we had vacation planned. I don't know if she'll still be the first person in Michigan to receive treatment but she's rescheduled for April 25th.Lars wrote: I must admit to some feelings of guilt for just starting when I know many are nearing completion and are anxiously awaiting info regarding drug vs. placebo.
This keeps coming up but I want to stress that it's most likely that no one will ever be officially notified whether they were on placebo or Tovaxin during the first year of the trial.are anxiously awaiting info regarding drug vs. placebo.
Welcome to the site, good luck and I look forward to hearing how things are going!
Bob
Lyon,
Thanks for the clarifications. I was already told by my Dr. that we would likely never know what we were on. It really doesn't matter to me, it was all part of the decision. It's just that I read a few post that really seemed compelled to find out. I suppose it is inevitable to be curious. To edit my post a bit, my first date is 3/27/07 and I really wish I knew what my hours plus GMT is. I'll do a search!
Thanks for the clarifications. I was already told by my Dr. that we would likely never know what we were on. It really doesn't matter to me, it was all part of the decision. It's just that I read a few post that really seemed compelled to find out. I suppose it is inevitable to be curious. To edit my post a bit, my first date is 3/27/07 and I really wish I knew what my hours plus GMT is. I'll do a search!
Absolutely. I would think that anyone with the LEAST bit of curiousity would be trying to find some kind of sign.Lars wrote:It's just that I read a few post that really seemed compelled to find out. I suppose it is inevitable to be curious.
This is a good site to determine that http://wwp.greenwichmeantime.com/time-zone/ Of course, click on "USA" and then "Colorado".Lars wrote: To edit my post a bit, my first date is 3/27/07 and I really wish I knew what my hours plus GMT is. I'll do a search!
Bob
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Loobie
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I did get clarification on whether you would find out or not from my coordinator. You can go into the extension if you want, but no one will find out until the Phase IIb is over. One of the things that has helped "speed" my trial along is that the neuro. I go to has an infusion clinic in his office. So he is already staffed with a research coordinator and a research/infusion nurse. That keeps the Dr.s from having to do all the protocol.
Bob is right in that you should email the hell out of the coordinator. They seem to have very limited time to get to on the phone, but email is at their leisure so I have had much better luck going that route. The mind *@#% of being in this trial continues for me. I have no idea whether or not I'm on it and now I really don't "care". I say that because I hope I'm NOT on it right now. I have been pretty stable (have had 4 doses so far), but some new stuff crops up but doesn't stick so I haven't been posting on it.
My balance and leg strength seem to be on the decline recently, but the numb feet and tingling legs have pulled back a bit. I hope I'm not on it because I'm staying pretty stable right now through taking care of myself very much. I quit my high stress job (that was hard being the only income and it was a big bucks job) and am feeling better at work and sleeping better. Could that be results? I don't know, but if I'm not on it and maintaining, then I really look forward to being on it and hopefully seeing some repair. Be well and good luck getting started!
Bob is right in that you should email the hell out of the coordinator. They seem to have very limited time to get to on the phone, but email is at their leisure so I have had much better luck going that route. The mind *@#% of being in this trial continues for me. I have no idea whether or not I'm on it and now I really don't "care". I say that because I hope I'm NOT on it right now. I have been pretty stable (have had 4 doses so far), but some new stuff crops up but doesn't stick so I haven't been posting on it.
My balance and leg strength seem to be on the decline recently, but the numb feet and tingling legs have pulled back a bit. I hope I'm not on it because I'm staying pretty stable right now through taking care of myself very much. I quit my high stress job (that was hard being the only income and it was a big bucks job) and am feeling better at work and sleeping better. Could that be results? I don't know, but if I'm not on it and maintaining, then I really look forward to being on it and hopefully seeing some repair. Be well and good luck getting started!
Hi RS-Girl,
Welcome to the site and welcome to the club!
You probably are already aware but the lack of site reaction means nil as far as whether you're getting Tovaxin or placebo. Any site reaction someone has only reflects the trauma of having a needle inserted into their skin
I'm going to add you to the others on the first posting of this thread before I forget, but if you don't want me to please let me know and I'll remove you.
Again, welcome and best of luck!
Bob
Welcome to the site and welcome to the club!
You probably are already aware but the lack of site reaction means nil as far as whether you're getting Tovaxin or placebo. Any site reaction someone has only reflects the trauma of having a needle inserted into their skin
I'm going to add you to the others on the first posting of this thread before I forget, but if you don't want me to please let me know and I'll remove you.
Again, welcome and best of luck!
Bob
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IHaveMS-com
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Hi RS-Girl,
I will post in a couple of paragraphs from another thread about injection site reaction. Best wishes to you on being in the trial.
Many, if not all of you, are looking for some kind of sign, feeling, or reaction. On 4/30/07 I received my 15th treatment of Tovaxin, and I have never had any redness at the injection site caused by a reaction to the vaccine. I have seen many posts where people who are getting into the current study are hoping to see redness at the injection site, and I am concerned that if someone in the study does not see redness at the injection site, they will assume that they are in the placebo group. It should be obvious from my experience that people in the study could see redness caused by a reaction to the Band-Aid or see redness caused by a reaction to the vaccine. The vast majority of patients should not see anything. If you know someone who is in the current study, please point this out to him or her.
I had one false alarm about an injection site reaction. I thought I had an injection site reaction and posted it on my website. It turned out that the redness was caused by a reaction to the Band-Aid. Unfortunately, so many people read that before I went back and corrected the post that it has become imbedded in many people's mind that they must have an injection site reaction or they are in the placebo group. I have never felt anything after receiving an injection, nothing on the day of the injection, nothing on the next day, nothing different at all. If you are expecting to feel different or notice sometime, I am afraid you are going to be disappointed.
It typically takes 3 treatments of Tovaxin to bring the MRTCs down to zero or near zero. Until the number of MRTCs is reduced to near zero, they are still floating around and possibly nibbling at you myelin. It is possible that the memory white blood cells that produce the MRTCs might decide to produce several million and overwhelm the vaccine produced T-cells that eliminating the MRTCs. In that event, you might experience a slight attack, only a guess. The attacks should stop when the MRTCs have dropped to zero.
I will post in a couple of paragraphs from another thread about injection site reaction. Best wishes to you on being in the trial.
Many, if not all of you, are looking for some kind of sign, feeling, or reaction. On 4/30/07 I received my 15th treatment of Tovaxin, and I have never had any redness at the injection site caused by a reaction to the vaccine. I have seen many posts where people who are getting into the current study are hoping to see redness at the injection site, and I am concerned that if someone in the study does not see redness at the injection site, they will assume that they are in the placebo group. It should be obvious from my experience that people in the study could see redness caused by a reaction to the Band-Aid or see redness caused by a reaction to the vaccine. The vast majority of patients should not see anything. If you know someone who is in the current study, please point this out to him or her.
I had one false alarm about an injection site reaction. I thought I had an injection site reaction and posted it on my website. It turned out that the redness was caused by a reaction to the Band-Aid. Unfortunately, so many people read that before I went back and corrected the post that it has become imbedded in many people's mind that they must have an injection site reaction or they are in the placebo group. I have never felt anything after receiving an injection, nothing on the day of the injection, nothing on the next day, nothing different at all. If you are expecting to feel different or notice sometime, I am afraid you are going to be disappointed.
It typically takes 3 treatments of Tovaxin to bring the MRTCs down to zero or near zero. Until the number of MRTCs is reduced to near zero, they are still floating around and possibly nibbling at you myelin. It is possible that the memory white blood cells that produce the MRTCs might decide to produce several million and overwhelm the vaccine produced T-cells that eliminating the MRTCs. In that event, you might experience a slight attack, only a guess. The attacks should stop when the MRTCs have dropped to zero.
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.
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.
Thanks for the heads up.
After talking with my study assistant, I am the second person in my area to receive the injections. I jumped two other people, it turns out my cells were ready faster than theirs were. <shrug>
My next trip is scheduled for June 19th, hopefully they won't have *new* people injecting me again.
After talking with my study assistant, I am the second person in my area to receive the injections. I jumped two other people, it turns out my cells were ready faster than theirs were. <shrug>
My next trip is scheduled for June 19th, hopefully they won't have *new* people injecting me again.
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IHaveMS-com
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Hi RS-Girl,
Being able to grow your cells quicker means it is easier to make vaccine for you. My cells also grow quickly.
Being able to grow your cells quicker means it is easier to make vaccine for you. My cells also grow quickly.
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.
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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IHaveMS-com
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No, those are 2 different situations. When cells are grown for vaccine, they are expanded out in the lab. Younger patients seem to have cells that like to multiple faster than an older individual's cells. I have not seen any study demonstrating a direct correlation between age and cell expansion.
A person who has active MS has memory white blood cells that are actively producing MRTCs.
A person who has active MS has memory white blood cells that are actively producing MRTCs.
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.
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.