Questions and responses to the 100 plus days club members

Lyon · Posted: Thu Jun 12, 2008 4:14 pm Post subject:

Considering the situation you're dealing with, I wouldn't even fool with the email.

I'd phone and phone and phone and I'd be such a pain in the ass that they would either answer my questions or block my phone number.

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: 175

Thanks Bob.

I got a reply today and this is very odd. The reply did not pertain to ME. I put all the pieces of the puzzle together today and for some reason she has me in the MAESTRO trial and not the TERMS/OLTERMS study!

MAESTRO is MBP8298 not Tovaxin. Very different protocol.

When I questioned it, she admitted that she had her trials mixed up. That explains the confusing response from the doc in an earlier email.

It's sad when the sick patient has to keep track of all the "stuff."

I am documenting everything. Not sure whose attention I should bring this to, but I will bring it to someone's attention as I am not happy. And an unhappy me is not fun.

I don't want to make waves and get kicked from the trial but yet again I think the protocol is a two way street, right?
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Tovaxin Lab Rat

Loobie · Posted: Fri Jun 13, 2008 7:35 am Post subject:

You bet it's a two way street. You've given up a year and a half of potentially going with no medication. Now it's their turn. Your trial coordinator should be shot for thinking you are in another trial. The amount of organization that it takes to keep track of all your surveys and Integreview protocol papers and all your labs and that is enormous. I would tell your neuro. that you are absolutely ready to sue his ass if she doesn't get her shit together. Could you imagine getting ready to get dosed and they hang an infusion bag of BioMS stuff and didn't even order your drug from Opexa? That could've put you months behind since it takes a while to cull the cells and do their voodoo. Now I don't really think it would get to the point of ordering the wrong drug, but I'm just saying. And to boot she has caused you plenty of stress looking at another protocols' excluded drugs and what not as you are dealing with you recent downturn and trying to get over your infection.

I would be bordering on psychosis if that would have happened to me before the extension. I think I was bordering on being psychotic anyway if you go back and read my posts from December and January of last year. I'm really feeling for you. I know what you are saying. We pay these people a pantload of money (well our ins. companies do), we should expect better performance than that.

I really hope you get to feeling better. I almost think the added stress of getting everything in order to go into the extension is causing many of us to downturn right before we are going in to it. If things went the way it was explained in the beginning of the trial, none of this would be happening. But alas they don't seem to be.

Good luck with your sinuses, sinus infections are the worse when you already have to deal with your MS.

Take care,
Lew
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"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.'"

patrickm · Posted: Sat Jun 14, 2008 1:18 pm Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 175

I do believe the problem has been solved.

Smile

I have upped the klonopin to 1.5 mg, increased my water intake by double, and my legs seem to be settling down somewhat.

I am also going to see if I can switch back to Sinemet for the spasticity from the Soma. I did better on it even with the stomach upset side effects. I can deal with that.

I guess I should have started my own thread....sorry.
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Tovaxin Lab Rat

patrickm · Posted: Mon Jun 16, 2008 10:17 pm Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 175

Lyon · Posted: Tue Jun 17, 2008 4:29 pm Post subject:

patrickm · Posted: Tue Jun 17, 2008 5:58 pm Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 175

Lyon · Posted: Thu Jun 19, 2008 8:01 pm Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 175

Lyon · Posted: Sun Jun 22, 2008 6:42 pm Post subject:

Sweetyhide · Family Member Joined: Jul 21, 2004 Posts: 43

I have my first shot scheduled!
July 22nd.
Took long enough.
I am way off schedule and thought I would be coming up to enter the 100 day club by now. But all the WAITING, for whatever reason, has put me back a little.

I updated my blog and will continue to write there as best I can.
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~Sweety
Peace, Love and Potato Salad

Lyon · Posted: Fri Jun 27, 2008 7:19 am Post subject:

Congratulations Sweety! Despite the hold ups, you're getting close now.

I should have updated my wife's situation after her last trial appointment a few weeks ago but I wasn't sure what to make of the situation and it took me a while to get comfortable with it.

On the day of the appointment we were told that my wife was still producing mrtc's and they would make an appointment for the blood procurement, but the next day she got a call that Opexa hadn't been able to isolate mrtc's (I got the info second hand, so take it with a grain of salt) and that my wife had the option of any other treatment option of her choice OR being checked periodically to see if mrtc's can be detected at some point in the future.

Despite my realizing that an absence of myelin reactive t cells might be considered a good thing, being told that they can't make the vaccine for her was kind of a scary and uncertain situation.......uncertain whether or not "no" mrtc's really meant NO mrtc's were circulating in her system or if it really only meant that mrtc's were there but weren't detectible due to masking.

I guess the only thing that could make me completely comfortable about this situation is looking back on this time favorably in 20 years, but I also have to view it as a hopeful sign that my wife hasn't experienced any noticeable progression of disability since the start of the IIb, so there is the possibility that she was on the "real" Tovaxin through the trial and that the absence of myelin reactive T cells for that length of time created a situation in which she no longer produces them or alternatively her immune system might be remembering long term to eliminate mrtc's as they are created?

Of course, since I'm "into" the importance of plasticity, there is also the possibility that her MS and resulting damage continues ominously at a rate in which plasticity is able to it's job and keep her from noticing the damage as it accumulates.

At any rate, in the absence of being told anything good with certainty, she hasn't experienced any bad, which can be seen as reason for hope.

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