injection# 2

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby JanethePain » Tue Aug 07, 2007 5:09 am

Lyon wrote: ... Hi Jane, Although it does make for a long day, because we live so distant our trial staff go out of their way to schedule everything into one day in order to cut down the trips we have to make. It sounds like that might be what your trial staff is also doing but maybe they didn't put it into words? Bob


Hiya Bob! I'm not so sure. I think that even the lab rats local to study sites have a 3-hour event. so to speak. I know for sure that on MRI day, it has to be absolutely first--even before I donate the gallon to Draculette.

I really do think, though, this won't be as tough on me once this heat wave breaks. Because although I drive up when it's relatively cool, it's an oven when I head back. Is cool weather on the way (sort of) for you all yet?
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Postby JanethePain » Tue Aug 07, 2007 5:15 am

Loobie wrote:Jane,

You should see if you can get your trial stuff done at the location I'm doing it at in Dayton. It would be a much shorter drive for you. PM me if you are interested and I'll give you the details of where I'm doing it.


Hiya Loob! :D Oh, I've been messing around with the idea of switching horses in mid-stream, believe me! The reason I'm schlepping up to Columbus is that they replied faster to my letters of inquiry (when the study decided it was okay for us 45+ to be enrolled!). This is probably what I get for jumping the gun!

But seriously, though, if I do have to consider a change of venue, I'm going to see if I can do it in Lexington, KY (another facility that enrolled later than the Columbus Crew). My mom lives in Lexington and the study site is pretty much a hop, skip and a jump from her house. :lol:

While I may not have to exercise this option, it's always good to have a couple of aces up the old sleeves.

THANKS for offering up Dayton! We have some VERY nice friends up that way--I like it a lot there! :)
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Postby Lyon » Tue Aug 07, 2007 6:51 am

Hi Jane,
Not only has it (sort of) cooled down but we are getting MUCH needed rain (14,000 acre forest fire in the UP right now) and more rain expected tomorrow.

It sounds like the situation might be a little different for you on injection day. Sounds like you are doing the driving. I drive there and back and my wife sleeps during the travel time. During her early morning MRI/long day of other things, I nap or read. On the trip home we try to stop someplace new or interesting to eat and try to make the trip an adventure.

We both take the entire day off from work so we are in no hurry and we have gotten to be friends with the clinic staff so although the day is long, it's not at all unpleasant.

You had a good idea regarding the motel, although I doubt you're going to get the study to pay for it. Why don't you rent a cheap room the night before....at least once to see if that makes the situation more enjoyable?

Bob



JanethePain wrote:
Lyon wrote: ... Hi Jane, Although it does make for a long day, because we live so distant our trial staff go out of their way to schedule everything into one day in order to cut down the trips we have to make. It sounds like that might be what your trial staff is also doing but maybe they didn't put it into words? Bob


Hiya Bob! I'm not so sure. I think that even the lab rats local to study sites have a 3-hour event. so to speak. I know for sure that on MRI day, it has to be absolutely first--even before I donate the gallon to Draculette.

I really do think, though, this won't be as tough on me once this heat wave breaks. Because although I drive up when it's relatively cool, it's an oven when I head back. Is cool weather on the way (sort of) for you all yet?
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Postby Lyon » Tue Aug 07, 2007 12:23 pm

Lars wrote:I have always found that the "no side effects" claim of Tovaxin seemed unrealistic and somehow too easy.
Hi Lars,
I'd forgotten this until now. On the day of my wife's last injection my wife asked the trial coordinator if the injection could be responsible for the tired, yucky feeling she gets afterwards. Being the self proclaimed Tovaxin expert I am, I quickly responded "all they are doing is shooting your own blood cells back into you, it will have no effect". The trial coordinator wasn't so sure and said (something to the effect of) "remember that the reasoning behind Tovaxin to cause a vaccine effect and possibly the vaccine reaction might have something to do with it".
Lars wrote:but can we expect that a disease breakthrough drug will have fewer side effects for every single participant than aspirin.
You're absolutely right Lars. Even though I've often heart phase I trials called the "safety" phase, in reality they are keeping a close eye on safety and efficacy in every phase of a trial. What you mention is probably the very reason for the number of registrants increasing with each phase.....learning things which hadn't come to come to light with smaller numbers of participants.
Lars wrote: I have wondered why there is no MRI after the first injection.
You DO have an MRI on injection day previous to being dosed every time don't you?

Bob
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Postby Lars » Tue Aug 07, 2007 3:43 pm

Bob,
I have had 3 MRI's so far. #1 was to qualify me for the study, #2 was to get baseline data, #3 was before my 1st injection. There was no MRI before injection #2. They start again with my next visit being injection #3.
I was very curious at the lack of MRI at injection #2 and asked my coordinator about it. I don't think she was quite sure why there wasn't one. Only Opexa knows for sure. I think there was a thread about this a while back and the thought (as I recall) is that there must not be anything dynamic to be expected in that first month.
I'm going to change my handle to: Who knows
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Postby Loobie » Tue Aug 07, 2007 3:45 pm

I'm done w/injections now and I distinctly remember two injection visits with no MRI. You have three after your last booster though. I had one today and another in October.
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Postby Lyon » Tue Aug 07, 2007 4:08 pm

OK, you guys have got me curious now. I'm going to have to look at my wife's schedule (which is pretty hard to decipher because we are combining appointments).

My memory is admittedly bad but it seems to me that we very seldom have gone to the trial neuro's office without first stopping at the main hospital for an MRI.

Those early morning MRI's stick in mind because I've been late getting there every time and it seems like we've been late more than three times.

Bob
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Postby JanethePain » Wed Aug 08, 2007 5:43 am

Lyon wrote:... On the day of my wife's last injection my wife asked the trial coordinator if the injection could be responsible for the tired, yucky feeling she gets afterwards. Being the self proclaimed Tovaxin expert I am, I quickly responded "all they are doing is shooting your own blood cells back into you, it will have no effect". The trial coordinator wasn't so sure and said (something to the effect of) "remember that the reasoning behind Tovaxin to cause a vaccine effect and possibly the vaccine reaction might have something to do with it".


That makes so much sense that I'm ashamed of myself for not even considering this! Apologies all around.

And, trying to extrapolate here, once upon a time, I had a bad reaction to a generic drug. I'd taken the un-generic with no problems and my doc and I decided that the difference in the INactive ingredients may have been the culprit. So I wonder if that might play a role, too?
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Postby Lyon » Wed Aug 08, 2007 12:20 pm

JanethePain wrote: That makes so much sense that I'm ashamed of myself for not even considering this! Apologies all around.
Cripes, no apologies necessary. I didn't think of it either. I guess maybe the yucky flu feeling might involving your body using a lot of resources to mount the defense against the detected invader and the vaccine effect would be.....using a lot of resources to mount a defense against the (newly) detected invader (despite the fact that in this instance the "invader" is self created, self reactive T cells).

JanethePain wrote:And, trying to extrapolate here, once upon a time, I had a bad reaction to a generic drug. I'd taken the un-generic with no problems and my doc and I decided that the difference in the INactive ingredients may have been the culprit. So I wonder if that might play a role, too?
Stranger things have happened, and that's one of the things the trials are intended to determine. I'm sure you do, but you do make the trial staff aware of it don't you?
Bob
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