Extension blood draw rescheduled!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby patrickm » Tue Mar 18, 2008 10:57 am

Loobie wrote:Tovaxin or not, I need to stop the bleeding!


Wow, Lou, I'm very sorry to hear all this. I can't imagine how frustrating this must be. I am happily surprised to find out that they'll dose even with a steroid intervention. I was assuming that it would put it all off for 1-2 months while we were dosed. I know we had to be off them for at least a month before they did the testing for round one, but maybe since they're already making your vaccine, that ceases to matter. VERY good news.

What does your neuro say? Has to have an opinion! My doc always tells me that the whole point is to take care of me first. I'd hope that would be the ground rule in your case as well.

Please keep us informed, hang in there and best of luck. We're all pulling for you.
:?

best,
patrick
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Postby Loobie » Tue Mar 18, 2008 11:40 am

Lo and behold,

I got my first shot dates! It's amazing how fast shit happens once you call Shannon. My shots are due to be stuck in me on April 2nd. I am elated to have something to look forward to. In the same phone call they let me know what they saw on my thoracic spine. Two new lesions as compared to my first spinal MRI, but neither one was enhancing. I guess that should tell me "old injury" or old damage. That's good news in a sense, but I guess I'm left perplexed as to what is causing my bilateral leg weakness that is fairly recent. I guess it could be like ON. The lesions can be old and not cause noticeable disfunction until later. I don't know, but I know when I get some real Tovaxin. The only thing that scares me a little is that my Dr. had told me that he was suspicious that I might be SP. Am I correct in assuming that you can progress in SP without GAD enhancing lesions? I've alwasy thought this since I've heard that SP is not inflammatory like RR. Hopefully someone can answer that for me because I don't want to be SP and getting ready to get a drug developed for RR. But what the hell, I now get to actually DO SOMETHING
to try and help me stop progressing.

Lew
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Postby patrickm » Tue Mar 18, 2008 11:58 am

4/2 still must seem like an eternity away but glad that you finally have a date and glad that they are sharing MRI info with you now.

I wonder if this confirms that you were on placebo, or if it's possible that the long vaccine vacation could also be responsible?

Anyway, glad you have a date and something to look forward to that removes the mind-bending uncertainty of it all.
p
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Postby Loobie » Tue Mar 18, 2008 12:12 pm

Thanks Patrick,

The MRI was actuallly one I got done through my neuro. based on what's been going on recently. It wasn't a study MRI, so they aren't sharing those, and they probably never will. I am relieved to get a date to mark on the calendar. I knew it had to be soon, but like I said before, the silence was killing me!
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Postby ssmme » Tue Mar 18, 2008 12:51 pm

Loobie,

I really feel for your predicament. It sucks to watch your condition worsen and you don't feel that there's anything you can do.

I know it isn't a cure but have you asked your neuro for some calming drug like Xanax. When I get extremely agitated, stressed, or whatever I take a very low dose (only 25 mg) and it takes the edge off without making me looped. I am no druggie and have taken 7 or 8 total pills since my dx in August, 2006.

Marcia
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Postby Lyon » Tue Mar 18, 2008 1:10 pm

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Postby Loobie » Tue Mar 18, 2008 4:41 pm

One other thing I forgot to add. They told me that I had, and I quote, a lot of arthritis in my spine. Now I had a spinal MRI when I was first diagnosed and they never mentioned that. So I guess I either got that in the last 7 years, they just didn't notice, or it's not as bad as "a lot". I don't feel anything in my back like that so I'm just not going to mention it and see if my neuro. brings it up. If he doesn't I'll "...and one more thing" him at the end of my 1ST :D DOSE APPOINTMENT IN TWO FLIPPIN' WEEKS 8O .
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Postby Lyon » Tue Mar 18, 2008 5:39 pm

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Postby patrickm » Tue Mar 18, 2008 6:19 pm

Was just crafting an update email out to friends and family and ran across this video Q+A on the Opexa site. Apologies if it's been linked here before, but there's definitely some interesting stuff there. I like the last one about how Tovaxin works vs. overall immune system suppression.

http://www.opexatherapeutics.com/videoQA.html

Also, I am just back from Austin and the big SXSW music conference/nightmare, and though I am from Texas, I just learned over the weekend that Barbara Jordan suffered from MS. I remember her in a wheelchair from the time I was little, but I guess I never knew why. Now I like her even more.
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Postby Loobie » Wed Mar 19, 2008 4:54 am

Pat,

The SXSW nightmare? Man you must have had to actually work there or something. I have a really good friend who got invited to play there about 8 years ago and I went down with him. As a music fan, I LOVED it. I especially loved how if anyone would play any SRV covers, they would get unplugged. How good is that? Are you in the music industry? I, of course, could not hang at a music festival now, but that was one of the better ones along with Bonaroo for me. Lots of blues and scorching guitars!

Bob,
I am familiar with ankylosing spondylitis. My mom told me that my father and my grandfather both had arthritis in their backs, so for now, I'm just going to ask about it and see if I can tolerate it ok (like I said, if they hadn't said anything, I would never have known if from any discomfort or anything). If my grandfather had it like my Mom said, he sure didn't show it, so I can only hope it is just there and won't get to the point where it's really affecting me. Like I said, I have 0 range of motion issues and 0 pain in my back so I hope it's just an overzealous MRI tech.
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Postby Lyon » Wed Mar 19, 2008 6:07 am

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Postby patrickm » Wed Mar 19, 2008 12:44 pm

Loobie wrote:Pat,

The SXSW nightmare? Man you must have had to actually work there or something. I have a really good friend who got invited to play there about 8 years ago and I went down with him. As a music fan, I LOVED it. I especially loved how if anyone would play any SRV covers, they would get unplugged. How good is that? Are you in the music industry? I, of course, could not hang at a music festival now, but that was one of the better ones along with Bonaroo for me. Lots of blues and scorching guitars!


Loobie,
Umm, it's a much, much different place now than it was 8 years ago, even 4 years ago. 150,000 people descend upon poor little Austin. Here's 6th St. last Friday night.

http://bp1.blogger.com/_An95IdGu92Y/R-FoQJD6r5I/AAAAAAAAABU/MZznNEqPt1c/s1600-h/sxswstreete.jpg

For some reason can't get this to work with an Img tag, so here's the link which does work.

We are a teeny flea on the butt of what's left of the music biz. Label link is here:

http://www.carrottoprecords.com/

I did see good music, but I can't say that it was worth it. Plus on Friday, it was 99F in the shade, which is where I was all day trying not to melt into a pool of Irish Texan butter.

Music is great. Heinous, drunken crowds not so much for me any more. To stray even further OT:
Antietam 4x (hey, they're on my label), Kaki King (sigh), Christian Kiefer, Hank IV, Yo La Tengo, Black Hollies, Valet, White Rainbow, Atlas Sound, Magic Christian, Stems, DiskJokke, Lindstrøm, Bjorn Torske, Anathallo (who were great), Gary Higgins, some wacky Japanese metal band named Ketchup Mania, and Carbon/Silicon (Mick Jones and Tony James) who I saw while I was just walking down the street and there they were playing.

So yeah, music was good but it still wasn't worth it.

Now back to your regularly scheduled MS.
p
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Postby ssmme » Wed Mar 19, 2008 1:26 pm

I just got off the phone with my neuro clinic. My neuro wanted me to know that my hematocrit level was low when they did the final IIb/first extension study Tovaxin visit and to let my PM know about it. I know it doesn't sound like much for most women of childbearing years to have a low crit but I haven't had a uterus since July of 2002. It's the first time since it's removal that my crit level has been low.

Does anyone have any idea what else could cause it to be low? I eat red meat (not every day but every week), take a multi-vitamin, etc. but am not sure what else to do. Does anyone think I should be worried? Could it have an affect on detecting MRTC's?

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Postby Lyon » Fri Mar 21, 2008 2:27 pm

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Postby Sweetyhide » Tue Apr 22, 2008 3:48 am

Was wondering where I should stick this bit of news. Looks like an approprate thread!

I am scheduled for the big blood draw Wed. 30th. Which puts me around June (or begining of July) for my first treatment.

Dont get me wrong, I am happy things are moving forward, but I am WAY off schedule. 3 months, maybe.
18 months since I started this new adventure waiting for this to come.
It's been a crazy ride to say the least.

Still keeping my fingers crossed that things go as planned.
~Sweety
Peace, Love and Potato Salad
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