Extension blood draw rescheduled!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Loriyas » Tue Mar 04, 2008 5:13 am

I will see what I can do!!!

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Postby Lars » Sun Mar 09, 2008 5:22 am

Bob.
Both feet numb to the knees, both hands numb. I can happen and unless I have a new undiscovered numb disease, it is ms.
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Postby Lyon » Sun Mar 09, 2008 7:57 am

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Postby Lars » Mon Mar 10, 2008 7:05 am

Hi Bob,
I am gathering by the nature of your latest posts that your wife's original good results are in question. I hope for you both (and all of us) that this is just a small downswing and that things will soon improve. We don't want you guys on the "I think I'm on placebo" team. Maybe I can offer this; I am numb on a considerable part of my body and I did have a big time attack at the end of last year. I was also absolutely convinced I was a PP (placebo patient), now I'm not so sure. I have felt pretty OK over the past few months. I am trying to take the high road and give Tovaxin a break. Better in any way is something I haven't experienced in years. Maybe our expectations are too high.
Be well,
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Postby Loobie » Mon Mar 10, 2008 7:35 am

Good point my friend,

Not having lofty expectations could take a bit of the hurt out of the drop to reality, which may happen since none of us really know what to expect. Like I said, I almost hope I find out I'm on the real since then I will know it works about as good for me as water. That way I can move on. However, I also hope that my shots (which are said to be due by month's end; I'm not holding my breath) do some good since I am also looking for a little break. This shit is flat wearing me out.
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Postby Lyon » Mon Mar 10, 2008 11:23 am

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Postby patrickm » Mon Mar 10, 2008 1:11 pm

Lyon wrote:Tim had mentioned this aspect many times in the past and had mentioned that people who had been on the real treatment could actually experience disease/symptom progression during treatment lapse but I guess I didn't think that would really happen. Tim also pointed out that even after dosing begins in the extension, full protection won't be achieved until around the third dose so we are anxious to get to that point!


My last shot was in December and just doing my cyphering, I probably won't get my first shots of the extension until December 2008, with the third dose presumably coming in April 2009. That might as well be forever and on the moon from where I sit. :?

I keep reminding myself that I signed up for this, and that while this sucks, the alternatives are less than awesome—though a 6 month regimen of chelation therapy in Cabo sometimes sounds like a winner. Well, at least the sunshine part of it. I have a lot of books and DVDs to get through.

Saw my doc again on Friday (Have your pencils and scorecards ready...for Visit 15), and he basically told me to a) get off my ass and exercise a bit to help out the remyelination, and b) suck it up, though in friendly and roundabout manner. Fair enough.

The nurse said that they have a patient ready to go into the TERMS extension and still haven't gotten all of the info on it yet, but they're expecting it "next week." Sound familiar?

Thanks for posting your thoughts and feelings here. I haven't had much to say lately but I have been reading weekly and following and rooting for everybody. Just so busy and exhausted by work that I have little time and energy for much of anything else.

Hang in there gang.

best,
patrick
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Postby patrickm » Mon Mar 10, 2008 1:16 pm

In addition, I have no idea whether I'm on placebo or vaccine. That did come up in our meeting and my thoughts are that of course I want to be on placebo because then I can hope that I'll feel better when I'm on vaccine.

Dr. Wynn's response was that the implication of every medication is that it will help make you feel better, even ED meds, hell maybe ESPECIALLY ED meds. As Tim has said, that's not the point of Tovaxin. It's to help keep you from feeling worse by preventing relapses. The rest is on our body and/or any remyelination meds that they come up with down the road. Thus the exercise recommendation.

OK. Back to work.

Patrick
--wondering if he'll be able to concentrate on a single task from start to fruition ever again.
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Postby Lyon » Tue Mar 11, 2008 5:16 am

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Postby schnittke » Tue Mar 11, 2008 5:30 am

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=1312

Opexa Therapeutics, Inc, today announced that the independent Data Safety Monitoring Board (DSMB) of its ongoing 150-patient Phase IIb safety and efficacy study (TERMS) of Tovaxin in multiple sclerosis recommended that the trial be continued as scheduled.

Opexa’s Data Safety Monitoring Board is an independent group of multiple sclerosis experts which is responsible for monitoring the ongoing safety and conduct of the study. At each DSMB meeting, the board may recommend continuing the trial unmodified, continue the trial with modifications or discontinue the trial.

The DSMB meeting reviewed 28-week data for approximately 50% of the patients in the study. The DSMB noted in their report very few dropouts and that the study appears to be proceeding well. In addition, the report indicated that baseline MRI data is consistent with the assumptions used in the design of the study. Edward Fox, M.D., Ph.D. commented, "As the lead investigator of the TERMS trial, I continue to anticipate the conclusion of this experimental protocol, which has been designed to evaluate the efficacy, tolerability, and safety of Tovaxin in the treatment of patients in the early stages of Multiple Sclerosis
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Postby Lyon » Tue Mar 11, 2008 6:00 am

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Postby patrickm » Tue Mar 11, 2008 6:21 am

Lyon wrote:Despite everything else I haven't lost any confidence that the Tovaxin IIb is going to provide the good results we originally expected, but things just aren't going quickly enough...
<snip>
but the truth is that just a few years ago there wasn't a damned thing you could do about MS but to prepare yourself for a life that was drastically different than you'd previously imagined. For the vast majority of people diagnosed with MS that's still the case...
<snip>
I suppose it's important to view the present with it in mind that a year from now our current apprehension will be a non issue.


Yep on all accounts. I remember back in Dec. 2006 when Dr. Wynn sketched out all of my options and then flipped the paper over to a blank side and said that "15 years ago these would be your options." So there's always something to be thankful for (and apparently something to whine about)...

BUT DAMN I HATE THIS DISEASE AND HOW IT MAKES ME FEEL.

<exhale>

ahh. There. That's better.

Rolling the bones on potentially another year off from effective medication was an eye opener for me this week and part of me wishes that I hadn't done that math, frankly.

In the good news dept, Blue Cross of IL finally come through for me for my appeal for the extra 1500mg of Provigil that I need to make it through the month. Stretching meds that make you functional hasn't been too fun and now I shouldn't have to worry about that.

Back to not thinking about my MS for a while, at least until the afternoon doldrums hit.
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Postby Loobie » Tue Mar 11, 2008 7:05 am

If you read about, oh 50 of my posts from last year, you will see that I was also second guessing myself to death since I went in with hardly any progression and then boom, once the trial hit, I started having more disease activity. If MS has nothing else, at least it has impeccable timing 8O .
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Postby MaggieMae » Tue Mar 11, 2008 8:30 am

I have to disagree that there was nothing 15 years ago. My husband has had MS for over 30 years. Depends on the doctor, just as it does today. The first neurologist he saw in 1975 had no hope, the second neurologist in 1997 was aggressive with ACTH and even wanted my husband to try Imuran. We decided against the Imuran because he always came out of the attacks after a round of ACTH. That was a big mistake because 20 years later the progression to Secondary Progressive began. The third neurologist (2nd passed away) wasn't aggressive because the thinking at that time (1990) was that prednisone in smaller amounts for longer span was just as good as higher doses for shorter times. I don't agree from my husband's experiences. Now that thinking has changed too. My husband is now seeing his fourth neurologist.

Still wish today that he would have taken the Imuran. Read some good research on it.

Some things never change. You want the doctor that is aggressive; who doesn't follow the norm. If my husband had not changed to the neurologist who used ACTH, he would have lost his ability to walk (and much more) many years earlier.
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Postby Lyon » Tue Mar 11, 2008 11:51 am

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