bad news for Loobie

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bad news for Loobie

Postby Loobie » Thu Sep 11, 2008 1:44 pm

So I got my fifth shot today. I've been being kind of quiet on the Tovaxin thread because I just didn't have anything really concrete to report. Well at my EDSS evaluation, I'm back up to a 4; skipped right on through 3.5. Since I'm not having any "new" symptoms I was kind of hoping beyond hope, but the last week has just been more downward progression of my walking ability. I had to use the wall and was severely limping by the end of the "long" walk (500ft. is a long walk?..sheesh). I took my dose but me and my neuro. (who saw me after the shot) have decided that we are going to call it quits in this trial unless something ground breaking happens in the next couple of weeks.

I'm not getting new stuff, but the leg weakness is just getting worse and worse; I just can't look the other way anymore. I was holding on to the hope that nothing new meant no progression. But after we talked about the amount of progression I've experienced in two years and then put it out there that if this keeps up, where will I be in two more years. I just had to put my head in my hands for a bit. He is checking for me to see if I can get in the Campath study with Tovaxin so recently coursing through my veins. 75% get Campath, 25% get Rebif in this study. He says he is really liking what he is seeing in Campath studies. I don't know how you would not totally be able to tell the difference between Rebif and Campath. I mean one is every other day and the other is like Tysabri. That's kind of a question since I'm not sure about the schedule for dosage of Campath, but I know it's not every other day!

I can't believe I'm considering another trial, but at least there's no risk of 'flying naked'. As you have all heard me talk, I'm wanting to do HiCy. I just talked to Carrie and they are full until the first of the year. Maybe I'll just wait it out and hope it's not too late. I just feel like I got hit by a truck (because of the news, not the MS). I was hoping beyond hope that Tovaxin would be it for me. It doesn't appear to be so I can't go off and have a big ass pity party. I've got to move on and hope I slow this party down a little bit. I'll let you all know if I get in the Campath/Rebif thing. I think I'll know if it's Rebif since Avonex damn near killed me. But for now, 75% odds seem pretty good.

I need some love people. I'm not one to stay down in the dumps or feeling sorry for myself for very long (usually thanks to GWA :lol: ) and I don't plan on starting now. I was sitting next to a gal today at my site who was barely able to walk with a walker (she was getting Tysabri) and instead of really bumming me out, she really cheered me up (a little :? ) because we just laughed and joked and had a nice talk. It just made me feel like if that's my fate, I can be like that too. As long as I keep that attitude, maybe this won't steal my spirit. I just need to take a deep breath. I was already pre-planning this possibility anyway, but once it actually happened, it was more melancholy than what I envisioned. Maybe because I found out JH is full until '09.

Loob
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Postby patientx » Thu Sep 11, 2008 2:01 pm

I'm sorry to hear about your discouraging results. I've been looking into the Campath trial at the University of Maryland hospital (in Baltimore). I know they are actively recruiting. From what I have read about the trial, it is not blinded to the patient (though if I remember right, you aren't supposed to tell the doctors and nurses evaluating you). The Campath infusion is once a year over 5 days, while the Rebif is the standard 3 times a week. So you'll know which drug you are getting, though you won't find out until you start the trial.

I hope you can find something that works better for you.
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Postby Lyon » Thu Sep 11, 2008 2:23 pm

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Last edited by Lyon on Wed Jun 22, 2011 6:48 pm, edited 1 time in total.
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Postby flipflopper » Thu Sep 11, 2008 7:54 pm

I am so sorry to hear this Lew! When I first joined the Tovaxin trial, I was looking at Fingolimod, Campath and Tovaxin. Not only are there no trial sites near me doing the Campath study but I don't qualify for the Campath trial even if I was willing to travel (I've had ms for too long). If Tovaxin doesn't work for me, Campath would be something I would have considered if I qualified for that trial.


I wish you the best of luck in finding a treatment that works for you and I am sorry to hear that JH is full until 09

FF
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Postby Ant148 » Thu Sep 11, 2008 8:20 pm

sorry to hear about your situation, Loobie. i have a stupid question for you: have you been definitely getting the real Tovaxin all this time? in other words, is it not as foolproof as i imagined it to be and one can still go downhill even when getting the real thing? :(
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Postby Loobie » Fri Sep 12, 2008 4:12 am

Bob,

I did call Opexa regarding epitope shift, as did my coordinator. They won't do it right now. Something about not being set up to do that en masse until sometime next year. I don't know, the news coming out of them has been different somehow, like they are pissed at people or something. Maybe that's just me. Tim turned me on to the concept of that test, but apparently I'm still making MRTC's, because I've never been told different and they still keep making drug for me. I think I'll have a real heart to heart with my neuro. to make sure he does anything, if he can, that he can do to make sure I get the Campath and not the Rebif. Hell, I still need to get in contact with Rush in Chicago also to see if they are taking Revimmune patients. Chicago is actually closer than Baltimore for me, but it would have been nice for my Mom, who is doing this with me, to go back to her hometown of 'Balmur'.

Ant, I know that I've been getting the real thing since the extension started. I was the 10th person in the IIb and I've already been dosed with the real thing 5 times now. Like I said, a little bit of wait and see here, but I can't wait much longer. Tim had the 100 day thing put out there, but I also heard from him that it may take up to the 5th dose for some people. I have no earthly idea how he would know that, but that's the news I got. He seems to keep current on what the people are learning at Opexa. So to answer your question, I am going downhill on the real thing, but I only speak for myself. My neuro. has told me that he thinks I may be SP, so maybe that's why it's not having it's desired effect. Don't take what's happening to me as any indication of how it may work for you. I just don't think there's anything 'foolproof' for MS yet. One day maybe, we can only hope.
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Postby CureOrBust » Fri Sep 12, 2008 7:39 am

Loobie,

These are the two trials which they are currently recruiting for here in Australia, you can read the exclusion criteria.
CARE-MS I
CARE-MS II
I am excluded from both, because for one I have used rebif, and for the other I haven't used it long enough. Image They are both "Rater-Blinded" (ie the patient knows but the rater is blinded).

The study coordinator has told me that for other exclusion criteria, she has had approval from Genzyme, but they are being stricter on the Rebif treatment length. So it would be worth speaking to a study coordinator and checking if they could get an exception approved by Genzyme, if you need one.

As for the idea of double blinding with Rebif, for one of the FTY720 trials, there was a comparison of Rebif V's FTY720 (oral). The nurse told me that they gave both arms an oral treatment (one arm received sugar pills or such) and BOTH arms injected themselves 3 times a week, with the FTY720 arm injecting saline solution!
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Postby Lars » Fri Sep 12, 2008 9:48 am

Lew and All,
Anyone know when/if the 11b results are to be posted. It seems to me that the talk was September, it is September isn't it? Lew, I'm sad to hear of your difficulties but happy that you are still being pro-active.
Take Care,
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Postby flipflopper » Fri Sep 12, 2008 10:31 am

Lars, hmtucker posted an article on a thread called "Opexa Data Presentation ". The article says "top-line data from the company's Phase IIb study of Tovaxin® will be presented at the World Congress on Treatment and Research in Multiple Sclerosis in Montreal, Canada, on September 19, 2008". I can't wait to see what the results are
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Postby gwa » Fri Sep 19, 2008 8:27 pm

loobie,

Please look at Rebif research, some of which has been recently posted on thisisms. As I remember, Rebif is not doing much of anything for patients and was barely above placebo in efficacy.

The patients who have accomplished the most are either on RI or Campath. Some have also had luck with the antibiotics.

Here is a glass of red wine being toasted (and drunk) to your making the right decision. Try to stay calm until you are ready for the next med chapter in your struggle.

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