Termination Appt. and What Did You Switch To

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby patientx » Tue Jan 20, 2009 1:07 pm

Sorry, that was addressed to Marcia. It sounds like she has contact with her neuro fairly often.
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Postby ssmme » Wed Jan 21, 2009 9:09 am

That clinic sounds awesome. I'm curious - when you were in the Tovaxin trial and even now, do you see your neurologist every time you go in?


I do see my neurologist every time I go in. Since the alemtuzamab trial is blinded to the neurologist I will still see my regular doctor except for the study neurological exams. Those will be completed by the blinded doctor. Luckily there are multiple neurologists on the staff so it's not really a problem. What's really nice is that even when I go in just to see the research staff my regular doctor usually pops in just to say hi and see if everything's good if he's there that day and not on rounds at the hospital. I have never ever felt that my doctor was in a rush to get me in and out. That actually goes for everyone that works there. If I have to wait they'll offer me bottled water or if I'm there for an extended period like for IV steroids or for clinical trial appointments they offer me lunch, snacks, etc. Gee, I guess I am lucky. I thought all neurologists offices were like mine till what I hear from other people.

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Postby patientx » Wed Jan 21, 2009 11:27 am

I haven't been at this very long, but I haven't received near that level of attention. I'm starting to think a move to Lexington may not be a bad idea, just to go to that clinic.
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Postby JanethePain » Wed Jan 21, 2009 1:47 pm

patientx wrote:I haven't been at this very long, but I haven't received near that level of attention. I'm starting to think a move to Lexington may not be a bad idea, just to go to that clinic.


IF we get to re-start The Big T, I'm going to see if I can switch there. My mom lives all of five minutes away from the site. If I hadn't been so doggoned impatient, I probably would have been there... but I didn't think Kentucky would offer a trial site. So I jumped on the first "take" I got--although I ended up loving the Columbus gang, it WAS pain in the keester having to make such a trip each and every time!
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Postby patientx » Wed Jan 21, 2009 7:45 pm

You know, I briefly thought about whether it might be a good idea to move, to be near a good MS center (with the right clinical studies). The problem I have is that all my family lives near where I am now.
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Postby JanethePain » Thu Jan 22, 2009 7:20 am

patientx wrote:You know, I briefly thought about whether it might be a good idea to move, to be near a good MS center (with the right clinical studies). The problem I have is that all my family lives near where I am now.


And you sure DO need the support of family if/when the Tovaxin Gang sends Dracula/-ette to get your Bag o' Blood! :wink:
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Postby patientx » Thu Jan 22, 2009 9:45 am

I was considering the move when I was looking into the Campath trials. But seeing how the infusions could put me out of commission for a week or more, I figured I would need some help around.
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Postby Loobie » Thu Jan 22, 2009 12:41 pm

JanethePain wrote:
patientx wrote:I haven't been at this very long, but I haven't received near that level of attention. I'm starting to think a move to Lexington may not be a bad idea, just to go to that clinic.


IF we get to re-start The Big T, I'm going to see if I can switch there. My mom lives all of five minutes away from the site. If I hadn't been so doggoned impatient, I probably would have been there... but I didn't think Kentucky would offer a trial site. So I jumped on the first "take" I got--although I ended up loving the Columbus gang, it WAS pain in the keester having to make such a trip each and every time!


Jane,

I'm telling you, you should give Neurology specialists in Dayton a try. We are running the CARE I & II, the BioMS, and some others and they are a very proactive friendly staff that sounds alot like Marcia's site. I get fed there all the time. I stick around sometimes just to shoot the breeze with my coordinators and infusion nurses. Very positive experience type of place. The neuro's there are also very, very current and they don't rush you in my experience.
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Postby Lars » Sun Jan 25, 2009 2:02 pm

I finally got word that yes, we Tovaxinites have been accepted into the Campath trial. As for me personally I am still a bit in limbo as the wheels of inclusion grind slowly. At this point I still don't know if I would be a Care 1 or 2 patient which weighs heavily on my decision. I also have to admit that Dignan's list of phase 111 drugs has me wondering about Cladribine. For a person who has basically refused to go the CRAB route there is suddenly so many other drugs in the pipeline to consider that confusion is the only thing I am certain about. I am pretty sure I am going to give LDN a shot while I sort things out.
Peace,
Lars

This is the most in depth work I could find on LDN. Bob this ones for you.
Source: MSRC
How Naltrexone Works

The benefits of this drug are apparently due to the temporary inhibition of endorphins (a natural pain-killer, produced in the brain). This results in a reactive increase in the production of endorphins, which would expectedly result in a reduction in painful symptoms and an increase in the sense of wellbeing.

In addition, increased levels of endorphins would also be expected to stimulate the immune system, promoting an overall increase in the numbers of T lymphocytes. This increase in T-cell numbers apparently restores a more normal balance of the T-cells so that the effects of the disease process are significantly reduced.

Contrary to the common belief that MS is due to over-activity of the immune system, it is thought that MS may actually occur due to a reduction in immune system activity and may be the reason why LDN is effective as a treatment.

Specifically, it is the reduction in the number of the suppressor T-cells within the immune system that permits the CD4 helper T-cells to do damage. Thus, during an acute relapse the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the CD-4 helper T-cells tend to predominate. This is most pronounced during an acute relapse but a similar situation occurs, although perhaps to a lesser extent, in chronic progressive MS.

In the presence of LDN it has been demonstrated that the number of T-cells may increase by more than 300%. Thus, when the number of T-cells is initially increased, the overall predominance of CD4 helper T-cells at this time may expectedly increase the intensity of the MS, therefore temporarily increasing some symptoms. However, as the number of T-cells continues to increase the normal balance of suppressor to helper T-cells is restored, the activity and intensity of the disease process is reduced and symptoms once again diminish.

In those suffering the relapsing-remitting form of MS, the number of relapses is reduced, and the rate of progression of the disease is diminished. In chronic, progressive MS (either primary or secondary) there appears to be a similar reduction in the progression of disease symptoms.

In fact, Dr Bihari’s research suggests that no-one receiving this treatment as a regular therapy, has experienced a relapse while actually on the treatment. Occasionally however, there may be a short-term increase in symptoms during, for example, periods of infection or stress, arising from previously active lesions already present in the brain or spinal cord.
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Postby av8rgirl » Tue Feb 24, 2009 10:50 pm

I had an appt with my neurologist today and we went over the MRI I had a couple of weeks ago. This one was compared to the one that was done prior to my entry into the clinical trial. I have many new lesions.

So not only did I not get a departure debrief but when asked for information about the brain MRIs, the clinical trial neurologist told my neurologist there had been no change in my MRIs. I do believe that was misinformation.

I will most likely be going back on Betaseron soon.

I am very unhappy with the clinical trial doc who conducted the site where I was enrolled. I am not sure what to do about all of this. I certainly hope that Opexa is reading this because they should be....
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby Lyon » Wed Feb 25, 2009 7:40 am

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Last edited by Lyon on Sun May 08, 2011 7:06 pm, edited 1 time in total.
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Postby JanethePain » Wed Feb 25, 2009 8:20 am

av8rgirl wrote:I had an appt with my neurologist today and we went over the MRI I had a couple of weeks ago. This one was compared to the one that was done prior to my entry into the clinical trial. I have many new lesions.

So not only did I not get a departure debrief but when asked for information about the brain MRIs, the clinical trial neurologist told my neurologist there had been no change in my MRIs. I do believe that was misinformation.

I will most likely be going back on Betaseron soon.

I am very unhappy with the clinical trial doc who conducted the site where I was enrolled. I am not sure what to do about all of this. I certainly hope that Opexa is reading this because they should be....


Yet another and perhaps THE most important reason why any "furtherance (for lack of a nice big word here)" of Tovaxin talks should include OUR input.

It sure looks to me that study protocol was violated, at worst--fudged at best--in WAY too many cases here. From that one group in the Deep South who lost their chance due to the staff screwing up--to this...

Cheryl, I really hope we can find someone to take action for you. It's my understanding that if any of us, during the trial, spiked a lesion, we were supposed to be suspended and treated before getting the green light to proceed.

If there'd been a HUGE cash incentive for neuros and staff to ignore the protocol and push us through the maze regardless, I may have understood this mess. But they only got about $280-ish for each of us (it was right there on my special color-coded check-in form in the "insurer" section--so I don't think this could possibly have been priviliged information).

So what was the reason for this downright criminal and unethical decision not to treat you? Any chance you'll ever know?

I need to send you a gift certificate for something decadent. Chocolate or something! :(
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Postby TWG » Tue Mar 03, 2009 10:11 am

I had a big relapse after the study was canceled. I went on a 5 day solu medrol treatment that didn't help at all this time my walking ability worsened. I now use a walker at home. It was decided to put me on Tysabri, and I will start soon. I was told there was no hope of Tovaxin ever starting again, and clinical trails for me would not be a good idea. I need something that doesn't have a placebo, I agreed. I will still check this site daily to see what others are doing and if something changes etc. I view people here as friends!
Diagnosed with MS in Feb. 14 2000! Was a Tovaxin guinea pig.
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Postby Lars » Wed Mar 04, 2009 4:32 pm

Hi All,
So, I posted this on the Campath site. Thanks to all who are desperately trying to revive Tovaxin but honestly, after dealing with 2 trials (actually 3 as I tried Revimmune as well) I hope no one assumes patient concerns are even on the list at big Pharma. I am exhausted by 2 years of trying to find something....anything that I believe in. The math is scary. Months since diagnosis:30 Months in, or applying to clinical trials:27 DAYS of treatment in that time:28. All hail the clinical trial. I am done with endless hours of research and coordination. Time to get back to life.

<Well the fine folks at Genzyme have given me the boot after intake, consent, etc. I am apparently not treatment naive because of the 28 days I was in the open label with Tovaxin and I am not eligible for Care 2 because I wasn't on treatment??? The clinical Neuro went to bat for me and still, NO. The only thing more frustrating than MS is trying to find a useful treatment for it. I would like to once again thank Opexa (Tovaxin) for all their help in placing the appropriate landmines in my treatment options path.
Peace,
Lars>
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Postby av8rgirl » Thu Mar 05, 2009 9:48 am

Evidently, Opexa is going to present new (??) data at the AAN conference in April regarding MSQLI.

http://www.earthtimes.org/articles/show ... 8942.shtml

Dr. Fox is going to present this information as the co-sponsor of the TERMS study. Too bad they won't let any of the patients talk at the conference.

An analysis of the MS Quality of Life Inventory Data (MSQLI) from the 150 patient study has shown that in the complete modified intent to treat (mITT) population (n=142), patients treated with Tovaxin demonstrated a statistically significant improvement in the Impact of Visual Impairment Scale scores (p=0.028) compared to those on placebo. This improvement was observed within six months of completing the full course of treatment.


An abstract highlighting key clinical, magnetic resonance imaging (MRI), epitope and Quality of Life data from the landmark TERMS study has been accepted as a poster presentation at the 61st Annual Meeting of the American Academy of Neurology (AAN) in April 2009. The presentation will be given by Edward Fox, MD, PhD, director of the Multiple Sclerosis Clinic of Central Texas and the study’s principal investigator and co-author of the TERMS study.


I wonder if MY MRI will be presented! LOL!
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