This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey gang,

I thought it would be interesting to have a topic where we post how the termination appointment went as well as what meds/treatment did you decide to switch to. My termination appointment is tomorrow so I will update you then.

Take care,
Mike

I'm beginning to wonder if I'm going to get ANY attention from Opexa. As of this moment, I STILL haven't gotten the "axing" phone call! If I didn't have this little community of you guys here, I guess I'd be getting ready to head up the road for more jabs on December 16th...

Martian protocol?

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Jane the Pain

oo

Mike,
So you actually have a "termination" appt.? Apparently there are some who have not even been notified of the termination period. I have spent two years of my life not only in the Tovaxin trial but also trying to be a different person, calmer, kinder, spiritually evolved, more understanding and generally I have become a person that I am happy with. But I can tell you, Opexa is barking up the wrong tree if they want me to do the 12 hour drive again for a "termination" appt. Right is right and wrong is subjective but I have major issues with how they have handled so many committed volunteers.
Peace,
Lars

Well as you know I was a 'dropout', but I still had to do a termination appt. I feel for you Lars; 12 hours? Man that would chap my ass too. The appt. was just like a regular dose appt., just without the dose. I had to do all the testing (peg, PSAT, yada, yada).

And as some of you already know, I switched to tysabri. So the appt. was just like any other, except no shot at the end!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I had an appointment today to discuss my treatment options post Tovaxin. This was not a termination appointment. I think the termination of OLTERMS by Opexa was it. No termination appointment, just no more anything.
I told him that I am NOT interested in taking any of the CRAB drugs. My applied statistics degree and ability to crunch the numbers over effectiveness and cost made him truly hear what I had to say and know that I am not ignorant of how well they work. His response was that if he had MS and had to consider treatment he would lean towards Tysabri but he said the biggest hitch with Tysabri (besides the statistical chance of getting PML) is that you must go on CRABs first and fail them before insurance will cover it.
I told him I'd rather go into another trial than do anything else but our research department said that receiving Tovaxin precludes me from entering any other trial they are currently enrolling in or are applying to be involved with.
He stressed that since I have cervical spine lesions as well as brain lesions that I have a greater possibility of a more physically debilitating form of MS than those with just brain lesions and that I need to be on something to at least help slow the progression. ***** I am not saying that he thinks people with only brain lesions are less affected by ms ***** He told me that if I only had brain lesions that he would be more open to allowing me to go untreated but he doesn't think anyone should go untreated.
So now I have an MRI scheduled for Dec 12 and a follow-up visit to that in mid-January. I have put off making any treatment decisions until I see the MRI results and discuss them with him also. Now I need to research into the clinical trials and figure out if there are some good ones for which Tovaxin doesn't preclude me.

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Marcia

oo

Hello all,

I had my visit with my study doc on Thursday and as Marcia explained it was not dictated by Opexa but by my study group just to talk to me about my options. My insurance is tied to the university where I work so the visit with the study doc, which lasted ~30 minutes, was completely free of charge.

The only topic of discussion was what options are available to me for treatment. As it stands right now, the Campath folks are specifically omitting Tovaxin participants. The reasoning is a more than a little fuzzy because they are concerned that it alters the immune system. The two problems that have with this line of reasoning is that ALL of the CRABS and Tysabri alter the immune system and the whole point of Campath is to wipe out the immune system so this rationale just doesn't make much sense on a scientific level. Moreover, there is no time frame or washout period stipulated with ever going on Campath. The folks at my study group are more than a little pissed at this stance by the Campath group and they plan to continue to pester the Campath folks about it. Campath is certainly something that I would be interested in but I'm not holding my breath for a change of heart from the Campath folks. As a side note, the doc told me that there is an MS center in Franklin, Tennessee that is doing the Campath MS protocol "off label" for ~$4000/year.

As far as "approved" treatments are concerned we concentrated mostly on Tysabri because I've been on Betaseron and Copaxone with much less than acceptable results. My feeling was that even without my prior failures with the CRABS Tysabri was his treatment of choice.

The next big topic of discussion centered around my study doc writing a letter to my regular MS doc, who my study doc knows well, describing what I've been doing regarding Tovaxin and the treatment options that we discussed. The letter is much appreciated because I essentially just walked away from my regular MS doc when I started the Tovaxin trial. My regular MS doc is good but he's more or less a prick so I never discussed anything about Tovaxin with him. Given my profession and degree I just wasn't in to arguing with him about the whole thing just because it wasn't his idea. Anyway, the letter should be helpful in getting back into the system with my regular doc.

All in all, it was a great and much appreciated visit.

I'll let you know what the next step entails when I get back with my regular doc. As it stands right now though that's not until March 18. Fortunately I have several strings that I can pull to move that up considerably!

Take care,
Mike

oo

I didn't have an exit appt. and I still have no concrete clue as to where I am headed. Like Mike I ditched my reg. Dr for the trial but am considering switching to the trial Dr. for my care. I really liked him.

I have no insurance. Puts a huge damper on anything I decide.
I am leaning towards going back on LDN and marijuana (or vodka lattes ) just to get me through.

I had 4 shots on the extension part of the trial. I am wondering, if Tovaxin was working for me, how long I am "protected". Was that enough to train my cells? My brain is foggy from fatigue and shock so my thinking is whacked out.

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~Sweety
Peace, Love and Potato Salad

oo

Hello all,

I spoke with my Tovaxin research group coordinator today regarding a tizanidine prescription refill and she said that they had talked with the Campath group and made a case for allowing the Tovaxin refugees to enroll in the Campath study. She received an unsolicited email from them this morning that they were still discussing the possibility but had not made a decision yet. So stay tuned.... there may be a glimmer of hope for us regarding Campath.

Take care,
Mike

oo

Thanks Mike,
I plead my case personally to the Campath site in New Mexico. The coordinator was very nice, very responsive, very concerned and ultimately (after speaking to her higher ups) very steadfast with the "NO". I really thought my lack of much Tovaxin in my system might sway them. I am curious where your efforts lead. Here's hoping.
Lars

Maybe consider Copaxone, Marcia. (I hope this isn't inappropriate..) Jeff presented with 20 lesions in his brain, one on the cervical spine. When he was dx, tysabri wasn't legit, so his neuro went with copaxone. He's responded really well...no new lesions, some lesion shrinkage, no progression in almost 2 years. Alot of people give up due to site reactions, or don't follow thru. I think this skews the numbers of "responders.". It does take about 6 months to retrain the killer t-cells, but it does not suppress the immune system like interferons. Then, if copax fails, on to tysabri.
I'm really wishing the best for you...this must be rough to deal with.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS