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Joined: Mar 22, 2007 Posts: 282 Location: Durango, Co
Posted: Wed Oct 08, 2008 6:13 pm Post subject:
Well.... after considerable thought and emotional chaos I have decided to stay IN the Tovaxin trial. Please don't ask why because I don't know. I suppose in large measure, admitting what I once considered the ultimate worm hole through MS to be wrong would be a reflection of my judgement and therefore hard to accept. I am also no more inclined to take the CRAB route than I was nearly 2 years ago. To be fair and honest, I have been in contact with Carrie at JH and will apply for the phase lll Revimmune trial next year and yes I have talked to my clinical Neuro/ personal Doc about it. I am keenly aware of the horribly difficult decisions we are all making and regardless of the personal choices made, I am happy to have found you all on this journey.
1st real Tovaxin injection: Oct 30
Peace,
Lars
Joined: Sep 16, 2007 Posts: 77 Location: Chicago, IL
Posted: Thu Oct 09, 2008 12:12 am Post subject:
Lars wrote:
Well.... after considerable thought and emotional chaos I have decided to stay IN the Tovaxin trial. <snip> I am keenly aware of the horribly difficult decisions we are all making and regardless of the personal choices made, I am happy to have found you all on this journey.
1st real Tovaxin injection: Oct 30
Peace,
Lars
Wow! Good luck, sir. Considering how you've been doing that's a pretty brave decision, but like you, when I look around I don't see that many hot alternatives out there to run toward. I haven't had your problems during the last 20 months, but I could understand wanting to head a different direction.
I'm happy to have found you and these other knuckleheads as well.
As for the slow plunger thing, I've been getting shots that way since the beginning.
I will highly recommend asking your shot-giver-nurse-thing to swap the actual needle after they draw in the vaccine. They get dulled even from that one push through the rubber into the vial. With a new needle I don't even feel the thing most of the time any more.
Joined: Mar 22, 2007 Posts: 282 Location: Durango, Co
Posted: Thu Oct 09, 2008 8:23 am Post subject:
Patrick,
There is no question that I need to be on something and I don't see an advantage to CRAB (its even an ugly word). Revimmune would be my first choice but there is a waiting list. Also, I can't afford it so that is my motivation to see if I can qualify for their phase lll. I am fairly sure I can get through (or close to) a year with Tovaxin before that happens???? Maybe by the time I need to make that decision I will see those elusive "good" results from Tovaxin. Lastly, I was a placebo patient and something inside me really wants to see what might happen. It was a roll of the dice to begin with, I take responsibility for my original decision and now I roll again..... possibly with loaded dice.
Lars
Joined: May 04, 2006 Posts: 3405 Location: Mid-Michigan
Posted: Thu Oct 09, 2008 8:56 am Post subject:
Lars wrote:
Well.... after considerable thought and emotional chaos I have decided to stay IN the Tovaxin trial. Please don't ask why because I don't know.
For a person who follows this thread, you don't really drop the subject with "I don't know". ALL of the reasons you give are the same reasons which convinced my wife to stay in the trial, although we now know that she had been on the real thing.
It seems that life is never easy and this trial has played out in about the most difficult fashion possible for the registrants.
Of course you're going to have to constantly assess your situation, and possibly modify, as factors play out, but considering your situation and your options to this point, I don't see that you have any wiser choices.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3405 Location: Mid-Michigan
Posted: Thu Oct 09, 2008 6:32 pm Post subject:
Lars wrote:
Bob,
I was going to stop after "I don't know" because I really don't, but the beer therapy inspired me to continue.
Lars
I'm not sure that the value of beer therapy has been proven in clinical trial but it comes highly recommended by a lot of people!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
You made a tough decision and I hope that it works out for you. I still wish I was going to the Colorado site, they are great folks over there. I actually heard from that coordinator that I was on the real thing two weeks ago, I still have not talked with my current coordinator. It just seems to me that she doesn't care about her clients like the one in Colorado does. It kinda pisses me off, especially since she is the coordinator for the lead evaluator.
Anyway, I'll stop ranting. Good luck and I think that you are going to beat me to the first shot.
Joined: Mar 22, 2007 Posts: 282 Location: Durango, Co
Posted: Fri Oct 10, 2008 6:09 pm Post subject:
Brad,
I must say that my relationship with my coordinator and Doctor is exceptional. They are definitely as much my friends as my clinical staff. I would not be continuing the trial without what I consider to be beyond the call of duty attention on their part. I really believe they still hold on to some hope for better future results from Tovaxin. There is one determining factor in my case that swung the "jury" and that was, limited brain atrophy. It was news to me because I feel atrophied as hell. I trust this group to tell me when to stay and when to go.
Good Luck,
Lars
You made a tough decision and I hope that it works out for you. I still wish I was going to the Colorado site, they are great folks over there. I actually heard from that coordinator that I was on the real thing two weeks ago, I still have not talked with my current coordinator. It just seems to me that she doesn't care about her clients like the one in Colorado does. It kinda pisses me off, especially since she is the coordinator for the lead evaluator.
Anyway, I'll stop ranting. Good luck and I think that you are going to beat me to the first shot.
Brad
I am sorry Brad that you have such a horrible site coordinator. Maybe she is from the same school as the one I have. The school of no compassion ....
I agree Lars, you made a tough decision and I, too, hope it works out well for you.
On another note, I had my 3rd redraw on the 24th. In the past it has always taken 2 weeks or less to get the test results back. So, on Friday, I contacted my site coordinator via email. I was informed that if she'd had the results she would have contacted me. And, it always takes at least 3 weeks to get the results back and now post hurricane, they are backed up and it will take longer. She will contact me when she has information.
In other words, don't call them, they will call me...
Last blood draw in June, I received the results in a week.
Joined: Mar 22, 2007 Posts: 282 Location: Durango, Co
Posted: Sun Oct 12, 2008 9:28 pm Post subject:
Brad,
No I didn't get the Opexa MRI's (nor anyone else to my knowledge) but when I was in Co. Springs for my first extension visit Debbie (coordinator) asked me if I wanted a MRI, they needed a dummy shot for another study. I jumped on it and it gave us all a current look. There has been obvious and enhancing lesion issues since I have been in the trial but they were happy about the lack of atrophy. Honestly these ladies have been close to guardian angels for me. I don't know about Tovaxins future but I have definitely put my faith in this clinical staff. We are currently working out the details of a rural outreach MS program in Southwest Colorado run by this staff. It is comforting to know there are people in this field for the right reasons. Again, it's why I'm still here on the Tovaxin train.
Lars
Joined: Sep 16, 2007 Posts: 77 Location: Chicago, IL
Posted: Mon Oct 13, 2008 1:04 am Post subject:
Had my meeting with doc to discuss the first year results.
DISCLAIMER: These are my best memories from my Friday appointment. I do not vouch for the veracity of all of them, and especially when it gets to the more technical stuff it is sometimes hard for me to keep up, retain, and regurgitate those facts. So please do not read this as instructional or conclusive. Just my rotten memory and best guess opinions. I especially do not speak for Dr. Wynn. These are just my best recollections.
This much I know for sure: I was on vaccine.
Was able to view MRI results with him and there were no new lesions during the year. All of my baselines remained constant overall with only mild fluctuations, which I already knew about from my testing.
He said that he has no idea if the vaccine will work, but he and my nurse have both told me stories about people who have seemed to be positively affected by it.
He said that of the three vaccines in trial, this is the only one tailored to the individual and his guess is that it will have the best shot at working because of that. And if it does, we will also have our first physical markers for MS.
He said that the first year vaccine was only looking at about 5 proteins and the new one for OLTERMS looks at over 100, giving it a much better shot at killing the t-cells doing the damage and/or pointing the others to do the damage.
He neither encouraged me nor discouraged me. Our discussion centered on the fact that I have not progressed during the last 19 months and as discussed here, the other options are not that great.
He did say that even if this vaccine was working for everybody else but wasn't working for me, he'd yank me out of the program immediately and figure out something else. Thankfully I have not had that problem and we will soldier on and see what happens.
Dr. Wynn also said that we should not be looking to stockholders for guidance for our health. They are all reactive. If all of the management and board members of a company were leaving, it would be one thing, but people on the outside reacting to a report either way is something else.
Also from Wynn, all data has not been released, AND it's a bad idea to compare data/relapse rates from one study to another. I can't remember which specific CRABs, but he mentioned how people in the placebo arm of one study did better than the med side of the study on a different drug, but that you'd never put somebody on the placebo instead of the CRAB being tested. Study populations and how they react in it are always different.
Expecting my first shot of the new stuff in about 6-8 weeks.
Guess that's it except that I love Dr. Wynn and his staff. I am so thankful for them and their even keel and gentle humor.
Last edited by patrickm on Mon Oct 13, 2008 12:43 pm; edited 4 times in total
Joined: May 04, 2006 Posts: 3405 Location: Mid-Michigan
Posted: Mon Oct 13, 2008 8:28 am Post subject:
That all seemed pretty helpful Patrick. Thanks for the detective work!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
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For a person who follows this thread, you don't really drop the subject with "I don't know". ALL of the reasons you give are the same reasons which convinced my wife to stay in the trial, although we now know that she had been on the real thing.
