RESULTS WILL VARY!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

RESULTS WILL VARY!

Postby IHaveMS-com » Sun Jun 17, 2007 7:29 pm

Hi to all,

I cannot believe that some people are looking for results like I have had while on Tovaxin. That these people think they may be on placebo just because they have not seen similar improvements. I don’t think these people ever read my timeline, and if they did, they only saw what they wanted to see.

I have said over 100 times that the hope for Tovaxin is to stop the attacks. There is nothing about disease reversal. If you gain back some lost function, that is great, but it is because your body is rebuilding itself. An indirect affect of Tovaxin is that if it stops the attacks, the body will have the chance to start fixing things without the repairs be continually stripped away.

I have seen posts where I was wheelchair bound, and after the first treatment of Tovaxin, I was able to walk. The truth is, I did have my own wheelchair that my parents used to wheel me around on long outings and when we would travel to Houston.

If we fly Continental, it can be over a mile at each end, and in Detroit, there are no electric carts. When the gate is far away, my parents still insist on pushing me. I no longer complain about being pushed, because I know I could walk it if I had to. I still have some fatigue, so why waste the energy on getting to the gate.

I had just turned 26 when I got my first treatment. I did see some improvements during the first month, but it was that I could now feed myself and pick up a full glass. I am having trouble understanding why someone is looking to have the same results that I have had. I don’t think any of you are in as bad a state as I was and most of you are older than 26.

My family watched me like a hawk, noting each little change or new accomplishment. I even wrote that I realized I had some improvement because I was able to peel a shrimp. Golly, maybe next week I will be able to do brain surgery. I am much better now than when I started the study, but if my family had not keep such a detailed timeline, I wouldn’t remember the specific improvements, and if you asked me how I was doing, I would only be able to say that I have improved. Here is a list of 18 improvements listed on the website.

1. Feed himself
2. Cut his own food
3. Drink from a glass instead of a drink bottle
4. Walk much better and much longer can probably walk a mile
5. He doesn't thunder down the stairs
6. He can walk down inclines
7. His tremor has decreased
8. He has gone from not being able to make an X to signing his name and writing notes in cursive
9. He has less fatigue and feels he could work a full day
10. He can play catch
11. His small motor skills are slowly returning he can open small sauce container, peel shrimp, color Easter eggs, hang Christmas ornaments, go fishing, tie his shoes, zip his coat, etc.
12. His EDSS has dropped from 5.5 all the way down to 3.0
13. He gave his wheelchair to our Grandmother
14. He can beat us in a game of pool
15. His eyesight has returned to 20/20
16. He has gone from 2 or 3 attacks per year to zero attacks since November 2003
17. He has gone by himself to visit friends in San Francisco
18. He has gone from being dependent upon help from others for most things, to independent

As you can see, there is nothing earth shattering in the list. Oh boy, I can zip my coat. Believe me I am thrilled that I can zip my coat, but why people think I have had this miraculous improvement puzzles me. The change in EDSS may be what catches everyone’s attention, but the biggest drop came from my telling the doctor that I felt I could work a full day.

When Sweetyhide tells her neurologist that she has gone from sleeping 13 – 14 hours a day down to 7 or 8, she will see her EDSS drop significantly. Bob’s wife had an EDSS change of 2 ½ points after the first treatment. It took years for mine to come down that much, and mine still bounces up and down a little.

Jane the Pain has had so many things improve that I won’t even start to list them. Mike is convinced he is moving in the right direction and is no longer thundering down the hall. Now there is an improvement that I can relate to. Heather feels that she is on a similar path like Bob’s wife. It sounds to me that all of these people are doing better than I did. I have had 15 treatments over 3 ½ years.

When I was having attacks, all I hoped for was that the attacks would stop. I could live with the damage, just don’t let me get any worse. Don’t look for injection site reactions; don’t look for disease reversal; look for the attack to stop, anything else is a bonus.

Quote from JCML
On June 5th I went in for round two of the shots. Still no site reaction although I was very slightly sore at both injection sites, but really very little. I keep looking for somebody in here that is in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Does anyone know of somebody in this study that is experiencing a great turnaround? It would be great to hear from somebody like that.

Still no injection site reaction; didn’t you read my thread on injection site reactions. After 15 treatments, I have never had an injection site reaction. It is an unfortunate myth that I started by mistake when I had a reaction to a Band-Aid. I posted that I had had an injection site reaction and it took 6 months for my doctor to decide that the reaction was due to the Band-Aid. By that time, enough people had read the post and the legend of the injection site reaction was born.

JCML keeps looking for somebody in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Sweetyhide, Bob’s wife, Jane the Pain, Mike, and Heather all appear to have already surpassed me or are on track to do so.

It is like I have become an MS legend. People tell stories about me as they sit around the campfire. I wouldn’t be surprised to hear someone singing the ballad of Timmy Tovaxin. By now, I hope you realize that I am thrilled for those of you that are seeing improvements, but I am worried that everyone is expecting a “Tovaxin Miracle”.

And now for another misconception – I have seen it posted many times how lucky I was, because I was getting the “real thing”. I have never once seen anyone add to that fact that when I started the trials, Dr. Zhang had only shown a 40% reduction in attacks. I went into the trials because my father thought Zhang’s approach to the problem had the best chance of success. I would call this the anti-placebo effect. I was hoping the attacks would stop, but was expecting to still have at least 1 per year.

RESULTS WILL VARY!
Last edited by IHaveMS-com on Mon Jun 18, 2007 8:12 am, edited 1 time in total.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Advertisement

Re: RESULTS WILL VARY!

Postby Sweetyhide » Mon Jun 18, 2007 6:02 am

Excellent post Tim.
I have to admit that in the beginning I was guilty of looking for major improvement or any amount of improvement, even when I knew that was likely not going to happen. Could it be that we are just desperate for something to actually work?

My husband and I had a long talk last night about my "results".
The major change I have noticed is my sleeping patterns. Does that mean that I am better? I could easily say yes. Fatigue is my #1 biggest problem. Does insomnia count as a remedy for that? More than likely not. It could be masking my issues, like provigil did. I still have fatigue and don't want anyone to think otherwise. But, I am thrilled with whatever it may be since I was sleeping my life away.

This is one of the reasons I am wary of putting too much into my blog. I don't want anyone to think that I am doing wonderful and feel so much better. I struggle everyday and have many of the same symptoms.

I do feel somewhat better overall and it's not something I can pinpoint and explain simply. This "feeling" happened very gradually, almost to the point where I was questioning if it was actually happening. It took me months to realize that there was something there. I believe this is consistent with your statement that your body can rebuild itself. In my mind that may be happening with me. Then again, this could be my normal course of this disease.


IHaveMS-com wrote:I wouldn’t be surprised to hear someone singing the ballad of Timmy Tovaxin.


Could you hum us a few bars? :lol:
~Sweety
Peace, Love and Potato Salad
User avatar
Sweetyhide
Family Member
 
Posts: 46
Joined: Tue Jul 20, 2004 3:00 pm

Postby IHaveMS-com » Mon Jun 18, 2007 8:08 am

Hi Sweety,

Congratulations, you got the point I was trying to make. I have become a legend because I can tie my shoes again? No, people have read my timeline and envisioned what they hope Tovaxin can do for them. I would like to think that anyone in the current or future trials sets the bar at "I hope I don't have anymore attacks".

Quote from Sweetyhide
Could you hum us a few bars?


Timmy, Timmy Tovaxin
King of the wild stories
He was raised in the suburbs
Where he planted some trees
And was diagnosed with MS
Before he was 23
Timmy, Timmy Tovaxin
King of the wild stories
Last edited by IHaveMS-com on Fri Jul 27, 2007 7:44 pm, edited 2 times in total.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Mon Jun 18, 2007 8:52 am

oo
Last edited by Lyon on Sun May 08, 2011 5:17 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

You are so right Tim

Postby chrishasms » Mon Jun 18, 2007 11:35 am

I didn't make it into the trial. Didn't make the cells. All I wanted to do was just stop it. I didnt care if I got anything back even I just wanted it to stop.
Well I can't play guitar anymore either...maybe one thing back lol.

I got RRMS so they say, but it's the kind where I'm fine then wake up one day and something isn't as good as what it was. When I go to the doctors they do nothing so I just take my shot, LDN and live life.

I started cartooning about MS and got a job at an MS publication. It's easier to make fun of this crud lol.

People just want to feel better, and well, you became a savior to a lot of us. It's not you, or the Tovaxin so much as the thought of maybe this being done someday. The fact that we get to live vicariously through you is great to all of us without hope yet. Be glad it's not the Vicarious living Maynard sings of.

I just wish someone would explain to me why I didn't get in and if there is a chance in hell I may be able to get treated someday. No one will answer any of my questions because of the testing. Didn't I make the right cells for this trial, or are all the ones discovered being used and I'm odd man out?

I understand how it works, I just thought there were 4 lines being tested and now I hear there are 100? Just confused a bit.

www.chrishasms.com
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Re: You are so right Tim

Postby Lyon » Mon Jun 18, 2007 1:05 pm

oo
Last edited by Lyon on Sun May 08, 2011 5:17 pm, edited 2 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby IHaveMS-com » Mon Jun 18, 2007 6:55 pm

Hi Bob,

Quote from Bob
Seriously, at first I thought your message was pretty intense but I came to appreciate the slap back to reality. Considering the history of MS, stopping progression is a Godsend and any improvement, IF ANY, is only due to the patient's ability to heal itself.


My post was intended to be a wake-up call for anyone who thought after a couple of pokes in the arm they would be back to their pre-MS abilities. I am no where near my pre-MS days. I still have a staggered gate and a pretty good tremor. I am much better than before I started the study, but until something else comes along that fixes the residual damage, this is probably all of the disease reversal that I can expect from my body. The improvement is significant, but I am still damaged.

When I compare how I have done and the initial results of your wife and others, with what the expectation would be if I were on a CRAB drug or Tysabri, I am thrilled that I am in a Tovaxin study. We are still lab rats, and although everything is looking pretty good, there may be a pothole in the road ahead.

Quote from Bob
I've often wondered exactly what artifacts you've been left with from MS and although I'm sorry you haven't been returned to pre-MS condition, it's good to hear the real "dirt" on the situation.


I think you need to read my timeline again. http://www.ihavems.com The real "dirt" on the situation is in my timeline, but the enthusiasm with which my family talked about minute improvements may have made you see what you wanted to see. When my brothers would write, "Tim can now do ---". I think all anyone sees is "Tim can now do". It didn't matter if that the "can do" was "hang Christmas ornaments", it was that I can do something that I previously could not do.

You have correctly sensed that this thread is to give a "slap back to reality" for those people who think Tovaxin is going to fix everything. If Tovaxin works, the attacks should stop. That is wonderful compared to only slowing the progression by 1/3 that the CRAB drugs offer. A hopeful expectation for Tovaxin might be that the attacks will stop and you will get a 1 to 3 1/2 point decrease in your EDSS.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Loobie » Tue Jun 19, 2007 5:08 am

Tim,

Although your post is wonderful and needed (and I appreciate the PM slap back you gave me a few months ago), I don't think you are giving yourself enough credit. I agree, we have gotten pretty flighty at times. When I look through my posts and see how I was planning on posting my progression through the study (i.e., the threads I created for EACH shot), I see that I was way over the top in my expectations and you PM'd me and brought me back to reality; you have no idea how your simple 4 day rule changed how I view not just my trial but my entire condition. When I say you don't give yourself enough credit I mean that you never did try to advertise any miracles; we took it and ran with it that way. It really comes down to us MS'ers wanting ANYTHING that shows some good, definable results.

The part I really appreciate is that you have taken the time, everytime, to bring us back down to reality. Not to dash hope, but to get back down to earth. It shows that you, like all of us, don't want to get snookered into thinking we can cure MS yet. You are correct in the assesment you make about how we (or me) took the parts where your brothers talked about what you could do "now". I remember telling people about the drug when I first read your webpage and I told my friends that there is this guy that used to need a wheelchair and now he doesn't. After re-reading the whole timeline, you never once say it that way. You weren't wheelchair bound, but I just remembered the part I wanted to take away from it.

You are kind of like our anchor in this and even though you may not feel like it, you are the rock star of Tovaxin just by you staying grounded in reality and pointing it out to us when we start floating away. You don't have to do that and follow up like you do. I guess what I'm trying to say is thank you for being so "tough love" with us about this. I, for one, greatly appreciate it and feel very fortunate to have someone that can express themselves like you do in your position of having some experience with this. So, once again, thank you for helping, me at least, get through this trial with some mental and emotional faculties intact!

Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Lyon » Tue Jun 19, 2007 6:22 am

oo
Last edited by Lyon on Sun May 08, 2011 5:18 pm, edited 2 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby chrishasms » Tue Jun 19, 2007 6:51 am

I for one kind of find it funny how much work it seems like people don't want to do. When I was first diagnosed I was at a PT and I said, "I'm going to start to work out because I think it will help."
Her reply, "It's a good theory but MS doesn't work this way."

I didn't work out at all for the first three years I had this crud. Then when I saw Tims time line he had one sentence in there that stuck out in bold print in my mind and I'm paraphrasing, "You can do rehab at any point of disability."

So I bought a Bowflex and started working out last November. Since then My upper body has increased in strength and any of the MS related pain I used to get in my arms is gone. Now when I get back from vacation I will start a regimen for my legs.

I firmly believe that fortunately I'm not as active or as bad as Tim or a lot of you are. That being said, its MY RESPONSIBILITY to be as healthy as I can be. No one is going to keep me in good shape because as we all know, the new drugs go to the people who unfortunately are not the worst cases.

I will make another statement regarding Tim's time line. I'm a old head banger. The last show I went to before this crud hit was Slayer lol. There is a line in there about Time being more worried about standing in the Mosh Pit at the show. That was another line that stuck out in my head. No way in hell I would try that one! LOL
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby JanethePain » Tue Jun 19, 2007 8:38 am

Lyon wrote: ... I don't think my wife and I are different than Lew or anyone else who entered the trial in willingly accepting (not much choice if you want involvement with Tovaxin) that there was a 1/3 chance of being on placebo for a year. Truth be told, like everyone else we were hoping to holy hell and had even convinced ourselves that we would be among the lucky 2/3 who would be on the "real thing".


I had something of a sell-job to do with my family. After all, I'd been whining around and pestering a series of neuros for Tysabri when it was still antegren. So when I (apparently) changed horses in mid-stream, they were a little bewildered.

The very nature of clinical trials upset them, too. What if I didn't get the real juice? Well, after a year, the placebo gang will get the real stuff, too. And we'll all get it quite a chunk of time before it hits the market.

Expectations? Yip, I've had a bunch. Am I disappointed that the stupid vertigo hasn't gone away completely and I still have some right-side tingles? Of course!

BUT... I've got some--no, a LOT--of peace of mind now. It most probably isn't going to get worse--and I'm on a protocol that doesn't have side effects that are almost as serious as the disease itself.

And before Tim takes another shot at de-mythologizing his hero status, I'll advise him to think about posting a fish dish recipe instead. :D

'Cause it ain't gonna work, kiddo. You are a hero. Your marvelous family, too. Had it not been for sharing your experience on a Board Far Far Away, I'd never have known about Tovaxin (and started pestering neuros about it...) and been here today feeling so much better.

Heroes never feel like heroes, Tim. Your humility does you great credit but just accept this fact before I have someone come measure you for a cape and a spandex outfit with a big "T" on it for Tovaxin Man, maybe? 8O
Jane the Pain
User avatar
JanethePain
Family Elder
 
Posts: 222
Joined: Wed Jun 13, 2007 3:00 pm
Location: Historical Glendale, OH: Home of the Squirrrels

Postby Lyon » Tue Jun 19, 2007 8:59 am

oo
Last edited by Lyon on Sun May 08, 2011 5:18 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby JanethePain » Tue Jun 19, 2007 9:50 am

Lyon wrote: ... P.S.....I think you should have gone with the red cape with the blue "T" rather than the other way around.


Gotta disagree rather vehemently with ya there, Bob. :P From what I remember of the pics on Tim's website, he's a strawberry blond. Therefore, red is definitely out in all cases. Blue is rather a universal color but I'll just have to sit back and meditate on the contrast. One must be tasteful but not boring, ya know, if one decides to delude oneself about contending with the likes of Coco Chanel and Crew.

After all, I might pull a real "fox paw" and set him up with University of Kentucky Wildcat colors and offend the loyal Michigan-er he is; that would be a dreadful thing to do to someone from the Big Ten, wouldn't it? :P

JTP//Your Handy-Dandy Fashion Coordinatrix
Jane the Pain
User avatar
JanethePain
Family Elder
 
Posts: 222
Joined: Wed Jun 13, 2007 3:00 pm
Location: Historical Glendale, OH: Home of the Squirrrels

Postby Lyon » Tue Jun 19, 2007 10:52 am

oo
Last edited by Lyon on Sun May 08, 2011 5:18 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Loobie » Tue Jun 19, 2007 12:00 pm

Excuse me, but the "THE" is reserved for THE Ohio State University! Damnit! :lol:
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Next

Return to Tcelna (Tovaxin)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users