Loobie's 100 day club thread

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Lars » Wed Jul 02, 2008 5:49 pm

Hey Lew,
Good luck this week. I know it's no help but please know your not on this ship alone. The thought of pulling of much off anything makes me cringe. I have always said "it's all in the trying" but honestly given how hard it really is and a major EDSS slip makes it hard to make it a reality. Keep going, don't give up and you will always have a like minded partner in me.
Be Well, really, really well,
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Postby hmtucker » Thu Jul 03, 2008 5:14 am

Loobie wrote:I'm sorry I went on a rant like that, but that's what I do.


Lew,

No apologies necessary! What it all comes down to is things are what they are..... you're having a tough time and the current treatment is not dealing with your problems. This weekend will be a big measure of how your doing since you did a similar thing early on in the Tovaxin regimen. If you feel things are relatively the same then Tovaxin may be stopping the progression. However, if things are significantly worse then maybe you need to look seriously about your options.

Have a great 4th everybody!
Mike
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Postby Lyon » Thu Jul 03, 2008 7:36 am

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Last edited by Lyon on Wed Jun 22, 2011 7:09 pm, edited 1 time in total.
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Postby patrickm » Sat Jul 05, 2008 9:32 am

Loobie wrote:Mike, to answer your question, No things haven't bounced back for me.


FRAK

Loobie wrote: I'm sorry I went on a rant like that...


None necessary around here. That's why we're all here. Hope your trip was good.

We're off to Canada to go hiking in 2 weeks and I've got a bit of trepidation myself. I'm not on the juice yet tho.

Let us know how yours went.
p
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Postby av8rgirl » Sat Jul 05, 2008 2:30 pm

Ok, maybe a stupid question here, but have you considered that you are having a relapse and maybe a round of IVSM would help? I know I had to bite the bullet finally end of April and do the steroids cuz I just couldn't get past the pain and fatigue anymore.

I know that in the trial, we can only do IVSM once. I hope you are doing better, Lew.
“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 Loobie » Sun Jul 06, 2008 11:28 am

Back from the trip. It went pretty much like I thought it would. I would be ok just sitting, but it is literally taking maybe 100 feet of walking on flat ground now and my legs just stop working right. I don't mean they are fine for the first 100 either. It's getting tough to walk anymore than just room to room in the house period. I pretty much confirmed by the way I felt ,as well as everyone that we camp with, that I have slipped quite a bit here recently. If this keeps up unabated for much longer I can guarantee I will need to change things up major at work. Everyone who was camping with us who hadn't seen me in a few months was taken aback by how hard it was for me to get around the camp and how hard it was to get up in the camper.

To put it in perspective, I could not finish a game of cornhole (there's a real strenuous activity) after sitting around for a couple of hours. I couldn't bend over to pick up the bean bags without falling over after about 3 rounds of throws. It was pretty bad. Just sitting around talking I was pretty ok, but even having conversations where everyone is laughing and talking loudly was enough to make me get so dizzy I didn't even want to move my head.

Enough 'tests' for this ol' boy to see what I can actually do. The answer is very obvious now and it is simply 'not very much at all'. So unless I'm sitting and not moving, I'm doing very bad with leg strength, balance, dizziness, and ON. Time for me to move on I think. I'm going to start discussions with my doctor on Monday. If he suggests a round of steroids I'll do it, but we tried that once early on and it literally had no affect on me at all. If he wants to try that one time to stay in and see if Tovaxin shows up I'll do it, but if something big doesn't happen I feel it's time for me to try the next thing. Avonex wasn't it for me, Tovaxin sure doesn't seem to be, so I just have to try something else. Just getting a little bit worse every day is just not going to get it for me to feel like I'm doing all I can to try and save my life. There is not one functional system or ability that has not gotten worse. I think if Tovaxin was stopping the progression they wouldn't all be slipping, but they are. Even bladder and bowels are getting worse. drank two beers the entire four days, had no fluids after 8:00pm, and still pissed the bed every night. Good thing I planned ahead and brought some chux or my bed in my camper would still be at the campsite!

I'm not doing too bad emotionally. I have a plan now and it's not just waiting to see if my progression stops. It hasn't and I need to just admit it and move on. That's so hard to definitively say, but it's walking and talking like a duck, so I'll call it a duck. I mean it takes a while to get everything ready for JH, so if something good happens in the next couple of months I can always cancel and not go through with it. No fun, but reality is reality and that's where I need to stay. It just isn't working for me and that seems to be that.
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Postby av8rgirl » Sun Jul 06, 2008 1:59 pm

Lew

I am sorry you are not doing well. I hope you get some answers from you doc. Keep us posted on what the doc says.

They say that not all meds work for everyone When you continue to decline like you are, what's the point? You have to take care of yourself.

I wish you well.
“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 patrickm » Sun Jul 06, 2008 2:18 pm

Hey Lew.
Though I was wondering how a relatively stressful and energetic camping trip was going to make things better considering how you've been lately, I am exceedingly sorry to hear about your trip.

I'm very curious how you got to this point from where you were shortly after you started the shots. Unless that was a mirage or a very lucid dream, it included some drastic facility and ability that you haven't had for quite some time. Seems a lot for a placebo response, especially since you aren't on placebo. I suppose if for whatever reason Tovaxin actually doesn't work for you, then an uptick would be a placebo response. If so, it was a fairly large one.

Anyway, like everybody's saying, you need to do what's best for you. I would be curious to hear what your doctor and trial coordinator have to say, and what Opexa has to say.

Please keep us posted and I hope whatever's eating at you goes back the f*ck in its hole where it came from.

:evil:

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Postby Jamie » Mon Jul 07, 2008 11:39 am

There's always HiCy.
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Postby hmtucker » Mon Jul 07, 2008 1:00 pm

Loobie wrote:Time for me to move on I think. I'm going to start discussions with my doctor on Monday.


Lew,

I'm very sorry to hear that things are not working out for you. MS certainly seems to be a complex beast so I suppose it's asking too much for one treatment to take care of everybody. Please keep us updated on how things are going for you and what you and your doc decide is the next step.

Take care,
Mike
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Postby Loobie » Mon Jul 07, 2008 1:17 pm

Pat,

I wouldn't describe our camping trips as stressful and energetic. We're not talking Appalachian trail hiking or deep woods or anything here. We're talking pull up, unhook, plug in, extend chairs and do nothing because we can. A camping trip for me is probably about a quarter of the effort that a weekend at home is. No lawn to mow, no party to go to except right outside the camper, no laundry to do, paper plates and plasticware so dishes go in the trash, you get the drift.

So that's why I thought that seeing how I did after some forced relaxation would be prudent. Hell, I exerted less energy in a long weekend of camping than I do in one day at work. Also, placebo effect or not, what happened happened; i.e., it was real to me. Seeing how this is the internet and I know none of you personally, what good would it do for me to make that shit up? I was walking with pain free and energetic legs for a good bit there. I can't explain it, but it's not that way now and that is what it is. Psychosomatic? Maybe. Real? Maybe. Who knows for sure. I just know I hadn't felt that good in a really long time and it was for more than four days and I got excited and posted about it. That pretty much sums up what's happened. As of now, that period where I got a little better may as well have never happened for all the good it's doing me now. That's one of the things that really sucks about this whole process. You are basically 'waiting by the phone' for something to change. When it does, and it's in a positive direction for days, I am going to get really excited. Maybe I should have waited longer to post at all, but I was chomping at the bit for something positive that lasted longer than four days, so there we are.
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Postby av8rgirl » Mon Jul 07, 2008 2:17 pm

Jamie wrote:There's always HiCy.


Hey Lew, it's been posted on another forum that you are quitting to go on HiCy?

Thought I'd get it from the horse's mouth.
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Postby Loobie » Mon Jul 07, 2008 2:43 pm

I called Carrie Trekker at JH today and she picked up right away. She is emailing me what I have to do to get the whole process started. I'm still waiting a little longer, so I thought it would be good to get the ball rolling and see if there are any long lead time items I have to procure. I really, really want Tovaxin to work. I think it may be the answer for many, many MS'ers. But my wife looked at me this weekend and asked how long am I going to wait? It's a valid question. Save for the brief respite I had, everything has gone down hill and we are going to be at 5 months here pretty soon, and I really don't know if I was on the placebo or not, so I could have been on Tovaxin for about 18 months now. I already went through why I thought I was on placebo based on what it looked like, but I really don't know. I thought about what she had said and translated it into this: if it keeps getting worse at the rate that it is right now, next year I'll be about a 6 or 7 on the EDSS. So for me, and I can't speak for anyone else, time is of the essence.

I did have one disconcerting thing happen in our conversation though. She did say that, at least for now, they are not taking anyone who is secondary progressive. So I have to get an MRI and compare it to the one I had right before the trial. If there aren't GAD enhancing lesions, you're excluded. They are gearing up to try it on SP soon, but aren't taking it now. So I figured WTF, I can get my MRI and my records together, send them off to JH, if get excluded, I'm still in. If not, then I'll probably start packing.
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Postby chrishasms » Mon Jul 07, 2008 2:57 pm

Keep in mind Chris (PVNS)also had some serious issues in his MRI's. If you had the spots to get into the trial you probably got the spots to get into JH ASAP.

Get them in there and now that this is becoming more popular it's actually getting done really quick. Remember Keri with BlueSheild...she was cleared in 1 hour!
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Postby chrishasms » Mon Jul 07, 2008 2:59 pm

I still hope Tovaxin works though. I really think it's the way to go right a long with Revimmune.

It blows my mind how the body works.
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