Extension blood draw rescheduled!

JanethePain · Post by **JanethePain** » Tue Jan 29, 2008 9:03 am

hmtucker wrote:Thanks Lew,

I wonder as the protocol is tweaked and modified if they will use the tubes of blood from the next to last visit for the next stage MRTC assay and then the big bag-o-blood procurement a week or so after that. That would mean that the next vaccination would be ready very close to the end of the one year time period.

Mike

Alas, Mike, common sense (your post) and the protocol aren't coordinated at this point. I think the timing should have allowed for this, too. After all, Draculette draining us dry for the bag o' blood should have no impact at all on the tests we have to perform and MRI data.

I'm living up to my screen name on this subject. They could greatly benefit from some Jane the Pain organization!

JanethePain · Post by **JanethePain** » Tue Jan 29, 2008 9:07 am

Sweetyhide wrote:Speaking of rescheduled appts.
My first appt. for the rollover was just rescheduled.
Instead of tomorrow I have to wait another week.
Coordinator said something about paperwork delay.
HELLO!!! Ever heard of a fax?!? geez

Still hanging in though.

Let's just turn your avatar loose on 'em, Sweety!

hmtucker · Post by **hmtucker** » Fri Feb 29, 2008 1:42 pm

Loobie wrote: but now it is done. 69 days away!

Lew,

By the calendar you're getting pretty close to the 69 day mark right? Has Opexa contacted you to let you know if you're still on schedule to get your first injections in the next week or so?

As for me, I go in for my last IIb visit on March 20 and then the big-bag-o-blood-drain (BBOBD) on April 5.

Mike

Loobie · Post by **Loobie** » Fri Feb 29, 2008 1:52 pm

Mike,

No they haven't. My research coord. has not either and I'm pissed. I have emailed and called him about six times in the last week. I am going to call Opexa on Monday if my coord. does not call me by the end of day today. After reading about all the financial stuff and that, my mind is racing, but it tends to do that. He's probably just tired of me bugging him, but I don't care. My drug should be ready by Wed. and I still don't have my appt. set yet! Arggggh!.

ssmme · Post by **ssmme** » Sat Mar 01, 2008 2:34 pm

My final IIb visit is scheduled for March 13 with my big bag 'o blood draw scheduled for April 3rd. Of course that is our kid's spring break and I already have plans to visit my in-laws in Florida. I called my clinic to move it up to Mar 28th but I bet it gets delayed instead. This is the only week during the first 5 months of 2008 that I have anything planned. Typical isn't it!!

Marcia

hmtucker · Post by **hmtucker** » Mon Mar 03, 2008 1:10 pm

Loobie wrote:My drug should be ready by Wed. and I still don't have my appt. set yet! Arggggh!.

Lew,

Any word yet on your vaccination appointment?

Mike

Loobie · Post by **Loobie** » Mon Mar 03, 2008 3:31 pm

Yes, as a matter of fact there is!,

I don't know why (probably because I called Shannon Inman at Opexa), but my coordinator got a hold of me just today. Just like when I wasn't getting my blood drawn; I call Shannon, and poof, it's scheduled. Well anyway, my coord. called and said it is going to happen the third week of March. The 69 day manufacture they stated may be off a bit since Wednesday is the 69th day

. I don't know if they were BS'ing me about the 56 day culture and the 14 day manufacture, but maybe they sat on my bag of blood until they got some more people's blood to work with also. Hell I don't know. What I do know is that I'm going to see my Dr. tomorrow. I am having another relapse and may opt for steroids. Now that they have drawn me, they aren't worried about masking with steroids, so I bet that's what they do. I may not give them the option. If I don't stop the slide down the slippery slope I'm on, there may be no recovering. I mean four fucking relapses this year, damn!

My relapses don't hit me like a bat or anything. I don't know if anyone's do for that matter. I was getting ready for work today after a very bad Sunday (no energy at all; unusual) and I could barely make it up the stairs without stopping after making coffee. This normallly does not happen to me until very late in the day. I mean I have low energy moments after some physical exertion during the day, but this was basically first thing in the morning. So now we can put 4 relapses in my dossier for this blinded portion of the extension. Man if I quit having relapses, they are not going to have to use anyone but me to show efficacy of this drug. This year has sucked worse than anything I could have imagined. I'm getting real emotional too. I think it's starting to get to me bad. I mean we are now going to be 4 fucking months out from my year anniversary by the time I get my shots, and with their track record, I doubt that date also.

I have never felt even close to desperate in my whole life. I cried out of frustration this morning as I was preparing for work. I don't do that damn it! I'd just made my way down the stairs, was in the garage and couldn't bend over my car to flip the switch; you'd have to see the light in my garage to understand, and walking around my car (I know, real long walk) to get to it seemed so monumental after tiring out so bad just getting ready that I just dropped to the ground and started crying. I swear to Christ if they don't get this shit made up and up here soon I think I will pop like a zit. If there was some way that I could have any power in this circumstance I would exercise it like a scorned woman. I am so used to being able to hammer on people when they don't live up to expectations. I'm totally powerless in this situation and I simply don't know how to behave. After this trial is over, my MS is going to be 100% under my control like it was before. My Dr. has always gone whichever way I wanted to go as long as what I was talking about made sense. I even told him I was considering LDN one time and he didn't even bat an eye. My Dr. is not the problem. It's Opexa that's frustrating me at this point. I mean it was fucking Dr. Garces that gave me that bullshit about what day my Tovaxin would be ready. I'm sorry I'm being so rude, but I swear to God if the board of Opexa was in front of me right now I would figure out a way for them to feel what I've been feeling this last four months. All of last year was something I signed on for; not 16 weeks of delays. My apologies if I offended anyone with all my cursing.

Lyon · Post by **Lyon** » Mon Mar 03, 2008 4:03 pm

Loobie · Post by **Loobie** » Mon Mar 03, 2008 4:30 pm

I know, I hope I didn't ruin anything for anyone. I am just beyond any state of feeling powerless than I have even been (?). I reread it and everything, but I just couldn't edit that stuff out as I was still feeling like that. I normally don't curse like that unless I'm at work. It's like a requiremnent at my place of work to use the F-bomb all day long. Anyway, I think everyone on here who knows me knows that's not my MO and I hope I didn't cause any strife to Arron, but I'm just going nuts and am only partially responsible for my behavior

. I took my daughter to band practice and I let loose with the car stereo and I feel a bit better. Getting that news today about ANOTHER delay almost did me in right there. Every time I hear about a delay I just think I'm going to hunker down and just wait it out quietly. That's all fine and good until you throw in a nice MS attack and then you think "Is this it? Is this the one that's going to make me walk like this forever? Had I better write that letter to my daughter now since I may have cognitive issues before I know they are on me?" When you are awfullizing, the list of stuff like that goes on and on. I'll get out of it somehow, I always do. It just keeps gettting harder and harder to do.

Loriyas · Post by **Loriyas** » Mon Mar 03, 2008 5:01 pm

Lew,
I am so sorry about another delay for you. I am also sorry you are having another relapse. I don't know what else to say but that I am wishing you the best. You certainly deserve it.
Lori

dignan · Post by **dignan** » Mon Mar 03, 2008 5:04 pm

Loobie, I think sometimes the f-bomb is the right word to express your emotions. I thought you used it in right way in your post. I hope that anybody on this site would be allowed to drop an occasional f-bomb if they need to express extreme frustration or similar emotion.

My fingers are crossed for you to see great results from tovaxin.

Lyon · Post by **Lyon** » Mon Mar 03, 2008 5:11 pm

Terry · Post by **Terry** » Mon Mar 03, 2008 5:58 pm

Bob, both my feet and legs were totally numb in spring 2006. I used to walk out of my shoes and not know it. Now I am better, but all my toes on both feet are still "numbish". I tell you this so you know your wife is not alone with this MS issue.

Terry

Lyon · Post by **Lyon** » Mon Mar 03, 2008 6:52 pm

Terry · Post by **Terry** » Mon Mar 03, 2008 7:54 pm

You are welcome, Bob. I am wishing her my best.

Lew, I hope your day tomorrow is better. Since Lori sent me that sunshine, maybe she can send you some energy. Lori?

Terry