TOVAXIN ROLE CALL

Lyon · Post by **Lyon** » Thu Feb 01, 2007 6:27 am

CureOrBust wrote:[So I would guess you could make a heap of MRTC's, and if they dont get into your CNS, you wont have a relapse.

Good point Cure and one that I personally don't consider often enough.

It seems that one of the hardest things about determining facts about MS is that what is going on inside the CNS isn't readily accessible.

This again gets into what I consider the "self evidents". Despite the fact that it should be obvious (self evident), and might be to a lot of people, it hadn't gone through my mind until now that what "really counts" are the MRTC's in the CNS. Not that they could or should do any different, but Opexa draws blood from the arm. That's a tidbit of common sense which kind of has some importance but I hadn't consciously considered.

We need to write this crap down as it presents itself somewhere. Despite there not being a lot of "facts" about MS, there are a lot of "factoids" which would be nice to document so that every one of us don't have to learn them the hard way.

Bob

sh8un · Post by **sh8un** » Thu Feb 01, 2007 9:06 am

Thanx COB. I think I am just going to stop trying to figure out this vaccine. I don't have enough information to come with an answer to my questions. I will just have to wait and see.
NN

CureOrBust · Post by **CureOrBust** » Fri Feb 02, 2007 12:30 am

Lyon wrote:Good point Cure and one that I personally don't consider often enough.

I can think of a recent thread that might bring it to your attention...

sh8un wrote:...I think I am just going to stop trying to figure out this vaccine. I don't have enough information...

Please, dont forget, I was guessing on this based on what I have personally previously read, and MY logical conclusions. In other words you could wait till you know more, or make it up as you go along, like me.

ewizabeth · Post by **ewizabeth** » Thu Feb 08, 2007 2:32 pm

Well, my first test for MRTC's turned out negative. I get tested again on the 23rd, so keep your fingers crossed for me for a positive result next time. I have a history of low WBC counts too, and that's an issue as well, but if I can get the MRTC's, then it shouldn't keep me from participating.

Lyon · Post by **Lyon** » Thu Feb 08, 2007 2:51 pm

ewizabeth wrote:Well, my first test for MRTC's turned out negative. I get tested again on the 23rd, so keep your fingers crossed for me for a positive result next time.

Fingers crossed and ready Ewizabeth! Not to get your hopes up prematurely but sneaking suspicion that Opexa improved something in their system since the last time your mrtc's were tested.

We can hope anyway!
Bob

PS...I emailed some of the recent questions to Tim Wesner and added those responses to my website (which is in dissarray) so, if you'd like, click on the www below and the Tovaxin link.

Loobie · Post by **Loobie** » Thu Feb 08, 2007 3:07 pm

Good luck Ewizabeth. I'll say a prayer for you.

Lew

Guest · Post by **Guest** » Fri Feb 09, 2007 7:34 am

Good luck Ewizabeth and a quick question too: why are low WBC counts an issue with Tovaxin?

ewizabeth · Post by **ewizabeth** » Fri Feb 09, 2007 7:51 am

Thanks Everybody! I'll keep you all posted!

The WBC counts could indicate an underlying blood disease of some sort. I saw a hematologist in Dec 05, who said the WBC levels weren't an issue, and I need his report to have on record to continue in the study even if I have the MRTC's next time. So far, I haven't been successful in getting that from him. I suppose I'm going to have to sign a release form to have them faxed directly to the neuro. I'm just hoping that he actually saved my records. It bothers me that it's so difficult to get something from him.

Lyon · Post by **Lyon** » Fri Feb 09, 2007 8:45 am

ewizabeth wrote: I saw a hematologist in Dec 05, who said the WBC levels weren't an issue,

Hi Ewizabeth,
Not to change the subject but I find that interesting that you have low WBC and I wonder how common that is with the MS afflicted.

Some months ago Raven said the Campath researchers noticed that after Campath treatment there was some problem with homeostatic expansion/proliferation, which caused me to wonder if the problem was there before treatment and no one had checked. I never did find out.

If you don't mind my asking, how did you happen to find out you have a low WBC?

Bob

ewizabeth · Post by **ewizabeth** » Fri Feb 09, 2007 2:43 pm

Hi Lyon,

I think the low WBC counts began when I was taking Avonex (in 2003?), persisted while I was on Rebif, and even while on Copaxone.

The only problem I ever had before was with hemoglobin, and that was from a different problem altogether.

The low WBC includes the related neutrophils and sodium when it happens. I also take HCTZ for high blood pressure, and when I saw the hematologist I was told that that, and two of my other meds at the time can cause low WBC counts.

It might end up disqualifying me, and if so, there will be something else to come along eventually that will be good for me. OR, when Tovaxin is approved, I might be able to take it then, outside of a trial. I'm trying not to focus on that, still really hoping I'll be able to stay in the trial. But it isn't going to do me any good to mope around about it...

Guest · Post by **Guest** » Fri Feb 09, 2007 3:12 pm

ewizabeth wrote: It might end up disqualifying me, and if so, there will be something else to come along eventually that will be good for me. OR, when Tovaxin is approved, I might be able to take it then, outside of a trial. I'm trying not to focus on that, still really hoping I'll be able to stay in the trial. But it isn't going to do me any good to mope around about it...

Hi Ewizabeth,
I wish I knew more about how they do a WBC count because it almost seems that when they're counting they would just be counting WBC's in general and wouldn't even know which kind each of them are.

Since you have MS you evidently produce enough myelin reactive t cells to cause trouble so beyond that I'm not sure why it matters how many and what kinds of other WBC's you have.

Oh well, I can't give you an answer but I can wish you good luck!

Bob

ewizabeth · Post by **ewizabeth** » Fri Feb 09, 2007 3:32 pm

Thanks Bob,

Whatever happens, I'm sure it will be ok. I'll check in if anything drastic happens!

Lyon · Post by **Lyon** » Fri Feb 09, 2007 3:43 pm

Hi Ewizabeth,
Not that you would try to skew the results!
Bob

# Acute emotional or physical stress can increase WBC counts.
# People who have had their spleen removed (splenectomy) will have a persistent mild elevation of WBCs.
# Drugs that may increase WBC counts include epinephrine, allopurinol, aspirin, chloroform, heparin, quinine, corticosteroids, and triamterene.
# Drugs that may decrease WBC counts include antibiotics, anticonvulsants, antihistamine, antithyroid drugs, arsenicals, barbiturates, chemotherapeutic agents, diuretics, and sulfonamides.

ewizabeth · Post by **ewizabeth** » Fri Feb 09, 2007 3:55 pm

The ironic thing is, I had it retested last Friday, and the WBC levels were up to normal ranges. Nevertheless, I have to have an acceptable explanation for the occasional low levels I get about half the time.

Maybe I'll get my spleen removed...

Guest · Post by **Guest** » Fri Feb 09, 2007 4:02 pm

ewizabeth wrote:The ironic thing is, I had it retested last Friday, and the WBC levels were up to normal ranges. Nevertheless, I have to have an acceptable explanation for the occasional low levels I get about half the time.
Maybe I'll get my spleen removed...

Are you sure you're going to have to explain it?
How could you explain it?
Is "shit happens" an acceptible explanation?

At the clinical trial site:

A: You notified them of your occasional low WBC count?
B: They noticed it in the blood test?
C: They don't know about it and you are thinking of telling them?

Bob