Tovaxin Trial Progress

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ewizabeth
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Tovaxin Trial Progress

Post by ewizabeth »

Hi Everybody,

I had my sign up appointment today. My procurement and baseline visit will be December 29th. My doctor explained everything quite well. One thing I was not aware of is, if I do get the placebo, and things start to get bad with the MS, I can be treated with steroids or even have other treatment if necessary and stay in the trial. I would not want to do that, but it is an option.

I'll be giving lots of blood and having other tests next time. If I have enough of the MRTC's I'll be in.

Keep your fingers crossed for me! I'm an official Guinea pig now. :) Although I have to say that my doctor and his nurses take exceptionally good care of the patients, both in the trials and the regular patients. I'm very lucky.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Post by flipflopper »

I do hope you get accepted into the trial Ewizabeth! I went for my first screening visit Nov 14. I still haven't received the phone call telling me if MRTC's where found in my blood. I always thought of myself as a patient person...until now. I'll keep everyone updated once I find out if I was accepted for this clinical trial.
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Post by Lyon »

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Post by ewizabeth »

flipflopper wrote:I do hope you get accepted into the trial Ewizabeth! I went for my first screening visit Nov 14. I still haven't received the phone call telling me if MRTC's where found in my blood. I always thought of myself as a patient person...until now. I'll keep everyone updated once I find out if I was accepted for this clinical trial.
Yes, do let us know when you find out Flipflopper. I don't know how long it takes for them to test for the MRTC's... I'll have the tests late December, and we'll be on vacation Jan 14-21 so they won't be able to do anything with me during that time anyway. It is a fairly demanding trial, but I think it will be well worth it!

I am technically accepted, but I do need to have enough of the MRTC's of course.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Post by ewizabeth »

Lyon wrote:AWIGHT EWIZABETH!! CONGWATUWATIONS!!

I'm happy for you and I hope everything goes well through the rest of it!

It's opportune that you mentioned specifically what you did. I remember them telling my wife that if she had an exacerbation during the trial she could utilize other treatments and I remember thinking "Damn right, she's going to do what she needs to do regardless of the trial". I didn't realize they meant that she could utilize other treatments and stay in the trial. Cool!

Wow, maybe we should have some T shirts made with guinea pigs on the front!

I'm glad things are going well so far and I'm glad you're excited about it!

Bob
Thanks Bob, :)

One other thing he mentioned. There is the requirement that I be off steroids 60 days before the trial. He said that in the trial there should be no steroid use of any kind, including topical steroid creams, and steroid-containing inhalers. I use Nasonex, a steroid inhaler, so today was my last day for that as well as the Copaxone. I might need to start taking a daily antihistamine for my allergies while in this trial to keep my allergies from giving me headaches.

This trial sounds so good, really good. I hope there are good results as there have been before. This could be a promising treatment for those with Type I or Juvenile Diabetes too. That is a terrible illness that often affects children. It will be great if this works for that as well.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Post by sh8un »

Good luck guys...I am very happy for you. Thank you for posting your experiences.
NN
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Post by ewizabeth »

Lyon wrote:Gosh I'm sorry to hear that it's going to take so much adaptation on your part.

My wife doesn't have allergies that we're aware of but we'll have to inspect any prescriptions she gets in the meantime because they put steroids in a lot of things nowadays and don't bring it to your attention.

Until you mentioned it I'd forgotten that Opexa bought or combined with that Chinese or Korean company working on the diabetes vaccine.

Bob
It's ok Bob. I can make do with the antihistamines. It isn't quite as good as the inhaler but it does the job. Not to worry! I'm tough and I'll manage. I just thought I should mention it in case the other doctors didn't emphasize it too much.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Post by ewizabeth »

sh8un wrote:Good luck guys...I am very happy for you. Thank you for posting your experiences.
NN
Thank you sh8un. I thought it might be good to post about it to let others know a few of the details of what might be up and coming treatments.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Post by Lyon »

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Post by ewizabeth »

Lyon wrote:I had wondered earlier if Tovaxin acted far enough back in the immune process to show improvement with allergies but it focuses specifically on myelin reactive T cells so I suppose not.
Bob
That would be really nice if it did! I could get another cat!! :)
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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How could you not like cats?? :? (Just kidding... ;-) )

Post by ewizabeth »

I love cats! :) My sister has several, my brother has two. We always had one or two. My baby Sweet Pea, my elderly kitty passed away last summer, had to have her put to sleep. She was sick and frail and had dementia and pain... the poor poor baby. Anyway, I wanted to get another one soon after she was gone.

Well, my allergies were so much better when she was gone, I could breathe at night. Same with my husband, he wasn't coughing and sneezing as much. So, we probably won't get another cat. But when I go see my siblings, I hold their cats the whole time... soon they'll probably be to the point of hiding when they see me coming. My eyes burn and tear, and my nose gets stuffy, but it's worth it once in awhile.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Re: How could you not like cats?? :? (Just kidding... ;-)

Post by Lyon »

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Post by flipflopper »

Lyon wrote: CAT?? No, really I like cats.

Kind of taste like chicken.....if you cook them right :twisted:


8O 8O I’m a cat lover! But, I don’t think I like cats the same way you do Lyon :wink:


ewizabeth wrote: Yes, do let us know when you find out Flipflopper. I don't know how long it takes for them to test for the MRTC's... I'll have the tests late December, and we'll be on vacation Jan 14-21 so they won't be able to do anything with me during that time anyway. It is a fairly demanding trial, but I think it will be well worth it!

I am technically accepted, but I do need to have enough of the MRTC's of course.
.

It takes about two weeks so I should know soon. If I am accepted, I will keep you all informed about my experience with this clinical trial.
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