Xolair study in Tampa

Posted on: Wed, 05/19/2004 - 3:24am
Beth's picture
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Joined: 03/06/1999 - 09:00

This was in the newspaper today, we are asking for more info as my 16 yr old daughter might want to do it.
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Test to look at drug for peanut allergy
USF and Tampa General are among those working to test Xolair's effectiveness on a potentially deadly allergy.

(Oops, I had posted the entire article, but see someone beat me to it in the media section, so I will remove most of the post.)

[This message has been edited by Beth (edited May 19, 2004).]

Posted on: Wed, 05/19/2004 - 11:21am
synthia's picture
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Joined: 10/05/2002 - 09:00

Hi Beth,
Good to see you posting!
Let us know how it goes.
Love this site
Synthia

Posted on: Thu, 06/24/2004 - 12:23pm
Beth's picture
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Joined: 03/06/1999 - 09:00

Unfortunately I haven't heard a thing from the people running this study. I even called and left a message again this week. I asked if they would please let me know either way, so we can quit hoping to be involved if it isn't going to happen. No response. Disappointing.

Posted on: Thu, 06/24/2004 - 3:55pm
rebekahc's picture
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Joined: 12/02/1999 - 09:00

My 7 year old DS was just approved for Xolair today! The pharmacy called and will ship his meds next week - yea [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
When the pulmonologist and I discussed trying to get DS on Xolair, I suggested we try to get into one of the trials since DS is also PA. Our Dr. did NOT want us doing the trial because he didn't want to run the risk of DS getting the placebo instead.
I did however research the trials and could find NOTHING about them. I searched the web - found nothing. I talked to the people at 1-800-4XOLAIR; they knew nothing. They sent me to someone else - scientists or something working on the drug - they also knew nothing. The nurse I spoke with today who will be shipping the meds didn't know anything about PA trials either...
It's really too bad they don't seem to have their act together on the food allergy aspect of this wonderful drug [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
Rebekah
P.S. We started trying to get Xolair back in early April...

Posted on: Thu, 06/24/2004 - 11:26pm
jtolpin's picture
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Joined: 05/28/2003 - 09:00

Wow, Rebekah!
Good luck with Xolair!
Jason

Posted on: Fri, 07/09/2004 - 1:12pm
rebekahc's picture
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Joined: 12/02/1999 - 09:00

DS had his first dose of Xolair today. If you want to read more about it please see
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000154.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000154.html[/url]
Rebekah
edited when I figured out how to post a link [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by rebekahc (edited July 09, 2004).]

Posted on: Mon, 08/30/2004 - 9:00am
Beth's picture
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Joined: 03/06/1999 - 09:00

We finally heard back about the study and got a protocol in the mail. My daughter won't be able to participate, she is very disappointed. I must admit, I am kind of relieved, but also disappointed. The amount of time required for this study would be impossible for a high school senior. The 4 food challenge days would all have to be week days, all day. That alone makes it impossible. I only hope they are able to find enough participants who can commit to it. The woman I spoke to said they have some younger students, home schooled I would imagine. Too bad this couldn't have been done over the summer. Oh well, now the decision is out of my hands. Hopefully xolair will be a helpful drug in the near future for PA people.

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