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Old 07-09-2007, 07:49 AM   #1
Joe
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New Clinical Trials including brain mets

I received the following:

Joe,

I wanted to bring this trial to your attention that I recently learned about as an ECOG patient rep. The drug being studied in combination with Herceptin, Vorinostat (also referred to as SAHA), is in the very early testing (Phase I/II) by ECOG. It is for Her2+ patients who have metastasized while on Herceptin. As I understand it, any mets are fine. Particular attention in this trial is being paid to brain mets because, as a I understand it, there is early exciting data to suggest that Vorinostat may cross the BBB and go after the tumor quite impressively. In this trial, a patient must have previously been treated for brain mets (radiation or surgery). I understand a future trial is being planned where no prior brain mets treatment will be required but that is not the case here. Given how early the trial is, there is obviously nothing that can be said about the efficacy (or lack thereof) about SAHA. However, there really is some early interest in what is happening with brain mets patients on the trial. More patients are needed for the trial so I wanted to bring this to your attention. Obviously I don't want to hype anything, so I will leave it to you to decide what, if anything, you want to do with this.

I wanted to bring this to your attention because of Christine's case, as well as others on the site who are struggling with brain mets. Attached are links to descriptions of this trial. Also attached is a link where the principal investigator, Dr. Ramona Swaby of Fox Chase, gives a very, very brief description of the trial. The audio was prepared by some of the ECOG patient reps. We can talk a bit about whether it makes sense for your site to link to some of these investigator videos/audios.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=449963&version=Healt hProfessional&protocolsearchid=3450508

http://clinicaltrials.gov/ct/show/NCT00258349

http://nyckatz.com/trials/etpages/e1104.html

If you go to video.acor.org, you will see all of the videos the ECOG patient reps have prepared to date. There are about three of them that relate to b/c (though I am not sure if any of the other three relate to Her2 b/c or not -- it's been a while since I reviewed them). It is perfectly fine if you want to provide links on your site.

Let's discuss.

I hope all is well with Christine and you.

Best regards,
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Old 07-12-2007, 10:21 AM   #2
Cynthia
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Friends,

I am the one who provided this to Joe. I sat in on a scientific discussion relating to the EARLY findings on this trial. Very interesting, particuarly relative to Her2+ previously treated B/C brain mets. If anyone would like more information, please email me and I will put you in touch with folks who might be able to answer your specific questions and/or could provide you with information to discuss with your doctor.

(I have no personal involvement with this trial -- just wanting to pass along hopefully helpful information.)

Best regards,

Cynthia

cgilman@clgassociates.com
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Cynthia
Diagnosed 9/03 @ 43 years (pre-menopausal)
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CAF x 6; Radiation; One Year Late Herceptin
Oophorectomy; Arimidex
Completed E75 Vaccine Trial; Completed E75 Vaccine Booster Series
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