TNBC Metastasis/Recurrence Users - clinical trials MTNBC-BreastCancerTrials.org

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clinical trials MTNBC-BreastCancerTrials.org

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Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=10407
Printed Date: Mar 26 2026 at 7:44pm
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Topic: clinical trials MTNBC-BreastCancerTrials.org

Posted By: SagePatientAdvocates
Subject: clinical trials MTNBC-BreastCancerTrials.org
Date Posted: Oct 16 2012 at 11:21am

Dear TNBC family,

I am posting information in the Metastasis forum because BreastCancerTrials.org has also broken down the categories of trials for metastatic TNBC.

https://www.breastcancertrials.org/bct_nation/public/public_browse_trials.seam?attributes=16384&attributes=4&attributes=64 -

https://www.breastcancertrials.org/bct_nation/public/public_browse_trials.seam?attributes=8192&attributes=4&attributes=64 -

https://www.breastcancertrials.org/bct_nation/public/public_browse_trials.seam?attributes=32768&attributes=4&attributes=64 -

I think BreastCancerTrials.org is an important, non-profit, resource. They have worked hard to create separate information for TNBC and for full disclosure purposes they requested that I try to help in the project and I did, as a volunteer.

This genesis of this site is due in part to Dr. Debu Tripathy, a wonderful oncologist formerly at UCSF and now at USC, as well as UCSF faculty members Drs. John Park and Laura Esserman.

http://cancer.ucsf.edu/people/profiles/park_john.3583 - http://cancer.ucsf.edu/people/profiles/park_john.3583

http://cancer.ucsf.edu/people/profiles/esserman_laura.3704 - http://cancer.ucsf.edu/people/profiles/esserman_laura.3704

There is an ongoing effort to make BreastCancerTrials.org a site of excellence. The site now operates as a non-profit service, though it remains affiliated with UCSF.

It takes a bit of time to register but I feel the effort is worth it and in my opinion BreastCancerTrials.org is an excellent resource.

I encourage you to try to spend some time on the site and become familiar with their features-

https://www.breastcancertrials.org/bct_nation/home.seam - has recently updated its website. As part of its redesign, BCT has expanded its popular https://www.breastcancertrials.org/bct_nation/browse_trials.seam?categoryString=LYMPHEDEMA&pageRecord=0&cid=43 -

https://www.breastcancertrials.org/bct_nation/public/public_browse_trials.seam?pid=Avatar120%40bct.org&groupedByProximity=1&cid=6605 -

My friend, Elly Cohen, Program Director for BreastCancerTrials.org has kindly authorized me to publish her contact information. Elly is a breast cancer survivor.

She is a lovely, very bright woman, and her heart is with our community. I am proud that she is my friend.

Here is Elly's contact info.

Elly Cohen Ph.D.

Program Director for BreastCancerTrials.org

Assistant Professor, UCSF Dept. of Surgery

file://localhost/tel/%2528415%2529%20476-0264 -

mailto:elly.cohen@ucsfmedctr.org - http://www.BreastCancerTrials.org/ -

I believe there is a special culture at UCSF with many devoting an extraordinary amount of time in an effort to help women with breast cancer.

I also feel close to Debby Hamolsky who is an oncology nurse at UCSF and is a clinical advisor to the site. She has devoted her life to helping women with cancer and she is a marvelous woman. Here is a link to some of the folks involved with the BCT.org site.

http://https://www.breastcancertrials.org/BCTIncludes/WhoWeAre/StaffAndAdvisors.html - http://https://www.breastcancertrials.org/BCTIncludes/WhoWeAre/StaffAndAdvisors.html

I would also like to mention Laurie Eisenberg, another breast cancer survivor, who has spent countless hours developing this site. Another very special woman. I know I sound repetitious but there are some amazing professionals at UCSF. Three more that I would like to mention are Dr. Michelle Melisko who is a wonderful oncologist who specializes in brain mets, Dr. Hope Rugo, a TNBC expert, who specializes in clinical trials and Beth Crawford who I believe is one of the top Certified Genetic Counselors in the U.S. When I first found out that I had the BRCA mutation, eight years ago, Beth spent three hours with me patiently explaining what my daughter, my other five children and I might be dealing with regarding BRCA. She continues to work tirelessly to help folks with breast, ovarian and other cancers and/or for folks at high-risk for various cancers. A marvelous woman.

As you can see, my feelings for UCSF run deep and I am delighted to recommend BreastCancerTrials.org as a resource.

warmly,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Replies:

Posted By: kidzrn
Date Posted: Oct 16 2012 at 12:04pm

Steve, have you heard about a vaccine trial with either stable or NED status. It was mentioned this weekend , I think by Elly but I did not get the link/info....Also do you have any inside information on the http://cancermoonshots.org/moon-shots/breast-ovarian/ study in 2013 at MDA? thanks Christi

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christi

2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, then Avastin every 3 wks until 2012...NED since 2/09

Posted By: SagePatientAdvocates
Date Posted: Oct 16 2012 at 7:51pm

Dear Christi,

sorry I was out all day and just saw this.

I have just called Elly re: vaccine but she seems to be gone for the day. I also emailed her. I will post as soon as I hear from her.

Regarding MD Anderson's 'moon-shots' program I do not have any special insight.

here is information from MDACC's press room.

http://www.mdanderson.org/newsroom/news-releases/2012/ut-md-anderson-cancer-center-launches-unprecedented-moon-shots-program.html - http://www.mdanderson.org/newsroom/news-releases/2012/ut-md-anderson-cancer-center-launches-unprecedented-moon-shots-program.html

I am just overjoyed, for our community, that one of the cancers they will be focusing on is TNBC. Also, very pleased that ovarian cancer will be a special target as well. My grandmother died from ovarian cancer when she was 47 and I was 2. I wish I had known her. That was 1946 and 65+ years later there is still no accurate test for early detection of ovarian cancer. 80% of ovarian cancer is diagnosed as Stage III/IV disease and is often fatal within 5 years.

Christi, I believe that if MDACC has some announcements to make about progress in fighting these cancers they will be made in a timely manner. Sorry, I can't be of more help.

warmly,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: SagePatientAdvocates
Date Posted: Oct 17 2012 at 11:30pm

Dear Christi,

I spoke to Elly today and she promised to email me the vaccine details tomorrow..

will pass them along as soon as I receive.

warmly,

Steve

Posted By: SagePatientAdvocates
Date Posted: Oct 18 2012 at 12:44am

Dear Christi,

just received and, unfortunately, this trial is not for our community...it is for women with HER2+ disease.

warmly,

Steve

This is the trial I was referring to during my talk. It is for HER2+ metastatic patients with either stable disease or no evidence of disease.

The Cancer.gov record is: http://www.cancer.gov/clinicaltrials/search/view?cdrid=520428&version=healthprofessional - http://www.cancer.gov/clinicaltrials/search/view?cdrid=520428&version=healthprofessional