Dear TNBC family,

I would imagine that most of the threads on our new forum will be about all aspects of chemotherapy and the experiences our family members are having or protocols they are contemplating. Adjuvant chemotherapy as well as neo-adjuvant chemotherapy will be discussed. Also there will be research papers presented here as well as other resources. One of the important ones, I feel, for our community is the area of clinical trials and I am posting this on our new Let’s Talk Chemotherapy forum because some of the trials are for early stage TNBC. I will also posting information in the Metastasis forum because BreastCancerTrials.org has also broken down the categories of trials for metastatic TNBC. 

I am not a medical professional and I am not recommending that anyone here enter a clinical trial instead of doing standard therapy but I feel it is important for our members to have as much information as possible so that they can question their oncologists.

On a long-term basis I am hopeful that clinical trials will bring new more effective treatment for our community. And it is also clear that many clinical trials will fail. 

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.  

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 on the site, 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 -  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.