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-
BreastCancerTrials.org has recently updated its website. As part of its redesign,
BCT has expanded its popular QuickViews feature
to include QuickViews developed specifically for patients with Triple Negative
Breast Cancer. Click on any of the links below to learn more about treatment
and other types of trials for each situation:
Early Stage TNBC
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
(415) 476-0264
elly.cohen@ucsfmedctr.org
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.
As you can see, my feelings for UCSF run deep and I am delighted to recommend
BreastCancerTrials.org as a resource.
warmly,
Steve
links to some of the UCSF professionals mentioned above-
Edited by steve - Oct 16 2012 at 8:18pm