Triple Negative Breast Cancer, "I Won't Back Down!": Komen Blogger Summit

What is TNBC

WHAT IS TRIPLE NEGATIVE BREAST CANCER?

Just in recent years, Triple Negative Breast Cancer (TNBC) has sparked interest in the news where instead of calling the tumor as ER-negative, PR-negative, and HER2-negative; researchers began using the shorthand term, "Triple Negative," dubbed the "new type" of breast cancer. Being Triple Negative, you don't have a targeted therapy and your only treatment option is chemotherapy.

Triple Negative Breast Cancer is seen in about 15% of all breast cancers. TNBC is a very aggressive cancer that tends to strike younger women, pre-menopause, especially among African-American women and women who have BRCA1 mutations. The tumor tends to be fast growing and is less likely to show up on an annual mammogram. TNBC is more likely to metastasis early on; has a high rate of recurrence in the first 2-3 years from diagnosis and has a poorer prognosis than other types of breast cancer due to lack of specific, targeted treatment for TNBC.

Showing posts with label Komen Blogger Summit. Show all posts

Sunday, June 21, 2015

Komen Series #1: Experience The Mission of Expanding Care and Advancing the Science 2015

Once again, I was thrilled and honored to be invited back by Komen National to participate along with 6 other breast cancer bloggers at Komen's Blogger Summit 2015, Experience The Mission: Expanding Care and Advancing the Science on May 8, 2015. I recognized and was happy to see some former bloggers from last year, Rene Syler, Nicole McLean, Renee Ross and Debbie Woodbury. New to the Summit this year were bloggers, Tami Boehmer and Jill Cohen, both living with metastatic breast cancer. The Summit consisted of listening to and interacting with Komen representatives, a Komen Scholar, a Research Grantee and Komen Advocates speaking on Komen's Mission. As I attended the 2nd annual Komen Blogger Summit in Washington DC, I learned that Komen is focusing in on how they're making a difference and how are they helping in 3 key areas:

Metastatic Breast Cancer
Training young investigators for the next generation of breast cancer researchers
Breast health disparities in uninsured women

With only 15% of Komen's $50M devoted to research in 2013 went towards Metastatic Breast Cancer, some women living with metastatic disease says that's not enough. Komen is listening to these women as metastatic breast cancer dominated the conversation among the bloggers at the Summit.
1 in 5 patients diagnosed with breast cancer are living with metastatic disease. Treatment can relieve symptoms, extend and improve quality of life for many years, but most patients with metastatic breast cancer cannot be cured. Komen is looking into expanding care for women living with metastatic breast cancer... What do they need and what do they need now to live life to the fullest for however long their life may be?

ANTONIO WOLFF, M.D.
KOMEN SCHOLAR

Dr. Antonio Wolf stressed that accuracy is huge in treatment. His research involves giving the least amount of chemo to avoid issues with over-toxicity, false positives and genomics. Difficulties arises when you biopsy from different metastatic sites and resulting in different genomics make-up. More research needs to be done to understand the biology of metastatic breast cancer. Wolf stated they need the tools to further research in metastatic breast cancer, they just didn't have the basic science back then. Another challenge breast cancer researchers face is that only 3% of patients participate in clinical research.

Dr. Wolf, Dr. Raffey and Dr. Stover

Komen's funding for the best research and brightest researchers are determined by a team of Scientific Advisory Board, Komen Scholars and Advocates in Science as they look at the merit of a research project. Will it be successful and lead to a clinical trial? The process starts with a strategic direction of Komen's scientific focus; then it is reviewed by it peers followed by Science Advocates ensuring that Komen's funding research that has the greatest patient impact. Komen advocates makes sure patient's voice is heard in Science.

DANIEL G. STOVER, M.D.
KOMEN POSTDOCTORAL FELLOWSHIP
GRANTEE

Young investigator, Dr. Daniel Stover who's focus in on drug/chemotherapy resistance in Triple Negative Breast Cancer (TNBC), presented his research on TNBC and why do patients respond differently to chemo?... Triple Negative Breast Cancer is not a "single disease." Dr. Stover will be researching the cancer's DNA Barcode to determine what chemo will work on TNBC patients. I took advantage of the opportunity to pull Dr. Stover aside after the conference to speak to him about the future of a targeted therapy for TNBC patients. Dr. Stover agreed that with having several subtypes of triple negative breast cancer that there won't just be one singular targeted therapy, but several target therapies is needed to be discovered. Stover said that researchers are getting closer to finding a targeted therapy for TNBC, which gives me great hope that this day will come.

Komen's research programs continue to focus on young investigators for the future with funding of more than $134M in over 685 grants to help with their training and career development in their research.

Disparities in health care continues to be a huge concern today, and Komen is committed to help eliminate inequities through their community outreach programs to increase access to quality breast health care and screening for African-American and Hispanic uninsured women. Komen is currently funding multi-year grants in Washington DC and Chicago Metro to combat breast health disparities.

5% of black women die everyday of advanced breast cancer. I remember Dr. Judith Salerno saying more than once that this is just unacceptable! The elimination of inequities in prevention, screening, diagnosis, treatment and survivorship for all women is being addressed by Komen and their partner organizations.

Komen's impact in the community is determined by targeting the area of highest needs and supporting community partners to address those needs. In 2013, Komen had devoted $76M in grants to more than 1300 community partner agencies to fund education, diagnostics services, treatment and survivorship programs to those in greatest need.

NORM BOWLING

Chief Revenue and Marketing Officer, Norm Bowling spoke of the importance of partnerships with big corporations... It is a great way of extending their mission message to their followers, reaching larger audiences. In addition, these big corporation partners help fund-raise for Komen. Bowling leads the Komen 3-Day race series raising more than $850 million since 2004.

At last years conference, Komen marketing team and bloggers discussed Komen's website and social media. Suggestions were made to Komen in efforts of reaching a wider audience and what information a person may be looking for when they go to the Komen Website. Komen is committed to building relationships with people they serve. Since then, Komen had expanded their social media. In addition to Facebook and Twitter, they have added Pinterest and Instagram to their Website. Komen has revamped their website to make it easier to navigate and have topics geared towards what part of their journey they are in now and issues they are facing as they're going through their journey. Komen has been adding personal stories of breast cancer survivors to inspire others to have hope and see the faces of others surviving and/or living with breast cancer. Komen has received a lot of positive feedback and more traffic to their website since they updated and improved it. People need to hear what Komen's focuses are and changes they're making was suggested by one blogger. Also suggested, some bloggers agreed that Komen should get rid of the word, "awareness" in their campaign, proclaiming that we are all aware... and use terms, education and information instead. Check out the new look of Komen's website that is an excellent resource that helps navigate you through every step of your journey, and addresses survivorship concerns too.
Click to link: http://ww5.komen.org

Komen continues to be one of the top funders in Breast Cancer Research outside of Government Funding. - $50 Million, 2013

Komen's commitment to research has resulted in $847 million to date as of 3/31/14, funding more than 2400 research projects and over 450 clinical trials in total. These investments covers research in treatments, biology, early detection and prognosis, causes of breast cancer, model systems, prevention/risk prediction and survivorship.

Komen has reached across the globe with investing more than $30M internationally in more than 50 countries.

Komen's research has been primarily focusing on prevention, early detection and metastasis of breast cancer.

Komen's investment in breast cancer prevention research exceeds $48M in over 85 grants and 15 clinical trials.

Prevention research is looking at the immune system and lifestyle risk factors, preventative drugs and vaccines, identifying biomarkers to determine who is at high risk of developing breast cancer and dietary approaches.

In early detection research, Komen has spent more than $33M in over 115 grants to improve breast cancer screenings and technology and development of strategies to increase the number of women to get mammograms.

Their research in the development of ultrasound tomography that uses sound waves to create 3D breast images looks to be more promising than mammograms in detecting breast cancer in women with dense breasts.

Komen has invested more than $98M since 2006 in over 200 grants focusing on metastatic breast cancer research.

Research is looking to identify genes that causes breast cancer cells to metastasis, develop new treatments to prevent and treat metastasis, and discovering new methods to predict and detect metastasis.

Friday, May 15, 2015

Komen Series #3: Together, We Are Strong in the Mission

While attending the reception and dinner at May 8, 2015, Komen Blogger Summit with fellow bloggers and Komen's social media team, conversations continued on Metastatic Breast Cancer while speaking with Komen Founder, Nancy Brinker. Although it is not common in the U.S., 5% of newly diagnosis women will be diagnosed with Stage 4 Metastatic Breast Cancer. Nancy Brinker touches on this area saying,

"...we need help developing the kinds of stories and keeping passion alive with the people who want to tell these stories and making them real and calling the media to accountability to make sure this is kept high and near...

...at the end of the day, if we don't do these things, we don't keep this issue to your point, the 5% of the people, and they don't know people still got it, you're right, people, they think that everybody is just gonna walk in the park and they are just gonna live with it..."

Komen's recently advocated to Congress for more funding not only for breast cancer research, but the need for more biomedical research support in general, increasing the NIH budget. Another issue Komen discussed was oral parity... to take a pill that can make a difference in quality of life while going through treatment. Dense breast and different kinds of screening were also discussed as well as disparities in breast cancer.

"It means that we, our voices together can make a difference. Elevate the conversations as we say, we can really bring people together and make them more aware." _ Dr. Judith Salerno