Our MBC Life

SHARE Cancer Support

From SHARE Cancer Support this is Our MBC Life. A podcast dedicated to exploring life with metastatic breast cancer from the perspective of us, the people living with this disease, and the experts who partner with us to help make our lives better. So glad you’re here since no one should face MBC alone. New episodes available every other Monday and join us on the last Friday of the month for our Trailblazer series. Send your voice memos, ideas, and questions to ourmbclife@sharecancersupport.org and visit us at www.ourmbclife.org.

S05 E09 - Systemic Racism and MBC in Clinical Trials
5d ago
S05 E09 - Systemic Racism and MBC in Clinical Trials
When it comes to metastatic breast cancer, clinical trials are the way we find new drugs, better therapeutic targets, and, hopefully, more time. There are many issues with how clinical trials are designed, who they recruit and who is excluded, but one of the most difficult to confront at least here in the US has been the failure of the entire system to address how Black women and men with MBC are so much less likely than non-Black patients to be on a clinical trial. Systemic racism has many tentacles and today’s Black advocates and their allies are forcing transparency and change when it comes to clinical trials. This episode of Our MBC Life puts the focus on what we know is happening, why it happens, and actions to break down barriers to the best possible care.Co-hosts Sheila Pettiford, Martha Carlson, and Natalia Green, who also serves as OMBCL Executive Producer, took the Metastatic Breast Cancer Alliance BECOME project as the jumping off point. Led by advocate Stephanie Walker, BECOME found that only 36% of Black survey respondents received as much information about clinical trials as they wanted even though over 80% were likely to consider joining a trial. This failure to communicate is one of the first barriers that needs to be overcome, but Black women and men with MBC were also found to have significant concerns around access and trust that differed from non-Black survey respondents. Stephanie is also the lead of the Black Wo(Men) Speak Symposium, held the day prior to SABCS on December 5, which brings together Black-led advocacy organizations, with the MBCA, oncologists, industry, and nonprofits to address these issues head on. In this episode, Stephanie Walker talks about the BECOME findings and OMBCL uses her words to guide our interviews.We also talk to Rev. Dr. Tawana Davis for the Black patient perspective on clinical trials and MBC. Rev. Dr. Davis was on an immunotherapy clinical trial for about 1 year, ending in 2018, following her initial treatment. Our last guest is Valarie Worthy, MSN, RN, a Patient Navigator at Duke Cancer Institute, co-founder of TOUCH, The Black Breast Cancer Alliance, and 23-year cancer survivor.There is a lot of thought-provoking conversation in this episode. Make sure to follow the links below to learn more about our guests and their work.BECOME Project and Stephanie Walker Dr. Tawana Daviswww.thedrtad.comwww.soul2soulsisters.orgwww.carriestouch.orgValarie Worthy, MSN, RN
S05 E05 - ASCO 2022: When the Dust Settles, Will ADCs Change MBC?
Nov 2 2022
S05 E05 - ASCO 2022: When the Dust Settles, Will ADCs Change MBC?
While the DESTINY-Breast04 trial, which earned a standing ovation as a practice-changing study for treatment of HER2-low MBC garnered most of the headlines from the ASCO (America Society of Clinical Oncologists) annual meeting in June, it was not the only reason for optimism.  In this episode, the first of a two-part series, Our MBC Life’s Victoria Goldberg and Lynda Weatherby continue to explore what the research shared at ASCO means for us, the patients living with MBC.  You’ll hear from preeminent oncologists Stephanie Graff, Director of Breast Oncology at the Lifespan Cancer Institute at Brown University  and Hope Rugo (Professor, Department of Medicine (Hematology/Oncology) and Director, Breast Oncology and Clinical Trials Education, UCSF) in this deep dive into two critical studies: DESTINY-Breast04 and TROPICS-02. The latter examined a potential new line of treatment for heavily pre-treated HR-positive, HER2-negative MBC patients.  ENHERTU (trastuzumab deruxtecan) and TRODELVY (sacituzumab govitecan), the two drugs at the heart of these two trials, are both representatives of a relatively new class of drugs: Antibody Drug Conjugates—ADCs. ADCs are a class of drugs that links a potent chemotherapy drug with an antibody. Unlike traditional chemotherapy, ADCs are intended to target and kill tumor cells while sparing healthy cells. They are a kind of “smart bomb” for cancer treatment—and an extraordinarily promising development for patients.Our wide-ranging conversations with Dr. Graff and Dr. Rugo cover not only the results of these two trials, but their implications for treatment and the future of breast cancer research.More info about the show and past episodes is available on our website: www.ourmbclife.orgGot something to share? Feedback? Email: ourmbclife@sharecancersupport.orgFollow us on Facebook, Instagram, and twitter @ourmbclife
S05 E04 - We Remember
Oct 26 2022
S05 E04 - We Remember
'We Remember' honors all  who died from metastatic breast cancer over the past year—parents, children, spouses and partners. It gives voice to both the grief and the love that endures after each death. To live with a metastatic diagnosis or to be a caregiver, friend, or loved one of  someone with MBC is to inhabit a community of loss. Both demand that you confront and live with the reality of mortality, all the while balancing fear with hope, and profound sorrow with joy.Produced by Natalia Green, this episode includes memories and stories from the Our MBC Life team and our listeners. We want to thank everyone who submitted a name or a remembrance, and to give a special shout out to the members of the Share MBC support group who volunteered to read names.   We’re very grateful to Abigail Johnston, longtime friend of the podcast for her personal reflection on this past year’s losses. Like us, Abigail has been living with MBC and has been since 2017. She's well known for her policy and legislation advocacy in the breast cancer community.We Remember is dedicated to not only those who died this past year, but also to  the 116 people who continue to die every day from MBC. In fact, thirty percent of early-stage breast cancer patients will eventually develop MBC, which remains a terminal diagnosis. Nevertheless, according to Metavivor.org, only an estimated 2-5% of the funds raised for breast cancer research are spent on studies of MBC. While we honor our community each year by reading the names and sharing the stories of those we’ve lost, we must also honor them by building the awareness,  advocacy, and funding needed to create a future without MBC. Our MBC Life is committed to realizing that vision.
S05 E02 - MBC 101: The HER2-Low Show
Oct 12 2022
S05 E02 - MBC 101: The HER2-Low Show
The biggest news out of the June meeting of the American Society of Clinical Oncology (ASCO) was the success of a relatively new drug called Enhertu (trastuzumab deruxtecan) in treating estrogen positive (ER+) and triple negative (TNBC) breast cancers that were also HER2 low. Results of the clinical trial presented at the meeting were so positive that in August the FDA approved the drug for patients with metastatic HER2 low breast cancer that has progressed on other treatments.Most of us likely learned our cancer’s positive or negative HER2 status when we were diagnosed. But how can you find out if you’re HER2 low? And what does this mean for treatment? In this episode, pathologist David G. Hicks MD, Professor and Director of IHC-ISH Laboratory Breast Subspecialty Service at the University of Rochester, and Maryam Lustberg MD, MPH, Director of the Center for Breast Cancer at Smilow Cancer Hospital and Chief of Breast Medical Oncology at Yale Cancer Center, help the Our MBC Life team understand HER2 low and what it means for treatment.Spoiler alert: In its Phase III clinical trial, Enhertu significantly extended both progression-free survival and overall survival versus standard of care chemotherapy—an outcome that earned its research team a standing ovation at ASMO. However, the drug has significant side effects, and Our MBC Life’s Natalia Green shares her experience with her own treatment.ResourcesDavid G. Hicks, MD bio -  www.urmc.rochester.edu/people/20643669-david-g-hicksMaryam Lustberg, MD, MPH - published by Dr. Hicks: official press release from ASCO re Enhertu:
S05 E01 - The Legacy of Lisa Laudico
Oct 5 2022
S05 E01 - The Legacy of Lisa Laudico
On August 6, Lisa Laudico, the creator and driving force behind the podcast series, died peacefully at the age of 56, surrounded by her family. It was an enormous loss for the MBC community, felt nowhere more keenly than among the Our MBC Life team and Share staff and volunteers. In this episode of our podcast, Lisa’s friends, family, and colleagues remember her amazing life—and celebrate the many ways she fostered connection, resilience, and hope throughout the MBC community.“Lisa was a natural leader, and her passion for raising diverse voices and uniting those living with MBC was infectious,” says close friend Victoria Goldberg, founder of SHARE’s TalkMets Helpline and Lisa’s co-host and co-producer on Our MBC Life. “Her vision for the future was that a giant spotlight needs to shine on metastatic breast cancer research to change the outcomes of this disease, and her belief in our mission never wavered. Her beautiful voice will live on in the old episodes, and the podcast team will strive to continue to make her vision a reality.” Diagnosed with de novo metastatic breast cancer in 2017, Lisa was the 4th generation in her family to have breast cancer, but the first to be diagnosed at Stage 4. She met this challenge with the same passion and energy that helped fuel her high-powered career in international business, as well as the compassion and love she brought to her second career as a clinical therapist helping young children deal with trauma.  Embodying SHARE’s philosophy that “no one should have to face cancer alone,” Lisa created Our MBC Life at the height of the pandemic to amplify the voices of fellow community members and share their day-to-day realities. As senior producer and host, she invited dozens of people living with MBC to share their stories, and partnered with experts in the field to raise awareness and explore solutions to challenges. With episodes covering everything from racial disparities in treatment for people of color to parenting and working with MBC, it is truly a podcast, as Lisa said in the introduction for each episode, “for us, by us.”Even with her unflagging work ethic, Lisa was a constant and loving presence in the lives of her friends and family. She delighted in spending time with her husband Tony, dog Kita, and two sons Alex and Matthias, who were the lights of her life. From playing games around the kitchen table during the pandemic to skiing and hiking with her sons and visiting extended Canadian family, she took great joy in remaining closely connected to her loved ones.  Lisa’s story reminds us that we are all much, much more than our diagnosis. It also attests to the profound and enduring difference that one person can make in the lives of many. Here’s to Lisa!Thanks for listening! More info about the show and past episodes is available on our website: www.ourmbclife.orgGot something to share? Feedback? Email: ourmbclife@sharecancersupport.orgFollow us on Facebook, Instagram, and twitter @ourmbclife
S04 E17 - Psilocybin-assisted Therapy:  One Patient vs the DEA
Jul 6 2022
S04 E17 - Psilocybin-assisted Therapy: One Patient vs the DEA
Welcome to the third and final episode in our series on the potential of psilocybin-assisted therapy to relieve the existential distress of, and help us live as well as possible with, metastatic breast cancer. In this episode, we speak with two women taking action to increase legal access to psilocybin-assisted therapy in the United States. The first is a patient living with MBC who, along with her doctor, has brought a lawsuit against the Drug Enforcement Agency which is denying her access to psilocybin in the palliative care setting and under existing Right to Try laws for promising investigational medications for the terminally ill. The patient petitioner, Erinn Baldeschwiler, tells us why she joined the lawsuit, what she hopes to gain from psilocybin-assisted therapy, and what it’s been like to deal with all the legal proceedings on top of a progressing MBC diagnosis. Our second interview in this episode is with the attorney who is leading the legal case to open access to psilocybin under Right to Try legislation, Kathryn Tucker of the Emerge Law Group. Kathryn explains why psilocybin should be immediately available to patients suffering from distress, anxiety, and depression under FDA rules and state and federal Right to Try laws. But the DEA is continuing to block access and hold psilocybin on Schedule 1 of the Controlled Substance Act. It’s confusing, but we explain it all here. Lastly, see the episode notes for a current petition to the DEA to step out of the way and grant access to psilocybin to anyone with a terminal illness. This series has been led by our incredible series producer, Dr. Paula Jayne with expert assistance from co-host Lynda Weatherby (new to the podcast this season!), and senior producer and host Lisa Laudico. Thanks for listening!More info is available in our episode notes for this series on our website:  www.ourmbclife.org Got something to share? Feedback?Email:ourmbclife@sharecancersupport.org Send us a voice recording via email or through speakpipe on our website.  Follow us on Facebook, Instagram, and Twitter @ourmbclife