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Our MBC Life

Author: SHARE Cancer Support

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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.
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S02 E06 MBC & Latinx Issues

S02 E06 MBC & Latinx Issues

2021-04-1201:34:30

In today's episode, we wanted to shed light on key issues impacting the healthcare of the Latinx community living with MBC here in the United States. Our cohost, Natalia Green, speaks with her sister about their experiences as patients, caregivers, and members of the Latinx community.  We also hear from Dr. Mabel Mardones, a breast oncologist based in Colorado, and Sara Carbajal-Salisbury, the executive director of Alliance Community Services, which has the mission of helping minority communities by making services and education accessible to them.More info available on our website www.ourmbclife.orgGot something to Share? Feedback?Email:  ourmbclife@sharecancersupport.org Send us a voice recording via email or through speakpipe on our website.Follow on Facebook, Instagram, and Twitter @ourmbclife
As we started season 2 with the search for unicorns and a look at clinical trials from the patient perspective  there was one person we had to interview. Judy Perkins is that person.  From her initial DCIS diagnosis in  2003 to her metastatic recurrence in 2013 to being the first person declared cancer free after a course of immunotherapy using Tumor-Infiltrating Lymphocytes (TILs) in December 2015 Judy shares her whole story with us.  It is one of many trials and not just the clinical ones. Judy shares realities, advice, stories, and inspiration. Co-host Victoria Goldberg sits down with her friend Judy for a special conversation. This is Our MBC Life. More info available on our website www.ourmbclife.orgGot something to Share? Feedback? Email:  ourmbclife@sharecancersupport.org  Send us a voice recording via email or click here.Follow on Facebook  Instagram  and Twitter @ourmbclife 
Here is Part 2 of our two-part series on Clinical Trials from the Patient Perspective.  This time we hear from the experts who have solutions to the issues raised in Part 1.  We continue to explore how research processes were impacted by Covid 19 and the race to find vaccines and treatments.  Spoiler Alert – there are some Covid silver linings for those of us looking for change in MBC research.  Co-hosts Jim Kremens, Lisa Laudico, and Sarah Mann, speak with experts Susan Colen of BreastCancerTrials.org, Deb Collyar of PAIR, Dr. Neal Fischbach of Yale New Haven Health, bioethicist Jill Manning of Mass General Brigham, Dr. Corrie Painter of Count Me In and the Broad Institute, Kristin Schneeman of Faster Cures and the Milken Institute along with MBC Patient Advocates, Christine Hodgdon of GRASP & Stormriders.org and Lianne Kraemer. Want more information, please check out our extensive episode notes for this episode including an infographic that describes the clinical trial search landscape for individuals living with MBC. Look for a full episode on April 5 covering our interview with Judy Perkins.  More info available on our website www.ourmbclife.orgGot something to Share? Feedback? Email:  ourmbclife@sharecancersupport.org  Send us a voice recording via email or through speakpipe on our website. Follow on Facebook, Instagram, and Twitter @ourmbclife 
We are back with the Trailblazer of the month and are so excited to share the great work of 305 Pink Pack in Miami, Florida. Rosemary Carrera joins host Victoria Goldberg  to talk about her story, starting pink pack, and how she discovered the unique needs of people living with metastatic disease and how the organization changed to address those. Also in this episode it's time for a Dash of Joy. Living with MBC means many things and for our host Dar Finkelstein it means finding joy every day and living with that purpose. In this episode she explores the difference between joy and happiness and how you can have joy, even in hard times.More info available on our website www.ourmbclife.orgGot something to share?  Feedback?  Email:  ourmbclife@sharecancersupport.orgSend us a voice recording via email or record here Follow us on Facebook, Instagram, and Twitter @ourmbclife
Join us for Part 1 of this two-part series on Clinical Trials from the Patient Perspective.  We review some of the basics about clinical trials for people living with MBC and share personal stories from our co-hosts Lisa Laudico and Sheila McGlown.  The team was joined by podcast members, Jim Kremens and Sarah Mann, as we spoke with patient advocates Lianne Kraemer and Christine Hodgdon.   The team then had a series of conversations with Lisa’s oncology team, Dr. Neal Fischbach of Yale New Haven Health, Dr. Corrie Painter of Count Me In and the Broad Institute, bioethicist Jill Manning of Mass General Brigham and Kirstin Schneeman of Fasters Cures and the Milken Institute.  We spend time discussing the current challenges with clinical trials with each of these experts and set the stage for Part 2 of this series when we will discuss solutions to make clinical trials better for people living with MBC.   Part 2 of Clinical Trials from the Patient Perspective will be in your podcast feed on March 29, 2021.   More info available 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 
This season we are thrilled to welcome some new members to the podcast team. In this very special and joyful episode, we are introducing Dar Finkelstein who is going to be hosting and writing a monthly segment “A Dash of Joy” which will air with our Trailblazer series on the last Friday of each month. In these segments, Dar will talk about her search for Joy in the middle of a life filled with doctors, shots, pills, and scans and offer some simple practices she has put in place to keep her focus on the feeling of Joy. Dar is a professional clown and runs not just one, but two Facebook groups devoted to this very subject:  Making Our Best MBC Life and Choose to Live With Joy.  She knows of what she speaks.More info available on our website www.ourmbclife.orgGot something to share?  Feedback?  Email:  ourmbclife@sharecancersupport.orgSend us a voice recording via email or through speakpipe on our website.  Follow us on Facebook, Instagram, and Twitter @ourmbclife
Welcome to Season 2!  In this episode, we spoke with five extraordinary individuals who have surpassed prognosis expectations and continue to live with MBC far longer than anyone could have predicted. They spoke about their experiences as exceptional survivors and responders, what being a “unicorn” means to them, and offered insightful advice on living with MBC. We also spoke with Dr. Mark Burkard and Dr. Stephanie Graff to find out more about studying outliers and what we can learn from them.Want more?Love Research Army: https://www.loveresearcharmy.org/Outliers Study: https://outliers.cancer.wisc.edu/Information on cancer and pregnancy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6396773/ More info available on our website    www.ourmbclife.org Got something to share? Feedback? Email: ourmbclife@sharecancersupport.orgWebsite: www.ourmbclife.org Send us a voice recording via email or through speakpipe on our websiteFollow us on Facebook, Instagram, and Twitter  @ourmbclife
From SHARE Cancer Support this is Season 2 of 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.  Our creator and co-host Lisa Laudico and producer Anne Woodward preview the coming season.  Hear  what's coming up as we amplify voices and share realities about life with MBC.Send your comments, feedback, and ideas to ourmbclife@sharecancersupport.org or record your comments at https://www.speakpipe.com/JustGottaShareCheck out our blog and season 1 on our website www.ourmbclife.org.  Find us on Facebook, Twitter, and Instagram @ourmbclife.  
Welcome to another bonus episode of Our MBC Life. In this episode we reintroduce you to our season 1 Trailblazers.  These women and the organizations they started are making a difference in their communities for people living with cancer. Look for our season 2 Trailblazers in a special episode the last Friday of each month.  Send your comments, feedback, and ideas to ourmbclife@sharecancersupport.org or record your comments at https://www.speakpipe.com/JustGottaShareCheck out our blog and season 1 on our website www.ourmbclife.org. Find us on Facebook, Twitter, and Instagram @ourmbclife.  
Welcome to this bonus episode of Our MBC Life. We are pleased to again highlight a program from our parent non-profit SHARE Cancer Support.  We are less than 1 week away from Season 2. The premiere episode will drop on March 1.  While we do that, we hope you catch up on any episodes you missed from Season 1. Our MBC Life is a part of the metastatic breast cancer program at SHARE Cancer Support. SHARE has many programs to support women living with MBC including the Talk METS Helpline, several virtual support groups, and educational and wellness programs. We are thrilled to highlight another important program presented by SHARE a few weeks ago. For many of us living with cancer there are numerous questions about COVID-19, the vaccines, and what we need to know to best take care of ourselves. How do we know if the vaccine is effective for cancer patients if we were not included in the trials? Can I continue my treatment while getting the vaccine? What about certain types of chemo and reactions? Should I get the vaccine if I’ve already had Covid? What about my immune system, am I at greater risk?On February 11 SHARE invited Dr. Joshua Hill from Fred Hutchinson Research Center to discuss the COVID-19 Vaccine in relation to cancer patients and their treatment.You may check out our blog and episode notes, www.ourmbclife.org.  We are also found on Facebook, Twitter, and Instagram @ourmbclife.
Welcome to our fourth bonus episode of Our MBC Life.  We are so excited to share a great episode from another podcast we admire - our friends at the 3 Black Docs podcast.  In this episode from last summer, Dr. Karen Winkfield, Dr. Tiffany Avery, and Dr. Zanetta Lamar, discuss the legacy of Henrietta Lacks and what we can continue to learn.  We are so grateful that they have allowed us to share this episode with you.  If you haven’t followed the 3 Black Docs podcast there is no time like the present. Think of this as a podcast takeover from some of our favorite people.  We are doing the countdown to the launch of Season 2 – stay tuned!  We have more great conversations with inspiring individuals living with Metastatic Breast Cancer and the experts who help make our lives better.  You may check out our blog and episode notes, www.ourmbclife.org.  We are also found on Facebook, Twitter, and Instagram @ourmbclife  
Welcome to our third bonus episode of Our MBC Life.  Our team is working on Season 2 – to be launched in a few short weeks on March 1 – and so we wanted to share some of our favorite episodes from Season 1.  This episode is certainly one of those all-time favs! With us are the outstanding Dr. Tiffany Avery, Dr. Zanetta Lamar, and Dr. Karen Winkfield who have developed their own podcast called the 3 Black Docs.  These incredible women give their professional take on racial disparities in healthcare and addressing structural barriers that lead to disparities in treatments and outcomes. These issues need to be continually raised every time treatment is being discussed, clinical trials are designed, and every conversation between patient and doctor.  Not just this month.  Not just during the month of October.  But every day of every month.  We thank the 3 Black Docs for all that they do to help move these important conversations out of in front.  Dr. Karen Winkfield has been recently promoted to be the Executive Director at Meharry-Vanderbilt Alliance.  Watch for the special 3 Black Docs episodes later this week on the legacy of Henrietta Lacks.  You may check out our blog and episode notes, www.ourmbclife.org.  We are also found on Facebook, Twitter, and Instagram @ourmbclife
Welcome to our second bonus episode of Our MBC Life.  Our team is working hard on season 2 and it’s going to be great! Look for our premier episode on March 1 with the stories and research behind long term MBC survivors.  Always good to have a little hope to talk about.  This bonus pod is the full interview that Senior Producer, Anne Woodward, and Host, Lisa Laudico, had with Carol Evans, CEO and Executive Director of SHARE Cancer Support as she was celebrating 1 year into her new role.  Carol joined SHARE after a long career in media and shares with us all the lessons learned through her long career and the advancements she’s seen for women and mothers in the workplace, her thoughts on what a post covid workplace might look like, and her transition to the non-profit world.  She shares her vision for SHARE and how meeting and working with women living with MBC has impacted her.  We will have 2 more bonus pods before we launch season 2.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife.  
Welcome to this bonus episode of Our MBC Life. Our team is currently working on season 2 and we are excited. The premiere episode will drop on March 1.  While we do that, we hope you catch up on any episodes you missed from Season 1.  We will have 3 more bonus pods for you in January and February. Our MBC Life is a part of the metastatic breast cancer program at SHARE Cancer Support. SHARE has many programs to support women living with MBC including the Talk METS Helpline, several virtual support groups, and educational and wellness programs. We are thrilled to highlight some of those programs in January.   It feels like a lifetime ago, but just a few weeks ago the world's largest breast cancer conference, the San Antonio Breast Cancer Symposium, was held.  Just after the symposium SHARE welcomed Dr. Neil Iyengar from Memorial Sloan Kettering to a webinar where he shared information from SABCS highlighting both early-stage and metastatic research. We are pleased to have that conversation to start the year and catch you up on the latest in MBC research.  Christine Benjamin,  the senior director of patience services and education from SHARE Cancer Support and the new Chair of the Metastatic Breast Cancer Alliance, speaks with Dr. Iyengar.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife.  
This is our final episode of the Our MBC Life Podcast inaugural season and it is all dedicated to the memory of our friend and co-host, Chawnte Randall, who died in November of this year.  Chawnte was involved with many Metastatic Breast Cancer organizations, foundations, and initiatives during the short 19 months she lived with this disease.  She was passionate about eliminating racial disparities in MBC healthcare and brought her boundless energy to everything she did.  Chawnte touched so many lives through her advocacy and through her personal support for others.  Hear from Chawnte's friends and those she worked with to make a difference in the lives of those living with MBC.   Join us to celebrate and honor the remarkable life and legacy of Chawnte. The Our MBC Life Podcast team wishes all our listeners a very safe and happy holiday season.  We look forward to this new year with great anticipation.  Look for special programming in January and February and our Season 2 kickoff on March 1, 2021.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife.  
Co-host Natalia Green finds out how Christine Hodgdon and Julia Maués , co-founders of GRASP (Guiding Researchers and Advocates to Scientific Partnerships) saw an opportunity last year to bridge the gap between researchers and MBC advocates in the pursuit of better research connections. Christine Hodgdon was diagnosed with metastatic breast cancer in 2015 and has a background in biology and nonprofit programming.   In addition to her work with GRASP, Christine is the founder of the  Storm Riders Network, a website that shares the latest breast cancer research, treatments, and clinical trials.  Julia Maués was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered cancer had spread to her brain, liver, and bones. Julia has found meaning and purpose in working with patients and researchers to make cancer research more patient-centered, innovative, and inclusive. Find out how to tap into the GRASP registry of advocates and researchers.   You will want to listen to these two inspirational advocates who are as smart as they are passionate and kind.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife.     
Today we learn more about the Patient-Centered Dosing Initiative (“The Right Dose “) with MBC advocate and author, Anne Loeser and Dr. Aditya Bardia, Attending Physician at Massachusetts General Hospital and Assistant Professor of Medicine at Harvard Medical School.  Usually when metastatic breast cancer patients begin new treatment, they are treated with the highest possible dosage, also known as the Maximum Tolerated Dose  (MTD) that causes the most challenging side effects.  Given we, those living with MBC, will be in treatment for the rest of our lives, The Right Dose Initiative aims to dismantle this paradigm for MBC patients.  This conversation was the last interview our friend and co-host Chawnte Randall was able to do before she died on November 12.  She was a member of The Right Dose Initiative working group along with the many other MBC organizations and foundations to which she volunteered her time and expertise. Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife. 
Join Co-hosts Sheila McGlown and Lisa Laudico for a conversation with Maimah Karmo, founder of the Tigerlily Foundation along with Christine Hodgdon and Julia Maues, co-founders of  GRASP and the #PullUpASeat initiative.  We are pleased to release this episode on the eve of Maimah's groundbreaking keynote and session at the 2020  San Antonio Breast Cancer Symposium, the largest breast cancer symposium in the world, where she is co-presenting with the AACR on Setting the Stage for Health Equity, Collaboration, and Partnership.  We find out what specifically has happened in the year since the launch of the #InclusionPledge and find out more about the #KnowMoreDisparities and #PullUpASeat initiatives.  This is an extraordinary discussion on inclusion, disparities, allyship, privilege, stigmas, and the power of the individual.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instargram @ourmbclife.
This month’s JGS Listener Roundup features a listener message from Massachusetts reflecting on our Parenting episode along with special Just Gotta SHARE messages from Katherine O’Brien, Julia Maues, Ricki Fairley, Dr. Aditya Bardia, and Anne Loeser.  We also have a great interview from Senior Producer and Co-host Anne Woodward with Sue Cappucci, a person living with MBC who navigated the tough transition from work after her second-line treatment became too exhausting and depleting to continue her regular work schedule.  Sue explains the process she needed to take and highlights the all-too-often realities that people face when there are true gaps in health insurance and federal programs that can fail to meet the needs of individuals living with a terminal diagnosis.  Finally, we highlight the great work of Bridgette Hempstead of the Seattle-based Cierra Sisters who is our November Trailblazer organization of the month.  Wishing all our listeners a safe and happy holiday season even though our normal traditions are necessarily very different this year.  We have just three more episodes this inaugural season and we are dedicating it all to the memory of our dear friend and co-host, Chawnte Randall who died this month.   Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife. 
Today’s episode is all about Working while living with MBC.  So many of us have been threading this needle, living with difficult side effect and treatments, while keeping up with work either because we have to or because we want to.  It is no secret that the supports and safeguards for people working while living with MBC vary across the country and that protections at the federal level are still not fully fleshed out nor do they help everyone who is living and working with MBC.  It is definitely not a one size fits all situation.  With us today to help highlight things to keep in mind with employers and organizations that can help, we have assembled a panel of individuals living with MBC who are still working along with Alison Greenberg, an employment lawyer practicing in NYC.  Producers and co-hosts, Victoria Goldberg and Anne Woodward facilitated this discussion with Erin and Reilly, two women who have continued to work while raising young children and living with MBC.  In addition, we sat down for a conversation with the CEO of SHARE Cancer Support, Carol Evans, who knows a thing or two about the many issues that continue to face women who work, including women who work while living with cancer.  Carol shares lessons learned from her incredible career, prior to joining SHARE, that included being the Founder and CEO of Working Mother Media and Working Mother Magazine.  Carol is very honest about the shock of learning more about Metastatic Breast Cancer upon joining SHARE, highlighting for us all how little is still known about our disease and how it affects our lives.  We are lucky to have allies like Carol to help us raise awareness and services and supports for people living with MBC.  It takes a village and our village needs to include everyone.  Check out our blog and episode notes on our website, www.ourmbclife.org.  We are found on Facebook, Twitter, and Instagram @ourmbclife. 
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