She Refuses To Be Knocked Down! One woman’s strategy for thriving with lung cancer



Hosts: Hildy Grossman with Jordan Rich co-host
Guests: Heather Smith

Heather Smith was only 34 when she was diagnosed, simply by accident, with
lung cancer. It had already spread to other areas of her body. After experiencing
this frightening curve ball, she was grateful that biomarker testing revealed that
she was ALK+. Knowing this genetic mutation, she could be treated with targeted
therapies that specifically aim at this genetic mutation. Heather discusses her
diagnosis, the course the disease has taken and the challenges she continues
to face.
Once her disease progressed, she developed seizures, and after one of
the seizures, she fell onto her concrete patio and was hospitalized. While
hospitalized, she resolved to not be taken down by her circumstances. “I didn’t
want to merely survive my cancer diagnosis. No! I wanted to thrive with cancer.”
Heather got up from being knocked down by her lung cancer diagnosis,
more determined than ever. She became a life coach. She creatively
decided to share what she’s learned, to help other lung cancer
patients face adversities. Heather is empowered by knowing: “I’m living my best life as a kick a** cancer thriver!” Her message is powerful for all of us.
Do not to take threats lying down!


Creativity at the Heart of Research and Music



Co-Hosts: Hildy Grossman and Jordan Rich

Good friends, Hildy Grossman and Jordan Rich put their heads together to talk about the importance of creativity when initiating innovative new research. They compare this experience in the lab to one of a songwriter and composer looking at a blank sheet of paper to come up with a new song. Upstage Lung Cancer has always taken pride in being innovative and outside of the box where lung cancer advocacy is concerned. Song requires a healthy use of lungs, and ULC produces concerts to share the joy and vitality of music while bringing information to the audience about lung cancer. This is a bit like Mary Poppins’ concept of “a spoonful of sugar makes the medicine go down”. Thus, the dynamic duo delightfully discuss ULC’s musical programs as well as the innovative research and scientists our organization support.


What is Exon 20 in Lung Cancer?



Listen to caregivers for spouses diagnosed with rare biomarkers

HOST: HILDY GROSSMAN CO-HOST: JORDAN RICH

Guests: Marcia Horn, JD. President and CEO at ICAN, International Cancer Advocacy Network and Executive Director, Exon 20 Group;
Caren Suesserman, Care Partner, Spouse, and Patient Advocate, Exon 20 Group; Sandy Kitchner, Care Partner, Spouse and Patient Advocate, Exon 20 Group

In our latest podcast focusing on biomarkers, we talk with Marcia Horn, from ICAN, the International Cancer Advocacy Network, and who serves as executive director of the Exon 20 Group. Previously as part of our podcast series, we’ve discussed the biomarker EGFR and how drug therapies have been developed to directly target this mutation. In this podcast, Marcia discusses rare Exon 20 Insertion Mutations found primarily in Non Small Cell Lung Cancer, but also found in many other cancer types. The problem is, these rare mutations do not respond like classical EGFR mutation to traditional targeted therapies. Also, Non Small Cell Lung Cancer patients can also be diagnosed with a HER2 Exon 20 insertion mutation, and those insertion mutations in fact, comprise around 50% of all HER2 lung cancer mutations.

Our guests, Caren Suesserman and Sandy Kitchner, have both been care partners for spouses who were diagnosed with EXON 20 insertion mutations. They discuss what can be helpful for those caring for loved ones with advanced disease, and how their own experiences have led them to advocate for other Exon 20 Group lung cancer patients.


FROM THE PATIENT’S EYE VIEW



How a positive attitude and biomarkers can guide your journey
Hosts: Hildy Grossman with Jordan Rich
Guests: Jill Feldman and Ivy Elkins with Dann Wonser, EGFR survivors

Two of our other Podcasts have emphasized how important it is to get your tumor tested for biomarkers. We focused on one specific biomarker, EGFR, with two outstanding guests who were both diagnosed with lung cancer and had this mutation. Jill Feldman and Ivy Elkins, of the EGFR Resisters advocacy group return to share more about the work of their organization to help patients and their families. They bring along another member of the EGFR Resisters community, Dann Wonser. Dann shares his own experience being diagnosed with lung cancer, by accident, in 2006. Being free of disease for five years, in 2011 he was diagnosed with advanced stage lung cancer. Dan’s story is inspirational, and he conveys his perspective of hope and fortitude as he continues to be active in his treatment. One way of coping with difficulties is to take action. Dann, Jill and Ivy are inspirational examples.


Biomarkers Benefit Lung Cancer Resisters



Jill Feldman and Ivy Elkins
Hosts: Hildy Grossman with Jordan Rich
Guests: Jill Feldman and Ivy Elkins
Two outstanding and determined women share how their lung cancer diagnosis, along with the ability to detect a particular biomarker, EGFR, has had a significant effect on the course of their lives. Biomarkers indicate alterations in your DNA that may drive a tumor. Using biomarker testing, it’s possible to refine diagnostic information to help select treatments to target directly that alteration. Both Jill Feldman and Ivy Elkins have channeled their experience as lung cancer survivors and advocates, to create a patient-centered organization, EGFR Resisters. This organization supports and notifies the EGFR-positive, lung cancer community about the latest information in diagnosis, research and treatment. They encourage us to persevere, and to support continued research to make lung cancer a manageable, chronic disease.


SMALL CELL: BIG PROBLEM



HOST: HILDY GROSSMAN CO-HOST: JORDAN RICH

GUESTS: Jacob Sands, MD, and Catherine Meador, MD, Ph.D.

Small cell lung Cancer (SCLC) is often called the smoker’s lung cancer, since it is most often diagnosed in heavy smokers. While this type of lung cancer is less prevalent than non-small cell lung cancer (NSCLC), it’s more aggressive.

Two dedicated and experienced physicians who specialize in treating lung cancer, Dr. Jacob Sands and Dr. Catherine Meador, offer their fascinating insights about the importance of getting a low-dose CT scan when there is a history of heavy smoking. There are often powerful emotional reactions that accompany a SCLC diagnosis, including fear, anxiety, stigma and guilt. It’s important for patients and medical professionals to address these emotional reactions, assuring that they are reasonable under the circumstances.

New and exciting research offers new prospects to live with SCLC. Diagnostic and treatment options include biomarker testing, targeted therapies, immunotherapy, combinations of drug with chemotherapy, and clinical trials. The conversation in this podcast emphasizes that each person is a unique individual who should not be swept away by statistics.


What if Sherlock Holmes Had Cancer? Innovations in Detecting Lung Cancer



Host: Hildy Grossman Co-Host: Jordan Rich
Guests: Jane Wilkinson, Tarek Fadel, Jesse Kirkpatrick, Christina Cabana

Imagine the scene of a murder. Detectives are called in to figure out how to solve the case. Sherlock Holmes was created by Sir Arthur Canon Doyle. Holmes was the most famous mastermind detective, whose powers of observation led him to uncover clues and evidence that others would miss. Upstage Lung Cancer’s mission is to support research that develops innovative techniques to find lung cancer at the earliest possible time. To date, there are no reliable, easily available and inexpensive ways to do this. We have been supporting a team from MIT’s Koch Institute for Integrative Cancer Research who use state-of-the-art research methods that creatively wed science and engineering to discover the presence of cancer. They use nanotechnology to study in real time tiny nano particles that are one hundred to ten thousand times smaller than human cells. This new method has the potential to detect lung cancer during the earliest stages of progression. What would Sherlock Holmes think? Listen to this fascinating discussion to learn more.

“It’s my business to know what other people don’t know.”
-Sir Arthur Canon Doyle, The Blue Carbuncle


Clinical Trials and Tribulations



Conversation with Survivors/Advocates, Physician and Researchers. Clinical trials are research studies aimed at evaluating a medical, surgical, or behavioral interventions. They are the primary way researchers find out if a new treatment, such as a new drug, is safe, effective and works best in certain groups of people. Our outstanding guests discuss the information and misinformation about clinical trials. Two courageous and inspiring women, Diane Legg and Linnea Olson, share their lung cancer journeys with Stage 4 lung cancer. They describe how clinical trials have extended and enhanced their lives, and while not always easy, has given them hope. Massachusetts General Hospital oncologist, Lecia Sequist, MD discusses what criteria she uses to recommend a patient enter a clinical trial while Dr. Basu Roy answers Forbes Magazine’s question, “Why do only 8% of cancer patients in the US participate in clinical trials?”

Clinical Trials are crucial. They offer another option to the menu of standard treatments. Barriers to participation can be reduced by increasing the availability of information, easing access and making trials financially neutral.


LOOK WHO’S TALKING



Survivors, Advocates, Performers & Scientists Talk Lung Cancer
Host: Hildy Grossman with Jordan Rich, co-host and guest
Guests: Bonnie Addario, cofounder and board chair of GO2 Foundation for Lung Cancer; Jacob Sands, MD, Dana-Farber Cancer Institute; Nian X. Sun, Ph.D., Northeastern University; John Berman, musician, Sao Paulo, Brazil
Our podcast is a tête-à-tête that took place following Upstage Lung Cancer’s April, 2021 concert, “It’s a Small World, Right?” Performers, advocates, lung cancer survivors, scientist, oncologist and a radio personality whose wife lost her life to lung cancer take center stage. They talk about life, facing illness, coping with difficult times and making music. This fascinating conversation illustrates how a zest for life stimulates creativity, innovation and inspiration. Too frequently, conversations about lung cancer are kept in the closet. Hollywood, for example, can change this. Performers could speak out about their own experiences with lung cancer and those of their family to help remove the stigma. This podcast offers the opportunity for survivors, advocates, the medical community and performers to share personal experiences, work and family encounters with lung cancer. The guests highlight how everyone gets sick, no matter where in the world one lives, and the challenge for all of us is to give voice and care for one another.


“WHILE THE THEATER WAS DARK”



Facing Curve Balls in Times of Illness
Emcee: Hildy Grossman Co-Host: Jordan Rich

Guests: Ilyse Robbins, Director, Choreographer, Actor, Associate Artistic Director for Greater Boston Stage Company; John King, Deputy Manager–Hudson Theater, NYC, Actor; Leigh Barrett, Actor, Singer, Director

Upstage Lung Cancer is unique in that we are the only lung cancer advocacy organization that uses music and the performing arts to accomplish our mission to create awareness and support early detection of lung cancer research. We are grateful to the professional directors, choreographers, actors and singers who return year after year to help us produce outstanding concerts (check out www.UpstageLungCancer.org/pastperformances )

Each of our guests have brought their unparalleled artistic performances to make ULC productions outstanding and so much fun. This podcast is a conversation among three outstanding individuals whose lives have been impacted by the pandemic while the theater was dark. Ilyse Robbins is an award-winning director and choreographer who helped to elevate all of our productions. She’s also associate artistic director of the Greater Boston Stage Company and talks about closing theater doors this year. John King is also an actor and singer who now is deputy manager of a the Hudson Theater in New York. He also shares how the past year’s curve balls have impacted his life. And Leigh Barrett, celebrated actor and singer, discusses the emotional impact of being shut out of an opportunity to connect with audiences directly.

This podcast is inspiring, poignant and meaningful for the message of hope and resilience when what you love most is lost.