Hope With Answers: Living With Lung Cancer

What is my biomarker? THE question to ask

What is my biomarker?
A newly diagnosed lung cancer patient should ask this question before starting treatment. Why? Because the answer to this question can change the odds and the choices for your personalized treatment plan, especially for Black or African American patients.
Black and African Americans must ask their doctors, “What is my biomarker?” to ensure they receive the latest targeted therapy treatment that is applicable. Hear from Dr. Sydney Barned and Brandi Bryant in this episode as they discuss their care and what a difference it made in knowing their biomarkers. And maybe even more importantly, they are advocating that every black or African American should ask that question, “What is my biomarker?” 
There are more options for treating lung cancer and they want to make sure every black or African American patient, like everybody, else gains access to that full range of options.
Why do Biomarkers matter in lung cancer treatment?
Minority and underserved communities must advocate for themselves to get the best treatments, especially treatment that can increase the quality of their lives. Guest Dr. Osarogiagbon dives into not only the importance of asking, “what is my biomarker?”, but why it is essential that Black and African Americans make this question a priority. Thanks to lung cancer research, he’s really excited that lots of biomarkers have been discovered to help doctors split what used to be a single disease, into a disease of many different bits and of different sizes. 
Understanding biomarkers now allows doctors to predict how the cancer is going to behave. And then determine what treatment is most likely to benefit the patient, in terms of surviving lung cancer - and the quality of life, in response to cancer treatment. 
“So, you go from 4% to 6% five-year survival, to up to 60%, if you get the right treatment for right cancer. As with ALK mutated lung cancer, so with some of the other subsets, the EGFR mutated lung cancers, the ROS1 mutated lung cancers, the BRAFF mutated lung cancers, the MET exon 14 mutated lung cancer, all... There are at least nine subsets of biomarker-driven lung cancers, and that continues to change all the time. So, that's why it's vital that we get tested, so we know which treatment would benefit us.”
- Dr. Raymond Osarogiagbon
Guests:
Dr. Sydney Barned, a hospitalist at Ann Arundel Medical Center in Annapolis, Maryland, a lung cancer patient, and a member of the LCFA Speakers Bureau
Brandi Bryant, a lung cancer patient, and a member of the LCFA Speakers Bureau
Dr. Raymond Osarogiagbon, Chief Scientist for Baptist Memorial Health Care, Director of Baptist Cancer Center’s Multidisciplinary Thoracic Oncology Program and Thoracic Oncology Research Group, and Principal Investigator of Baptist’s Mid-South Minority-Underserved Consortium initiative, NCORP, in Memphis, Tennessee
Show Notes | Transcript | Watch the video
Resources:
What Do I Need to Know About Biomarker Testing?
National Comprehensive Cancer Network (NCCN) Guidelines for Non-Small Cell Lung Cancer
What is a Liquid Biopsy for Lung Cancer?
7 Signs of Lung Cancer You Should Know

How a nurse navigator helps map lung cancer care

There is so much hope in lung cancer today. But lung cancer is also inherently very complicated. And the process of getting to a treatment plan takes a lot of expertise, different members of a medical team, and lots of tests. And one way to make this process easier on patients and more efficient for doctors who are making those treatment plans is to use an expert called a patient or nurse navigator.
Guests
Charity Holien, RN, a patient navigator with the University of Colorado Cancer CenterRoss Camidge, MD, PhD, Director of the Thoracic Oncology Clinical and Clinical Research Programs at University of Colorado Cancer Center
Video Podcast on YouTube | Transcription
Resources
A Lung Cancer Diagnosis: What’s Next
The First 7 Days podcast series
What Do I Need to Know About Biomarker Testing?
 
LCFA is a nonprofit dedicated to improving the survivorship of lung cancer patients by funding lung cancer research. Visit lcfamerica.org.

Comprender los biomarcadores del cáncer de pulmón

Un diagnóstico de cáncer de pulmón llegó de repente para Emma Pompeo. Pero afortunadamente, ella tenía dos cosas a su favor: apoyo de su familia cuando aprendió de su diagnóstico y encontró a un doctor en un centro de cáncer comprensivo que podía contestar sus preguntas en español para que ella y su familia pudieran entender toda la nueva información. Su doctor le explicó bien sobre los biomarcadores de cáncer de pulmón, organizó los exámenes requeridos, y dio buenas recomendaciones de otros doctores quienes ayudaron a formar su equipo de salud. Estos diálogos eran increíblemente importantes mientras ella aprendía el nuevo vocabulario que es parte del diagnóstico de cáncer de pulmón y del tratamiento apropiado.
INVITADOS
Dr. Christian Rolfo es un Oncólogo Torácico y experto en oncología molecular, biopsias líquidas y desarrollo de nuevos fármacos en el ámbito de cáncer de pulmón y mesotelioma en el centro de Oncología Torácica de Mount Sinai.
Emma Pompeo está viviendo con EGFR cáncer de pulmón. Ella dedica tiempo a ser una luchadora para pacientes, apoyando a otros en su experiencia con cáncer de pulmón.
Notas del Programa | Transcripción
 

What every EGFR patient needs to know

For years, researchers knew different factors were causing lung cancer tumors to grow, but they didn't know why, or how to interrupt the process. Then, a group of lung cancer researchers discovered the EGFR biomarker, which opened the door for targeted therapies that were easier to take, more effective, and led to better patient outcomes than anything used before. Take this opportunity to hear from someone who had a part in discovering the first lung cancer biomarker. Learn more about the EGFR biomarker from Dr. Carbone – important information that every EGFR patient needs to know.
Guest
Dr. David Carbone is a lung cancer clinician, researcher and specialist at The Ohio State University Comprehensive Cancer Center. He’s been working on developing treatments for lung cancer for years, and played an important role in discovering the first targeted therapy aimed at the EGFR biomarker.
Transcript | Video Podcast

EGFR Biomarker Community: Hope Living With Lung Cancer

A lung cancer diagnosis can be very overwhelming. How do you make a connection and create a sense of community with people who truly understand what you’re going through?  Hear from two people living with EGFR lung cancer who are creating connections among others with the same biomarker. Learn how sharing experiences, information, and understanding, is creating hope with answers for those in the EGFR biomarker community - while advocating for more lung cancer research.
Guests:
Jill Feldman, lung cancer patient/advocate, follow her on Twitter @jillfeldman4
Ivy Elkins, lung cancer patient/advocate, follow her on Twitter @Ivybelkins
Podcast Transcript
Meet patient advocates Jill Feldman and Ivy Elkins. They are working hard to level the playing field for people living with EGFR lung cancer by:
making sure that everyone has access to the best treatments and information
building a network of support for people living with the same type of lung cancer they have.
Resources:
What do I need to know about biomarker testing?
Targeted therapies for lung cancer treatment
EGFR Resisters, a patient-driven community dedicated to improving the outcomes for those with EGFR positive lung cancer.

Investment in grants change the future for lung cancer patients

Lung cancer is a disease that affects people: family, friends, co-workers, neighbors. It's a disease that comes with in some stark figures about survival and research funding. But the numbers don't lie, and they also show the amazing strides being made against the disease: increasing survival rates, incredible strides in treatment options, and ever-growing ranks of researchers dedicating their professional careers to improving the odds for people living with lung cancer. Join us for this episode of Hope With Answers: Living With Lung Cancer, where we talk about hope, by the numbers.
Guests:
Kim Norris, Lung Cancer Foundation of America co-founder and president
Dr. Jessica Donington, professor of surgery at the University of Chicago Pritzker School of Medicine
Dr. Triparna Sen, an assistant attending at Memorial Sloan Kettering Cancer Center
Kellie Smith, PhD, assistant professor of oncology at Johns Hopkins Medicine
 
Show Notes | Transcript
BY THE NUMBERS: 20  The quickening pace of research the last 20 years
Twenty years ago, the lung cancer treatments available were surgery, chemotherapy, and radiation. Then came the discovery of treatable lung cancer biomarkers. The discovery that each lung cancer tumor is unique opened up a whole new world of discovery. After that, immunotherapy opened up even more ways to treat different types of lung cancer. And for many people, living with lung cancer it has become more like managing a chronic disease rather than the usually fatal diagnosis it was just a handful of years ago.
“... the entire landscape has changed for people diagnosed with lung cancer. I even wonder if my husband, who died 20 years ago, would still be alive if he had been able to take advantage of all the research that’s been happening in just the past five or ten years. We now know people living 8, 13, 15, and 19 years after diagnosis. And then we realized that these numbers are really powerful-- they’re not just black and white numbers, they’re people.“ - Kim Norris
BY THE NUMBERS: Double Duty
LCFA Young Investigator Research Grants do double duty in the field of lung cancer research. Funding from foundations like the Lung Cancer Foundation of America is essential in building a pool of investigators. It takes a long time and a lot of money to go from a great idea and a bright star with a great mind to an NIH-funded investigator. But as Dr. Triparna Sen points out, these grants also help to train young investigators.
“Like with this funding, we get postdocs and trainees and technicians into the lab. So we are essentially training the next generation of cancer investigators who will go on to become in independent investigators themselves. So you're not only just providing resource to advanced research, but you're also providing resource to train the next generation of cancer investigators. And I think that has a much more long term impact the next clinical trial. So I think overall, uh, the funding that I got from LCFA has been absolutely critical in developing me as a researcher. So thank you so much.”
BY THE NUMBERS: 17
LCFA has invested in 17 grants so far, and 10 of them have gone to women.
Women in science face many challenges. When Dr. Donington got into lung cancer 15 years ago, it was a very male-dominated field in terms of the doctors who treated it and the researchers who performed the research. And I always believe that a group of physicians and researchers that matches their patients provides the best care.
The Power Of The Patient Advocate Voice
Women advocates are making a difference in lung cancer research as well. As Dr. Donington discusses, “Lung cancer for a long time has had a stigma issue as being seen as a male disease, with people who have smoked for 100 years. And it's just not, it's not that disease. And I think that our advocates which are very heavily female like a lot of cancer advocates are, have really done so much to change the face of lung cancer…. I think they do more to change lung cancer than even us as investigators.” Dr. Sen thinks that what the patient advocates do is they help bring system-wide issues to light that are required for clinical trial design for what is important for the actual patients who is the ultimate goal role for our researchers. And her goal is to work with patient advocates to make her scientific studies more relevant to the field, more timely, because she now understand by speaking to them the urgency of the situation, and so make it more timely.
“And I think patient advocates play a very important role to help researchers learn like myself move discoveries towards clinical use, but do that in a more sort of not only timely fashion, but also help us design studies that are more relevant to clinical use.” - Dr. Triparna Sen
In addition, patient advocates play an important role in bringing these disparities to light. Then these issues can be addressed by researchers and by clinicians and move them to incorporating equity in clinical trial.
“I think so they play a very important role at multiple levels and LCFA has done an incredible job in connecting researchers to patient advocates.” - Dr. Triparna Sen
The Pace of Research: Bench to Bedside
“And I didn't think it was possible in my lifetime, but I suddenly think that, oh my gosh, we can double survival. We can get survival up to 25 and 30%. I feel like in a very short time, uh, with screening and the advancements in our current medications, it's just so possible. It's exciting.” - Dr. Jessica Donington
The time it takes for research to go from bench to bedside is getting faster all time. That’s the timeline: how long it takes for a discovery in the lab to make it to a patient who needs it. So, for example, when you're in a laboratory you hear about using mice and discoveries, but that's just in theory, then you have to bring it to the human and that takes time.
“Bench to bedside has never been as fast as it is now in lung cancer. It is incredible. Things we never considered as little as five years ago are just commonplace now. It was very funny I was working with one of my colleagues and she said, "Oh, yeah, I don't treat one person the same way I did five years ago as a medical oncologist." And then I sat down and go, "Oh, you know what? I don't either." Like none of us do. So there's this whole synergy about the science too, as it advances in one area, it becomes easier to integrate it into others and it's really exciting.” - Dr. Jessica Donington
Research breakthroughs discovered five, six years ago are already in clinical trials.  So this bench to bedside medicine is a phenomenal thing to be a part of within the context of lung cancer.
“As a PhD scientist, we very rarely see the fruits of our labor actually pan out in the clinic. I mean, it's very rare. But with lung cancer research, because it's moving at such a rapid pace, we are able to see these discoveries making their way into the clinic in an accelerated timeframe.” - Dr. Kellie Smith
Research = Hope
The goal of LCFA’s Young Investigator grant program is to attract the best and brightest minds into lung cancer research early in their careers. This LCFA grant is big enough that they can set up their labs and gather that first big collection of data.Then, they can use this data to apply for even larger grants that may one day lead to clinical trials and hopefully new treatments.
BY THE NUMBERS: Investment in Grants $200,000 >> $4 Million
Kellie Smith is a shining example of LCFA’s mission. Using her LCFA grants, she was generated preliminary data, made these really impactful discoveries, and then to applied for additional funding.
“And, just based on my own personal experience, the LCFA Young Investigator award was the very first grant that I was ever awarded. I've been able to leverage that now into several million dollars worth of funding.”

Academic Mentors, Peers, and Friendtors Make the Difference

Our guests talk about how peers, friend-tors, and academic mentors can help you see potential in yourself that you may not have known. All this support is especially important to the success of minority and ethnic researchers who are looking to focus on a lung cancer specialty.
“Mentors are those guiding lights that help us to progress to the next stage and to see paths where we may not have seen them before.” - Dr. Jarushka Naidoo
Guests
Dr. Jarushka Naidoo, a consultant medical oncologist at Beaumont Hospital in Dublin, Ireland who focuses on immunotherapy and is an LCFA Young Investigator Grant recipient
Dr. David Tom Cooke, a cardiothoracic surgeon at the University of California Davis Health System specializing in cancer surgery
Dr. Christian Rolfo, a thoracic oncologist who is associate director for clinical research in the Center for Thoracic Oncology/Tisch Cancer Institute, Mount Sinai, New York.
Show Notes | Transcription
Academic Mentors Help Make the Connections
Academic mentors are necessary for advancing a researcher’s career and accessing lung cancer research funding. There are a variety of approaches to mentoring and different mentors may bring different skills.
A mentor can mean different things at different stages in your career. A mentor fundamentally means a teacher. Like teachers, a researcher needs a different type of teaching at different times in their careers.
One of the things that is important about mentors is to realize that not all mentors are going to teach a researcher the same lessons, but the mentee will carry those lessons through their career. Some of the different kinds of mentors are:
peer mentors – at your stage or a little bit senior to you who might teach you how to get things done
friendtors – people who are at your stage and understand what you might need day-to-day.
classic academic mentors – a senior mentor who has a bird’s eye view of careers and how they can guide your career forward
The Importance of Finding Academic Mentors
“...it's important to establish a mentor, someone who introduces you to the scientific method from an early age, and guides you through a proper development pathway to understanding investigated research.” - Dr. David Tom Cooke
You can take skills from mentors from different areas covering your needs, and giving you expertise in different fields. A good academic mentor can instill a genuine love for the specialty. They can help to navigate the interplay between understanding the different specialties that contribute to the world of oncology, and the true commitment to lifelong learning.
How Lung Cancer Research Can Benefit From An Increase In Investigators From Minority And Ethnic Communities
Researchers who bring a culturally sensitive perspective to lung cancer, can make a huge difference in research and in the communities they represent.
As an underrepresented medicine physician, Dr. Cook understands in a culturally competent way, the mistrust of the healthcare system from the black and African American community. He can just sit down and talk with patients with that understanding. He can help to allay their fear of a clinical trial. In addition, Dr. Cook can help the healthcare institution understand how best to support these patients to promote them enrolling into clinical trials.
Currently there is even more attention on the ability of a clinical study to attract and enroll under- engaged communities for a given research question. The grant applications are evaluated on how this research will reach out to underserved communities or underserved populations. Such as will women be enrolled in this trial? So, that is key to addressing questions about disparate populations and equal opportunities for participation. Thus a grant application will be evaluated based on these rules.
Academic Mentors Help Navigate The Equity Space For Young Physicians
Of course, many aspiring doctors do not attend the top rated University Medical School Programs, many of which are Ivy League schools. Many of the students who attend medical school programs at smaller schools may face unique challenges in their attempts to specialize in lung cancer research. And, the challenges are even greater for students from underrepresented minority groups.
However, there is a misperception that investigative science and research only occurs at the Ivy League level. That misperception is not amongst researchers throughout this country and others, but mainly in the lay population. Looking at all National Cancer Institute Comprehensive Designated Cancer Centers, there are over 40 research universities. The majority of these facilities do not reside within the Ivy League environment.
Look at the hundreds and hundreds of millions of dollars of research funds that goes into funding research, both in the public and private sector. The vast majority goes into other institutions, that include UC Davis Health and Johns Hopkins Medical Center. The key here is, if you are an individual, especially a person from an underrepresented medicine background, it's important to establish an academic mentor. Especially important, finding someone who introduces you to the scientific method from an early age. Then guides you through a proper development pathway to understanding investigated research.
Academic Mentors and Research Funding
There are also underutilized funding resources. Typically, resources may be underutilized because many people aren't aware of them.
​​Dr. Christian Rolfo stresses that it’s very important that mentees to be very proactive. “Because if you are sitting there, even if you are coming from a big institution you are sitting there and you don't take the opportunities, nobody will knock your door.”
Dr. Cooke believes the key is cross demographic mentorship. An academic mentor doesn't have to look like you or come from the same background, or even quite frankly be in the same political persuasion. But they have to have faith in your abilities, and their only goal in mentoring you, is seeing your success.
For example Dr. Cooke cited one of his earliest academic mentors, Dr. Marion Katchlin. “She was older, I was younger, she was wealthy, I was not. She was a smoker, I wasn't. But we both loved immunology. And she took a specific interest in my career, and she taught me that I shouldn't limit myself in any way, and I should strive for the best in any opportunity I want to strive for.”
Resources
How an LCFA/IASLC Grant Benefits Lung Cancer Research
LCFA Research Grants
How to find funding for lung cancer research

Disparities in Lung Cancer Clinical Trials: Moving toward Equity and Inclusion

In this Hope With Answers podcast, hear from doctors in the field and researchers on the front lines discuss the disparities in lung cancer clinical trials. Disparities in access to healthcare opportunities occur when there is an absence of health equity. These health differences are closely linked with social, economic, and/or environmental disadvantage.
Listen to these lung cancer experts address disparity in all aspects. This includes eligibility, referral programs, healthcare access, and appropriate follow-up for lung cancer screening. They propose strategies to address each of these areas so that we can bridge this disparity, equity and inclusion gap.
Missing Out on Treatments: Disparities in Lung Cancer Clinical Trials
Advances in lung cancer treatments over the last few years have made it possible to live with lung cancer for years after diagnosis. But minority and ethnic populations represent less than 5% of those getting the latest treatments in clinical trials.
Guests
Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, Tennessee
Vincent K. Lam, M.D., an Assistant Professor of Oncology at Johns Hopkins, is a clinical/translational investigator with a special interest in lung cancer and an LCFA Young Investigator grantee.
Dr. Triparna Sen, is an Assistant Attending, Department of Medicine, Memorial Sloan Kettering Cancer Center; Assistant Professor, Weil Cornell School of Medicine and an LCFA Young Investigator grantee
Show Notes | Transcription
Patients have the power to make a difference in health disparities in lung cancer clinical trials by:
educating themselves on the steps to take
asking their doctors questions
looking for information on websites like lcfamerica.org or social media oncogene groups.

Understanding Gut Microbiome in Lung Cancer Treatment

What if your lung cancer doctor could get a huge amount of information about your health, how you might respond to different treatments, and possibly even be able to tell you the best diet for your specific needs, all based on a simple test that involves no needles, no surgery, no special preparation, just a small sample… of your stool. That’s the potential of studying the gut microbiome. Find out why some of LCFA’s Young Investigators are so excited about including the gut microbiome in the fight against lung cancer.
Guests
Dr. Jarushka NaidooDr. Daniel SpakowiczDr. Zoltan Loinai
Dr. David Carbone, The Ohio State University
Show Notes | Transcription
Getting over the ick factor: Talking about poop
The immune effect of the microbiome on lung cancer may be due to specific compositions of both lung and gut microbiomes. Three of LCFA’s Young Investigator grant recipients are continuing this study of gut microbiome and lung cancer, Dr. Jarushka Naidoo, Dr. Daniel Spakowicz, and Dr. Zoltan Lohinai.
The Future is Gut Microbiomes, Icky As it May Be
Discovering whether a patient’s gut health plays a role in determining the benefits – or, conversely, the harm – of immunotherapy treatment. Until now, there has been scant research connecting gut health with both cancer diagnoses and treatment protocols.
The LCFA Young Investigator Grants are designed to help researchers look at lung cancer in new and creative ways, always with an eye toward finding better treatments that help people live longer and healthier lives.Familiarizing the practicing clinician with the experimental methods used to generate the information that will likely impact the field of lung cancer, helping to understand gut microbiome in lung cancer treatment.
As Dr. Daniel Spakowicz says, “in general, collecting somebody’s poop before they start a treatment is not a commonly done practice right now, and it tends to be sort of icky to some people. And that’s the essence of what we want to change.”

Men living with lung cancer: Finding Their Voice While They Tackle the Taboo

It's no secret that lung cancer affects a patient's entire community: family, friends, co-workers and more. Learning to live with lung cancer is its own challenge, especially for men. Hear from three guys who found their own patient voice, and help others find theirs, as they tackle living with lung cancer in unique and powerful ways.
Guests:
AJ Patel, James Hiter, and Frank McKenna
Show Notes | Transcription
Accepting the Challenges As Men Living with Lung Cancer
AJ Patel, James Hiter, and Frank McKenna have been living with lung cancer for a number of years. Thanks to research and new treatments, they have the experience and commitment to help others facing the same shocking diagnosis. However, they each have unique journeys and different approaches mentally.
AJ, James, and Frank are part of LCFA’s Speakers Bureau. They are using their voice to get the word out there for more lung cancer research. They have shared their story on the LCFA’s website, participated in fundraising events and appeared on some of the podcasts to let people know that there are other guys out here that are willing to help other men living with lung cancer.