New Team Science Award is $1.5 million over three years
NEW YORK, NY (June 17, 2025) – The Lung Cancer Research Foundation (LCRF) announces today a new funding mechanism: the 2025 LCRF Team Science Award on Advancing Therapies Toward Curing EGFR Mutated Lung Cancers. The Request for Proposals is now open for submissions. Designed to bring together scientific teams to accomplish innovative breakthroughs, this team science award must include at least two projects directed at understanding and treatment of resistant or persistent disease in EGFR mutated lung cancer.
Lung cancer is responsible for more deaths worldwide than any other cancer, accounting for an estimated 124,730 deaths annually in the United States alone.1In the last 10 to 15 years, accelerated clinical trials and FDA approvals of targeted therapies for non-small cell lung carcinoma have been possible in part due to advances in molecular profiling of tumors. Many of these targeted therapies are directed against oncogenic drivers.
Epidermal growth factor receptor (EGFR) mutations were the first oncogenic drivers that were successfully targeted with the use of tyrosine kinase inhibitors (TKIs). Subsequently additional oncogenic driver alterations in EML4-ALK, BRAF, RET, KRAS G12C, HER2, MET, NTRK, ROS1 and NRG1 were identified along with corresponding therapeutic options for treatment. Several TKIs including gefitinib, erlotinib, afatinib, dacomitinib, and osimertinib have been approved by the FDA for the treatment of EGFR mutated (EGFRmut+) non small cell lung cancer (NSCLC.) Despite substantial progress in the treatment of EGFRmut+ lung cancer, available treatments are not curative, and resistance invariably develops. Sometimes biopsies are repeated to identify the source of resistance to potentially evaluate patients for additional targeted therapy. Usually, at some point in time chemotherapy is employed to treat the disease. Immunotherapy in the form of PD-1/PD-L1 inhibitors has revolutionized the treatment of many forms of lung cancer but has not proven effective in the treatment of most oncogene-driven lung cancers.
Given that therapeutic options available to date are not curative, there is a need for novel approaches to treat these lung cancers and improve outcomes for patients with the ultimate intention of cure. This grant mechanism will focus on furthering the development of novel therapies for patients with EGFRmut+ NSCLC.
“There has been so much scientific discovery in EGFR mutated lung cancer, and with the development of targeted treatments, patients are living longer,” said Benay Taub, lung cancer survivor. “However, even with the best of circumstances, resistance develops and we need patients to have more treatment options. The goal of this award is to support a team of committed researchers in pursuit of improved treatments and outcomes for lung cancer patients and hopefully, one day, a cure.”
“EGFR discoveries were the start of oncogene-driven treatment and while the science has made great strides, there is still a significant need for more to be discovered,” says Dr. Antoinette Wozniak, Chief Scientific Officer for LCRF. “Our commitment to people affected by lung cancer is simple: continue to fund research that pushes the boundaries of what is known to what is possible – toward a cure. This award will hopefully move the science in that direction.”
“Tomorrow’s breakthroughs are made possible by research that happens today,” emphasized David Carbone, MD, PhD, Director, Translational Therapeutics Program, The Ohio State University Wexner Medical Center and member of LCRF’s Scientific Advisory Board. “Taking a team approach to combatting resistance in EGFR mutant lung cancer promises to accelerate the pace of discovery.”
This new Team Science Award is made possible by a generous private donation from Benay and Steven Taub. Their visionary support reflects a deep belief in the power of collaboration to drive scientific discovery.
Submissions to the Request for Proposals will be reviewed through a two-step process: Letters of Intent will be accepted until midnight on July 29, 2025; if selected, projects will then be chosen to submit full proposals. All applications will be subject to a rigorous review by LCRF’s Scientific Advisory Board. More details about the Request for Proposals, along with eligibility, requirements, and deadlines can be found at LCRF.org/FundingOpportunities.
1. Siegel RL, Giaquinto AM, Jemal A. CA: A Cancer Journal for Clinicians, Vol 24, Issue 1, Jan/Feb 2024
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About the Lung Cancer Research Foundation (LCRF) The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 429 research grants, totaling nearly $48 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information about the LCRF grant program and funding opportunities, visit LCRF.org/research.
Contact: LUNG CANCER RESEARCH FOUNDATION (LCRF) Sheila Sullivan Sr. Director, Marketing & Communications ssullivan@LCRF.org
$2.25 million research collaboration focused on understanding and treating lung cancers harboring HER2 mutations; call for proposals
NEW YORK, NY (June 17, 2025) – The Lung Cancer Research Foundation (LCRF) announces today a new research collaboration with Boehringer Ingelheim creating two funding mechanisms designed to address HER2 mutations in lung cancer: a new Team Science Award and an Early Career Investigator Award.
Lung cancer is responsible for more deaths worldwide than any other cancer, accounting for an estimated 130,180 deaths annually in the United States alone.1 In the last 10 to 15 years, accelerated clinical trials and FDA approvals of targeted therapies for non-small cell lung carcinoma have been possible in part due to advances in molecular profiling of tumors. Many of these targeted therapies are directed against oncogenic drivers.
The HER family of tyrosine kinases include HER1 (epidermal growth factor receptor [EGFR] or ERBB1), HER2 (HER2/neu or ERBB2), HER3, and HER4. EGFR mutations were one of the first oncogenic drivers that were successfully targeted with the use of tyrosine kinase inhibitors. Despite substantial progress in this area, available treatments are generally not curative, and resistance invariably develops. HER2 mutations have also been identified as potential oncogenic drivers in lung cancer and occur in up to 4% of NSCLC.2,3 In the past two decades, several clinical trials have investigated the use of anti-HER2 therapies in lung cancer but led to disappointing results. On August 11, 2022, the Food and Drug Administration granted accelerated approval to trastuzumab deruxtecan for patients with unresectable or metastatic NSCLC whose tumors have activating HER2 mutations, as detected by an FDA-approved test, and who have received a prior systemic therapy.4 This was a positive step forward for patients with NSCLC whose tumors harbor these mutations. Most recently there are orally administered tyrosine kinase inhibitors of HER2 that have demonstrated promising results in the treatment of HER2-mutant NSCLC.
Immunotherapeutic strategies have not been successful in the treatment of lung cancers with EGFR or HER2 mutations. It is of vital importance that there is a better understanding of the biology of HER2-mutated lung cancer as well as the mechanism of tumor response and resistance. Moreover, given that therapeutic options available to date are not curative, there is a need for novel approaches to treat HER2-mutant lung cancers. Boehringer Ingelheim and LCRF share the belief that a team approach to solving complex issues has the greatest likelihood to have near-term impact for patients, and funding early career investigators maintains the research continuum needed for scientific discovery that leads to breakthroughs.
“We believe that supporting scientists to pursue their curiosity is key to driving meaningful progress and innovation—and that collaboration is essential to bringing groundbreaking treatments to patients,“ said Bjoern Rueter, U.S. Vice President, Clinical Development and Medical Affairs. “We are excited to join forces with Lung Cancer Research Foundation as we embark on a new era for cancer research and create the Team Science and Early Career Investigator awards.”
“Delivering impact to patients is what drives LCRF’s research program,” says Dr. Antoinette Wozniak, Chief Scientific Officer for LCRF. “Research collaborations like this will accelerate the pace of scientific discovery moving forward. Our shared commitment to improving outcomes for people living with lung cancer continues to provide hope.”
The LCRF | Boehringer Ingelheim Team Science Award on Innovative Approaches Toward the Treatment of HER2-Driven Lung Cancer award, is a $1.5 million, three-year award to a team of researchers whose proposals have a program of closely integrated projects focused on the science behind HER2 mutations as oncogenic drivers of malignancy and/or the development of novel therapeutic approaches for patients with tumors harboring HER2 mutations.
The LCRF | Boehringer Ingelheim Early Career Investigator’s Award on Innovative Approaches Toward the Treatment of HER2-Driven Lung Cancer is expected to total $750,000 for up to three, two-year awards of $250,000 each, focused on HER2 mutations.
Submissions to the Request for Proposals will be reviewed through a two-step process: Letters of Intent will be accepted until midnight on July 29, 2025; if selected, projects will then be chosen to submit full proposals. All applications will be subject to a rigorous review by LCRF’s Scientific Advisory Board. More details about the Request for Proposal, along with eligibility, requirements, and deadlines can be found at LCRF.org/FundingOpportunities.
1. Siegel RL, Giaquinto AM, Jemal A. CA: A Cancer Journal for Clinicians, Vol 24, Issue 1, Jan/Feb 2024 2. Stephens P et al. Intragenic ERBB2 kinase mutations in tumours. Nature 431:525, 2004. 3. Riudavets M et al. Targeting HER2 in non-small-cell lung cancer (NSCLC): a glimpse of hope? An updated review on therapeutic strategies in NSCLC harbouring HER2 alterations. ESMO Open 6:100260, 2021 4. Li BT et al. Trastuzumab deruxtecan in HER2-mutant non-small-cell lung cancer, N Engl J Med 386:241, 2022.
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About the Lung Cancer Research Foundation (LCRF) The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 429 research grants, totaling nearly $48 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information about the LCRF grant program and funding opportunities, visit LCRF.org/research.
About Boehringer Ingelheim in Oncology We have a clear aspiration – to transform the lives of people with cancer by delivering meaningful advances, with the ultimate goal of curing a range of cancers. Boehringer Ingelheim’s generational commitment to driving scientific innovation is reflected by the company’s robust pipeline of cancer cell-directed and immuno-oncology investigational therapies, as well as the smart combination of these approaches. Boehringer’s ambition in oncology is to take a diligent and broad approach, creating a collaborative research network to tap into a diversity of minds, which is vital in addressing some of the most challenging, but potentially most impactful, areas of cancer research. Simply put, for Boehringer Ingelheim, cancer care is personal, today and for generations. Cancer | Boehringer Ingelheim
Contacts: LUNG CANCER RESEARCH FOUNDATION (LCRF) Sheila Sullivan Sr. Director, Marketing & Communications ssullivan@lcrf.org
The Food and Drug Administration (FDA) granted accelerated approval to telisotuzumab vedotin-tllv, a c-MET-directed antibody drug conjugate, for adults with locally advanced or metastatic, non-squamous non-small cell lung cancer (NSCLC) with high c-MET protein overexpression, who have received a prior therapy.
Why it’s important
An antibody drug conjugate (ADC) is like a “guided missile.” It is composed of an antibody that binds to a “target” on the cancer cell. The ADC is then taken up by the cancer cell. Inside the cell, a “linker” connecting the antibody to the chemotherapy (payload) is broken and the treatment is released.
ADCs aim to deliver a concentrated dose of chemotherapy directly to cancer cells, minimizing damage to healthy cells. In the case of telisotuzumab the target is c-MET. The c-MET protein, also known as hepatocyte growth factor receptor, plays a crucial role in cell growth and development. Abnormal c-MET contributes to tumor progression and metastatic tumor activity, and it is associated with resistance to treatment. Increased (overexpression) of c-MET is present in up to 50% of patients with NSCLC.
Telisotuzumab was evaluated in multiple cancers in the LUMINOSITY study (NCT03539536). The trial included 84 patients with non-squamous NSCLC and high c-MET protein overexpression who had received prior therapy. The response rate was 35% and the median duration of the response was 7.2 months. The most common side effects were peripheral neuropathy, fatigue, decreased appetite, and edema. Patients also experienced lab abnormalities including decreased blood counts (hemoglobin, lymphocytes) and elevation of liver enzymes and glucose, and decreased sodium, phosphorus, and calcium. All side effects were manageable.
What it means for patients
Telisotuzumab is the first ADC to get FDA approval for the treatment of NSCLC. The indication for treatment is after prior standard therapy. This is an “accelerated approval” which is a mechanism whereby drugs that are seen to have a clinical benefit are made available while awaiting more information from additional clinical trials. The drug company usually will still need to conduct studies to confirm that tumor shrinkage predicts that patients will live longer before full FDA approval is granted.
What to look for
There is a big interest in utilizing ADCs for the treatment of all types of lung cancer. There is much work to be done including: identifying the best targets, developing the best technology to manufacture ADCs to direct their action at cancer cells and not normal tissue, and discovering biomarkers that determine which cancers are most likely to respond to treatment. Look for more research and clinical trials employing these novel agents in the treatment of lung cancer.
Volunteers provide patient and caregiver perspective to foundation’s grant award process
NEW YORK, NY (June 10, 2025) – The Lung Cancer Research Foundation (LCRF) is pleased to announce the expansion of its Research Advocates. This select group of volunteers includes patients, survivors, caregivers, healthcare professionals, and advocates committed to identifying and funding innovative lung cancer research.
This group plays a vital role in shaping LCRF’s research priorities by helping to identify funding areas, draft requests for proposals (RFPs), review and provide feedback on grant applications, and support efforts in education, awareness, and fundraising.
“Patient involvement in LCRF’s research grant process is a critical component to identifying areas of unmet need and helping to identify the most promising projects to fund,” remarked Dr. Antoinette Wozniak, LCRF’s Chief Scientific Officer. “With their lived experience and input, they ensure that we are investing in projects that have the greatest chance of making an impact on lung cancer and patient outcomes.”
“As a lung cancer survivor, I have experienced firsthand how vital research is—not just in developing new treatments, but in giving me hope for the future,” said Maggie McCloskey, a new LCRF Research Advocate. “Advances in targeted therapies and immunotherapy have extended lives and improved quality of life for people like me. Research is not just about science—it is about creating more tomorrows for patients and their families. As a research advocate, I am proud to help bring that hope to others through research funded by the Lung Cancer Research Foundation.”
“I joined LCRF as a Patient Research Advocate because our voices are vital in shaping research that truly reflects the needs of patients. We are the ones living with the disease, and our experiences can drive more meaningful, patient-centered solutions that improve care and outcomes for everyone facing lung cancer,” remarked Sydney Barned, MD.
LCRF’s Research Advocates:
New Members (2025)
Sydney Barned, MD – Annapolis, MD Internal Medicine Physician & Hospitalist Lung Cancer Patient/Survivor & Advocate
Terri Ann DiJulio – West Chester, PA Lung Cancer Patient/Survivor & Advocate
Catherine Doliente – Houston, TX Lung Cancer Patient/Survivor & Advocate
Deborah H. Friedman – Piermont, NY Retired publicist Lung Cancer Survivor & Advocate
Stephanie Kaiser CRNP, AOCNP – Pittsburgh, PA Thoracic Oncology and Hospice Nurse Practitioner, Board member, Libby’s Lungs; Lung Cancer Advocate
Matthew Koebbe – Madison, AL IASLC Patient Research Advocate Lung Cancer Patient/Survivor & Advocate
Maggie McCloskey – Moraga, CA Lung Cancer Survivor/Patient Advocate
Tillman Nechtman – Saratoga Springs, NY Professor of History at Skidmore College Former Caregiver
Tejal Patel, PharmD, MHA, BCPS – Chicago, IL Vice President, Operations – Sinai Chicago Lung Cancer Patient/Survivor & Advocate
Caroline Blanchard, DNP, FNP-C – Metairie, LA Urologic Oncology Nurse Practitioner Lung Cancer Patient/Survivor & Advocate
Colleen Conner Ziegler — Rochester, NY LCRF Board of Directors, LCRF Scientific Executive Committee Lung Cancer Patient/Survivor & Advocate
Denise Cutlip – Ypsilanti, MI LCRF Education and Engagement Committee Lung Cancer Patient/Survivor & Advocate
Dusty J. Donaldson — High Point, NC Founder, Dusty Joy Foundation Lung Cancer Patient/Survivor & Advocate
Bruce C. Dunbar — New Rochelle, NY LCRF Board of Directors and Scientific Advisory Board member Lung Cancer Patient/Survivor & Advocate
Stephen Huff – College Grove, TN Founder of The Huff Project Lung Cancer Patient/Survivor & Advocate
Tiffini Joseph, BSN, RN, CCRN – Pembroke Pines, FL Pediatric CVICU, Joe DiMaggio Children’s Hospital Lung Cancer Patient Advocate
Kristen H. Kimball, MS, MEM — Boston, MA Educator, UCONN Lung Cancer Patient Advocate and Former Caregiver
Barbara LaMonaca — Falls Church, VA BSN, Speech Pathology & Audiology, Retired Lung Cancer Patient/Survivor & Advocate
Barbara Marsh, DSW, MSW – Miamisburg, OH Social Worker Caregiver/Lung Cancer Patient Advocate
Frank McKenna, MS Ed — Virginia Beach, VA Cancer Exercise Specialist; Founder, Beach Better Bodies Lung Cancer Patient/Survivor & Advocate
Aileen Murgatroyd – Yorkshire, UK Lung Cancer Patient Advocate
Emily Venanzi, PhD — Newton, MA ALK Positive Inc. Medical Committee Lung Cancer Patient/Survivor & Advocate
Marc Tannenbaum, MD – New York, NY Caregiver/Lung Cancer Patient Advocate
Randi Warren, MD – New York, NY Lung Cancer Patient/Survivor & AdvocateCaregiver/Lung Cancer Patient Advocate
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About the Lung Cancer Research Foundation (LCRF) The Lung Cancer Research Foundation® (LCRF) is the leading nonprofit organization focused on funding innovative, high-reward research with the potential to extend survival and improve quality of life for people with lung cancer. LCRF’s mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment, and cure of lung cancer. To date, LCRF has funded 429 research grants, totaling nearly $48 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information, visit LCRF.org.
LCRF publishes a quarterly e-newsletter highlighting the latest developments in the lung cancer space and announcing upcoming events. The e-news also features stories from patients and supporters.
The research you fund through LCRF is making meaningful progress in the fight against lung cancer. Here are links to several grantees’ one-year updates, which were posted recently as a series.
Creating a new approach to treatment Trever Bivona, MD, PhD, University of California, San Francisco 2023 LCRF Research Grant on Understanding Resistance in Lung Cancer
ADCs for difficult to treat cancers CarlGay, MD, PhD, MD Anderson Cancer Center 2023 LCRF–Daiichi Sankyo–AstraZeneca Research Grant on Antibody Drug Conjugates
New targets for therapy-resistant SCLC Ann Pendergast, PhD, Duke University School of Medicine 2023 LCRF Research Grant on Understanding Resistance in Lung Cancer
A group of about 50 patients, caregivers, and others interested in lung cancer treatment gathered at Quartino Restaurant in Chicago on May 14 for LCRF Together Chicago.
Guest experts included Jessica Donington, MD and Noura Choudhury, MD from UChicago Medicine; Divya Gupta, MD and Michelle J. Munroe, APRN from Northwestern Medicine, along with moderator Antoinette Wozniak, MD, LCRF’s Chief Scientific Officer.
A number of topics were discussed by the panelists:
Targeted therapy
Drs. Gupta and Choudhury updated the audience about recent advances in the treatment of patients with oncogene-driven lung cancer including those with mutations in EGFR, ALK, KRAS, HER2, and ROS1. Several attendees were quite engaged and asked multiple questions about targeted treatment of these malignancies.
Surgery: an option for stage 4 lung cancer?
Dr. Donington, who is a thoracic surgeon, explained that “classically, surgery isn’t an option because we know that the cancer cells have moved to other parts of the body.” She also stated, “In recent years, we’re seeing this more because our systemic medicines are so much better, and patients might have only one other site of disease. However, it’s very selective.” Radiation therapy has also been utilized in this situation.
Others pointed out that the surgery “is not a piece of cake” and that systemic treatment would still be needed in addition to the surgery. The decision for surgery in stage 4 lung cancer patients should be made by the treating physicians usually in the context of a multidisciplinary clinic.
Early-stage disease
Another topic of discussion was advancements in treating early-stage lung cancer. Dr. Donington shared that during her entire career, “early stage has always taken a back seat at the ASCO meeting, but finally the biggest recent advancements have been in early-stage disease.” Chemotherapy and immunotherapy are already FDA approved for neoadjuvant (before surgery) treatment and the first neoadjuvant trial with osimertinib in EGFR mutant lung cancer is being presented at the upcoming ASCO meeting.
Supportive care
Ms. Munroe addressed special support for patients who are experiencing toxicities, especially those undergoing immunotherapy. “Being on top of symptom management is crucial,” she said. “We are trying to make sure that patients are having a good quality of life – and ensuring that cancer is only a small portion of their life. Patients should be able to work if they need or want to and be able to spend time with their families. They should not have to always worry about what’s next with their cancer treatment.”
Other topics
Drs. Choudhury and Gupta updated the audience on a variety of topics including small cell lung cancer, antibody drug conjugates, and the use of biomarkers to detect and monitor lung cancers.
Screening and detection
The group engaged in a very animated discussion regarding lung cancer screening. “Only about 6% of people diagnosed were found through screening,” Dr. Donington said. “I think for screening to be impactful, we need to broaden the criteria and increase the infrastructure and access so that the people who should get screened, do get screened.”
Several attendees voiced their concerns regarding never-smoking patients and the fact that they would not have been eligible for lung cancer screening. Dr. Wozniak pointed out that general practitioners need to be more aware that people can and do get lung cancer despite not having any known risk factors.
Other upcoming educational events include a Together Separately livestream on June 25, which will recap the ASCO Annual Meeting May 30 – June 3.
When Lexi recorded her story for us, her introduction was straight to the point: “Hi, I’m Lexi. I’m 39 years old. I live in Chicago, and I am a wife, a mother, sister, daughter, friend. And I have Stage 4 non-small cell lung cancer.”
Two years ago, Lexi noted she was struggling with pain in her left shoulder along with extreme weight loss “which I attributed to stress and just feeling like I was on a hamster wheel between work and kids and anything else going on.” With the weight fluctuation, “I didn’t put too much stock into it because I was having babies, and losing weight from the babies, and then gaining weight for the babies. But I really started to know that something was wrong when I was starting to feel severe pain in my left leg. I started limping.”
People noticed. Her co-workers were concerned and would often ask her if she was okay. Then Lexi’s husband went on a business trip. Without his help, she realized how difficult it was to physically lift her infant son, get him into his sleep sack, and into his crib. “My body was wrecked. I felt like – wow, I am 37 and a healthy person. How is my body in such a state?”
When he returned, she was lying on the floor of their family room, which was the only position she found comfortable. Her 8-year-old daughter came and stood over her. “She said, ‘Mom, if I was in this much pain, you’d be taking me to see a doctor.’” After months of worsening pain, that was what finally spurred Lexi into action.
Hear Lexi talk about the symptoms that led to her lung cancer diagnosis.
Getting a diagnosis
Her brother-in-law, a physician, recommended she start with an orthopedic surgeon. An X-ray indicated hip dysplasia, and she was told she’d probably need a hip replacement in 20 years or so. In the meantime, she was directed to start physical therapy. If the pain continued, she would have an injection with an MRI.
She recalls saying, “It’s really bad, and I’m too young for this. It feels pretty severe. Can we just get that MRI?”
The doctor was reluctant but decided to refer her given how much difficulty she had walking. “They happened to have imaging in the same little medical complex that I was in,” Lexi explained. “I went down and tried to schedule my MRI, and the woman there said, it takes us three days to process the order and then we can schedule you after that. And I was like, look, you’re here. I’m here. Nobody else is here. I mean, the place was empty. It was the Friday before Thanksgiving. She kind of laughed and said, okay, gimme a second. She messaged the tech in the back, and they said, ‘We’ll take her.’”
After the appointment, Lexi felt energized. She was taking care of her health issue, staying on top of her job, and had done all her shopping for Thanksgiving. “We were getting ready to have a nice week. Then, three hours later, the orthopedic surgeon called me and said, ‘You have a massive tumor in your left leg, and a smaller one in your hip. You cannot put any weight on it, or it will break. You need to come in right away and get fitted for crutches, and you have an 8 AM appointment with the orthopedic oncologist on Monday.’”
Lexi was beyond shocked – that weekend, she was a bundle of stress and emotion. When Monday came, the doctor told her he was hoping she had lymphoma. On Wednesday, she had a bone biopsy.
The next day “was pretty tough, but I was determined to give my kids the sort of familiar flavors that they know and love. My husband set up a table and a chair, and he was my sous chef, and he went and got everything for me. But it was a pretty somber Thanksgiving. There was a big weight and heaviness to it, and we just didn’t know how worried to be.”
Waiting for test resultsThanksgiving preparation and baking
The initial results came in the following Tuesday, showing metastatic adenocarcinoma consistent with lung cancer. Seeing the shock on Lexi’s face, he explained that they were seeing increased incidence of lung cancer in young women with no history of smoking. Lexi had no idea. “I was in shock and disbelief and was adamant that it must be something else.”
“I knew very little about lung cancer. I was taught the same thing that many of us were taught growing up – don’t smoke, you’ll get lung cancer, or your lungs will turn black. I certainly didn’t know anyone who had lung cancer who had never smoked.” She assumed it was one disease she didn’t need to worry about.
“I’m seeing that so many other people in my sphere who hear about this are equally shocked,” she said. “And then you have the attempt of spreading awareness and advocating for people who have this disease. A lot of that happens on social media, so I’m involved with a couple of organizations where we talk about this, and in the comments – which I try not to look at – there’s this immediate attempt to try to identify cause or reason in a way that I don’t really see with other cancers. They think there must have been some sort of behavioral component to this. Most people still hold onto that belief and that stigma, and they can’t wrap their heads around the fact that the reality is that anybody who has lungs can get lung cancer.”
“We have to start to change the conversation, and we have to continue to advocate and bring awareness and say, I don’t blame you for being surprised and shocked. The reality is that it’s random. I came into contact with something at some point in my life that my body held onto and cells mutated. And this happened.”
Telling children about cancer
Lexi is grateful for her support system: her husband, her mom, her sister, and her close group of friends. They have ”stepped up and want to rally around me in a way that I don’t feel is necessarily deserving. But I am so thankful for it.”
“My kids understand what is going on for what is appropriate at their age to understand,” she said. “My oldest knows more than my middle, who knows more than the youngest – who just kind of knows that mommy has some booboos and gets tired some days.”
“You know, I carry a lot of guilt. I feel bad that I am putting something so heavy on my kids so young and before they really needed to have anything heavy. So maybe this is advice for myself in addition to other people, but I’m trying to let go of that guilt. Because this is our new normal, this is our new reality, and my goal is to show them that mom is going to do everything that she can to try to overcome it – try to fight it – because I want to be there for them.”
She feels honesty is important – at a level the child can understand. “Try to meet them where they are in terms of giving them enough information to understand what’s happening – because your life will change, and it will look different and everybody has to adapt and make it work.”
“Life still goes on – the kids are still going to fight, and I’m still going to have to step in, and there’s still going to be moments where you love them to pieces and they get on your nerves, and all the things are still true. None of that goes away because you have cancer and have a terminal diagnosis. Life still happens.”
Patient advocacy and kindred spirits
Lexi didn’t know anyone else whose life looked like hers. “It was very helpful to have found a patient advocacy group dedicated to not only people who have lung cancer, but young people who have lung cancer,” she said. “That was really wonderful in terms of just feeling like I wasn’t alone in this.
When I was in the doctor’s office, I was 40 years younger than most of the people there. And you feel very alone. It’s helpful to have people around you, who you can feel like you’re in the same boat – who you can share experiences with, who you can share advice with.”
She follows LCRF and other groups on social media, and finds it helpful to see the statistics and information being posted. “All of that information arms me to be a better advocate for myself when I am talking to my medical team so that I can say, ‘Hey, I’m seeing X, Y, Z, what do you know about it?’ It also helps me share and spread additional awareness to other people in my sphere.”
Lexi shared LCRF’s posts Lung Cancer Awareness Month last November. “People would respond, and they were shocked at some of the statistics that they were seeing – that it’s the leading cancer that impacts women. There are just some things like that that I think are really powerful statements, that are useful to not only help spread knowledge, but dispel some of the stigma that’s associated with lung cancer.”
Awareness at a football gameFree to Breathe Walk
Lexi first heard about LCRF’s Free to Breathe Walk about a month after her diagnosis, when her sister was trying to find lung cancer related events in Chicago. While they had missed the 2023 walk, her sister suggested they sign up in 2024. “It was always kind of in the back of my mind, but with my leg, it’s hard to walk for long periods of time,” Lexi explained. “Then, with the barrage of treatments that I was getting, I was not feeling great at all. It just felt like it couldn’t happen. There was something insurmountable about being able to walk for that period of time and also create a team and do the fundraising.” Then, about a month before the walk, “I was feeling good at the moment. And I said to my sister, let’s do it.”
They only had a few weeks to plan, and Lexi thought their team might end up being immediate family only. To their surprise, “in less than a month, we had raised over $7,500 and had 50 people come and walk at the event. I felt very accomplished that I could walk that amount, and it was great. It felt really uplifting, hopeful, and inspiring.”
To her surprise, her entire team of doctors was there, too. “I saw them and cried. I’d never seen them outside of the hospital. It just felt like we were doing some good, we were making some progress forward to something.”
She also met a patient who serves on LCRF’s Board of Directors. “She was seeking me out to say hi and was just so nice and warm. Another thing about this community of people is – it’s so devastating that we have to meet under these circumstances, but I’m meeting some of the most amazing people that I never would have known in my life. And the people who I meet, they’re tenacious and in the best possible way, they have ambitions to live – and want to do good.”
The LCRF walk was the first event Lexi had been part of since her diagnosis just under a year earlier. She felt she was reclaiming her power. “Someone else I was talking to said, ‘I feel like there’s so many type A women here, and so many similarities between so many of us.’”
“Don’t stop me now!”“Rage room” destressingAfter her final leg radiation
A whole person
Lexi has had chemotherapy and targeted therapy, has taken part in a drug trial, and finally had the primary mass in her lung surgically removed. “My doctor is really great about adjusting course as necessary, as new information, data and trials are available.”
Still, Lexi feels that patients are often discussed in a clinical way that focuses on treatment details at the expense of the person being treated. “It isn’t just the impact that this drug is having on my body, but what it’s doing to my life,” she explained. “There are certain drugs that I’ve had that make it impossible to get through your day, just even in terms of – I can’t put on pants because my fingers are so cut up. I can’t even pull pants on without them bleeding. Or I can’t zip up my kids’ backpacks again because of my hands, or I can’t eat something because of mucositis in my mouth with the sores. When you say, ‘this person has grade three mucositis,’ that doesn’t accurately convey and portray what you’re really dealing with.”
“I’m not just a 39-year-old female with metastatic adenocarcinoma, EGFR, exon 20, you know, dah-dah-dah. I’m a person, I’m a human, and I am trying to recover from this diagnosis in the most graceful way that I possibly can – and still be able to be a person to show up for my kids and my husband and my family and my friends and myself.”
She knows that scientific research is her best hope for the future. “I’m keeping my eye on all the drugs, and we’ll see what gets approved. For Exon 20, there are not a lot of options necessarily in terms of targeted drugs. I’m trying to think about long term as much as I can – what am I doing now, and how will that impact long-term survival.”
The American Association for Cancer Research (AACR) annual meeting, one of the largest cancer research meetings in the world, was held in Chicago this April. This meeting covers research into all cancers and attracts thousands of attendees each year.
This year’s meeting featured several research studies presented by LCRF grantees – advancements in lung cancer science made possible by LCRF’s supporters and donors. Among the highlights:
The plenary session on KRAS mutant lung cancers acknowledged the postdoctoral work of 2022 grantee Jonathan Ostrem, MD, PhD. Dr. Ostrem is currently developing an approach for tumor-specific release of drugs in the context of EGFR mutant tumors.
The team working with 2022 grantee Timothy Burns, MD, PhD presented a poster on identifying specific mechanism in these metastatic cells and characterized several therapeutic approaches to eliminate them.
Work by 2022 grantee Jaime Schneider, MD, PhD – regarding metabolic reprogramming of ALK+ lung cancer – was highly referred in a session dedicated to lung cancer. Dr. Burns’ and Dr. Schneiders’ studies both have potential for clinical translation.
Another highly discussed topic is drug-tolerant persister cells. 2023 grantee Benjamin Morris, PhD presented a poster on tracking and characterizing drug-resistant cells of small cell lung cancer.
In addition to the projects presented by LCRF grantees, Scientific Advisory Board members John Heymach, MD, PhD and Charles Rudin, MD, PhD discussed the progress of small-molecule, tyrosine kinase inhibitors in treating lung cancers with HER2 mutation. The next step involves understanding the biology of rare mutations and to overcome brain metastasis. This progress demonstrates another positive development resulting from lung cancer research.
More about the AACR Annual Meeting can be found at the event website.
Drs. Narjust Florez and Isabel Preeshagul discussed the challenges faced by women who are diagnosed with lung cancer – covering risk factors, actionable prevention, and early detection steps to improve patient outcomes. Their talk addressed how women uniquely experience lung cancer, and what known differences are seen in lung cancer between men and women.
Watch the recording below. Register for our next livestream event.
