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.
The research you fund through LCRF is making meaningful progress in the fight against lung cancer. We are pleased to share our 2023 grantees’ one-year updates in this series.
Lloyd Bod, PhD
Massachusetts General Hospital 2023 LCRF Minority Career Development Award (CDA) in Lung Cancer
What he’s doing: Dr. Bod is harnessing the power of immune cells to fight lung cancer, specifically by targeting B cells and a molecule called Tim-1.
How it’s going: Tim-1 plays a critical role in suppressing immune responses, and by inhibiting this checkpoint, Dr. Bod is enhancing the body’s ability to fight cancer. In animal models, combining Tim-1 inhibitors with PD-L1 inhibitors—a key component of current immunotherapies—has shown promising results in improving anti-cancer effects.
What it could mean for patients: This research is still in its early stages, but the potential for this combination therapy to boost immunotherapy effectiveness could offer new hope for lung cancer patients, especially those whose cancers are resistant to current treatments.
The Food and Drug Administration (FDA) approved larotrectinib (Vitrakvi) for adult and pediatric patients with NTRK gene fusion-positive solid tumors.
Why it’s important
Neurotrophic tyrosine receptor kinase (NTRK) gene fusions are implicated as drivers of cancer (oncogenic) development in various cancers including lung cancer. The prevalence of NTRK fusions is 0.1 to 0.3% in non-small cell lung cancer (NSCLC).
Larotrectinib is an oral TRK inhibitor that has received FDA approval based on the results of 3 clinical studies. LOXO-TRK-14001 (NCT02122913), SCOUT (NCT02637687), and NAVIGATE (NCT02576431) trials included 339 pediatric and adult patients with an NTRK gene fusion cancer whose disease either progressed on standard treatment or they could not receive surgery for locally advanced disease.
The response rate for treatment with larotrectinib was 60% (complete response 24%) and control of cancer lasted for a median of more than 43 months. In 30 previously treated lung cancer patients, the response was 74%. The median progression-free survival (PFS) or time the cancer was controlled was 33 months. Larotrectinib had very good activity in the brain with many brain metastases responding to treatment. The most common side effects were rash, muscle pain, nausea, vomiting, fever, dizziness, weight gain, diarrhea, constipation, cough, fatigue, and abnormal laboratory tests.
What it means for patients
Larotrectinib is an effective treatment for NTRK fusion positive NSCLC. It is important to note that NTRK fusions are present in many tumors other than lung cancer – including thyroid, gastrointestinal, central nervous system, and salivary gland cancers as well as sarcomas and pediatric cancers. Although NTRK fusions are relatively uncommon, larotrectinib represents effective treatment for patients whose cancers contain this molecular abnormality. This supports the importance of doing biomarker (molecular, genomic) testing to evaluate newly diagnosed lung cancer patients and in patients whose cancer has not been previously tested for NTRK fusions.
What to look for
NTRK fusions represent another actionable target for cancer treatment. Look for more research attempting to identify novel targets to direct effective, personalized cancer therapy.
The research you fund through LCRF is making meaningful progress in the fight against lung cancer. We are pleased to share our 2023 grantees’ one-year updates in this series.
Ann Pendergast, PhD
Duke University School of Medicine 2023 LCRF Research Grant on Understanding Resistance in Lung Cancer
What she’s doing: Dr. Pendergast is conducting groundbreaking work to uncover new ways to treat therapy-resistant small cell lung cancer (SCLC). Her research focuses on understanding how cancer cells communicate at the molecular level, specifically through RNA messages.
How it’s going: Dr. Pendergast’s team has identified ABL, a proto-oncogene that supports cancer growth, as a key target. By inhibiting ABL, they’ve found that cancer cells experience increased DNA damage, which can slow or stop tumor growth. Even more promising, when combined with ATR inhibitors—a protein that protects cells from DNA damage—this approach significantly reduced metastatic tumors and prolonged survival in tumor-bearing mice.
What it could mean for patients: While this research is still in its early stages, discoveries like these lay the foundation for smarter, more effective therapies for patients with SCLC.
Foundation honors contributions of Raymond E. Chalmé and Dr. Joan H. Schiller
NEW YORK, NY (April 22, 2025) – The Lung Cancer Research Foundation (LCRF) is pleased to announce Raymond E. Chalmé as its honoree for the 4th annual Evening of Innovation gala, Joan H. Schiller, MD as the recipient of the Founders Award, and AstraZeneca as the evening’s Corporate Honoree. The gala will be held on September 17, 2025, at Cipriani 25 Broadway in Manhattan. Members of LCRF’s Board of Directors and Gala Committee are committed to showcasing LCRF’s impact through recognition of an individual whose support of the organization and the field of lung cancer research is unparalleled, and someone who exemplifies the spirit of LCRF to improve patient outcomes through research.
Raymond E. Chalmé, a long-time member of LCRF’s board of directors, has had an enormous impact on lung cancer research, the research community, and countless people affected by lung cancer for nearly two decades. He and his family founded Elliot’s Legacy Kites for a Cure, an event that raises significant funds for research and is named for his late father, Elliot Chalmé A’H, who passed away from lung cancer at the age of 56. The support and commitment shown by the Chalmé family has been transformative, fueling critical advances in lung cancer research. In 18 years, this family-centered event has raised more than $8 million, which in turn fuels another nearly $50 million in follow-on research funding.
“Ray’s commitment to lung cancer research is immeasurable,” remarked Aubrey Rhodes, Executive Director of LCRF. “He has inspired so many to share in the vision of one day curing lung cancer through research. It is only fitting that we honor him, and the life-changing impact of the support he and his family have given this community.”
“Being honored at this event means the world to me,” said Mr. Chalmé. “It’s amazing to see how far lung cancer research has come since we lost our dad. Knowing that we’ve played a role in helping people live longer and pushing research forward is incredibly rewarding. When we started Elliot’s Legacy, there was no surviving lung cancer. Now, survival rates are up, and some of my fellow LCRF board members are living proof of that. That’s all because of research. But there’s still so much more to do, and my family and I are dedicated to keeping this fight going. I’m truly honored to be part of LCRF’s mission.”
The foundation will also bestow its Founders Award at the Evening of Innovation gala on Joan H. Schiller, MD, in recognition of her lifetime contributions to the field of lung cancer research and her dedication to her patients and their families. As founder and president of Free to Breathe, Dr. Schiller instigated a movement of support for lung cancer research – the first such organization to represent the needs of lung cancer patients. She is widely published and internationally recognized for her work in lung cancer clinical research and has served as a member of the LCRF Board of Directors and its legacy organizations for more than two decades. In addition to her service as a board member for LCRF, she serves in an advisory capacity to LCRF’s Education and Engagement Committee. Currently, Dr. Schiller chairs Oncology Advocates United for Health – International (OUCH-I), an organization she founded to focus on the intersection of climate change and lung health, lung cancer treatment, and overall outcomes.
Mary Ann Tighe, LCRF Board Member, founder of LCRF’s legacy organization Joan’s Legacy, and CEO of NY Tri-State Region at CBRE, shares her admiration: “I’ve had the privilege of knowing Ray Chalmé for many years as a fellow board member and passionate advocate for lung cancer research. His unwavering commitment to advancing this cause is undeniable, making him truly deserving to be honored at the Evening of Innovation gala. Joan Schiller also holds a special place in our community. She was a trailblazer in recognizing the need for organized, private funding for lung cancer research, and her own research and clinical work reflects her deep dedication to improving patients’ lives. Her leadership has been instrumental in shaping LCRF’s top-tier research program. She is more than deserving of this Founders Award.”
“I am truly honored to receive the Founders Award,” says Dr. Schiller. “Placing patients first has always been part of who I am, both as a clinician and a researcher. Bringing Free to Breathe together with LCRF and serving with my wonderful colleagues on the board, as well as the staff of LCRF, to advance lung cancer research has been a great privilege.”
Nabil Chebab, US Medical Franchise Head, Lung Cancer, AstraZeneca, said: “AstraZeneca is proud to receive the Corporate Honoree recognition from LCRF. We’re honored to stand alongside tireless heroes of lung cancer research and advocacy, like Ray Chalmé and Dr. Schiller, who embody the very best in the oncology community. We believe that our combined efforts – in research, advocacy and industry – will help patients facing lung cancer to live longer and live better. Every scientific discovery represents a critical step for the patients we serve, as we work to eliminate lung cancer as a cause of death.”
The 2025 Evening of Innovation gala is scheduled to take place at 6 pm on Wednesday, September 17, 2025, at Cipriani 25 Broadway in New York City. Attendees will hear from the many people whose lives were influenced by the generosity and vision of Raymond E. Chalmé and his family, and the care and forward-thinking of Dr. Joan Schiller, and provide attendees with opportunities to make their own impact on lung cancer research. More details can be found at LCRF.org/gala.
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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.
Drs. Eric Singhi and Isabel Preeshagul talked about the challenges faced by young people with the lung cancer diagnosis during our April 2025 livestream. They were joined by Caroline and Lauren, who shared their stories.
Watch the recording below. Register for our next livestream event.
