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The good news

The FDA recently granted accelerated approval to tarlatamab for the treatment of patients with extensive stage small cell lung cancer (ES-SCLC) who have progression of their disease after chemotherapy.

Why it’s important

Small cell lung cancer (SCLC) is a fast-growing type of lung cancer that affects about 10-15% of lung cancer patients in the United States. Because SCLC has an aggressive nature, patients usually present with extensive stage disease. The standard initial treatment of ES-SCLC is chemotherapy, usually in combination with immunotherapy. The cancer initially is very sensitive to the therapy and patients often feel better very quickly. Unfortunately, the disease has a tendency to come back, and it is often resistant to further treatment. Tarlatamab is a unique bispecific T-cell engager. It works by using two antibodies to connect T-cells (immune cells) to a target on the cancer cell. In this case, the target is DLL3 (delta-like ligand 3). DLL3 is present on the surface of more than 85% of SCLC and is thought to be important in the development of SCLC. The FDA approval was based on the results of the DeLLphi-301 trial. Ninety-nine patients with ES-SCLC that progressed after initial treatment were given tarlatamab. The disease responded in 40% of the patients and was controlled for a median of 9.7 months (New England Journal of Medicine, Volume 389, Page 2063, 2023).

What it means for patients

Tarlatamab is a new, unique therapy for patients with ES-SCLC.  Its approval indicates that there is progress being made in the treatment of this disease. It is important to note that tarlatamab treatment carries with it some unique side effects. About 50% of patients developed Cytokine-Release Syndrome (CRS). CRS occurs when the immune system overreacts when exposed to a drug such as Tarlatamab which is a form of immunotherapy. Symptoms can include fever, nausea, rash, muscle aches, and fatigue. The CRS was usually mild and easily treated by the physician. An effect on the nervous system resulting in symptoms such as confusion, tremors, and weakness occurred in 8% of the patients. Again, the side effects were mild and managed by adjusting the dose of the drug. All potential side effects associated with tarlatamab should be discussed with your oncologist before treatment.

What to look for

Effective therapy for ES-SCLC is an area of urgent need and it is very important that new treatments are developed. Tarlatamab has received an accelerated FDA approval which means that its continued approval may depend on the results of additional clinical trials. Expect to see more clinical trials incorporating tarlatamab. Hopefully, this represents the beginning of more advancements in the treatment of SCLC. 

Posted in Research, Science Made SimpleTagged

Volunteers provide patient and caregiver perspective to foundation’s grant award process

NEW YORK, NY (June 11, 2024) – The Lung Cancer Research Foundation (LCRF) is pleased to announce the expansion of its Research Advocate group. This select group of volunteers are patients, survivors, caregivers, healthcare professionals, and advocates committed to identifying and funding innovative lung cancer research.

This group is tasked with playing a significant role in determining areas of research to fund, drafting requests for proposals (RFPs), reviewing, and providing input on grant applications, and supporting education, awareness, and funding efforts.

“Research is how we will improve patients’ lives,” remarked Dr. Antoinette Wozniak, LCRF’s Chief Scientific Officer. “Patient involvement in LCRF’s research grant process, from identifying areas of unmet need to helping identify the most promising projects to fund, ensures that we are investing in projects that have the greatest chance of making an impact on lung cancer and patient outcomes.”

“It is important to have the patient perspective when reviewing submissions for lung cancer research grants,” says Dusty Donaldson, Founder of Dusty Joy Foundation and LCRF Research Advocate. “Being part of the grant review process is both empowering and hopeful, as we see first-hand the innovative thinking that lung cancer scientists are using to make the future brighter for everyone impacted by lung cancer. I am thrilled to work with these dedicated volunteers in advancing research in patient-centric ways and welcome our new colleagues to the group.”

LCRF’s Research Advocates:

New Members (2024)

Caroline Blanchard, DNP, FNP-C – Metairie, LA
Urologic Oncology Nurse Practitioner
Lung Cancer Patient/Survivor & Advocate

Stephen Huff – Franklin, TN
Founder of The Huff Project
Lung Cancer Patient/Survivor & Advocate

Tiffini Joseph, RN – Pembroke Pines, FL
Pediatric CVICU, Joe DiMaggio Children’s Hospital
Lung Cancer Patient Advocate

Barbara Marsh, DSW, MSW – Miamisburg, OH
Social Worker
Caregiver/Lung Cancer Patient Advocate

Aileen Murgatroyd – Sprotbrough, UK
Lung Cancer Patient Advocate

Marc Tannenbaum, MD – New York, NY
Caregiver/Lung Cancer Patient Advocate

Randi Warren, MD – New York, NY
Lung Cancer Patient/Survivor & Advocate

Existing Members:

Aaron Andersen, MD — Waukesha, WI 
Emergency Medicine Physician
Emergency Medical Associates of Waukesha, WI
Lung Cancer Patient 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 Donaldson — High Point, NC
Founder, Dusty Joy Foundation
Lung Cancer Patient/Survivor & Advocate

Bruce Dunbar — New Rochelle, NY
LCRF Board of Directors, LCRF Corporate Development Committee Chair
Lung Cancer Patient/Survivor & Advocate

Kristen H. Kimball, MS, MEM — Boston, MA
Educator, UCONN
Lung Cancer Patient Advocate

Barbara LaMonaca — Falls Church, VA
BSN, Speech Pathology & Audiology, Retired
Lung Cancer Patient/Survivor & Advocate

Frank McKenna, MS Ed — Virginia Beach, VA
Cancer Exercise Specialist
Founder, Beach Better Bodies
Lung Cancer Patient/Survivor & Advocate

Emily Venanzi, PhD — Newton, MA
ALK Positive Inc. Medical Committee 
Lung Cancer Patient/Survivor & Advocate

###

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 419 research grants, totaling nearly $44 million, the highest amount provided by a nonprofit organization dedicated to funding lung cancer research. For more information, visit LCRF.org.

Posted in Announcements, Research

June 2024

It was October 2019, and Suzanne felt sluggish on one of her morning runs. She typically ran 5-7 miles daily and had collected her share of race medals. “I thought it might be bronchitis brewing, so I visited my doctor for a quick fix as I had a race that weekend,” she said. He took a chest X-ray on a Monday. “By Thursday, after additional scans, I received the diagnosis: stage 4, terminal lung cancer.”

Suzanne was determined: “I don’t remember being scared, just ready to fight. And I had an overwhelming desire to protect my family, especially my husband and daughter.”

A blood biomarker test came up negative, but a tissue biopsy revealed Suzanne’s tumor had the ALK mutation. She started alectinib as her first line of treatment on Thanksgiving that year. Things were stable for almost four years before her cancer progressed in mid-2023. She had another comprehensive tissue biopsy, and a new variant was identified. “I am now on Brigatinib, finished one round of radiation, and on my way to stability once again,” she said.

At first, “I did not want to know anything about my cancer,” Suzanne recalled. “I let the oncology team lead me. I am now knowledgeable about different trials, research, what to do in case of progression, how to handle side effects. I added an ALK specialist to my team, which was crucial since she is the one who detected my progression first. Today, I am the leader of my fight. It took me a year to get there. I admire those who take the reigns right from the beginning.”

Part of her education was connecting with other patients through the #TogetherSeparately Lung Cancer Community group on Facebook, as well as using LCRF’s educational materials. She also found other ALK+ patients. “We have formed an amazing group – ALK Positive – which is a big part of my fight. The connections I have with ALK-positive fighters have supported me throughout this journey. They ‘get it.’ When I am going through something, I just look at those who have had similar experiences. Their courage gives me courage.”

“When fear creeps in (and it does), I try to make my faith bigger than my fear. Also, the amazing research being done gives me hope.”

> Learn about genetic mutations and biomarker testing
> Find a patient support group
> Donate to fund lung cancer research

Posted in Journeys, People, Women & Lung CancerTagged ,

LCRF hosted our third annual Together Chicago event May 15 in a beautiful neighborhood in Evanston, IL. A group of patients, caregivers, healthcare providers, and others impacted by lung cancer gathered at LeTour on the sunny evening to connect and learn more about the latest in lung cancer research.

Our panel of experts was moderated by LCRF’s Chief Scientific Officer, Antoinette Wozniak, MD. Joining us as panelists were Rajat Thawani, MBBS and Denise Rouse, MMSPA from UChicago Medicine; and Mary J. Fidler, MD from Rush Medical Center. Ms. Rouse provided her perspective as a physician assistant – a point of view that was new to LCRF Together.

The evening was full of impactful conversations before, during and after the panel discussion. Panelists shared their thoughts, experience, recommendations, and took general questions from the audience. An interesting discussion revolved around early-stage lung cancer treatment, including neoadjuvant, perioperative, and adjuvant therapies, as well as treatment for EGFR- and ALK-positive lung cancers. The conversation on targeted therapies delved into what physicians are doing for patients whose targeted treatment stops controlling their cancer. The panel also explored the side effects of treatments, patient reported outcomes, ADCs, small cell lung cancer, screening, and supportive care options.

Watch our calendar for other events near you and upcoming #TogetherSeparately livestreams.

Posted in LCRF TogetherTagged ,

Nine years ago, in January 2015, Donna Preston was diagnosed with stage 4 lung cancer. Her only symptom was a cough that wouldn’t quit.

“I really wanted to just live my life and keep things normal,” Donna said. “At the time I was diagnosed, my five children were 9-18 and it was a scary time for them. We were always honest with the kids but we also kept life running as normal. Family and friends were understanding and supportive.”

Donna found out her tumor tested positive for ALK mutation. “I knew nothing about genetic mutations like ALK,” she explained. “I was devastated when I was first diagnosed at stage 4 and I thought I would never get to see my children grow up. But as my doctor explained my genetic mutation and how we can manage it, I realized that I did have a future. Nine years later, I am still here and going strong. I was able to see my oldest daughter get married last year!”

“I know that if the targeted therapy medication I’m currently using fails and the cancer spreads there are more medications that I can use. Cancer research continues to advance new treatment options.”

> Learn about genetic mutations and biomarker testing
> Find a patient support group
> Donate to fund lung cancer research

Posted in Journeys, PeopleTagged ,

The good news

The FDA recently approved alectinib as adjuvant treatment for patients after surgical removal of early stage (IB-IIIA) anaplastic lymphoma kinase – positive (ALK+) non-small cell lung cancer (NSCLC).

Why it’s important

ALK rearrangements occur in approximately 5% of patients with NSCLC. Adjuvant treatment is therapy given after surgery to prevent the cancer from returning. Despite the development of targeted therapy specific for ALK+ NSCLC, chemotherapy was the recommended adjuvant treatment for patients after surgery. The Alina trial was a Phase 3 clinical study in which 257 patients with early stage ALK+ NSCLC received alectinib (an oral therapy for ALK+ cancer) or chemotherapy after surgery1. The results showed that 93.8% of the patients in the alectinib group were alive and free of cancer at 2 years compared to 63% of the patients who received chemotherapy alone. The brain is a common site of metastases after surgery and alectinib was also able to significantly control the spread of disease to the brain. alectinib was well tolerated with no new safety concerns.

What it means for patients

This is the first targeted therapy approved for use after surgery for ALK+ lung cancer without the need for chemotherapy. This is an important advancement because it allows patients to be treated with a therapy that specifically targets ALK without the added side effects of chemotherapy. The results are early so it will be a while before it is known whether patients live longer because of the treatment. Patients were treated for 2 years with alectinib, so another outstanding question has to do with the optimal length of treatment. This trial also brings up the importance of molecular testing of lung cancer even when it presents at an early stage.

What to watch for

There will be updates on the results of the Alina trial over the next few years. There will also likely be attempts at answering outstanding questions such as how long to treat patients. Look for adjuvant trials that will evaluate targeted treatment in other types of lung cancer. There is also an interest in evaluating targeted therapy before surgery is done. This approach is called neoadjuvant treatment. Clinical trials are ongoing in this area.

1 New England Journal of Medicine, Volume 390, pages 1265-1276, 2024

Posted in FDA News, Research, Science Made SimpleTagged ,

Foundation expands its research reviewing body to meet strategic research investment objective

NEW YORK, NY (April 30, 2024) – The Lung Cancer Research Foundation (LCRF) has expanded its Scientific Advisory Board (SAB) by five new members. Led by Katerina Politi, PhD, Professor of Pathology and Internal Medicine, Yale School of Medicine, the Scientific Advisory Board’s primary purpose is to review, evaluate and select lung cancer research proposals worthy of financial investment. In addition, members of the SAB provide opinion and guidance on relevant lung cancer data.

“We are honored and delighted to have these exceptional lung cancer experts join our SAB,” commented Dr. Politi. “Advancing the most promising science in lung cancer is of utmost importance to the SAB and we are thrilled to have these leaders committed to fostering lung cancer research join the Board. This expansion is an important step as we work towards meeting our current strategic objective of tripling LCRF’s research investment by the end of 2024 and meeting our future strategic priorities.”

LCRF’s newest members of its Scientific Advisory Board:

Shirish M. Gadgeel, MD
Chief of Division of Hematology and Oncology,
Associate Director, Henry Ford Cancer Institute/Henry Ford Health

Dr. Shirish Gadgeel is the Chief of Division of Hematology/Oncology at Henry Ford Health. A medical oncologist by training, his area of interest is lung cancer research in general and drug development in lung cancer, in particular. He has conducted and participated in many lung cancer-specific trials and in phase I trials, including investigator-initiated trials based on laboratory research. Dr. Gadgeel has also been a principal investigator of a Southwest Oncology Group trial, S0528, S1507 and NCI protocol 7389 and co-author on major phase III trials ALEX and Keynote 189 which changed the standard of care. He has also engaged in many epidemiologic studies in the field of lung cancer, publishing on features of lung cancer in African Americans and in young patients. He served as the co-leader of the Molecular Therapeutics Program of the Core Cancer Center Grant of Karmanos Cancer Institute before joining University of Michigan and was the site PI for the NO1 grant awarded to the California Cancer Consortium. Subsequently, he was co-leader of the Thoracic Oncology Research Program and the Mary Lou Kennedy Research Professor in Thoracic Oncology at the University of Michigan prior to joining Henry Ford Cancer. Dr. Gadgeel’s clinical research experience spans 20 years. He is a member of the steering Committee of the Lung Cancer Committee of Southwest Oncology Group (SWOG). In addition, he is a member of the Editorial Board of Clinical Lung Cancer and a reviewer for many journals including New England Journal of Medicine, Journal of Clinical Oncology, Lancet Oncology and Journal of Thoracic Oncology. He has served as faculty for the annual meeting of the American Society of Clinical Oncology (ASCO) and as a member of the Education Committee of ASCO, as well as a member of the Career Development Committee of the International Association of Study of Lung Cancer (IASLC). Dr. Gadgeel received the NCI Cancer Clinical Investigator Team Leadership Award in 2012.

Aaron Hata, MD, PhD
Assistant Professor of Medicine
Massachusetts General Hospital, Harvard Medical School

Dr. Aaron Hata is an Assistant Physician in Hematology-Oncology at Massachusetts General Hospital and Assistant Professor of Medicine at Harvard Medical School. He is Principal Investigator of a translational and basic research laboratory in the MGH Krantz Family Center for Cancer Research. Dr. Hata’s research focuses on understanding mechanisms of drug sensitivity and resistance to targeted therapies for lung cancer. His group has discovered mechanisms of clinical acquired drug resistance in EGFR, ALK, ROS1, RET and KRAS-driven lung cancers, and he has played an instrumental role in the development of novel therapeutic approaches for overcoming drug resistance. His research has also yielded important insights into how tumor cells persist and evolve during therapy. Dr. Hata received his MD and Ph.D. degrees from Vanderbilt University and completed an Internal Medicine residency at Brigham and Women’s Hospital and Medical Oncology fellowship at Dana Farber Cancer Institute and Massachusetts General Hospital. Dr. Hata is also an Associate Member of the Broad Institute of Harvard and MIT, an Investigator in the Ludwig Center of Harvard, and a member of the Dana Farber Harvard Cancer Center Lung Cancer SPORE. In 2023, he was elected to the American Society for Clinical Investigation. Dr. Hata is also a 2012 grant recipient of LCRF’s legacy organization, United Against Lung Cancer (UALC).

David MacPherson, PhD
Professor, Human Biology Division
Fred Hutchinson Cancer Center

Dr. David MacPherson’s lab applies genomic approaches and in vivo models to understand the molecular underpinnings of small cell lung cancer (SCLC).  His lab studies patient tumor samples and employs genetically engineered mouse (GEM) models as well as patient-derived xenograft (PDX) models in their interrogation of genes that drive SCLC initiation and progression.   They also employ GEM and PDX models in efforts to understand and improve responses to novel and to standard therapies, with an eye towards clinical translation. Dr. MacPherson co-leads the Fred Hutch Cancer Center Lung Program, and he co-leads a Lung Cancer NIH SPORE project focused on inhibition of the LSD1 demethylase in SCLC and translation of this therapeutic approach to the clinic. He is a member of the SWOG Lung Committee and member of the Gene Regulation in Cancer NIH Study Section. Dr. MacPherson is also an Affiliate Associate Professor in the Department of Genome Sciences at the University of Washington.  He is committed to training and teaches an introductory graduate course, MCB539, The Biology of Neoplasia.

Taofeek Owonikoko, MD, PhD
Marlene and Stewart Greenebaum Professor in Oncology & Executive Director
University of Maryland Greenebaum Comprehensive Cancer Center

Taofeek K. Owonikoko, MD, PhD, is the Marlene and Stewart Greenebaum Professor in Oncology at the University of Maryland School of Medicine and the Executive Director of the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center at the University of Maryland Medical Center. He also holds the role of Senior Associate Dean of Cancer Programs at the School of Medicine and the Associate Vice President of Cancer Programs at the University of Maryland, Baltimore. A translational physician-scientist, board-certified in Medical Oncology, Hematology, and Internal Medicine, he has a clinical focus on the management of patients with lung cancer. His research interests span the spectrum of preclinical experimental therapeutics, biomarker discovery, and translation of promising laboratory findings into lung cancer clinical trials.

He is currently an elected member of the Board of the American Society of Clinical Oncology (ASCO) and the Treasurer-Elect of ASCO. He serves as an Editorial Board Member for several highly regarded academic journals including Cancer, Journal of Thoracic Disease, and Translational Lung Cancer Research. Dr. Owonikoko is a member of the American College of Physicians, American Society for Hematology, the Society for Immunotherapy of Cancer, and the International Association for the Study of Lung Cancer. Lastly, he has been an NIH Study Section Member for the past 11 years and is a chartered member for the NIH Clinical Oncology Study section.

Dr. Owonikoko has authored/co-authored more than 250 peer-reviewed original manuscripts including reports of original research in leading journals such as the New England Journal of Medicine, Lancet, Cell, Science, Nature, JCO, Lancet Oncology, Cancer Discovery, and Cancer Cell. His work has been broadly cited with more than 50,000 citations and an h-index of 85. He has received peer-reviewed extramural grant funding in support of his research from the US National Institutes of Health, Department of Defense, private foundations, and pharmaceutical partners.

Rocio Sotillo, PhD
Professor, Faculty of Medicine, Heidelberg University
Head of the Division of Molecular Thoracic Oncology
German Cancer Research Center, DKFZ

Dr. Rocio Sotillo, a Pharmacist from the University San Pablo-CEU in Madrid, made significant contributions to cancer research during her Thesis at the Spanish National Cancer Center (CNIO) and her postdoc at Memorial Sloan Kettering Cancer Center. Her work illuminated the roles of cyclin dependent kinases and mitotic checkpoints in tumor development.

In 2010, she established her lab at the EMBL-Mouse Biology Unit in Italy, funded by the Howard Hughes Medical Institute (HHMI) and the European Research Council (ERC). In 2015, she became a full Professor at the German Cancer Research Center, focusing on understanding the mechanisms that drive lung and breast cancer development, progression, and therapy response. Her recent achievements include developing unique mouse models to induce different oncogenes in somatic lung epithelial cells in vivo using CRISPR/Cas9 that will serve as preclinical models to study the most efficient combinational therapies in lung cancer. Dr. Sotillo is a 2009 grant recipient from LCRF’s legacy organization, United Against Lung Cancer (UALC.)

# # #

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 419 research grants, totaling nearly $44 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.

Posted in Announcements, In the NewsTagged ,

By Joanne Gaget
April 2024

So how did I get lung cancer? Well, if you’re a lung cancer patient like me, I’m certain that this all too common question has played over and over in your mind as well; much like an endless repeat of a badly broken record (and yes, in light of today’s technology I am unabashedly dating myself here)! Walking back through the last six decades of my life, I reflected on the remarkable strength of my respiratory system and the fact that I never had a cough…except when I contracted the first variant of Covid in 2020. Oh and yes, there was that one time I had bronchitis due to an issue with mold. Moreover, I had always taken excellent care of my general health, staying fit and eating an exceptionally well, pesco-pollo vegetarian diet, in addition to long-held restrictions on processed, fast foods and sugar. So what gives?

Following my diagnosis, I came to understand that in general there is an assumption of guilt and shame that accompanies a diagnosis of lung cancer, especially for smokers and former smokers. But what about the never smokers? Why are they unceremoniously lumped into this mark of disgrace? Having dwelled in this self-sabotaging space as a former smoker, I too have put myself through these paces, questioning everything in a fruitless plight to identify exactly where I went wrong. I thought….

  • Maybe it was my exposure to second hand smoke when I was a child in the 60s and 70s? Both of my parents were heavy smokers, delighting in their habit everywhere, in the car, in the house, in restaurants, everywhere! But neither of my parents developed lung cancer, nor any other form of cancer for that matter.
  • Maybe it was because I smoked in my party girl days of late teens and early 20s? I smoked with my girl friends in the high school restroom stalls, then moved onto the smoky discotheques of the late 70s and early 80s, smoking happily without abandon. After quitting cold turkey at the age of 27, I was guilty of the occasional social cigarette at infrequent French soirees where smoking is still considered common place. So maybe it was the exposure to first and second hand smoke from many moons ago?
  • But maybe it was the toxic landfill that I lived nearby in my 30s. On one sultry summer night in late August 1995, the local landfill erupted with fires from within its belly, breaking the surface and spewing forth toxic plumes of heavy smoke so thick I couldn’t see the neighbor’s house across the street. It was an unmitigated environmental disaster that also contaminated the soil and aquifer. Ever present in the air was a pungent odor from the hydrogen sulfide that mixed together with other odorless chemicals released in a toxic stew that caused chronic illnesses for so many of the residents within a five mile radius. Depending on which way the wind was blowing, my home was pummeled by these toxic plumes for over a year. But still, I never coughed. I was absolutely convinced I had lungs made of steel, which is why I took up the fight to close this landfill, once and for all. But that’s another story for another time!
  • I went on to question…maybe it was the radon in the basement of another former home in Connecticut?
  • Maybe it was the black soot that mysteriously clung to the surfaces of our apartment in a Manhattan pre-war, walk-up? Or maybe it was the billowing exhaust from idling automobiles and buses just outside the large open windows of our second floor Haussmann style apartment in Lyon, France?
  • Maybe it came about from all the cortisol that coursed through my body from chronic stress that I wasn’t always successful in managing as a Type A personality?
  • Maybe it’s all of the above. Or perhaps maybe…it’s just random occurrence.

My lung cancer journey began back in February 2021, by happenstance. I didn’t have any of the classic symptoms, other than I didn’t feel well and I was unusually tired. I reluctantly caved to a trip to the local emergency room for what appeared to be an abdominal hernia or aneurysm. The physician ordered an angio CT scan that revealed a lung mass in the upper lobe of my right lung, which lucky for me was not accompanied by a suspected aortic aneurysm. After many consultations and further testing, it was agreed that the first phase of my cancer treatment plan was to remove the upper right lobe using robotic assisted surgery.

Understanding the diagnosis

In determining staging, it is now customary to send the tumor specimen for additional testing of genetic mutations, as lung cancer can be managed for many patients with targeted therapy or immunotherapy, in addition to traditional chemotherapy and radiation. If you happen to come up positive as I did, it was said that this finding was like winning the lottery…although I must admit that I didn’t quite feel the sort of exuberance one might expect. However, I did feel that a bit of my Irish luck had come back my way, in the sense that I would be given yet another weapon in my arsenal. In reading and re-reading the pathology reports through a broad range of emotions, I came to better understand my diagnosis of non-small cell lung cancer, subtype adenocarcinoma with a positive EGFR (epidermal growth factor receptor) exon deletion 19 mutation. Patients, in particular females with this type of lung cancer, tend to have minimal or no smoking history and currently represents about 10-15% of lung cancers in the United States (although interesting is this subtype is significantly more prevalent in the Asian populations).

Since my cancer had spread to a lymph node and invaded the visceral pleura, my second phase of treatment was chemotherapy (4 rounds of Cisplatin/Carboplatin and Alimta), followed by the third phase of targeted therapy with the medication Tagrisso, a tablet taken daily for up to 3 years. I dove head first into reading and understanding all that I could get my hands on about my disease, which included all published works on many other genetic mutations and respective treatments related to lung cancer. What I learned more importantly is that lung cancer is the leading cancer killer of both men and women in the United States, causing more deaths each year than colon, breast and prostate cancers combined. Yet awareness of this fact is low, and lung cancer does not have nearly the resources, support and public empathy that many other diseases have. This is likely due in large part to the strong, pervasive stigma associated with lung cancer.

Moving beyond blame

Given all of my efforts in retracing time, place, behaviors and events, I now know that I will never come to understand precisely whether my cancer was the result of one cause or a combination of factors, including the genetic mutation. With that conclusion, I chose not to waste precious time beating myself up over my past personal choices or environmental circumstances that were beyond my control. In keeping with self-care, I chose to focus my energies on the big business of living in peace and gratitude with the finest human being I’ve ever known…my extraordinary husband Bruno, along with my strong faith in God, who mercifully guides my every step. In feeling enormously blessed by the love, support and connection to family, friends, healthcare providers, the staff at Ann’s Place and to those who travel alongside me or similarly, I remain committed to being a voice, no matter how small, in creating awareness wherever and whenever an opportunity arises. Like so many, I too once harbored ill-informed perceptions about the causations of lung cancer. But today, with the recent advances in treatment, this widespread cancer is not an immediate death sentence, nor should it be perceived as a well deserved punishment for every lung cancer patient in equal measure. Through compassion and education we can all do our part to banish the stigma against those most in need of our sincerest empathy regardless of smoking status, thus leaving painful and wrongful judgments forever a notion of the past.

At the Aqueduct in Avon, France (photos by Bruno Gaget)
Posted in Journeys, PeopleTagged , ,

Patients, caregivers, and others interested in lung cancer research gathered at The RiverMarket Kitchen and Bar in Tarrytown, NY on April 13 to hear about the latest developments and important topics in lung cancer. LCRF Together New York offered an opportunity for the community to connect while learning about promising therapies for treatment.

Brendon Stiles, MD, and Balazs Halmos, MD, MS, from Montefiore Einstein Comprehensive Cancer Center had a lively discussion with the group and moderator Isabel Preeshagul, DO, MBS, Memorial Sloan Kettering Cancer Center. Dr. Stiles is the Vice Chair of LCRF’s Board of Directors and Scientific Advisory Board, Dr. Preeshagul is the Chair of LCRF’s Education & Engagement Committee, and Dr. Halmos is a previously funded LCRF researcher.

The panel began with an important discussion around lung cancer screening – why it’s so essential to be screened if you are eligible, and their strategies for increasing awareness and screening rates in their own practices. Early-stage lung cancer was the subject of some especially compelling conversation, particularly around recent studies that provide practice-changing guidance around how we treat early-stage disease using neoadjuvant therapy. 

The speakers also touched upon the role of next generation sequencing (NGS) testing in the early-stage setting and how that can impact care. With the approval of adjuvant osimertinib based on the ADAURA data and new ALINA data published in the New England Journal of Medicine (NEJM) for those harboring ALK fusions, the importance of NGS testing regardless of staging is becoming increasingly imperative. The event closed out with updates on targeted therapies and antibody drug conjugates, and excitement around what’s coming down the pipeline for small cell lung cancer. As always, those gathered had many insightful questions, which also provided an opening for getting to know others in the lung community. 

Dr. Stiles shared his excitement around the incredible progress in lung cancer treatment during the last decade, highlighting the critical role that LCRF and the research we have funded over the years has contributed to these significant advancements and improved outcomes for patients.

“Gatherings like this one are so essential for the lung community because not only are we are able to learn from experts in the space but more importantly hear from patients, caregivers and advocates the true needs and areas where we can be most impactful.”, said Dr. Preeshagul.

Be on the lookout for other events happening near you, as well as our #TogetherSeparately livestream talks.

Drs. Halmos, Stiles & Preeshagul

Special thanks to our sponsors:

Bristol Myers-Squibb | Genentech, a member of the Roche Group

Posted in LCRF TogetherTagged ,