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LUNGevity Foundation stands at the forefront of lung cancer research and advocacy, driven by a mission to improve outcomes for patients through research, education, and partnerships. By tackling unmet needs of the lung cancer community, LUNGevity is transforming the landscape of lung cancer treatment and patient care. As the nation’s leading lung cancer nonprofit and largest funder of lung cancer research, LUNGevity has been working to improve our understanding and treatment of cachexia.
Earlier this year, LUNGevity participated in the Cancer Grand Challenges Summit in Boston on March 4-7, 2025. The team discussed two clinical trials (UNCOVER and LOTUS-CC), which are enrolling patients with lung, colorectal, and pancreatic cancers in an effort to identify the earliest signs of cachexia as a way of intervening and improving outcomes.
When LUNGevity first began our cachexia work, over a decade ago, little was understood about the underlying causes of this wasting disease. But today, thanks to research and patient advocacy, we know more.
The Critical Study of Cachexia in Lung Cancer
Cancer cachexia is a wasting syndrome characterized by weight loss, loss of appetite (anorexia), physical weakness, lack of energy, and anemia. Cachexia is a destructive metabolic syndrome that taps into other sources of energy, namely skeletal muscle and adipose tissue, when the body senses a lack of nutrition. It adversely affects patients’ ability to fight infection and withstand treatment. As a result, the body begins to waste away.
It is estimated that almost one-third of cancer deaths can be attributed to cachexia. Cachexia occurs in many cancers, usually at the advanced stages of disease. It is most commonly seen in patients with pancreatic and gastric cancer, but it also occurs in patients with lung, esophageal, colorectal, and head and neck cancer.
Despite cachexia's role in cancer patient death and data suggesting that it hinders treatment efforts, there are few options for treatment of cachexia. Typically, oncologists focus on palliation of the symptoms of cachexia and the reduction of distress in patients and families rather than on cure. Standard methods of treatment, such as increases in nutritional uptake, do not reverse loss of appetite and weight loss.
Giving Patients a Voice
Approximately ten years ago, treatment approaches targeting the ghrelin axis had been shown to be successful in clinical trials. However, the willingness of people with lung cancer to adopt such treatment strategies was unclear. LUNGevity conducted critical studies to understand patient preferences about treatment approaches to cachexia that continue to help guide research efforts.
In 2020, LUNGevity convened an Unmet Needs Workshop with 75 stakeholders across the cancer community to review the current science of cachexia, identify key gaps in treatment and research, and create an actionable strategy to improve outcomes for people with cancer.
The following three recommendations emerged from this patient-centered meeting and were presented in a peer-reviewed publication to mobilize the cancer community around people living with cachexia.
- Increase cachexia awareness and education for clinicians, patients, and caregivers
- Build a portfolio of robust scientific evidence to increase insurance coverage for medical, nutritional, and physical therapy support for people with cancer
- Improve our knowledge base about effective treatments for cachexia through optimized clinical trials
Partner of Choice
LUNGevity is honored to be a patient advocate for the global fight against cachexia. In 2022, LUNGevity Foundation was selected as a US patient advocacy organization for the Cancer Grand Challenges team addressing cancer cachexia. The CANCAN (Cancer Cachexia Action Network) team, composed of 14 leading investigators from the UK and US, received $25 million to tackle this critical obstacle in cancer research. This collaboration represents the world’s first major international effort to solve cancer cachexia.
Through the Grand Cancer Challenges initiative, the CANCAN team meets annually with the world’s leading cancer experts across multiple disciplines to address the biggest unanswered questions in the cancer field.
David Scott, PhD, director of Cancer Grand Challenges, highlighted the importance of global collaboration in tackling cachexia. "Cancer is a global issue that requires diverse thinking and innovative approaches. The multidisciplinary efforts of the CANCAN team are crucial in addressing this long-standing challenge in cancer care."
Empowering Patients
LUNGevity knows that education is a critical first step to empowering patients in their cancer journey. Through our partnership with Cancer Support Community and other advocacy organizations, we are promoting and sharing an informational flier to raise awareness about cachexia in patient communities. The flier includes cachexia symptoms, underlying causes of disease, and risk factors and, most importantly, offers patients suggestions for getting the help they need.
If you have questions about cachexia, please reach out to LUNGevity at [email protected].
Additional Reading on Cachexia