What is Cachexia?

Many people living with cancer have concerns about the weight loss (or possibly even weight gain) that they experience. Sometimes, weight loss can be significant due to a syndrome called “cachexia,” which is defined as “loss of body weight and muscle mass, and weakness that may occur in patients with cancer, AIDS, or other chronic diseases.”¹

What is cachexia?

According to a LUNGevity blog post, cachexia is estimated to impact about 50% of patients with lung cancer. However, many patients are unfamiliar with the term and are not aware that they might be dealing with cachexia. Basically, cachexia is different from any planned weight loss that might result from significant changes to your diet or increased exercise routines.²

Instead, cachexia weight loss is unplanned. According to the Cancer Cachexia Society, “cachexia causes involuntary weight loss from a combination of factors including the loss of appetite (or anorexia), muscle wasting, a decrease in body fat, and an increase in metabolism. Muscle wasting is the characteristic symptom of cachexia and can lead to decreased strength and increased fatigue.”³ The Cancer Cachexia Society is working to bring awareness to cachexia in order to accelerate research. Their website contains educational resources for both health care providers and patients.

If you experience unplanned loss of 5% or more of your body weight over a 6 month period, you might be dealing with cachexia. One of the most eye-opening things I learned while researching cachexia is that you don’t need to be super thin and look like you are wasting away to be diagnosed as having cachexia. This syndrome can occur even if you are overweight; while you might not be losing fat mass, you can still be losing necessary muscle mass. Of course, cachexia is usually more dangerous in people who start off at below average weight.²

Resources for those with cachexia

Why is it important to know if you have cachexia? Cachexia can impact the effectiveness of some of your lung cancer treatments and/or increase the side effects you experience. Don’t wait until you have lost up to 5% of more of your weight to seek help. If you are losing weight, having trouble eating, and feel weak, you could be in a “pre-cachexia” stage and benefit from early intervention. If you talk to your oncologist, he or she might be able to prescribe medications or refer you to a palliative doctor or a dietician who can help you manage your symptoms. There are even some clinical trials for cachexia that you might be able to access. There is no need to suffer in silence and just feel that nothing can be done.

While not everything is known yet about the causes of cachexia and the best management, lots of research is currently taking place. In 2020, the Cancer Grand Challenges initiative was launched by the National Cancer Institute (NCI) and Cancer Research UK in order to fund research into particularly challenging topics in cancer. In 2022, Cancer Grand Challenges awarded $25 million to a multidisciplinary group of investigators in the U.S. and U.K. to tackle the challenge of cancer cachexia. LUNGevity Foundation was chosen to be part of the Cancer Cachexia Action (CANCAN) team.

To learn more, you can read a press release from Lungevity.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.