This article is intended to be used for informational purposes and not to be taken as medical advice. The piece was reviewed for accuracy by Dr. Richard Dunne, MD, medical oncologist and Assistant Professor in the Department of Medicine at the University of Rochester.
Cancer cachexia, also known as wasting syndrome or anorexia-cachexia, is estimated to affect 50% of lung cancer patients. Despite being common, most patients don’t know what it is or even if they have it.
According to the Cancer Cachexia Society, cachexia is metabolic disorder that causes involuntary weight loss from a combination of factors, including the loss of appetite, muscle wasting, a decrease in body fat, and an increase in metabolism. Cachexia is not healthy weight loss; it’s weight loss from depletion of major tissues, such as skeletal muscle and adipose tissue. Cancer’s effect on immune system cells and inflammation in the body play a key role in cachexia, but additional research is needed to better understand the disease and cure it.
We sat down with Teresa Zimmers, PhD, HH Gregg Professor of Cancer Research and Professor of Surgery at the Indiana University School of Medicine and incoming president of the Cancer Cachexia Society, to learn more about cachexia and ongoing research on how to prevent and treat it.
What are some signs and symptoms you might have cachexia?
Unexplained weight loss is a big sign something is wrong. If you are eating as much as you normally would and still losing weight, that’s a sign that your body is actually breaking down fat, muscle, and - in some cases - bone, which is a result of the cachexia.
Patients with cancer who are overweight or obese are still susceptible to cachexia and the associated low muscle mass and weight loss, even if they might not look emaciated. The general rule of thumb is if you lose more than 5% of your body weight in six months (without trying), that would be classified as cachexia.
Other signs include loss of appetite, weakness, and fatigue.
Are there ways to combat cachexia?
There are currently no approved treatments for cachexia. However, based on research, there are a few strategies that might help slow the progression of the disease.
It’s important to maintain good nutrition to combat cachexia, so seeking a consultation with a registered dietician with expertise in cancer patients may be helpful. Dieticians can make recommendations to ensure you are getting the proper balance of nutrients, including protein, or provide guidance on nutritional supplements or a nutrition plan. Your physician might prescribe medications to increase appetite or address other issues that affect food intake and digestion.
Staying active is also valuable. This might be a tall order for someone with cancer, but exercise, which can be walking or even light stretching, has been shown to be safe in patients with cancer and could help reduce symptoms associated with cancer and its treatment, including cachexia.
Can cachexia affect the efficacy of your treatment?
Cachexia can increase the side effects from some cancer treatments so recognizing the signs and symptoms and discussing cachexia with your oncologist is important. Additionally, cancer treatments including surgery, radiotherapy, chemotherapy, and immunotherapy are not as effective when a patient has cachexia. There is ongoing research trying to understand why this is.
Does cachexia cause any other problems?
Cachexia can be emotionally difficult. A patient may realize they need to eat, but because they’re nauseous or the food doesn’t taste or smell good, they refuse. This can cause conflict among family members; it can be hard for a caregiver, friend or family member to see a loved one refusing nourishment, and it can cause guilt for all parties involved.
However, many find it’s helpful to understand why it’s happening: the cancer and its treatment can affect signals in the brain to inhibit the appetite and distort the sensations of taste and smell. Sometimes, just understanding this is no one’s fault but rather an effect of the cancer can take away the guilt, lessen anxiety and help the patient and their loved ones be on the same team.
Should you see a doctor if you think you have cachexia?
While there is currently no standard treatment or cure for cachexia, it is absolutely worth seeing a healthcare provider if you think you are experiencing cachexia. Doctors may prescribe medications that can help one or a couple of different aspects (for example appetite, nausea or depression) of this multifactorial problem. Additionally, there are treatments currently in clinical trials in lung cancer in the US that help improve appetite and reduce nausea, which could help with cachexia.
Start with your oncologist. Explain your symptoms and concerns. They will have good information and interventions for you or will be able to connect you to others who are well equipped to help, such as a dietician, nutritionist, palliative care doctor, or physical therapist. Some clinics, at university hospitals, even have specialized cachexia clinics, though this is rare.
What are some resources to learn more about cachexia?
The Cancer Cachexia Society has both patient and provider-level information available.
The Cancer Cachexia Society also hosts a private Facebook group, which is led by patients and caregivers. The group is a supportive community where those affected by cancer and cachexia can connect and discuss their shared experiences. You can join the group here.
The Cancer Cachexia Society is also hosting our biannual conference this August 27-29. While the meeting has historically been focused on science and largely attended by researchers, this year we are hosting a patients and caregivers session led by five clinical experts. You can learn more and register on the Cancer Cachexia Society website.
What is the future of cachexia?
We have every reason to be optimistic about the future of cachexia. There has been exponential growth in the last few years in cancer cachexia research. Cachexia has been prioritized by funding agencies, such as the National Cancer Institute (which specifically named it one of their key questions and challenges to address).
This prioritization has brought more researchers, grants, and publications to the space. I have been studying cachexia for 30 years and can say with certainty that this the best time for awareness, funding, engagement, rate of new discovery, and clinical trials that our field has ever seen.
New findings and better understanding of lung cancer have been fast and furious over the last few years; I hope the same is true for cachexia now that it has more attention and funding.
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Teresa Zimmers, Ph. D. is the HH Gregg Professor of Cancer Research and Professor of Surgery at the Indiana University School of Medicine. She directs the Cachexia Working Group and co-directs the Pancreatic Cancer Working Group and is co-leader of the Tumor Microenvironment and Metastasis Program of the IU Simon Comprehensive Cancer Center. She also co-leads the Cancer Research Team of the Indiana Center for Musculoskeletal Health. Her research centers on the systemic effects of cancer, particularly secreted protein mediators, and for several years she has focused on pre-clinical and translational studies in pancreatic cancer. She served on the Scientific Conference Committee for the 2nd Cancer Cachexia Conference in 2014 and was a co-organizer for the 3rd, 4th, 5th and 6th Cancer Cachexia Conferences in 2016, 2018, 2020, and 2021. Dr. Zimmers is the incoming President of the Cancer Cachexia Society, dedicated to eradicating cancer cachexia through advancing understanding, treatment, and education.