What is Cancer Cachexia? Ways to Take Action

Have you heard of cachexia? Most people haven't, even though it impacts up to 80% of people living with advanced cancer, and almost 90% of people living with pancreatic cancer. Sometimes known as wasting syndrome, cancer-related cachexia is the loss of 5% or more of body weight in six months. And it isn't just weight from body fat. People with cancer cachexia lose muscle mass as well. They also typically experience fatigue, loss of appetite, taste changes and more. It impacts quality of life and can leave important treatments like surgery and chemotherapy out of reach for many people living with cancer.

Recently, representing PanCAN Patient Services as our manager of research and education communication, I joined a group of patient advocates and researchers in Cambridge, UK, for an annual symposium dedicated to cancer cachexia highlighting the important research from scientists who work every day to tackle this relatively unknown condition. The group of researchers and patient advocates working to learn more about cancer cachexia are known as Team CANCAN, part of the wider Cancer Grand Challenges Initiative funded by Cancer Research UK and the National Cancer Institute.

Here are three takeaways from the symposium, along with some steps you can take to spread awareness about cancer cachexia today:

Takeaway #1: Even though cachexia impacts almost 90% of people with pancreatic cancer, most people haven't heard about it.

Cancer cachexia is common: Almost 9 out of 10 people with pancreatic cancer will deal with it. However, unlike other conditions that impact people with advanced cancer (like depression, anxiety and organ dysfunction), cachexia remains relatively unknown. When people don't know how to describe something happening to them, it makes it harder to treat.

Because cachexia is a multi-factorial (several symptoms and possible causes all happening at once) condition, describing exactly how it presents in any one person is incredibly difficult. How do you explain to your doctor that you are losing weight without trying, feeling fatigued and tasting foods differently without it sounding confusing? While it may not be cachexia, knowing the vocabulary word might just be enough to get the conversation started with your doctor. After all, early nutritional interventions (treatments and counseling) are key to minimizing the impact of cachexia on cancer treatment plans and quality of life. There is currently no FDA approved drug to treat people with this condition.

Steps you can take now:

1. Spread awareness about cachexia far and wide. Start by sharing PanCAN's posts on your own social media.
2. Talk to your doctor if you believe you are experiencing cancer cachexia. Doctors can only help if they know what is going on. Write down any questions you have to help guide conversations.
3. Contact PanCAN Patient Services if you need help preparing for conversations with your doctor. Our Case Managers can give you helpful tips and resources so you feel ready for meaningful discussion.

Takeaway #2: Cachexia impacts caregivers and loved ones, too.

Watching a loved one lose weight and become weaker is incredibly difficult. For already stressed and strained caregivers, trying to manage changing diets and noticing physical changes in loved ones can make an already emotional job even more taxing. The language used around cancer cachexia can also feel harsh. Words like "wasting" can make hearing about these changes at appointments feel more daunting.

Steps you can take now:

1. Caregivers and loved ones should be sure to prioritize self-care. Set aside time to work on a hobby, go for a walk or get a massage. If time is limited, work with the resources around you (like the hospital social worker, friends and family from your support system) to arrange for respite care, which is dedicated time away for caregivers to take care of themselves.
2. Communicate early and often with your loved one about physical changes you might be noticing, as appropriate. Consider talk therapy or reach out to your clinical social worker to help with healthy coping and communication strategies.
3. It may be helpful to connect with other caregivers in similar situations. Consider joining a support group or talk to PanCAN about connecting with a fellow caregiver through the Survivor & Caregiver Network. This all-volunteer network includes pancreatic cancer survivors and caregivers across the country willing to talk to and support others facing this disease.

Takeaway #3: Cancer cachexia is more than just weight loss. This is a complex disease that scientists still do not fully understand.

Scientists are still working hard to understand why cachexia develops, how to treat it and how to catch it early. The research is wide ranging: Scientists are studying cancer cachexia and related biochemical processes in everything from flies and mice to actual patients in the clinic, providing important data which can lead to groundbreaking clinical trials and new therapies. There have been exciting developments recently, too. A new drug currently being studied has shown good results in clinical trials, helping people gain weight and be more active. This is a big step forward and shows why continued research funding is so important, giving a lot of hope for future treatments.

Steps you can take now:

1. Read and learn about cancer cachexia. Understanding where the science is can help you have informed conversations with healthcare providers.
2. Advocate for research funding where you live. Research and clinical trials are the only way new therapies can be discovered, approved and then made available to patients.
3. Clinical trials related to cachexia are ongoing. Talk to your doctor or contact PanCAN Patient Services to see if there are any you might be eligible for.

Even though it is so common and has such an impact on the pancreatic cancer journey, cancer cachexia is still relatively unknown and under researched. PanCAN Patient Services can share more information, in addition to pancreatic cancer specialists and dietitians near you.