Facing Unintended Appetite and Weight Loss During Colorectal Cancer?

Cachexia is a term to describe a complex, life-threatening metabolic condition that can cause unintentional weight loss, loss of appetite, muscle wasting, and fatigue. It is often experienced along with certain chronic illnesses, such as colorectal cancer (CRC) —and can make this condition even more difficult to treat.

Cachexia is very complicated, so we’re breaking it down. Lee Jones, a Fight CRC research advocate and stage IV colon cancer survivor who has experienced cachexia himself (losing 18% of his body weight during treatment), interviewed Dr. Eric Roeland, Assistant Professor of Medicine at Oregon Health and Science University Knight Cancer Institute, to better understand cachexia and how patients can identify and manage this condition.

1) What is Cachexia?

Most patients and caregivers have never heard the term cachexia. The first thing is to recognize what it is and is not. It is not starvation. Cachexia is a syndrome in which your metabolism is increased. You lose your appetite, leading to loss of weight, muscle, and quality of life, as well as increased toxicity and poor survival. Cachexia describes a phenomenon in multiple disease types, but we often talk about it most frequently in cancer. Most people think of severely emaciated patients as cachectic, but we’ve recognized that there are three phases of cachexia: pre-cachexia, cachexia, and refractory cachexia.

2) What is the difference between the three types of cancer cachexia?

• Precachexia: weight loss of less than 5 percent, along with other symptoms, such as impaired glucose tolerance or anorexia
• Cachexia: Weight loss greater than 5 percent or other symptoms and conditions consistent with the diagnostic criteria for cachexia
• Refractory cachexia: no longer responsive to cancer treatment, have a low-performance score and a life expectancy of less than 3 months

3) What causes cachexia? Does cancer itself cause it? Or is it caused by the treatment I’m on?

We think the underlying cancer itself causes cachexia. If you can control cancer with therapy, people can actually gain weight. That’s why we call some chemotherapy palliative chemotherapy, because its use can improve symptoms. It’s essential to recognize that cachexia impacts multiple things, and one of them is weight. Historically, we’ve defined weight loss over a certain amount of time to describe cachexia. However, we’re learning over time that this definition probably doesn’t capture the true experience of cancer cachexia. We’re advocating to change that definition, so patients recognize that a loss of appetite and loss of muscle are early signs of the syndrome that need to be addressed.

4) How many colorectal cancer patients experience cachexia?

I would say all of my patients with advanced illness, meaning stage III or stage IV, already have cancer cachexia. It’s a huge issue. I think we often attribute their experience to cancer and its treatment, but if you sit down and talk to patients, they’ll use all sorts of words to describe not wanting to eat. Those are all signals that we need to assess. If you look at the actual numbers and studies, there’s this huge range from 30% to 80% of patients who experience cachexia. This is because cachexia is still so poorly defined.

5) How do you explain cachexia to your patients/caregivers? How do you communicate what they’re experiencing and how you would treat it?

Cachexia includes loss of appetite, fatigue, and weakness – this is something that we see especially in the proximal muscles. These are muscles in the shoulders- what I like to call the “shampoo muscles,” as well as the muscles you use to get up from sitting in a chair, or what I like to call “toilet muscles.” These are some of the classic signs. Again, the challenge with defining the syndrome is that historically it has been defined in so many different ways, even amongst researchers and regulators. I choose to focus on the patient experience and say these symptoms are related to the cachexia syndrome.

Multiple experts need to be involved early on in your care, including a registered dietitian. We like to have nurses, social workers, or psychologists talk to you and your caregiver about food challenges. I like to talk to both the patients and their caregivers because everyone needs to understand what’s going on with the patient’s body. Caregivers will often feel like they’re not doing a good job because their loved one is not eating and patients feel bad because they’re not eating, so it’s important to normalize this experience and have strategies ready to go. The palliative care team is critical because if you have any symptoms that are not controlled, such as pain, constipation, nausea, or vomiting, you’re not going to eat. Physical therapists and occupational therapists are a vital part of the team as well because they can help teach you how to continue to move safely. Making sure that all your symptoms are well-controlled is incredibly important.

6) Can you reverse cachexia?

The only way you can stop the syndrome itself is by stopping your cancer. A good example of this is to take a step back and think of pain. When patients have pain from their cancer, the cause of that pain is the cancer itself. Treating cancer makes the pain better, but at the same time, we also have tools to treat pain. My goal is that we recognize that you can do both simultaneously. You can treat the underlying cause, and you can treat the symptoms. And so that has been a challenge in cancer cachexia because we don’t have great tools to treat cancer cachexia, and many medications we use as clinicians actually may not help.

7) How does exercise impact the condition?

Exercise is, in fact, the only thing that has worked for cancer-related fatigue. Low to moderate-intensity exercise is incredibly important, and that’s exactly what people don’t want to do when they feel crappy. So, I encourage people to rethink what it means to exercise. Many people think they’ve got to go to the gym and spend an hour exercising, but it could be walking around the house a couple times or performing some light resistance exercise. But yes, you need to get up and move to remain less fatigued, which sounds horrible for so many people who are not feeling great.

8) What resources exist for colorectal cancer patients who are facing cachexia?

There’s very little data or tools out there that are patient-facing. Patients need to be empowered, and honestly, if you approach your doctor and don’t look emaciated and say, “I think I have cachexia,” I imagine a lot of doctors would say, “No you don’t,” and they’d be wrong because they are unaware of all the phases of cachexia. Patient-facing materials are a huge need. I’m trying to work with several patient advocacy groups to create patient-facing materials, but we also need to match these advocacy groups with leading national organizations and accredited agencies. We need readily available online resources. And I think for the smaller cancer centers or community centers, it’s nice to have access to registered dietitians and there are many available via online platforms.

Some of the resources that currently exist include:

1. Fight CRC Cachexia webinar.
2. Cancer Cachexia Clinical Trial Conversations blog.
3. The American Society of Clinical Oncology which recently published the first cancer cachexia management guidelines. You can find more information at cancer.net and here.
4. The American Society of Parenteral and Enteral Nutrition (ASPEN) guidelines (https://aspenjournals.onlinelibrary.wiley.com/doi/full/10.1177/0148607109341804)
5. Palliative care: Use getpalliativecare.org to identify palliative care expertise
6. Find psychological support at psychologytoday.com

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