Cachexia (pronounced “ka-kex-e-ia”) is an unfamiliar term for most patients and caregivers, but it’s a side effect most late-stage patients fighting colorectal cancer experience. It can cause you to lose your appetite, leading to weight loss, muscles loss, and decreased quality of life as well as increased toxicity from treatments and overall poor survival. Cachexia can happen in multiple disease types, but it is most often associated with cancer.

There are three phases of cachexia: precachexia, cachexia, and refractory cachexia.

Cachexia is a difficult diagnosis to pin down, but it is important to recognize that weight loss and muscle loss are early symptoms associated with the syndrome, so it is necessary to watch your weight throughout your treatment.

It is believed that cachexia itself is actually caused by the cancer, and not by the therapies used to treat it. In fact, if you can control cancer with therapy, it is possible to actually gain weight during treatment.

Cachexia includes loss of appetite, fatigue, and muscle weakness, especially in the proximal muscles (proximal muscles are those that are closest to the “core” of the body).

These muscle groups are located in the shoulders (commonly called the “shampoo” muscles) and the muscles that you use to get up from sitting in a chair (sometimes called the “toilet” muscles).

Weakness in these muscle groups are considered classic signs of cachexia. There are specific diagnostic criteria used to diagnose cachexia, but some physicians find focusing on the patient’s experience can be useful in making a diagnosis.

When diagnosed with cachexia, multiple experts should be included in your care moving forward, including a registered dietician. Nurses, social workers, and psychologists may be useful when it comes to talking about challenges you are facing with getting adequate nutrition through your food. It is important to include caregivers in these conversations as well, as everyone needs to understand what is happening to the patient’s body.

A palliative care team can also be useful. Palliative care can help address uncontrolled symptoms that may impact a patient’s desire to eat, such as nausea, vomiting, pain, and constipation. Physical and occupational therapists are also a critical part of the care team as they can help teach you how to move safely despite weakness and muscle loss.

The only way to “cure” cachexia and stop the symptoms of the syndrome is to cure the underlying cancer itself. Consider pain as an example – if cancer is causing you pain directly, the pain can be treated with medication but the underlying cause of the pain – the cancer itself – needs to be cured before the pain will cease.

Unfortunately for cancer cachexia, treating the symptoms of cachexia is difficult, and many medications used to treat cancer may not help the symptoms of cachexia.

Exercise has, however, shown promise in treating cancer related fatigue. Low-to-moderate exercise is incredibly important but is unfortunately often the last thing a patient wants to do.

Rethink what it means to exercise – you don’t need to go to the gym and bench-press weights for an hour. Getting up and walking around the house a few times or trying some light resistance exercises can be beneficial and help decrease your fatigue and hopefully increase your appetite.

If you think you are experiencing cachexia, it is important that you bring up your concerns with your physician.

Cachexia is unfortunately common, especially in late-stage (III and IV) patients. Studies show that anywhere from 30%-80% of cancer patients experience cachexia – this huge spread is an indication that not only is cachexia difficult to diagnose, but it is also difficult to define.

Cachexia is underdiagnosed, and physicians are sometimes not familiar with the syndrome. Talk to your care team about how you are feeling, your concerns, and start a discussion about managing the symptoms you’re experiencing.