Fatigue is more than just being tired or needing a nap. According to the American Society of Clinical Oncology (ASCO), fatigue is “a feeling of physical, emotional, and mental exhaustion even after getting enough rest and sleep.” People living with desmoid tumors can experience fatigue from their disease or treatments.

In this article, we’ll explore what fatigue is and why you may experience it with a desmoid tumor. We’ll also cover four ways to manage your symptoms to improve your quality of life. If your fatigue has started interfering with your daily life, talk to your doctor or cancer specialist who treats soft tissue sarcomas. They can offer other strategies or prescribe medications to help.

How Do Desmoid Tumors Cause Fatigue?

Desmoid tumors are noncancerous growths that form in the body’s connective tissues. You may see them called “aggressive fibromatosis,” as some tumors can grow quickly. While desmoid tumors aren’t cancerous, they can cause similar side effects — including fatigue.

Desmoid tumors need oxygen and nutrients to grow and spread. When they use these resources, less are left for the rest of your body. Some tumors can also begin pressing on or growing around vital organs. You may notice a drop in your energy levels if your blood vessels, kidneys, intestines, or lungs are affected.

All medications come with side effects, and many desmoid tumor treatment options are known to cause fatigue. One of the most common side effects of chemotherapy is fatigue. Examples of chemotherapy used to treat desmoid tumors include:

• Doxorubicin
• Methotrexate
• Vinblastine
• Vinorelbine

Targeted therapies work by targeting (or “blocking”) proteins found in desmoid tumor cells. While these medications typically have different side effects than chemotherapy, many still cause fatigue. For example, clinical trial data showed that the gamma secretase inhibitor nirogacestat (Ogsiveo) causes fatigue.

Other studies over the years have found that fatigue is a common side effect of tyrosine kinase inhibitors (TKIs). Examples include:

• Imatinib (Gleevec)
• Pazopanib (Votrient)
• Sorafenib (Nexavar)
• Sunitinib (Sutent)

Read more about specific medications in this list of treatments for desmoid tumors.

Tips for Managing Fatigue With Desmoid Tumors

Are you looking for ways to manage your fatigue, but you’re unsure where to start? Here are four tips to try.

1. Ask for Help From Others

If you’re having a hard time finding energy to complete tasks yourself, ask others for help. You can start by making a list of activities you need the most help with. Maybe you haven’t felt well enough to get to the grocery store or pick up your medication. It can even be as simple as getting help with dusting or folding laundry. Remember, no task is too small to ask for help.

Once you have your list, start reaching out to family and friends. Give them the list and ask which activities they’d feel comfortable helping with. Taking even one item off your list will help you in the long run. It’s important to remember that your family and friends likely haven’t experienced the kind of fatigue that comes with desmoid tumors. Be open and honest about your symptoms and fatigue.

2. Spend Your Energy Wisely

Every morning, you wake up with a certain amount of energy. You can think of your energy levels like a bank account. Some days you start with a balance of $10, while other days it can feel more like $5. Performing different activities “costs” a certain amount of money or energy from your bank account.

Balancing your energy levels is a lot like balancing a budget. For example, dusting your house may cost $2, while getting groceries or running errands costs $6. On days when your bank account is running low, choose low-cost activities. You’ll stop yourself from spending too much energy on activities you don’t have the capacity for.

Your energy levels also rise and fall throughout the day at different times. Think of when you’re more energized — are you an early bird or a night owl? Try to plan your day and activities around when you’re most productive. You can also keep a diary of your energy levels to track patterns and see what activities exhaust you the most.

3. Increase Your Physical Activity

It may seem counterproductive, but research shows that getting regular exercise can help fight fatigue. Depending on where your desmoid tumors are located, you may be experiencing pain or mobility issues. Ask your doctor to refer you to a physical therapist or exercise specialist. They’ll develop an exercise plan or suggest activities appropriate for your abilities.

Exercise also means more than hitting the gym — any type of movement can help treat your fatigue. Try low-impact activities like walking around your neighborhood, swimming, or yoga at home. These activities are great for those with chronic pain, as they put less strain on the bones and joints.

4. Manage Desmoid Tumor Pain

Desmoid tumors grow in the soft tissues that surround your body’s structures and organs. Tumors that begin to spread and wrap around organs can cause significant pain. Many people also have trouble moving their arms or legs, which can significantly impact quality of life. Chronic (long-term) pain can sap your energy, especially if it limits your mobility.

Talk to your doctor about ways to treat your desmoid tumor pain. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, can help treat pain and swelling associated with tumors.

Talk With Others Who Understand

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.

Have you experienced fatigue while living with a desmoid tumor? What strategies helped you conserve energy? Share your experiences and tips in the comments below, or start a conversation by posting on your Activities page.