Desmoid tumor treatments can leave you feeling under the weather. All medications, including chemotherapy and targeted therapies (which target specific parts of cancer cells to stop them from spreading), have side effects. You want to feel your best during your treatment, but maybe you don’t know where to start.

In this article, we’ll discuss common side effects of desmoid tumor treatment and give you six ways to manage them. Living with a disease such as a desmoid tumor can be stressful, and it’s important to take steps to keep your body healthy. Be sure to talk to your health care team about any new side effects you’re experiencing to improve your quality of life.

Side Effects of Chemotherapy

Doctors use chemotherapy to treat aggressive desmoid tumors that are near organs or are causing symptoms. Chemotherapy uses toxic chemicals to kill rapidly dividing cells — like desmoid tumor cells. Examples include vinblastine (Velban), methotrexate (Trexall), and doxorubicin.

One of the most common side effects of chemotherapy is fatigue. There are several reasons why you may not have the energy you used to during treatment, including:

• Low red blood cell levels, limiting the amount of oxygen to your tissues
• Loss of appetite, meaning you aren’t getting as much energy from food
• Lack of sleep due to pain or other medications
• Diarrhea, which can cause fluid loss and dehydration

Chemotherapy drugs are effective for shrinking tumors. However, they also slow your body’s rapidly dividing cells. You may experience hair loss, nausea, vomiting, and mouth sores. This is because chemotherapy affects your hair follicles and the cells lining your intestines and mouth.

Side Effects of Targeted Therapy

Targeted therapies work by targeting specific proteins made by desmoid tumor cells. Your doctor may prescribe one of several targeted therapies, including:

• Nirogacestat (Ogsiveo)
• Tyrosine kinase inhibitors (TKIs), like sorafenib, imatinib, and pazopanib

Nirogacestat is a newly approved treatment for desmoid tumor. It works by blocking gamma secretase — an enzyme desmoid tumor cells use. In clinical trials, researchers found that nirogacestat may cause:

• Abdominal pain
• Diarrhea
• Fatigue
• Shortness of breath
• Nausea
• Skin rash
• Headache
• Respiratory tract infections
• Fertility problems in women

TKIs block growth signals in desmoid tumor cells. They help slow desmoid tumor growth and progression. Many of these drugs are used to treat soft tissue sarcomas and thyroid, liver, and kidney cancers. The side effects you may experience depend on the type of TKI you take. Common examples include:

• Fatigue
• Diarrhea
• Nausea and vomiting
• Fluid buildup
• High blood pressure
• Muscle aches
• Skin rash

Tips for Managing Desmoid Treatment Side Effects

Here are six tips for managing your side effects from desmoid tumor treatment. Always talk to your health care team about your side effects, and never stop taking medication without medical guidance.

1. Ask Your Doctor About Anti-Nausea Medication

Many people taking chemotherapy and targeted therapies experience nausea and vomiting. You may react to the medication itself or the environment while you’re being treated. During chemotherapy treatment, “environment” means factors like where you are, how stressed you feel, and your daily habits, which can affect how your body handles the medication and the side effects you might have. Anticipatory nausea or vomiting happens when your body reacts to the sights, smells, and sounds associated with the treatment.

If you know you get sick around the time of your desmoid tumor treatment, talk to your doctor. They can prescribe an anti-nausea drug — also known as an antiemetic drug — to take at a specific time. Examples include ondansetron (Zofran), prochlorperazine (Compazine), and dexamethasone.

You may take the anti-nausea medication before, during, or after your treatment to prevent or control vomiting. Be sure to tell your doctor or cancer care nurse if your anti-nausea drug isn’t working. They can give you another option to control your symptoms.

2. Stay Hydrated and Eat a Nutritious Diet

Some treatment options can cause vomiting and diarrhea, meaning you’re losing lots of fluid. It’s important to stay as hydrated as possible to prevent dehydration. The National Cancer Institute recommends sipping on drinks throughout the day, including:

• Water
• Sports drinks with electrolytes
• Fruit juices
• Tea
• Ginger ale

You can also work with a registered dietitian to find out how many ounces of fluid you need every day. They’ll take your desmoid tumor treatment into account to help you avoid dehydration.

Your dietitian can also help you choose the best foods to stay healthy while undergoing treatment. Keep in mind that fried, spicy, or greasy foods may irritate your stomach. It’s best to avoid these foods to prevent nausea and vomiting. Instead, experts recommend focusing on a diet of:

• Foods high in calories and protein to help you maintain weight
• Plant-based proteins, like vegetables, legumes, and nuts
• Plenty of fruits and vegetables

Eating a nutritious diet can help you combat fatigue from treatment. It’s also a good idea to avoid certain food groups, depending on your treatment side effects. For example, if you’re having diarrhea, try to limit raw fruits, vegetables, and popcorn.

3. Plan Your Day Around Your Energy Levels

During treatment, you might feel fatigued. This is more than just tiredness. Fatigue is a persistent feeling of exhaustion that doesn’t seem to get better with sleep or rest. This is a common side effect of many treatments, including chemotherapy and targeted therapy.

Rather than fighting fatigue, meet your body where it is. Try to plan your day around your energy levels. If you’re most awake in the morning, that’s the best time to go to the grocery store or run errands. It also helps some people to think about their energy level like a bank account. You only have so much energy to spend in a day, so it’s best to budget it as needed.

4. Schedule Naps and Rest Throughout the Day

Do you experience a drop in energy levels in the late morning or early afternoon? Set aside some time in your day to lie down and rest. Scheduling your rest lets you enjoy your day without pushing yourself to the point of exhaustion. After you rest, you’ll have more energy to finish your other plans.

The American Society of Clinical Oncology recommends limiting naps and rest to less than an hour. This way, you can still get a full night’s sleep.

5. Wear a Scalp Cooling Cap During Chemotherapy

Hair loss is a common side effect of chemotherapy. Although there’s no way to completely stop hair loss, there are ways to help prevent it. Some people wear a scalp cooling cap during their chemotherapy treatment. The cold temperatures slow blood flow to your scalp, limiting exposure to the chemotherapy drug.

You can also change your hairstyle throughout treatment to feel more confident. Cutting your hair can help it look and feel fuller. You may also consider shaving it to prevent scalp itching and irritation as you lose hair.

6. Keep Your Skin Clean and Moisturized To Prevent Rashes

Sometimes, desmoid tumor treatments cause skin rashes that may be itchy or painful. These rashes typically form on the chest, upper back, neck, face, and scalp. You may notice a new rash within a few weeks of starting chemotherapy or a targeted therapy drug.

To help treat skin irritation, the American Cancer Society recommends:

• Keeping your skin clean with warm water and a gentle soap
• Moisturizing your skin often
• Avoiding sunlight to prevent triggering your rash
• Wearing loose-fitting clothing made with soft fabrics to avoid scratching your skin

The Importance of Tracking Your Side Effects

Throughout your desmoid tumor treatment, keep track of your side effects. Let your doctor know how you’re doing at your follow-up appointments, and bring up any new side effects.

Tell your care team about any new or worsening symptoms. It might not always be clear if what you’re experiencing is a medication side effect or a new symptom related to your tumor. Your doctor can determine if something you report could be a sign that your disease is progressing.

If your doctor thinks your desmoid tumors are still growing with treatment, they’ll run additional tests to check. You may need to change your treatment plan to slow the tumor growth. Your doctor can walk you through this process.

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.

What side effects have you had during medical treatment? What tips do you have for other members? Share your experiences and tips in the comments below, or start a conversation by posting on your Activities page.