Desmoid tumor treatments can leave you feeling under the weather. All treatments, including chemotherapy and targeted therapies, 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 seven ways to manage them. Living with a desmoid tumor can be stressful, and it’s important to take steps to keep your body healthy. Be sure to talk to your healthcare team about any new side effects you’re experiencing.

Side Effects of Chemotherapy

Chemotherapy is sometimes used to treat desmoid tumors. Chemotherapy uses drugs to kill tumor cells or keep them from growing and dividing. Regimens that may be used include doxorubicin-based therapy, doxorubicin with dacarbazine, liposomal doxorubicin, and methotrexate with a vinca alkaloid such as vinblastine or vinorelbine.

One of the most common side effects of chemotherapy is fatigue (extreme tiredness that doesn’t improve with rest). There are several reasons why you may not have the energy you used to during treatment, including:

• Anemia (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 (Nexavar), imatinib (Gleevec), and pazopanib (Votrient)

Nirogacestat is approved by the U.S. Food and Drug Administration (FDA) for adults with progressing desmoid tumors who require systemic treatment (treatment that targets the entire body). Other targeted therapies for desmoid tumor are used off-label.

Nirogacestat is a gamma-secretase inhibitor. It works by blocking a pathway involved in tumor growth. In clinical trials, researchers found that nirogacestat may cause:

• Abdominal pain
• Diarrhea
• Fatigue
• Shortness of breath
• Nausea
• Skin rash
• Headache
• Upper respiratory tract infections
• Low phosphorus levels in the blood
• Ovarian toxicity in females of reproductive potential, according to the drug’s prescribing label

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 types of 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
• Mouth sores
• Loss of appetite
• Dry or itchy skin

Tips for Managing Desmoid Treatment Side Effects

Here are seven tips for managing your side effects from desmoid tumor treatment. Always talk to your healthcare 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.

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.

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 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, health 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. 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.

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. You may notice a new rash or other skin side effects 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

7. Ask Your Doctor About Dose Adjustments for Targeted Therapies

If you’re really struggling with side effects, you can ask your doctor about adjusting the dose of your targeted therapy. Your doctor may have you stop your treatment for a period of time to see if the side effects lessen in severity, and then they may restart you on the drug at a lower dose.

Targeted therapies are generally taken longer than a course of chemo, so it’s especially important that you can tolerate the treatment for long periods. Side effects that significantly affect your quality of life can get in the way of sticking with your medication. Inconsistently taking your medication could lead to it not working as well as possible.

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.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumors, get advice, and find support from others who understand.

Have you had side effects during treatment? Do you have any tips that helped? Let others know in the comments below.