Stivarga: Side effects
Treatment can come along with a bunch of unpleasant side effects. If you’re taking Stivarga, here are some side effects you might experience:
- Nausea or vomiting
- Chemo brain
- Changes in taste or smell
- Fatigue
- Anxiety
- Hair thinning or loss
- Mouth sores or mucositis
- Diarrhea
- Bone and joint pain
- High blood pressure
- Low white blood cell counts
- Low red blood cell counts
- Hand foot syndrome
- Changes in sexual health and fertility
Whew, sounds like a lot, right? Remember that you likely won’t experience all of these side effects — because everyone’s bodies are different.
If you ever feel like you can’t manage your side effects and symptoms, don’t be afraid to speak with your doctor about pre-meds or complimentary meds to manage them. You can also ask for a referral to the palliative care specialist or team at your cancer center. It’s important to note that palliative care is not the same as hospice care. Palliative care helps patients manage symptoms, and it can be extremely helpful for many people.
Remember that it’s important to check in with your healthcare team before starting any supplements, complementary therapies or fasting regimens. These treatments might not be appropriate for everyone — and some may even interfere with chemotherapy.
Nausea or vomiting
This is an extremely common side effect. Nausea usually lasts for a few days to a week after infusion.
Here are some tips:
- Take pre-meds. Your oncologist will likely prescribe anti-nausea medications like dexamethasone, Compazine, Zofran, Ativan, and Akynzeo. Even if you don’t feel sick, take your medications as prescribed. It’s much easier to prevent nausea than it is to treat it once it has started
- Stay well hydrated. Drinking plenty of water and receiving fluids post-infusion can help with nausea
- Eat a small amount of bland food, like rice or bread
- Choose foods that sound appealing to you. If you’re craving Cheetos, follow your gut. Avoid foods with strong smells
- Try ginger tea, candies or gummies
- Try acupuncture or acupressure
- Look into deep breathing or muscle relaxation techniques
Chemo brain
Do you feel a bit off your game? Treatment can cause a decrease in mental acuity, difficulty remembering certain things, and trouble finishing tasks. You might struggle with concentrating, or learning new skills. Usually, things get better after the end of treatment, but many changes can be permanent.
Here are some tips:
- Try word games, crossword puzzles, or other games. These exercises can help improve memory and cognitive skills over time
- Speak to a speech therapist or neurologist, if symptoms interfere with daily life
Changes in taste or smell
Treatment can change the way your body perceives tastes and smells, causing aversions to things you usually don’t mind! These changes are temporary, and will likely go away after treatment has finished or if you have a break.
Here are some tips:
- Avoid spicy foods, and foods with strong tastes and smells
- Stick to bland foods that sound appealing to you
- If you’re experiencing a persistent metallic taste, avoid using metal cooking pans and pots, and avoid metal cutlery
- Zinc lozenges can help deal with a metallic taste in the mouth
Fatigue
Feeling tired is one of the most common side effects for people going through cancer treatment. It’s important to remember that your body is going through a lot.
Here are some tips:
- Listen to your body. Take naps and rest when you need to
- Try some light exercises. Going for a walk can help raise your energy levels
- Notice patterns in your treatment cycle. Do your best to plan activities that require a lot of energy on the days you normally feel best
- Ask friends and family to help with things like cooking, childcare, shopping and housework. Gift certificates for cleaning services or food delivery can be great gifts to ask for
Anxiety
You might feel anxious about your cancer diagnosis, or worried about your treatment plan. Many patients feel stressed before infusions. Managing anxiety is an important task, but it can be difficult!
Here are some tips:
- Try meditating
- Look into deep breathing or other relaxation techniques
- Speak to a therapist, psychologist or counselor. You might be able to access these services through your cancer center. Your cancer center’s social worker should be able to write a referral for you
- Join a support group. Reach out to the social worker at your cancer center, or to nonprofit organizations. Join COLONTOWN community, where there are support groups for patients and carepartners
- Drugs such as Ativan, often given during infusions, can help with anxiety
- Speak to your primary care provider, or other mental health professional, about other medications for anxiety
Hair thinning or loss
When you first learned about starting cancer treatment, you might have been worried about losing your beautiful hair! However, colorectal cancer patients often experience hair thinning, not complete hair loss.
Here are some tips:
- Purchase a cold cap. Reducing the temperature of your scalp can prevent drugs from attacking your hair follicles
- Get a good quality wig. You might not need it, but it can help you feel more confident. Many insurance companies will help cover the cost of a medical wig. There are several organizations that work specifically with cancer patients. They can often help advise how to get the cost of the wig covered by your insurance and some companies can even make custom wigs from your own hair! If you are interested, here are some organizations to check out: Wigs and Wishes, Compassionate Creations, Chemo Diva, Caring and Comfort
- Use a good quality shampoo and conditioner. Join COLONTOWN, where you will find some good brand recommendations!
- Be gentle on your hair! Use a wide-toothed comb, and if you get tangles, don’t pull too hard. Protect your hair while you are sleeping
Want to learn more about coping with hair loss?
Check out this link from the National Cancer Institute.
Mouth sores or mucositis
Treatment can cause painful mouth sores. If you develop them, discuss your symptoms with your oncologist immediately. A dose reduction can help.
Here are some tips:
- Stick to soft foods, like soups, broths, yogurt and smoothies
- Gargle with baking soda, salt and water
- Try biotene mouthwash
- Ask your doctor about prescription mouthwashes, like Magic Mouthwash and PerioGuard
- Medical-grade Manuka honey may help
- If your mouth sores become infected, you might need an antiviral or antibiotic medication. Speak to your oncologist if you think this is the case
Diarrhea
Stivarga can cause loose bowels. You may experience this at any point during your treatment, even up to 10 days post infusion.
Here are some tips:
- Make sure to stay hydrated. Drink plenty of water and consider drinks with electrolytes
- You may be given atropine as a pre-med to help prevent diarrhea
- You can also take over the counter medications such as Immodium or Lomitil at home to help manage symptoms
Bone and joint pain
Stivarga can cause soreness or stiffness in your bones and joints. Talk to your oncologist if you experience these symptoms.
Here are some tips:
- Stretching and gentle exercise may help reduce joint pain. Weight management can also help reduce stress on the joints
- Try hot or cold compresses, heating pads, or ice packs
- Accupuncture may help
- Massage therapists with experience working with cancer patients can do gentle massages to ease joint pain
- A physical therapist can help restore function in the joint, and teach you how to relieve pain using exercises at home
High blood pressure
This drug can cause high blood pressure, also called hypertension. Your healthcare team will monitor your blood pressure carefully. If it gets too high, they may consider reducing your dose, or prescribing medication to lower it. If this becomes an issue for you, it might be a good idea to purchase a machine to monitor blood pressure at home.
Low white blood cell counts
White blood cells (WBC) are used to fight off infections. Low white blood cell counts can increase your risk of infection, and make you feel short of breath.
Your healthcare team will monitor your WBC counts to make sure they don’t get too low. If they are, your treatment might be delayed by a week or two, to give your body a chance to recover. Treatment delays should be avoided whenever possible, but they are common.
Talk to your team about any concerns you have, but know that an occasional treatment delay should not affect your long-term prognosis or the overall effectiveness of your treatment.
Here are some tips:
- Protect yourself from infection. Wash your hands regularly, and avoid contact with people who have contagious illnesses
- Eat a well-balanced diet, with plenty of healthy proteins. Wash your produce well, and cook food thoroughly to avoid bacterial infections. Avoid uncooked, unpasteurized and undercooked foods
- Try light to moderate exercise
- Your doctor may prescribe injections like filgrastim (Neupogen), fligrastim biosimilar (Zarxio), pegfilgrastim (Neulasta), and pegfilgrastim biosimilar (Udenyca) can boost white blood cell counts and help you avoid treatment delays. However, these injections can cause bone pain. Try taking Claritin to help.
Low red blood cell counts
Treatment will likely decrease your red blood cell (RBC) counts. This can cause fatigue and shortness of breath. Your healthcare team will monitor your RBC levels to make sure they don’t go too low. Many patients diagnosed with colorectal cancer may already have anemia due to iron deficiency from tumors in the gastrointestinal tract bleeding. Treatment can worsen preexisting anemia.
Here are some tips:
- Get your ferritin levels tested to assess the level of iron stores in your blood — especially if you suspect iron-deficiency anemia. If you have low ferritin levels, your oncologist may recommend iron supplements
- If there are other reasons for blood loss such as heavy periods, make sure to address this!
- If your ferritin levels are normal, but your RBC counts are very low, your oncologist might recommend a blood transfusion
- Injections, such as Procrit, can help boost RBC counts
Hand foot syndrome
This syndrome causes redness, swelling and pain on the palms and soles of the feet and painful cracks on your fingers and toes.
Here are some tips:
- Use a good moisturizer on your hands and feet. Colontownies have recommended Udder Cream and Bag Balm
Changes in sexual health and fertility
Cancer treatment can cause a loss of libido. Women may experience a drop in estrogen production, which leads to early symptoms of menopause. This can cause vaginal dryness, and loss of a period. These symptoms may resolve after you stop treatment, however, they may become permanent. In men, treatment can reduce testosterone production, however it should return to normal after treatment has finished.
Treatment can also affect fertility. Some drugs have a higher risk of affecting fertility than others, depending on your age and other factors. The risk of permanent infertility is even higher if you’re treated with both chemotherapy and radiation therapy to the abdomen or pelvis. Speak with your oncologist before starting treatment about any concerns you might have.
Here are some tips:
- Talk to your partner about symptoms and how you are feeling. Try to find ways to be intimate that are comfortable for both of you
- For women, vibrators can help increase blood flow to the vagina and relieve symptoms. Using a vaginal moisturizing cream can help
- If vaginal dryness is a problem, using a lubricant during sex can be helpful
- Reclaiming Intimacy is an organization that offers education, support and products for people affected by cancer to help them improve their sexual health and intimate relationships
- Organizations such as LiveStrong, WomanLab and Reprotech have fertility preservation and financial assistance programs that are aimed at cancer patients who are at risk of losing their fertility due to cancer treatments
- Look for a support group where you can connect with other cancer patients in similar situations, such as COLONTOWN
- Remember that regaining sexual function may take time!
When should I contact my care team?
It’s a good idea to keep a journal or notes about your side effects, so you can discuss them with your oncologist at your next appointment. This can help you advocate for changes to your pre-meds and home meds as necessary. Be sure to discuss possible side effects with your oncologist, so you know what’s normal and what might be concerning. Before your first treatment, you should have been given a 24-hour phone number to call in case of severe symptoms.
Some of these symptoms include:
- Persistent high fever
- Chest pain or chest discomfort
- Unexplained bruising or bleeding that won’t stop
- Shortness of breath
- Unusual or intense pain
- Signs of an allergic reaction, such as severe itching, swollen tongue, or difficulty swallowing
- Persistent diarrhea or vomiting
Patient perspective by Julie
I have been on Stivarga as part of a combination therapy. So, my Stivarga dose has been lower than what it would be if I was taking it on its own. I take 80mg daily for two weeks and then have a week off.
I think the lower dose has helped keep my side effects very minimal. I have had fatigue, diarrhea, and some mild heel pain when I am on the pills. But, all of that has been quite manageable and less than I have experienced on other treatments.
My tumors have remained mainly stable with a bit of shrinkage on this combination. I call that a win!
I’d say the most challenging part of Stivarga has been that you need to take it with a low fat/low calorie meal. I take it in the morning and I love breakfast foods – which unfortunately are not often low fat/low calorie. So, my morning meals have become much more basic and I enjoy breakfast for dinner much more often which my family actually loves too.
Want to learn more about side effects and how to manage them?
Join one of our COLONTOWN Facebook groups:
- Come join us in Long Hauler Hollow, where you can find answers to all of your questions about Stivarga
- Corner Cupboard is a place to discuss treatment side effects and management
- If you’re suffering from late or long-lasting side effects related to treatment, check out The Late Show
- Palliative Pathways can teach you how your palliative care team can help you
- In Healthy Habits Highway, you can learn about how diet and exercise can help improve quality of life during treatment
- Join Live Wire to learn about icing strategies and ways to cope with neuropathy
- Cognitive Way is here to help people struggling with chemo brain
Want to join? Fill out the registration form here.
Last edited: February 2023