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FOLFIRI/XELIRI: Side effects

Chemotherapy can come along with a bunch of unpleasant side effects. If you’re on a FOLFIRI/XELIRI regimen, here are some side effects you might experience:

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.

Let’s get into some side effects you might experience…

Nausea or vomiting

This is an extremely common chemotherapy 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

Heartburn

Chemotherapy can be very hard on the gut. Many patients on capecitabine experience heartburn.

Here are some tips:
  • Eat small meals. If you feel fine afterwards, you can try eating a bit more
  • Avoid trigger foods, such as spicy foods and caffeine
  • Take your capecitabine pills within 30 minutes of a meal
  • Avoid lying down within 30 minutes of a meal
  • Try baking soda and water, or manuka honey and apple cider vinegar
  • Your doctor might suggest medications such as omeprazole (Prilosec), pantoprazole (Protonix), Gaviscon, Tums, esomeprazole (Nexium), famotidine (Pepcid), or cimetidine (Tagamet). It’s important to note that omeprazole, pantoprazole and esomeprazole should not be taken along with capecitabine. H2 blockers such as famotidine or cimetidine can be used in such cases. It is always a good idea to tell your care team all the medications you are on!

Stomach cramps

Some patients report experiencing stomach cramps shortly after being disconnected from the chemotherapy IV.

Here are some tips:
  • Ask your oncologist about medications such as Atropine, Lotomil (which contains Atropine and can be taken at home), or Bentyl
  • Try a heating pad on the stomach
  • Take a warm bath

Chemo brain

Do you feel a bit off your game? Chemotherapy 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 chemo, 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

Struggling with chemo brain?

Join Cognitive Way, one of our COLONTOWN Facebook groups. 

Fill out the registration form here.

Changes in taste or smell

Chemotherapy 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 chemo has finished or if you have a chemo 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 chemotherapy. 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 chemo 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 chemo 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 chemotherapy, you might have been worried about losing your beautiful hair! However, colorectal cancer patients undergoing chemo often experience hair thinning, not complete hair loss.

Here are some tips:
  • Purchase a cold cap. Reducing the temperature of your scalp can prevent chemotherapy 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 WishesCompassionate CreationsChemo DivaCaring 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

Chemotherapy can cause painful mouth sores. If you develop them, discuss your symptoms with your oncologist immediately. A dose reduction of 5FU 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

Constipation

Some people have trouble going to the bathroom while on chemotherapy. Many anti-nausea medications, pre-meds and home meds have a constipating effect.

Here are some tips:
  • Drink plenty of fluids
  • Make sure to get some light exercise. This can help get the bowels moving
  • Stool softeners such as Miralax, Dulcolax, magnesium citrate or Milk of Magnesia can help get things moving
  • Metamucil can help bowel regularity
  • Try prune juice

Diarrhea

Irinotecan can cause loose bowels. This is one of the most common side effects of the FOLFIRI/XELIRI regimens. 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

Sun sensitivity

When on chemotherapy and other targeted therapies, try to stay out of the sun for extended periods of time. Wear hats and protective clothing, and purchase a good sunscreen. Wear it every day — whether or not you’re planning on leaving the house!

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 chemo delay should not affect your long-term prognosis or the overall effectiveness of your treatment. If you are getting a 5FU bolus, dropping it can help with blood counts.

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

Chemotherapy 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. Chemo 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

Low platelets

Chemotherapy drugs can cause your platelet levels to drop. Platelets help your blood clot — so low levels can cause bruising, nosebleeds and sensitive gums.

Here are some tips:
  • Sometimes, low platelet counts can be caused by problems with the spleen. In this case, the problem may be resolved by a minimally invasive procedure called splenic embolization. This is not appropriate for everyone, so please speak to your healthcare team if you have any questions
  • Your doctor may prescribe injections, such as  romiplostim (Nplate) and eltrombopag (Promacta) which can help boost platelet counts
  • Some patients are given platelet infusions

Changes in sexual health and fertility

Chemotherapy 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, chemo can reduce testosterone production, however it should return to normal after treatment has finished.

Chemotherapy 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 LiveStrongWomanLab 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 chemo 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

Some severe side effects may also be related to a dihydropyrimidine dehydrogenase (DPD) deficiency, which means the body can’t break down 5FU. Although DPD deficiency is rare, it does affect a small number of patients and in some can result in death if untreated. For more information on DPD deficiency, click here.

Want to learn more about side effects and how to manage them?

Join one of our COLONTOWN Facebook groups:

  • 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 the Healthy Gut Cafe and Fitness Center, 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.