FOLFOXIRI/FOLFIRINOX: Side effects
Chemotherapy can come along with a bunch of unpleasant side effects. If you’re on a FOLFOXIRI/FOLFIRINOX regimen, here are some side effects you might experience:
- Cold sensitivity
- Neuropathy
- First bite pain
- Nausea or vomiting
- Heartburn
- Stomach cramps
- Chemo brain
- Changes in taste or smell
- Fatigue
- Anxiety
- Hair thinning or loss
- Mouth sores or mucositis
- Constipation
- Diarrhea
- Sun sensitivity
- Low white blood cell counts
- Low red blood cell counts
- Low platelets
- Changes in sexual health and fertility
- Dysarthria
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.
Cold sensitivity
You might experience tingling, numbness, or pins and needles in your hands and feet when touching cold objects. It might feel like your throat is closing when you inhale cold air. This sensation is aggravated by cold temperatures.
Many people experience cold sensitivity with their first infusion. It can come on very quickly, within hours of receiving oxaliplatin. Cold sensitivity will most likely get better after a few days, but it can build up over time, and get worse after each infusion.
It’s important to note that cold sensitivity is temporary, and is different from peripheral neuropathy, which can be permanent! Icing can help prevent or reduce cold sensitivity.
Here are some tips:
- Avoid cold drinks, especially in the first few days after infusion. Only eat and drink things that are room temperature or warmer. It’s okay to microwave a Coke if you need to (just don’t do it in the can!)
- Find a nice pair of gloves, and use them when taking things out of the fridge or freezer
- Avoid walking barefoot. Cold floors can cause painful pins and needles. Wear socks
- Avoid going outside if it’s cold. Wrap a scarf around your mouth, wear gloves and a hat to protect your skin. Warm up the car before you get in
- Watch out for air conditioning. Wear long sleeves and pants in air conditioned rooms
- Use warm water to brush your teeth, wash your hands, and bathe. Avoid prolonged hot water exposure, because this can increase your risk for hand/foot syndrome and dry out your skin — which can make neuropathy feel worse
- Use hand/foot warmers. One-time hand warmers can be found in bulk online. They last 6-8 hours, and can be placed inside gloves and socks. There are even toe warmers!
- Heating pads can be helpful, but make sure to use them on low. Don’t fall asleep with them on. Check your hands and feet every 10-15 minutes to make sure they are not getting too hot or blistering
- Make your own warm compress
- If you accidentally breathe cold air and feel like your throat is closing, DON’T PANIC! The feeling should go away within a few minutes. Take slow, deep breaths in through your nose and out through your mouth. Wrap a warm towel around your neck. Have a friend monitor your breathing, and make sure your lips do not turn blue. If you’re having trouble breathing, seek immediate medical attention. Don’t try to drink something warm to speed up the process. You could potentially aspirate, meaning the liquid goes into your lungs instead of your stomach. This could make your situation much worse, likely causing an ER visit and hospital stay
Neuropathy
Neuropathy is a result of nerve damage, and causes numbness, pain and tingling in the hands and feet. Unlike acute cold sensitivity, the symptoms of neuropathy usually begin after several oxaliplatin infusions, and may become permanent.
Luckily there are some things that can help improve and manage neuropathy symptoms.
First bite pain
You might experience pain or stinging in your jaw when you take a first bite of food or sip of a drink. Oxaliplatin can affect how saliva is secreted in your mouth. Unfortunately, icing does not usually help with this side effect.
Try starting with a small bite of bland food. Roll it around in your mouth before biting down. Then chew slowly and carefully. If you experience any pain, try to breathe through it. As the name suggests, first bite pain only happens with the first bite of food. This will become less severe as you get used to chemo, but it can increase in intensity as you reach later cycles.
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.
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 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
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 FOLFOXFIRI/FOLFIRINOX 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 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!
Dysarthria
When the muscles we use to produce speech are damaged, weakened, or paralyzed, this is called dysarthria. It can be difficult to control the tongue and voice box, resulting in slurred speech. This can sometimes happen with FOLFOXIRI regimens, when oxaliplatin is given before irinotecan.
According to Dr. Pashtoon Kasi:
Apparently when one gets oxaliplatin before the irinotecan chemo, it sensitizes one of the nerves that gives nerve supply to the tongue. Irinotecan then acts on the nerve to give a sensation of dysarthria or stroke or an allergic reaction. But it’s not an allergic reaction. You reverse the order i.e. give “I” before “O”, everything then goes away.
We noted this a few years ago and our institution and several others changed their practice.
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.
Patient perspective by Jen
Diagnosed: July 2020
Stage: IV
Type: Rectal cancer, metastases in liver, lungs and distand lymph nodes
After a not-so-positive experience with my first oncologist, I changed care teams in January 2021. I still remember my first appointment with my new oncologist. He told me that since I was young and otherwise healthy, he wanted to “bring out the big guns” and treat me with Folfoxiri plus Avastin. I wasn’t entirely new to the game, so I knew that this was one of the most aggressive chemo regimens around and had the potential for very bad side effects.
I remember being pretty nervous going to my first Folfoxiri treatment. They had told me that the infusion would last 6 hours. I thought it was a typo, but soon realized that I was wrong. The day started with a blood draw through my port and a short visit with my oncologist. Then I went upstairs for my infusion. First, I received my pre-meds (Dexamethsone, Aloxi and Emend). Then, I had my Avastin infusion over 30 minutes. After that, I was given Atropine and my infusion of Irinotecan over 90 minutes. Last came the Oxaliplatin over 2 hours. During the infusion, I felt pretty good. The steroids (dexamethasone) usually give me enough of an energy burst to make it through my infusion feeling ok. I passed the time watching videos and listening to audio books. I also had my heating pad with me, as I hadn’t learned about icing and was told to keep warm during the Oxaliplatin infusion.
Finally, the nurse gave me my Leucovorin over 10 minutes and hooked me up to the 5FU pump. I had never used a mechanical pump before, so I had to watch a video about it, sign some forms and was given a spill kit in case of any leaks. Before leaving the center, I had to make my appointment to come back in two days for disconnect and fluids.
So far, I have had 11 infusions of Folfoxiri (6 with Avastin) and had an excellent response, which made me eligible for colon and liver surgery after 5 cycles. Despite the fact that I was anticipating horrible side effects, in reality, they were pretty tolerable. I worked with an integrative doctor at my cancer center throughout my treatment, who helped me with tips and tricks regarding diet, lifestyle and some supplements (approved by my oncologist) to help maximize well-being during treatment. I experienced some mild nausea on the first few days after infusion, mild fatigue and cold insensitivity (until I learned about icing). My disconnect was on a Thursday and I was usually out hiking or cycling by the weekend.
It sounds crazy, but I think that making an effort to stay active during treatment really helped with combatting a lot of the side effects. I also found the use of support groups, like Colontown to be immensely helpful, both in terms of finding information and just having people around who know what I’m going through.
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.
COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.
Last updated: March 9, 2022