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FOLFOX/CAPOX: Side effects

Chemotherapy can come along with a bunch of unpleasant side effects. If you’re on a FOLFOX/CAPOX 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…

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.

Read more about icing here.

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. 

Learn more about neuropathy and how to cope here.

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

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

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!

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!

Want to learn more about cancer and intimate relationships?

Check out this link from Cancer.net.

Diagnosed: July 2021

Stage: IIIB

Type: Colon cancer, one involved lymph node

First, let me go back to the last treatment…. If you saw my “in the chair” picture you will know that my absolute neutrophils were still down. They were at 1.0, and for round 4 and the doctor had wanted them at a minimum of 1.2. When I saw the results on MyChart, prior to seeing the doc, I assumed that treatment would be delayed again. However, he said we could go ahead (woo hoo!) but that I would need an injection of Neulasta at pump disconnect on Wednesday. Neulasta is a neutrophil stimulator that should boost my neutrophils for the full two weeks between treatments. Fingers crossed – I’ll have a blood test prior to Monday’s treatment and will know for sure. Also, I didn’t mention that my platelets are low now, too. Platelets are what cause clotting in the blood, and if they are too low you run the danger of uncontrolled bleeding. Mine are not yet *that* low, but bear watching. In the meantime, I am very careful not to cut myself. Mark is doing all the food prep requiring peeling or chopping. Between the lower ability to fight infection and the prospect of bleeding, I’m being mighty careful these days.

As for the ups and downs, it seems that maybe there is a pattern emerging. Unlike most people on the FOLFOX regimen, my chemo week seems to be better than my “off” week. It’s usually just the opposite according to folks in the Colontown community. My life is marked in 14-day cycles, with Day 1 being my infusion day. Day 3 is my pump disconnect day. For me, days 1 through 5 are generally pretty good (despite the fact that I’m tethered to the pump for 3 of those days). I’ve talked about the steroids many times, and I’m pretty sure that my 3 days at full strength, and 2 days at half strength, are what make me feel good: lots of energy, good appetite, and although there is still steroid-induced insomnia I’m still able to sleep enough to feel OK.

Ah. But then Day 6 happens. When I said I had to figure out how to write about the bad days, I’m talking mostly days 6 through 9. If you have delicate sensibilities you might want to skip ahead to Day 10. These four days I have delicately referred to as “irritable bowel” days. In reality, that’s bit like calling a hurricane “a bit of a breeze.” Nothing in my six decades of life have prepared me for what those 4 days are like. [As a bit of a side-note, let me talk about how chemo works and how it relates to these days: Chemo targets quickly dividing cells, since cancer cells are quickly dividing. It’s why people lose their hair and have problems with their fingernails – hair follicles and fingernails are composed of quickly-dividing cells. When you kill those cells, you get the expected outcomes. Same for your stomach lining – hence nausea. This is maybe a bit simplistic, but probably sufficient for my purposes.] In the case of colon cancer chemo, the chemicals kill the cells that line the GI tract. Eventually all of that dead stuff has to be eliminated. In the colon cancer community, we call it fire-rhea or chemo-rhea. You are eliminating not only the GI lining, but residual chemicals. (Those would be the same chemicals the require a haz-mat kit in the event of a chemo leak – see the pump post if you missed it.) Let me tell you, it’s a bitch. Throughout the course of this whole ordeal, I’ve rarely had the urge to cry. But during days 6-9 I want to cry, rage, swear, shake my fist at the sky, crawl into a hole and feel sorry for myself, you name it. Yes, I have meds that help, but the bottom line is that the stuff needs to be eliminated. And it’s awful. Frankly, I’m lucky that for me it’s just 4 days. Some people live with this all the time. I can’t imagine. For me it’s not long enough to really have to worry about dehydration or anything really serious. It’s uncomfortable, but not actually dangerous. But it makes for a long, long 4 days. And I’m very unhappy during those 4 days.

Day 10 and 11 are, for me, fatigue days. (I think it was after Round 3 that I previously wrote about fatigue, so forgive the repetition if you read that one.) I suspect it’s mostly my body trying to recover after the previous 4 days. These aren’t exactly bad days. They’re just days I can’t really do anything. Mostly I curl up in the recliner and read. By this point my appetite is usually gone, so eating is a bit of an effort. I have many meals of cereal and (lactose-free) milk during this time. It’s the weirdest thing. Sometimes I’m sleepy, but not always. It’s more a sensation of not wanting to move. Complete inertia. It’s not actually unpleasant, just a bit frustrating. Almost dream-like. It feels like a major effort to get out of the chair to go to the bathroom or get something to eat. I don’t have anything to compare it to, because it’s not like anything I’ve ever experienced before. One of the mantras during chemo is “listen to your body.” So I listen, and do very little for these two days.

Today is Day 12. Generally Days 12 – 14 are pretty good. If you’re doing the math, you will come up with 8 good days to 6 bad days, which isn’t a bad ratio. These 3 days generally come with good energy and appetite, and it’s when I tend to do some baking and good cooking. Today is a bit out of the norm because I discovered this morning that my port incision is red and has a raised spot. Given my fear of infection I sent a message to the doctor’s office along with a picture, just to see if I needed to have it looked at immediately. (If you haven’t used MyChart, or its equivalent, let me say that it’s an awesome tool! Imagine emailing your doctor – with a picture! – and having a reply in a couple of hours!) They aren’t too concerned but will look at it on Monday when I go for Round 6. They are mostly worried that a bit of suture might have worked its way through the incision. I don’t really want to think about what we might have to do to correct it. Anyway, it has me stressed and in a bit of a funk. Unless there’s something bigger to report, I think my next update is going to be about the mental/emotional aspects of cancer and chemo. No question – cancer messes with your head. Right now I’m just angry. That’s not necessarily logical, but there you have it. I’m doing my best to do everything right, and this is what I get. I know of others who have gone through major illnesses basically ignoring all advice and precautions and have come through it just fine. I follow all the rules, and I get (ok, “might have”) an infected incision. Well, damn. Like I said, not logical, and probably totally random, but we feel what we feel and I feel angry. One thing I’ve learned is to feel all the feels and not judge myself. That’s probably good advice for everyone, regardless of situation.

Stage: IIIB

Type: Rectal cancer

I received 5 treatments of radiation, and after my short course radiation, I went through 6 rounds of CAPOX. I tolerated the capecitabine well. The only negative issue I had with it was my food didn’t taste right. I would brush my teeth and tongue often and that helped. The Oxaliplatin, I did not tolerate well. I did not get a port, Oxaliplatin was administered via an IV all 6 rounds, and this didn’t cause me any problems. First treatment, I wanted to ice, but the nurse was fighting me on it, so I didn’t ice my first treatment. I felt fine during the treatment. Afterwards, I immediately felt “first bite” and I had some minor cold sensitivity in my hands. When I arrived home, I took a nap. When I woke up I was violently ill, vomiting constantly over the next day and a half. My husband and I didn’t know that we should have gone to the emergency room after 24 hours of vomiting. I was so dehydrated that I started losing control of my legs and my mouth. Husband took me to the emergency room where I received fluids. By the third day I was feeling better.

For the second treatment, my oncologist reduced my Oxaliplatin dose by 25%. I did ice this time, my hands feet and mouth. I still had first bite after treatment, but did not have any cold sensitivity. I felt fine leaving the hospital, but on the drive home, I passed out (my husband was driving). I felt fine until we got home, about two hours after we arrived home I started vomiting. It wasn’t as bad this time and stopped after about 24 hours.

For the third treatment, my oncologist reduced the Oxaliplatin by another 25%, so I was at 50% of the original dose. He also added a new anti-nausea medicine to my IV, 150mg of Emend. I iced my hands, feet and mouth. I experienced first bite, no cold sensitivity and no vomiting this time! I also had a Signatera test for the first time after this treatment which showed a low level of residual tumor DNA. We stuck with this for the rest of my treatments.

After my fourth treatment, my Signatera came back showing no tumor DNA and this continued through treatments and after. I also found that if I ate during my treatments I didn’t get first bite, so I would eat some light snacks to keep my jaw moving. I stopped icing my mouth after my fourth treatment, the thought of ice was making me nauseous. I couldn’t drink cold drinks for a few days after treatment, but I was ok with that. I continued to ice my hands and feet and had no cold sensitivity. I didn’t have any neuropathy during my treatments, but two months after I finished I started having mild neuropathy (coasting) in my toes. I’ve had it for about three months and I’m hoping it goes away soon. My treatments worked well, I had a complete clinical response. I chose to not get the operation and am following a watch and wait protocol.

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.