What premeds might I receive?

Most patients taking chemotherapy experience some side effects during the duration of their treatments. Luckily, there are lots of medications to help minimize unpleasant side effects. 

These medications are often referred to as “premeds” — as many of them are given before chemo infusion to help prevent side effects from happening in the first place.

You’ll also be given other medications, sometimes referred to as “home meds” or “supportive meds” to take as needed. Before starting chemo, your oncologist will usually prescribe these medications for you to pick up at your local pharmacy. They may also recommend some over-the-counter medications to have on hand as well. Make sure to get all the recommended meds before starting treatment, as it’s difficult to rush out and pick them up when you are already feeling unwell. 

Make sure to take all your medications as prescribed, following your oncologist’s recommendations. Some meds will be given on an “as needed” basis — meaning you don’t need to take them all the time. You may be told to take others on a particular schedule, as a preventative measure. If this is the case, make sure to follow your oncologist’s recommendations, as it’s easier to prevent side effects before they start than try to get them under control later on.

As you’ll see below, there are many, many medications that oncologists can prescribe, and some will work better for you than others. Keep a journal to record your side effects, and report them to your team.

Premeds can include:

Anti-nausea medications

Akynzeo (netupitant & palonosetron)

Akynzeo is a medication used to prevent chemo-related nausea and vomiting. It’s often given orally, about an hour before your chemo infusion. This medication is usually very well-tolerated but some patients may experience some side effects, such as indigestion, constipation, skin redness, low energy, headaches, and general weakness.

Aloxi (palonosetron)

This is a medication commonly used to prevent nausea and vomiting from chemo. It’s usually given by IV about 30 minutes before starting your chemo infusion, but can also be given orally. One dose of this medication is usually effective for 3-5 days, so it is only given once. Aloxi is usually very well-tolerated, with the most common side effects being headaches and constipation in a small number of patients.

Ativan (lorazepam)

Ativan is sometimes prescribed to take at home to help combat nausea and vomiting. In addition, it also has an anti-anxiety effect, which can help patients manage treatment-related stress. It can be taken as a preventative measure before or after chemo to combat nausea. It is usually prescribed orally to take on an “as needed” basis at home, although it can be administered by IV in case of severe vomiting. Ativan is generally well-tolerated but may cause the following side effects in a small number of patients: fatigue, dizziness, weakness, confusion, depression, memory loss, and trouble maintaining balance.

Avomine, Vertigon, Phenergan, Sominex (promethazine)

This medication is usually prescribed to be taken on an “as needed” basis at home if you are experiencing nausea and vomiting. Extreme side effects from this medication are rare but some people may experience drowsiness, blurred vision, dizziness, confusion, dry mouth, muscle tremors, ringing in the ears, increased or decreased blood pressure, and increased or decreased heart rate.

Cesamet (nabilone)

This medication is used to treat extreme nausea and vomiting due to chemo. It is similar to the natural substances found in cannabis and can be addictive, so is only prescribed when absolutely necessary. It is taken orally and can be taken at any time before, during, or after your chemo cycle. Some side effects that people may experience are dizziness, drowsiness, dry mouth, feeling “high,” lightheadedness, headache, trouble sleeping, or memory problems.

Compazine (prochlorperazine)

This drug is usually prescribed to be taken at home on an “as needed” basis to help combat nausea and vomiting. It is taken orally and usually very well tolerated, with the main side effects being drowsiness and constipation.

Dexamethasone

Dexamethasone is a steroid usually given by IV prior to chemo to help prevent nausea and vomiting. It can also be given orally and is sometimes given to patients to take at home on the second and third days of chemo. Dexamethasone is quite a strong medication and often causes side effects, although many patients appreciate the increased appetite and extra energy after their treatments. Side effects that patients may experience include increased blood pressure, increased blood glucose (sugar), trouble sleeping, increased appetite, fluid retention, swelling of feet and hands, upset stomach, stomach ulcers, jitteriness, mood swings, increased white blood cell count, muscle weakness, impaired wound healing and weight gain.

Emend (aprepitant)

Emend is commonly used to help prevent nausea and vomiting. It can be administered by IV, about 30 minutes before your chemo infusion or orally, about 60 minutes before your chemo infusion. When given by IV, the medication is effective for several days, so only needs to be given once. When given orally, you may be given pills to take at home on days 2 and 3 of your chemo cycle. Emend is usually very well-tolerated in most patients. The most common side effects include fatigue, diarrhea, weakness, heartburn, stomach pains, and hiccups.

Kytril (granisetron)

This medication can be used to prevent nausea or vomiting, and in extreme cases, may be used to combat chemo-induced nausea. It is given by IV, just before your chemo infusion. Some of the side effects that patients experience may include insomnia, headaches, constipation, or diarrhea.

Maxolon (metoclopramide)

This medication may be prescribed to be taken at home on an “as needed” basis to combat nausea and vomiting. It is generally well-tolerated, but some patients may experience side effects such as drowsiness, diarrhea, dry mouth, and skin rashes.

Motilium (domperidone)

This medication may be prescribed on an “as needed” basis to take at home to combat chemo-related nausea. It is usually taken about an hour before meals and is very well-tolerated. The most common side effect that people experience is dry mouth.

Nozinan, Levoprome, Detenler, Hirnamin, Levotomin, Neurocil (levomepromazine)

This medication is usually prescribed orally to be taken on an “as needed” basis to combat severe nausea and vomiting related to chemo. Some of the more common side effects of this medication include drowsiness, constipation, headache, and dry mouth.

Zofran (ondansetron)

This medication is given to take at home to prevent or treat nausea and vomiting related to chemo. It is taken orally and is usually very well-tolerated. The main side effect from Zofran is constipation.

Zyprexa (olanzapine)

This medication can be given orally to help prevent nausea and vomiting related to chemo. The most common side effects include drowsiness and weight gain.

Anti-diarrhea medications

Atropine

This drug is commonly given to patients receiving FOLFIRI. The “IRI” stands for a chemo drug called irinotecan, which can cause extreme diarrhea and stomach cramps. Atropine is meant to help prevent these side effects. It is usually given intravenously just before receiving your infusion of irinotecan. Some side effects that patients may experience due to atropine include increased heart rate, sensitivity to light, dry eyes, dry mouth, constipation, decreased sweating, abdominal pain, and delays when urinating.

Imodium (loperamide)

Imodium can be taken at home on an “as needed” basis to help manage diarrhea. Patients on the FOLFIRI chemo regimen often experience diarrhea, which can come on as late as 10-12 days following your infusion, so it is always a good idea to have some Imodium on hand just in case you need it. The most common side effects include drowsiness and constipation, so be careful not to overdo it!

Lomotil (diphenoxylate & atropine)

Lomotil may be prescribed to be taken at home on an “as needed” basis to help manage diarrhea. Patients on the Folfiri chemo regimen often experience diarrhea, which can come on as late as 10-12 days following your infusion. The most common side effects include drowsiness, dizziness, headache, blurred vision, dry mouth, and loss of appetite.

Dietary recommendations

While medications are often useful for managing acute diarrhea, there are also important dietary factors to consider to help prevent dehydration and stop your diarrhea from getting worse. If you are experiencing diarrhea, make sure to increase your fluid intake and replace lost electrolytes with an electrolyte drink, such as Pedialyte. It is also a good idea to follow a low fiber diet, like the BRAT diet (bananas, white rice, apples, and white toast) until your diarrhea has improved. 

Laxatives

Colace (docusate)

This medication is used to treat constipation. It works by adding water back into poop, helping soften it. This medication is taken orally on an “as needed” basis and side effects may include stomach pain, diarrhea, or cramping.

Dulcolax (bisacodyl)

This medication is used to treat constipation associated with chemo or other medications. It helps stimulate the contraction of the bowels, which moves stool through the digestive system. This medication is taken orally on an “as needed” basis and side effects may include abdominal pain or cramping and diarrhea.

Miralax (polyethylene glycol 3350)

This medication is used to treat constipation associated with chemo or other medications. It works by drawing water from the colon into the stool, softening it, and helping it to pass more easily through the digestive tract. This medication is taken orally on an “as needed” basis and side effects may include diarrhea, stomach pain, bloating,  gas, and nausea.

Senokot (senna)

This medication helps stimulate the contraction of the bowels, which moves stool through the digestive system. This medication is taken orally on an “as needed” basis and side effects may include abdominal pain/cramping, nausea, and diarrhea.

Dietary recommendations

While medications are often important for managing constipation induced by chemo, intestinal blockages and pre-meds, there are also important dietary factors to consider to help regulate bowel function. If you are experiencing constipation, make sure to increase your fluid intake, consider gentle exercise and adjust the amount of fiber in your diet. 

Skin creams and mouthwashes

Doxycycline

Doxycycline is an antibiotic shown to potentially prevent (or reduce the severity of) skin rashes caused by the EGFR inhibitors Vectibix (panitumumab) and Erbitux (cetuximab). It is prescribed as an oral tablet and should be taken according to the instructions provided by your oncologist. The most common side effects experienced are upset stomach, loss of appetite, and mild diarrhea.

Emla cream (lidocaine)

This cream is often prescribed to patients with a port to help minimize pain when the nurse inserts the needle to access your port. If you are having your port accessed, apply a generous amount of cream to the area before leaving your house, ideally about an hour before your port is accessed. Cover it with plastic wrap or a Tegaderm type dressing to hold the cream in place and keep it from drying out or rubbing off on your clothes. When your nurse accesses your port, you should barely feel the needle going in.

Magic mouthwash

Magic mouthwash is a general term that refers to a collection of different types of mouthwashes that are usually produced by compounding pharmacies to help relieve mouth sores caused by chemo. While there is no standard formula, magic mouthwash often contains some of the following ingredients:

  • Local anesthetics (such as lidocaine) to reduce pain
  • Corticosteroids to reduce inflammation
  • Antihistamines to reduce swelling
  • Antibiotics to reduce the chance of bacterial infection
  • Antifungals to reduce the chance of fungal infections such as thrush
  • Antacids to help coat the mouth and throat and form a barrier against the sores
  • Mucosal protective agents to provide a barrier to protect the underlying mouth sore from irritation by foods and drinks
  • Flavoring to improve the taste

The main side effects of magic mouthwash include temporary tingling or burning, temporary changes in taste, and dry mouth.

You can also try a mix of baking soda, salt, and water for quick and easy relief.

Moisturizers

Good quality moisturizers can be very helpful for managing skin rashes due to Vectibix (panitumumab) and Erbitux (cetuximab), hand-foot syndrome caused by 5FU intravenous chemo, and Xeloda (capecitabine) tablets and radiation-related skin issues. Look for good quality, unscented creams and moisturizers. Your oncologist should be able to make a recommendation if you need one.

Antihistamines

Allercalm, Allerief, Hayleve, Piriton, Pollenase (chlorophenamine)

This medication can be used before chemo infusions for patients that experience mild allergic reactions to certain drugs. Your oncologist may recommend this medication if this situation applies to you. It is important to follow the instructions given to you by your team for taking this medication. Some side effects that people may experience include drowsiness, headaches and dry mouth.

Benadryl (diphenhydramine)

This medication can be given prior to chemotherapy to help prevent allergic reactions to certain drugs. It has also been shown to help prevent nausea and vomiting related to chemo when given in combination with other pre-meds. It can be given orally or by IV. The most common side effects of Benadryl include drowsiness, dry eyes, dry mouth, constipation and restlessness.

Claritin (loratadine)

This medication is sometimes recommended to patients on Neulasta/Neupogen injections to help boost neutrophil counts. These injections can cause bone pain, and Claritin can be taken orally on an “as needed” basis to help. If Claritin alone doesn’t work, it can be combined with Aleve (naproxen).

Singulair (montelukast)

This medication is given to patients to help prevent allergic reactions due to chemotherapy. It is given orally. If you are prescribed this medication by your oncologist, it is important to take it exactly as instructed to allow you to receive chemotherapy safely. The most common side effects of Singulair are abdominal pain, nausea, diarrhea and headaches, although these are not very common.

Acid reflux and heartburn medications

Bentyl (dicyclomine)

This medication is often used to treat abdominal pain and cramping due to chemo. It is usually taken orally on an “as needed” basis. Some possible side effects include dry mouth, upset stomach, constipation, loss of appetite, drowsiness and headaches.

Pepcid (famotidine)

This medication is used to help control heartburn and acid reflux. It works by reducing the amount of acid that your stomach produces. It is usually taken orally at home on an “as needed” basis. Very few patients experience significant side effects on this medication, but some may experience diarrhea, constipation, headache, dizziness.

Prilosec, Losec (omeprazole)

This medication is used to help control heartburn and acid reflux caused by chemo. It works by reducing the amount of acid that your stomach produces. It is usually taken orally at home on an “as needed” basis. Very few patients experience significant side effects on this medication but some may experience constipation, nausea, diarrhea and headaches.

Selanz (Iansoprazole)

This medication is used to help control heartburn and acid reflux caused by chemo. It is usually taken orally at home on an “as needed” basis. Although this medication is very well-tolerated by most patients, some people may experience stomach upset, constipation, diarrhea, headache and drowsiness.

Pain medications

Pain relief medication may be recommended to patients on chemo to help deal with pain caused by tumors or also bone/joint pain and other types of pain that may be caused by chemo drugs or targeted therapies.

Tylenol (acetaminophen)

Tylenol is an over-the-counter medication used for mild pain relief. If you have any issues with liver function, it is best to check with your oncologist before using this medication, as long-term use of this drug can cause liver problems. Never exceed the recommended 24-hour dose listed on the package.

Non-steroidal anti-inflammatories (NSAIDs)

NSAIDs like Advil, Motrin (ibuprofen) and Aleve (naproxen) work by reducing inflammation in the body and can help relieve mild to moderate pain. Check with your oncologist before starting any new medications and never exceed the dose listed on the package. Long-term use of these drugs can cause stomach ulcers and bleeding as well as kidney issues.

Anticonvulsant medications

These are very strong prescription medications, traditionally used in conditions such as epilepsy that interrupt pain signals to the brain. They have been shown to be very effective in treating nerve pain and should only be prescribed when absolutely necessary. Some examples include Gabarone (gabapentin) and Lyrica (pregablin). The most common side effects of these medications are drowsiness, dizziness and nausea.

Corticosteroid medications

These are very strong prescription medications that work by reducing swelling and inflammation in a particular part of the body. They should only be prescribed when absolutely necessary. Some examples of corticosteroid medications are methylprednisolone, prednisolone, and prednisone. Side effects may include weight gain, mood changes, difficulty sleeping, weakened immune system, thinning of the bones and skin and high blood sugar levels.

Opioid medications

These are very strong prescription medications that change how your brain perceives pain signals. They can be very addictive so should only be prescribed when absolutely necessary, ideally for a limited period of time. Codeine, fentanyl, hydrocodone, oxycodone and morphine are some examples of opioid medications. Side effects of these medications include drowsiness, nausea/vomiting, constipation, itching, breathing problems and addiction.

Want to learn more about side effect medications?

Check out the Chemo Experts website for more information on premeds and to look up individual medications, doses and side effects.

Want to learn more about premeds?

Join one of our COLONTOWN Facebook groups:

  • Corner Cupboard is a place to discuss treatment side effects and management

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: May 18, 2022

Chemotherapy And Targeted Therapies

Long-term chemo tips and tricks

If you’ve been diagnosed with stage IV colorectal cancer, chemo will be an important part of your treatment plan.

Just a note, this section includes sensitive topics such as prognosis, palliative care, and end of life decision-making. Take a moment and think about whether or not you’re ready to read about these things — and come back when you’re ready.

For some stage IV patients, chemotherapy can shrink tumors enough for them to qualify for surgery or other localized treatments. This sometimes allows these patients to reach NED (no evidence of disease) status permanently, or for a period of time long enough that they can take a break from treatment.

However, this is not the case for everyone. Most stage IV patients will be on chemotherapy for an extended period of time.

If this situation applies to you, you’re probably wondering how to cope and continue living your life. If you haven’t yet started treatments, you may envision weeks, months or even years of feeling ill all the time.

Luckily, for most people, chemo is not like what you see in the movies. You will probably have a few “bad days” each cycle, where you may feel fatigued, nauseous or just generally a bit icky — but your oncologist should be able to significantly alleviate the worst side effects using premeds (drugs given before treatment). 

In addition, most patients feel pretty well on their “off chemo” weeks, and are able to get out and do things they enjoyed before their diagnosis. 

Patients who experienced pain or other tumor-related symptoms prior to diagnosis may actually feel better after starting chemo, as chemo can shrink tumors and help alleviate certain symptoms.

All of this being said, starting a long-term chemotherapy regimen will be a significant change for most people. But we’ve got you covered! Here are some tips and tricks to help you stay on top of everything and maintain a good quality of life while on treatment.

Get organized

If you are on FOLFOX, FOLFIRI or FOLFOXIRI, you’ll be having chemo infusions every two weeks. If you’re on CAPOX, you’ll have infusions every three weeks.

After a few cycles, you will begin to notice patterns in how you feel. This can be different for everyone. Some people feel okay on infusion day and a couple days afterwards, but crash after they stop taking steroids they were prescribed for nausea. Other people feel poorly on infusion day, but slowly recover as the days go on.

You’ll also notice patterns in side effects. There are many potential chemo side effects, and it’s unlikely that you’ll experience all of them. Over time, you’ll figure out which side effects are most common to you, how long they usually last, and how best to manage them. To help you keep track, it’s a good idea to keep a journal where you write down how you’re feeling and how your side effects change from one day to the next.

Once you figure out how you react to your particular chemo protocol, you can start to get organized. Here are some tips:

  • Plan activities during days or times of day that you’re likely to have more energy
  • If you’re working, let your employer know which days you will need to take off, work from home, work fewer hours, or take more breaks
  • Make a list of things that need to be done on the days you know you won’t be feeling well, and delegate them to family or friends
  • If you have limited support from those around you, try outsourcing. Hire a weekly cleaner, order take out, prepare freezer meals on your off weeks, get groceries delivered, and remind family and friends that you may be unavailable to answer phone calls or text messages when resting

Lean on your support system

If you have support from loved ones… delegate, delegate, delegate! Make a list of the things you need help with, and ask your family and friends to help get stuff done. 

It’s not always easy to ask for help, but don’t be shy. Most people like being useful, and the people around you are often more than willing to pitch in. 

Here are some things you can ask others to help with:

  • Cleaning, laundry, gardening, other household chores
  • Childcare
  • Preparing meals
  • Grocery shopping
  • Picking up prescriptions from the pharmacy
  • Gift vouchers for food delivery services, cleaning services, or babysitting services
  • Rides to chemo appointments
  • Company while you get chemo infusions, if you like having a friend with you (if your center allows it). Even if you can’t have someone there with you in person, consider making a call or video chat date

Communicate with your team

If you have stage IV CRC, your treatment plan will be a marathon, not a sprint. It’s important to have regular discussions with your team about the goals of your care. This can help you know what’s coming, and give you the opportunity to seek a second opinion if you’re unsure your team’s approach is right for you.

Many patients initially respond quite well to first- and second-line FOLFOX and FOLFIRI. If you’ve recently started first-line treatment, or a new line of treatment, the goal may be to help you acheive shrinkage and qualify for resection surgery. This may be the case particularly if you have ogliometastatic disease — which means stage IV cancer with limited metastases in a small number of organs.

If you have more widespread metastases, or painful symptoms related to a partial bowel blockage or tumors pressing on nerves, the goal may be to shrink or stabilize the tumors in order to reduce pain and keep symptoms under control.

If you have experienced tumor progression on first-line treatment, and have been put on Lonsurf or Stivarga, the goal often changes from shrinkage to stability. This means aiming to slow down disease progression.

In order to plan ahead and know what to expect, it’s important to understand why the treatment is being recommended. One way to approach this topic with your oncologist is to ask questions, including:

  • What are you hoping to acheive with this treatment (shrinkage, stability, symptom control, etc)?
  • What is the best case scenario?
  • What is the worst case scenario?
  • What is the most likely scenario?

If you aren’t happy with the answers, it may be a good time to seek a second opinion. You may find another team who recommends something different, or the second opinion will confirm your original team’s approach and give you peace of mind that you’re getting the best care possible.

Plan ahead

If you’re on a long-term chemo plan, it’s important to understand that most patients will develop resistence to specific chemo drugs at some point. This means that they can stop working. For this reason, it’s a good idea to think about the next steps in your treatment.

As mentioned earlier, many patients respond quite well to FOLFOX and FOLFIRI, and may acheive shrinkage or long periods of stability at first. However, these drugs may stop working. As you move to second-, third- and fourth-line drugs, the goal often shifts from shrinkage to maintaining stability.

For this reason, it may be a good idea for stage IV patients to start researching clinical trials once they’ve progressed to second-line treatment. The process of researching and applying for clinical trials can be quite time consuming — so it’s best to do this when you have lots of time and options. Once patients experience tumor progression on second-line drugs, some patients alternate clinical trials with Lonsurf and Stivarga. This gives them the opportunity to participate in more trials as extra lines of therapy.

Try palliative care

Although chemo side effects can be slightly different for everyone, they can build up and become worse over time. Don’t suffer in silence! If you’re experiencing symptoms that significantly affect your quality of life, speak to your team. They can adjust premeds and prescribe supportive meds to help you manage unpleasant symptoms and side effects. Research has demonstrated that promptly reporting symptoms can lead to better management and quality of life for patients.

If at any point during your treatment you feel like your side effects are not well managed, you can request a referral to a palliative care specialist. Many patients are reluctant to do this because they associate palliative care with end-of-life care. This is not the case. Palliative care specialists help patients manage symptoms at any point during their health journey. They can be very helpful and offer in-depth knowledge on side effect management and other supportive care. 

For more information on what a palliative care specialist does — and a video on how palliative care might benefit you — check out our Healthcare Team Roundup section.

Consider taking a break

If you are on long-term chemo or “chemo for life,” it’s important to learn how to balance treatment with quality of life. Many stage IV patients take occasional, short chemo breaks to go on vacation, attend family weddings or other important events. Some patients may take short breaks to help give their bodies time to recover from side effects.

If you feel that you would benefit from a short treatment break, the best thing to do is speak honestly with your oncologist and ask for their recommendation. In many cases, a short break will not make a significant difference in your overall prognosis — but it’s always important to consult with your oncologist.

It’s ok to stop treatment

This is a very sensitive topic for many people. It’s important to remember that as the patient, decisions about your care ultimately lie in your hands. If you come to a point where you feel you would like to stop treatment for any reason, it is your right to do so.

Many patients feel like stopping treatment is the same as giving up. They may be worried about disappointing family and friends. This journey is yours, and decisions related to your treatment are yours alone. Making the decision to stop treatment is never an easy one, but know that you are not giving up. Your loved ones are walking this path with you, but you should feel comfortable knowing you are making the decision that is best for you. 

Want to learn more about managing treatment long-term?

Join one of our COLONTOWN Facebook groups:

  • In Four Corners, stage IV patients can ask questions, get advice, and find support about treatments, living with cancer, and so much more
  • Stage IV carepartners group. Carepartner equivalent of Four Corners.

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: May 18, 2022

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:

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

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 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 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!

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.

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

Questions to ask your oncologist

Here is a list of questions you may want to ask your oncologist about your chemotherapy treatment:

  • Which treatments will I be getting? Which drug or chemo regimens will they include?
  • Why have you chosen these drugs?
  • How many chemo cycles will I have? What does one cycle consist of? 
  • What is the goal of the chemo treatment?
  • Are there any other ways to achieve the same result?
  • How does it fit into my treatment plan? Will I be having radiation or surgery?
  • How likely is it that these chemo drugs will work? What results have you seen in other patients?
  • How will I know if treatment is working?
  • What happens if chemo doesn’t work or stops working?
  • How will I be getting chemo?
  • Will I be getting a port or PICC line?
  • Where will I get my treatments?
  • How long will each treatment last?
  • What can I expect on infusion day?
  • What do I do if I have any problems with my 46-hour pump?
  • Is icing to reduce oxaliplatin-induced neuropathy something your cancer center/infusion clinic supports?
  • Will I be able to drive myself to appointments?
  • What side effects should I expect and what can I do to be prepared?
  • What pre-meds will I get on infusion day and do they have any side effects?
  • Are you prescribing any medications to help deal with side effects?
  • Is there anything else I can do to help manage side effects?
  • Is there a number I can call if I need to speak to someone out of hours?
  • How do I know when to call your office and when to call for emergency services?
  • Are there any severe side effects that I should be aware of?
  • Will I be able to carry out normal activities (work, driving, housework, exercise, sexual activities, etc)?
  • Will chemo affect my ability to have children? If so, are there any precautions I can take to preserve my fertility?
  • Is there anything that I should do to prepare for treatment to help maximize effectiveness and decrease side effects?
  • Do I need to change my diet?
  • Do I need to make any changes to any prescription meds or supplements that I already take?
  • Are there any clinical trials that would be suitable for me?
  • Can you assist in helping me get a second opinion?
  • If I have stage IV CRC, will you help me find clinical trials I’m eligible for?
  • When it comes to searching for clinical trials for stage IV patients, what advice do you have for me?
  • Can you help me put together a care team including surgeons and radiation oncologists?
  • If I have multiple specialists to take care of my cancer, who will be the point of contact for me?

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

How does chemo fit into my treatment plan?

The treatment plan that your oncologist or care team recommends will depend on a number of factors:

Metastatic colorectal cancer has 4 total lines of chemotherapy. If you experience tumor growth on the first line, you move on to the second. It’s important to know that as you go through the lines of treatment, chemotherapy can become less effective. Therefore your treatment goals may change as well, from aiming for tumor shrinkage to stability. It’s a good idea to speak with your oncologist on a regular basis about your care goals. 

Colon cancer

This chart shows the standard treatment protocols for Stages I to III following surgery for colon cancer:

Image: NCCN Guidelines for Colon Cancer

Stage I

If you are diagnosed at stage I, you’ll have surgery to remove the primary tumor, followed by regular monitoring. Chemotherapy is not recommended to treat stage I tumors.

Stage II

If you are diagnosed at stage II, you will have surgery to remove your tumor. Chemotherapy is not recommended for low-risk stage II tumors, particularly MSI-H tumors. If your tumor is MSS and classified as high risk for recurrence based on surgical pathology, FOLFOX or CAPOX chemotherapy may be recommended.

Stage III

If you are diagnosed at stage III, you will have surgery to remove your primary tumor. Many patients have surgery first, followed by 3 to 6 months of FOLFOX or CAPOX, depending on your risk for recurrence. Patients with higher risk for recurrence will benefit from a longer course of chemotherapy.

If surgery is not an option based on the size or location of the tumor — or other health issues — you may have chemotherapy or radiation. If those treatments succeed at shrinking the tumor, then surgery may be possible.

If your cancer is MSI-H, you may be eligible for immunotherapy. 

Diagnosed: November 2021

Stage: III

Type: Colon cancer, with four lymph nodes affected

I was diagnosed with stage 3 colorectal cancer in November 2021. I had hand-assisted laparoscopic surgery on November 22, 2021 to remove a 10-inch tumor in my sigmoid colon. I had 4 lymph nodes affected, but the tumor had not gone completely through sigmoid wall.

I was released on Thanksgiving day and started FOLFOX on January 2, 2022. I have just had my third cycle of chemo.

After my first cycle, I immediately noticed increased cold insensitivity in my fingers and toes. I have read posts about icing, but I didn’t think that I needed to do it. However, it seems that the cold insensitivity is a cumulative effect, so I may start icing at some point.

Unfortunately, I had Covid recently, which delayed my last treatment by a week. But, overall I am doing well and my oncologist is very positive about my prognosis. Although I am still early on in treatment, I’m pretty sure it’s gonna take more than this to take me out. But for now, I just try to focus on staying positive and getting through my treatments.

Stage IV

If you are diagnosed at stage IV, you will probably have chemotherapy as your first treatment. This is usually FOLFOX, FOLFIRI or FOLFOXIRI plus a targeted therapy (Avastin, Vectibix or Erbitux, depending on your tumor biomarkers). However, some patients may be offered immunotherapy as a first-line treatment.

Your doctor may describe your disease as “incurable.” However, there are many stage IV patients in COLONTOWN who have got to NED (no evidence of disease) status.

Listen to their stories here:

 

Here are the chemotherapy options for stage IV CRC:

Regardless of your treatment plan, you’ll be monitored with scans every two to three months to assess how treatment is working. If you have tumor growth while on chemo, your oncologist will probably switch you to a different chemo regimen.

For example, if you have tumor growth while on FOLFOX, you may be switched to FOLFIRI. If you have progression on both FOLFOX and FOLFIRI or FOLFOXIRI, you’ll probably be offered either Lonsurf or Stivarga. Lonsurf is often given with Avastin.

Following an initial three to six months of chemo, some patients have a good response and significant tumor shrinkage. Depending on the location, number, and size of your tumors, you may be offered surgery at this point.

Many stage IV patients are able to manage their disease very well, over a long period of time, using a combination of chemotherapy, targeted drugs, surgery and other local therapies such as radiation and ablation. 

The following chart shows some common treatment protocols involving surgery if you’re diagnosed with stage IV colon cancer:

Rectal cancer

Stage I

If you are diagnosed at stage I, you’ll have surgery to remove the primary tumor, followed by regular monitoring. Chemotherapy is not recommended to treat stage I tumors.

Stage II and III

If you’re diagnosed at stage II or III, most oncologists follow the total neoadjuvant therapy (TNT) approach. This means you’ll probably have four months of FOLFOX or CAPOX chemotherapy, followed by long course chemo-radiation (or short course radiation) and lastly, surgery to remove the tumor. You can have chemo or chemo-radiation first.

For a subset of patients with tumors in the upper rectum, they may have surgery first (similar to stage III colon cancer patients), then have three to four months of FOLFOX or CAPOX chemotherapy. Some patients may get only 5FU for six months, instead of FOLFOX or CAPOX.

A subset of rectal cancer patients may receive four months of FOLFOX or CAPOX chemotherapy only as part of TNT, and may be able to skip radiation and go straight to surgery.

Some patients following the TNT approach have what is called a “complete response” to treatment. This means that the tumor completely disappears from scans! If this happens, some patients may not have surgery, and follow a “watch and wait” approach to monitor their condition. These patients may have surgery only if there is a local recurrence. 

If your cancer is MSI-H, you may be eligible for immunotherapy. A recent immunotherapy clinical trial shows a 100% complete clinical response for stage III patients with MSI-H rectal cancer. This is a remarkable result! It’s strongly recommended that all stage III rectal cancer patients know their MSS/MSI-H status. If your tumor is MSI-H, bring up immunotherapy with your care team. If you have a successful response to immunotherapy, you may not have chemo, radiation or surgery at all. 

Want to learn more about the watch and wait protocol? Watch this Doc Talk with Dr. Chakrabarti:

And check out this DocTalk where Dr. Kim gives an overview of short-course radiation and the watch and wait approach to rectal cancer:

 

Diagnosed: March 2021

Stage: IIIB

Type: Rectal cancer, with three involved lymph nodes

Diagnosed rectal cancer, 3cm tumor, 11 cm from anal verge. 3 lymph nodes appeared to be enlarged, micro satellite stable. Staged 3b. 3/3/21.

Radiation: short course, 5 days. Not negative side effects.

Chemo: Capox, 6 rounds. Xeloda, no negative side effects. Oxaliplatin, Severe side effects. Infusions 3-6 done at 50% of original dose.

Signatera: Started after 2nd round of Capox. Showed negative after 3rd round, continued to be negative.

Results: Complete clinical response to radiation/chemo.

Surgery: Opted to NOT have LAR surgery. Told that my chances of a reoccurrence of cancer in same location was 20-25%. Chances of cancer metastasising is the same regardless of having surgery or not.

Treatment plan: Watch and wait (close surveillance).

First two years, MRI and Flex Sigmoidoscopy every 3 months, CT scan every 6 months, colonoscopy annually. I will also continue ie with Signatera testing.

A different approach involves long course radiation with chemotherapy, or short course radiation followed by surgery and six months of chemotherapy. Your team will help decide which is the right approach for you.

Stage IV

If you are diagnosed at stage IV, you will probably have chemotherapy as your first treatment. This is usually FOLFOX, FOLFIRI or FOLFOXIRI plus a targeted therapy (Avastin, Vectibix or Erbitux, depending on your tumor biomarkers). However, some patients may be offered immunotherapy as first-line treatment.

Your doctor may describe your disease as “incurable”. However, there are many stage IV patients in Colontown who are outliving their prognoses and have reached NED (no evidence of disease) status.

Regardless of your treatment plan, you’ll be monitored with scans every two to three months to assess how treatment is working. If you have tumor growth while on chemo, your oncologist will probably switch you to a different chemo regimen.

For example, if you have tumor growth while on FOLFOX, you may be switched to FOLFIRI. If you have progression on both FOLFOX and FOLFIRI or FOLFOXIRI, you’ll probably be offered either Lonsurf or Stivarga. Lonsurf is often given with Avastin.

Following an initial three to six months of chemo, some patients have a good response and significant tumor shrinkage. Depending on the location, number and size of your tumors, you may be offered surgery at this point. 

Many stage IV patients are able to manage their disease very well, over a long period of time, using a combination of chemotherapy, targeted drugs, surgery, and other local therapies such as radiation and ablation.

Diagnosed: May 2017

Stage: IV

Type: Colon cancer, liver metastases

My name is Jessica, and my husband Will was diagnosed with Stage 4 colorectal cancer (CRC) in May 2017 when he was 48 and our kids were 7 and 10. Will developed a sharp pain in his side on a Sunday night and saw his doctor Monday morning. His bilirubin was 2.0 and his doctor sent him for an ultrasound, thinking it was gallstones. OMG! Gallstones! How terrifying! After the ultrasound, Will called to tell me that the tech said his gallbladder was fine but his liver was covered in masses. I thought I would break into a thousand pieces. For the next week, while no one used the word ‘cancer,’ I made appointments at [two cancer centers]; Will had a colonoscopy, CT scan, and biopsy- confirming Stage 4 CRC with “innumerable metastases to the liver.” Our oncologist told us Will needed “chemo for life,” which would give him maybe as much as a year to 18 months. The scans showed every slice of liver was covered- over 100 tumors… and the salty taste in the back of Will’s throat was the beginning of liver failure. 

He scheduled port placement two days later and Will’s first chemo three days after that. I asked the oncologist how Will could be cured, and he shook his head. I pushed him, “Will walks back in your office in five years, cancer free. Tell me how he got there.” He sighed and said, “IF he had an extraordinary response to chemo and IF we add in either Vectibix or Avastin and he had an extraordinary response to them and then IF the tumors shrank in such a way as to clear a section of his liver and IF he could then have a liver resection…” he trailed off and looked at me. “You have to understand that with each ‘and IF’ the window gets smaller and, for your husband, there are too many Ifs and the window is closed.”

I don’t say this to blast an excellent oncologist, who probably saved Will’s life by convincing us to cancel our [other cancer center] appointment so Will could start chemo immediately… but I think many oncologists veer away from offering hope because they’re scared of offering “false hope.” Hope is essential. Any person diagnosed with any cancer has a chance at beating it. You never know if you’re going to be the person with the astounding response to chemo or who finds just the right trial at just the right time. 

I obsessively researched “How to cure Stage 4 CRC” – frozen lemons, special salads, soursop, etc. I ended up with seven single spaced pages and then I set out to disprove each item. Anything I couldn’t disprove, that had real science behind it, we put Will on (Fucoidan+AHCC, Resveratrol, Theracurmin, Milk Thistle, Beta Glucan, low dose aspirin, Vitamin D, InflamAway). We also switched to a diet that was anti-inflammatory, anti-glycemic, vegan + fish, changed his sleep patterns so he slept “during the dark hours,” stopped watching action movies (too much cortisol) and only watched comedies (to release oxytocin.) The books I found helpful were The End of Illness, Integrative Oncology, Radical Remission, Being Mortal, Complications, Healing Foods and Love, Medicine and Miracles. I was so lucky to find wonderful Tom Marsilje’s blog, The Adventures of Living Terminally Optimistic, and through him, to find COLONTOWN.

Will’s first scans showed a 70% reduction and we were excited to meet with a surgeon, but our oncologist said, “No one who started with your volume of disease in their liver has ever had successful surgery.” At our second opinion appointment we heard the same thing. But our third appointment meeting at [another cancer center] was completely different – the surgeon took Will on as a patient and immediately sent us to see a wonderful liver surgeon. When I told him what our previous doctor had said, this surgeon told me there just wasn’t recent enough data to know but “if that’s true, then maybe your husband will be the first!” Will’s tumors continued to shrink, and the […] surgeons discussed surgery at every scan. Finally, Will had a combined liver and colon resection in January 2018. He had 6 rounds of “clean up” chemo after but since the pathology showed the removed liver tumors were necrotic, his surgeon considered him NED after the surgery. 

He just had his most recent scans last Monday, October 12, 2020, and he’s now been NED for 2 years and 9 months!!I know we got incredibly lucky; I know that we didn’t “do” this. In some ways, I can’t make sense of it, but I’d like to share a few things I learned along the way:

  1. Your oncologist is WAY more than just a prescriber of chemo. You need to find someone you can really communicate with, someone who listens to and fights for you.
  2. You deserve to feel as good as humanly possibly while you’re going through chemo and feeling better will aid you in your fight. See a nutritionist, an acupuncturist, a palliative care doctor, whatever you need. Don’t assume that because you’re on chemo, of course you’re going to feel terrible. Keep advocating for yourself.
  3. “Not operable” means “Not operable right now.” Nobody knows how you will respond to treatment. We always tried to have back-up plans for our back-up plans. Will only had 4 mutations, and none were actionable, so we didn’t ever have any great trials in our back pocket- but I would ask our doctor what the next step would be if the chemo stopped working tomorrow, and I always tried to show up with a couple of new trials to chat about.
  4. Educate yourself. This not only empowers you, but it affects the way medical folks interact with you. I found this to be especially helpful in the ICU after Will’s surgery.
  5. This is obvious, but I have really recognized that life is finite and we have no idea when ours will end. I’m learning to embrace the NOW, to love that “this moment” Will is healthy, “this moment” we are all together. Will is a great protector of his privacy, not from all of you wonderful people but from the powers that be at Facebook, so I can’t send photos of our loving family. BUT I can send these pics of Scout, the husky that we adopted once Will was out of treatment.

Want to chat with other people in the same stage as you?

Join one of our COLONTOWN Facebook groups:

  • 1st Avenue (Stage I patients)
  • 2nd Avenue (Stage II patients)
  • 3rd Lane (Stage III patients)
  • Four Corners (Stage IV patients)
  • NEDS Ballroom (Patients with current or past NED — no evidence of disease — status)

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: May 18, 2022

Braftovi: Side effects

Encorafenib (Braftovi) is a targeted therapy, which is used in combination with cetuximab to treat patients with BRAF mutations. This drug combo is often referred to as the “Beacon doublet” or “doublet therapy.” Generally, the side effects from Braftovi are mild — although patients will probably experience side effects from cetuximab. 

Here are some side effects you may 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 treatment 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

Fatigue

Feeling tired is one of the most common side effects for people going through 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

Bone and joint pain

Braftovi 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

Skin changes

You might experience extremely dry skin, resulting in painful cuts on your hands and feet. Apply a good moisturizer throughout the day, particularly after washing your hands or washing dishes. Many patients on this drug combo also experience skin rashes — although that side effect is caused by cetuximab, rather than Braftovi.

Vision changes

Some patients on Braftovi experience changes in their vision. This can include loss of vision, blurred vision, eye pain, redness or swelling. If you experience any of these side effects, contact your team as soon as possible. It’s important that they assess the severity of your symptoms.

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

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

Join one of our COLONTOWN Facebook groups:

  • Join Tom & Con’s BRAF+ Clinic to discuss all things related to BRAF mutations and treatment options
  • 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: January 16, 2023

Erbitux/Vectibix: Side effects

Cetuximab (Erbitux) and panitumumab (Vectibix) are not chemotherapy drugs. They are a type of targeted therapy called a monoclonal antibody, which may be given to stage IV patients alongside chemo. However, Erbitux and Vectibix are not effective in patients with RAS mutations. They also are not effective in patients with BRAF mutations, unless given with the BRAF inhibitor envorfenib (Braftovi).

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…

Skin rashes

The most common Erbitux/Vectibix side effect is an acne-like skin rash. Your oncologist may prescribe an antibiotic, such as doxycycline, to help alleviate the rash. A good moisturizing cream, such as Aquaphor, can help.

Nail changes

You might have some sensitivity and inflammation around your nail beds. Left untreated, this can cause painful ingrown nails. Wearing open-toed shoes whenever possible can help. Speak to your oncologist so they can recommend treatment specific to you.

Dry and cracked skin

You might experience extremely dry skin, resulting in painful cuts on the hands and feet. Apply a good moisturizer throughout the day, particularly after washing your hands or washing dishes.

Facial hair growth

A common side effect is facial hair growth, especially on the upper lip, chin, eyelashes, and eyebrows. If this hair is unwanted, you can shave, pluck, or wax.

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!

Magnesium depletion

You might experience weak, restless legs or cramping. This can be caused by low magnesium. Your healthcare team will monitor your magnesium levels and recommend supplements if needed.

Here are some tips:
  • Try epsom salt baths
  • Eat foods rich in magnesium such as dark chocolate, avocados, nuts, seeds, legumes, whole grains, tofu, salmon, bananas and leafy greens

Diagnosed: April 2021

Stage: IV

Type: Rectal cancer, liver metastases

I was diagnosed stage IV with mets to my liver in April 2021. After a liver biopsy, it was determined that my CRC was KRAS wild-type. This enabled me to start Vectibix in June 2021, when my chemo began (FOLFOX).

The Vectibix infuses for an hour. It is known to cause a rash in a very high percentage of people, so my oncologist has me taking a precautionary antibiotic (doxycycline). Vectibix also gives you “sun sensitivity” which can make your rash even worse.

My first few rounds of Vectibix were OK, nothing too bad. However, I developed HORRIBLE canker sores, had peeling, bleeding lips, rashes on my calves and a very painful rash on my upper chest that I think was sun-related.

My oncologist was able to prescribe Valtrex for the canker sores, which cleared them up in a day. Magic mouthwash (Benadryl, lidocaine, milk of magnesia) can also help. We reduced my dose in half at about round 4, and I really have not had too many issues since then. My lips and mouth can get a little sensitive but nothing like what happened when it was full strength!

At 9 rounds, my liver tumors had reduced by 75% — a great response to FOLFOX & Vectibix. My rectal tumor was only a “scar” (I did have 5 days of short course radiation which also contributed to this result).

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

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

Avastin: Side effects

Avastin — or Mvasi, a biosimilar — is not a typical chemotherapy drug. It’s a type of targeted therapy called a monoclonal antibody, which is often given to stage IV patients alongside chemo. Side effects from Avastin are usually very mild.

Side effects can include:

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…

Increased risk of bleeding

Avastin slows down a tumor’s ability to form new blood vessels — so the drug can also interfere with normal blood vessel function and cause bleeding.

Many patients experience nose bleeds while on Avastin. Do your best to avoid cuts and scrapes. If you do get cut, make sure to clean the wound and apply pressure to help stop the bleeding quickly. Most patients view nosebleeds as a minor annoyance, but it’s a good idea to carry some tissues around with you, just in case!

Increased risk of bowel perforation

Because Avastin interferes with VEGF signaling, it increases the risk of getting a hole in your bowels (also known as perforation). 

Avastin can also cause fistulas, which are abnormal channels or passageways between body parts. This is a rare but important side effect, so not everyone may be able to get Avastin

Delayed wound healing

Avastin can cause wounds to heal slower — so if you have had a port placed recently, or any other type of surgery, your oncologist will probably hold off on Avastin until you have fully recovered.

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.

Kidney problems

Avastin can interfere with kidney function, and cause kidneys to excrete protein into the urine. Your team will monitor this closely to make sure your kidneys are working well, and make adjustments to your treatment as needed.

Low platelets

Avastin can cause your platelets to drop. Platelets help your blood clot — so low levels can cause bruising, nosebleeds and sensitive gums.  Avastin is usually given with other chemotherapy, which can contribute to low platelets. Your care team may decide to stop Avastin if your platelets stay low and they suspect that Avastin is responsible.

Bone and joint pain

Avastin 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

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

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: May 30, 2023

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:

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 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 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

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 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 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

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.

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: February 26, 2023

Lonsurf: Side effects

Lonsurf is usually used as a third-line chemotherapy drug, after a patient has had tumor growth on FOLFOX and FOLFIRI or FOLFOXIRI. Studies have shown that Lonsurf may be more effective when given with Avastin. So sometimes it can be difficult to tell which side effects come from which medications!

Lonsurf can come along with a bunch of unpleasant side effects. If you’re on a Lonsurf 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…

Want to learn more about Lonsurf?

Click here to go to the Lonsurf website. There are lots of patient resources, including information about the drug, a brochure for carepartners, a starter kit, and other helpful resources.

Nausea or vomiting

This is an extremely common chemotherapy side effect. Nausea usually lasts for a few days to a week after treatment.

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-treatment 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

Diarrhea

Lonsurf can cause loose bowels. You may experience this at any point during your treatment, even up to 10 days post-treatment.

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

Stomach cramps

Some patients report experiencing stomach cramps with Lonsurf.

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

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.

Loss of appetite

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
  • Try eating 5 to 6 small meals or snacks throughout the day
  • Stay well hydrated. Drinking plenty of water and receiving fluids after your treatment can help with nausea
  • Choose foods that sound appealing to you. If you’re craving Cheetos, follow your gut
  • If this is a persistent problem, speak to your team. They may be able to prescribe medication to help stimulate your appetite

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

Fever

Lonsurf can be particularly hard on blood counts and platelets, so fever may be a common side effect.

Here are some tips:
  • Make sure to drink plenty of fluids and stay well hydrated
  • Get plenty of rest
  • Monitor your temperature on a regular basis, and keep an eye out for signs of infection
  • Call your doctor if you have signs of infection, or a high fever that does not improve with Tylenol or Advil

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.

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

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

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

Join one of our COLONTOWN Facebook groups:

  • In the Long Haulers Hollow group, we discuss all things related to Lonsurf chemo
  • 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.

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: February 26, 2023