Content Overview
- Overview
- Life During a Continuous FOLFOX Infusion: Do's and Don'ts
- FOLFOX and Work
- Paying For FOLFOX Treatment
- FOLFOX: How Treatment Is Delivered (Infusion, Continuous Infusion)
- FOLFOX and Food
- How Chemotherapy Works
- Ports: Defined, Advantages, Risks, Care Of
- FOLFOX Variations
- FOLFOX Side Effects: What They Are And How To Cope With Them
- The Drugs Which Make Up FOLFOX
- How To Prepare For FOLFOX Infusions
- Implanting A Port
- What Happens During a Continuous FOLFOX Infusion
- What Happens During FOLFOX Infusion At The Treatment Center
- What NOT To Do While On FOLFOX Treatment
- Red Flags to Watch For While Undergoing FOLFOX Treatment
- Living With A Port When Not Being Infused
- Removal of A Port
- Nearing The End Of FOLFOX Treatment
- Recovery From FOLFOX Treatment
- Life After FOLFOX Treatment: Long Term
- Your Health Care Team
- Emotions And Feelings While Undergoing FOLFOX Treatment
- Disability Income From SSDI and/or SSI Or A Private Insurer
- FOLFOX and Sex
- If You Have Advanced Colorectal Cancer
- If Treatment Is Not Working
- FOLFOX Family and Friends
Chemotherapy: FOLFOX
FOLFOX Side Effects: What They Are And How To Cope With Them
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This article covers general information about side effects as well as specific side effects. As you review this information, it helps to keep your treatment goals in mind and to think of side effects as part of the price that has to be paid.
Most people have side effects from chemotherapy. Which side effects will appear as well as the timing and the intensity cannot be predicted with respect to any particular individual because everyone has their own reactions to chemotherapy. That said, people tend to report a roller coaster of side effects which generally include those listed below, starting after the second or third infusion (cycle).
The effects generally start soon after the chemo infusion and are at their maximum for a few days after treatment. Side effects generally continually decrease until you get back to your normal base line, which usually happens before the next treatment.
Over time, side effects tend to be cumulative and may have a bigger impact. For example, you may get tired more easily, or it may take longer to get your energy back. Near the end of the course of treatment, you may not get all your energy back before it is time for the next treatment.
It is important to keep track of the side effects you experience because they will be reviewed before each infusion. To help keep track of side effects, we provide a Symptoms Diary
NOTE:
- There is no relationship between the presence or severity of side effects and the effectiveness of the medication. While there may be nerve damage from the Oxaliplatin that lasts beyond the treatment, all other side effects usually go away over time.
- In some cases, side effects from nerve damage may not be reversible. Let your doctor know right away if you experience any numbness or tingling, falls or unusual unsteadiness. (neuropathy symptoms).
- People who have advanced colon or rectal cancer and are taking FOLFOX treatment to improve quality of life rather than with the goal of a cure, tend to experience more down time than normal time. This is thought to be due as much to the disease as it is to the treatment, but there is no scientific evidence for the cause.
- Aggressive side effect management increases your likelihood of completing treatment. The main reason that people don’t complete treatment is uncontrolled unpleasant side effects. Also, an understanding of the most common side effects and tips for dealing with them can help avoid unnecessary physical complications and the least amount of disruption to work and everyday life.
Emotions and feelings are generally affected by being on FOLFOX treatment. For more information, click here.
With appropriate planning, the great majority of people are able to continue all activities during FOLFOX treatment, including travel and work.
- For information about travel and other aspects of day to day living, click here.
- For information about work, including seeking work, at work, a small business owner and a person who is self employed, click here.
COMMON SIDE EFFECTS OF FOLFOX:
Blood level changes
- Toxicity generally causes changes in blood levels.
- A decrease in red blood cells causes anemia which may make you feel tired or fatigued.
- A decrease in white blood cells lowers your defenses against infection. White blood cells serve as the primary defense against infections by destroying bacteria in the blood.
- For some people the drop in blood levels happens on day one. For others, the low point (nadir) is between days 7 and 10. In any event, blood levels usually recover before it is time for the next infusion.
- An increase in elevated liver enzymes suggests changes in liver function.
- Blood levels are checked before each infusion.
- A low white or red cell count still existing on the day of an infusion can delay treatment.
- Your doctor may administer a medication to increase red or white blood cell production.
- NOTE: Platelet counts generally decrease after the first cycle and continue to decrease until the end of treatment when they are usually at their lowest level. Platelets help to stop bleeding.
- Do not take aspirin, ibuprofen such as Mortin or Advil, products containing aspirin or ibuprofen, warafin (Coumadin), or vitamin E without first checking with your doctor.
- Tell your doctor right away if you have unusual bruising, or bleeding such as nosebleeds, bleeding gums when you brush your teeth, or black, tarry stools.
- For general information about avoiding infection, click here. For the following specific situations, click on the link:
Diarrhea
- Diarrhea can show up as a greater number of bowel movements a day than normal (for example, 5 total movements). It could also show up as soft, loose or watery stools.
- Diarrhea can start the day after an infusion or even several days later.
- Diarrhea should always be treated to keep it under control. Uncontrolled diarrhea can lead to severe dehydration which results in your feeling lousy. It can also lead to kidney failure and other serious health conditions.
- Diarrhea can usually be controlled by over the counter medications such as Imodium.
- Memorial Sloan Kettering advises its chemotherapy patients as follows: “If diarrhea occurs other than on the day of treatment, begin taking Imodium when diarrhea starts. Although the package cautions not to take this much, take two Imodium tablets at the first sign of diarrhea. Then take one tablet every two hours (or two tablets every four hours at night) until you have gone 12 hours without diarrhea. If Imodium is not effective after 36 hours, please call your physician.” There are prescription strength drugs available.
- For additional tips about controlling diarrhea, including foods to eat and foods to avoid, click here.
- If you have diarrhea related to chemotherapy, be sure to consume plenty of fluids to replenish lost fluids and minerals, especially electrolyte-containing beverages such as Gatorade.
- Let your doctor or nurse know if you are having diarrhea, especially if it lasts more than 24 hours, or if you get lightheaded, dizzy, or faint.
Discomfort
- The port may be uncomfortable for the first few weeks.
Fatigue
- Fatigue usually starts sometime within the first few weeks after the start of treatment, adding to the fatigue that may be caused by the disease itself.
- Fatigue gets cumulatively more intense and lasts for a while after the end of FOLFOX treatments.
- Fatigue is a type of tiredness that is not resolved by sleeping. It is a tiredness in the bones and muscles that is difficult to make more bearable. In some people, fatigue can mimic feelings of depression.
- Even people who tolerate treatment well generally have a sense of fatigue.
- For tips about dealing with fatigue, click here.
- For information about depression, including the signs of depression, click here.
Hair: Temporary thinning of the hair
- Temporary thinning of the hair can occur three to four weeks after each treatment.
- For tips about caring for your hair during chemotherapy, click here.
Nasal stuffiness and watering of the eyes can also occur three to four weeks after treatment.
Nausea
- Most patients experience feeling sick to the stomach (nausea) as a result of FOLFOX infusions. There is no apparent pattern as to when nausea starts, how long it lasts, or how severe it is.
- To prevent or minimize nausea, an anti-nausea medication is generally included in the FOLFOX infusion at the treatment center.
- You are also likely to be given a prescription for anti-nausea medication. If you don't get one, ask for it. It is advisable to fill the prescription as soon as you get it, and take the medications exactly as prescribed. It is easier to stop nausea before it starts than to wait to see if it evolves into more severe nausea or even vomiting.
- Vomiting can lead to dehydration and other medical problems.
- For information about dealing with nausea and vomiting, click here.
Neurotoxicity: Extreme sensitivity in the hands and feet, especially to cold
- Toxicity from Oxaliplatin affects the nerves and causes sensitivity in the hands and feet - especially to cold.
- The effect often shows up as one of the following:
- Your throat feels like it is closing when you eat or drink something cold. You may even feel as if you cannot breathe – but you can.
- When you touch something cold with your hands or feet, they feel like they are on fire or you get a painful shock.
- The effect starts during infusion and can last for 5-14 days. It gradually decreases as each day passes after treatment.
- Patients are cautioned not to eat ice chips or drink anything cold just before treatment, during treatment, or up to 5 days after getting Oxaliplatin.
- Beverages and foods may have to either be room temperature or heated prior to consuming. (If you really hunger for ice cream, let it melt before consuming.)
- Time tested tips for dealing with this side effect include keeping a pair of gloves near the refrigerator so you can get what you need without touching something cold. For additional tips, click here.
Numbness and/or tingling in hands and feet (Neuropathy).
- Neuropathy can result from Oxaliplatin.
- One early sign of neuropathy in hands is difficulty buttoning your shirt or other tasks that require dexterity. Another is finding it difficult to hold objects and dropping things.
- If neuropathy starts, the dosage of Oxaliplatin might be reduced or even eliminated entirely because neuropathy can become permanent in some cases.
- Neuropathy from Oxaliplatin is so common that experience at one nationally known NCI designated comprehensive center indicates that only a small percentage of people who complete a 6 month course of FOLFOX still receive Oxaliplatin at the end.
- For information about neuropathy and dealing with it, click here.
Changes In Taste Buds
- A FOLFOX regimen can alter taste buds. Every patient reacts differently so there is no common change. It is not unusual for people to dislike foods that they used to love. On the other hand, it may be that foods that didn’t sit well before, become more tasteful.
- Change in taste buds generally wears off soon after treatment ends.
LESS COMMON SIDE EFFECTS OF FOLFOX INCLUDE THE FOLLOWING:
Abdominal pain
- If abdominal pain becomes severe or continues for a few hours, contact your doctor. Abdominal pain can result from a variety of causes.
- Be prepared to answer such questions as:
- Is the pain throughout your abdomen or is it confined to a particular area?
- What type of pain are you experiencing? Is it stabbing and severe? Is it a dull ache?
- When does the pain occur?
- Does the pain remain constant or come and go? If it comes and goes, about how long does it last each time?
- Does the pain radiate to other parts of your body?
Burning while urinating.
Emotional discomfort or distress. For information, see Emotions While On FOLFOX
Chemo Brain
- While chemo brain can be generally described as feeling as if you are in a fog, it can show up in different ways. For instance, chemo brain can show up as the lack of ability to remember certain things, trouble finishing tasks, and/or difficulty learning new skills.
- For information about Chemo Brain, including tips for coping, click here.
Constipation
- Some people experience difficulty emptying the bowels.
- For information, including tips for coping, click here.
Hand-Foot Syndrome
- Hand-foot syndrome can include severe redness, swelling, tingling, numbness, pain and/or skin peeling and blistering of the hands and/or feet
- Since hand-foot syndrome can lead to open wounds which can get infected, hand-foot syndrome should be treated.
- Hand-foot syndrome is different from numbness or a tingling in hands and feet caused by neuropathy, which is described above.
- For more information, including treatments, click here.
Heart attack
Itching. For tips about relieving itching, click here
Mouth sores (oral muicositis)
- Mouth sores should be treated right away because they can lead to infection.
- Mouth sores can also make eating difficult, which in turn affects nutrition.
- For information, click here.
Numbness of lips
Skin rash. For information about what to do about skin rashes, click here.
Shortness of breath, tightness of the throat or wheezing. Report any of these symptoms to your doctor right away.
Thrush a white fungal infection that can show up throughout the digestive tract from the mouth to the anus . For information, including treatment, click here.
RELATIVELY RARE SIDE EFFECTS
Hair Loss (Alopecia). To learn how to cope with hair loss, click here.
NOTE:
- If you experience poor sleep, you can find helpful tips by clicking here.
- For rectal cancer, Radiation is usually given in tandem with FOLFOX. The combination is known as ChemoRadiation. For information about the side effects of ChemoRadiation, click here.
- If a side effect requires that you be hospitalized, read or ask a friend to read: How to Maximize A Stay In A Hospital
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