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Chemotherapy: FOLFOX

Life During a Continuous FOLFOX Infusion: Do's and Don'ts

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During a continuous FOLFOX infusion, it is advisable to keep in mind the following does and don'ts::

DO

Stay hydrated while receiving chemotherapy infusion to help flush the toxic drugs out of your liver. The general recommendation is that you drink at least 8, 8 ounce glasses of liquid a day. Liquid can be fruit juice, water, sports drinks, clear liquids, ice, or health drinks such as Ensure. It is preferable to minimize caffeine (coffee and tea) and only drink alcohol "once in a blue moon."

Be careful.

  • Take care of your port.  For information, including practical tips for living with a port, click here
  • Do not to break the bottle or to disconnect the connection to the port. if the infusion device leaks, immediately clamp your i.v. line and call your doctor or nurse.
  • If there is contact between chemotherapy and:
    • your skin: Immediately wash your skin with warm, soapy water.
    • your clothing and/or bedding:
      • Do not mix clothing and bedding which comes in contact with chemotherapy with your other laundry.
      • Wash all clothing and bedding that comes into contact with the chemotherapy twice.

Keep water away. Do not allow the connection or bandage between the line and the port (the "set up") to get wet. Most infusers are water resistant -- not waterproof.

  • Sponge bath: The easiest way to freshen up and avoid the set up is by taking a sponge bath.
  • Showering:
    • You can shower if you have a detachable shower head so you can wash the rest of your body while keeping the set up dry. One alternative: sit on a shower chair in the bathtub and ask a caregiver to manage your port and infuser while you wash and rinse yourself.
    • You can also shower if you cover the set up with Press-n-Seal to keep it dry.
    • Do not use hot water. Most infusers respond if your body becomes very hot or very cold.
  • Bathing:
    • You can take a bath if you place the infuser outside the tub and make sure the set up doesn't get wet.
    • One way to assure the infuser doesn't get wet is to keep it outside the tub inside a plastic, sealable, bag.
    • As mentioned with respect to showering, do not use hot water. Most infusers respond if your body becomes very hot or very cold.

Monitor the infusion flow. The infusing device should be checked to be sure the chemotherapy is flowing as it is supposed to. If your infusion is flowing slower or faster than expected, contact your nurse or doctor. Keep in mind that one of the purposes of the continuous infusion is a slow infusion. Check:

  • The indicator which shows the amount of chemotherapy which is left in the bottle.
  • That there are no kinks in the tubing.
  • The clamp on the i.v. line is not clamped and the tube is in the proper location in relation to the line.
  • That the needle is still in place in the port. You can check it by pressing down on the needle gently with your index finger. You should feel it touch the back of the port.
  • Check to see there are no leaks.
  • Also check for signs of infection. For example, redness, swelling or drainage.

Take care while sleeping when undergoing a continuous infusion: 

  • The key is to find a balance between comfort and keeping the line from detaching from the port at one end and the bottle at the other end,
  • It is generally advisable to keep the infusing device next to your pillow either uncovered or in a fanny pack, mesh "sleeve", or pajama pants pocket. Generally you will be given one of these holders at the treatment center when the infusing device is hooked up.
  • It is not advisable to place the bottle on a night table or in another area where it may fall and be damaged or break.
  • Don't be surprised if you waken at night if you roll over the bottle.
  • Try to remember to take care if you have to get up in the middle of the night and go to the bathroom.
  • Stomach sleepers may have difficulty sleeping on their stomachs because it hurts to press on the needle which is attached to the port.

Do what you can to minimize side effects. Out of control side effects are the primary reason people do not complete treatmentFor information, see: Coping With FOLFOX Side Effects

Keep all your chemotherapy treatment appointments (or check with your doctor as soon as you think you have to miss one) – and do your best to be on time.

Keep in mind that treatment decisions may change as treatment goes along.

Learn how to maximize time with your medical team. For instance, keep a symptoms diary and a list of questions to ask at your next medical appointment.  (Our prioritizer can help keep track of questions - and quickly prioritize them before going to an appointment.)

On a day to day basis, do your best to:

  • Drink a lot of liquids to help flush the chemotherapy from your system.
    • Chemotherapy is toxic. It is flushed out of the body through the kidneys and the bladder. Drinking a lot of liquids (such at 8, 8 ounce glasses of water) helps keep these organs from experiencing higher concentrations of toxic chemicals. If you need a break from water, consider clear liquids, fruit juices and electrolyte-rich beverages (sports drinks) such as Gator-Ade.
    • Drinking can be difficult if you are nauseous, and particularly if your nausea leads to vomiting. This is yet another reason to keep nausea under control. To learn how, click here
  • Minimize caffeine such as in coffee and tea.
  • Eat nutritiously for a person in treatment (which is generally different than when not in treatment). 
    • The key is a healthy diet which helps maintain your strength and keeps you from losing weight to the extent possible.
    • There is no particular diet which is recommended for FOLFOX. Instead, consider a cancer prevention diet. To learn more, click here
    • Instead of three large meals a day, it is generally recommended that you eat smaller meals more frequently. This is particularly so if you are experiencing nausea or loss of appetite.  For more information about food, click here.
    • On an anecdotal level (reports from patients rather than from scientific studies), a number of patients report that they feel better by not eating red meat while receiving chemotherapy.
    • For advice about nutrition for your individual situation, consider seeing a nutritionist/dietitian. For information about how to choose one and other practical tips, click here.
  • Practice good oral hygiene.
    • If your dentist advised you to take additional precautions during treatment, take them. For instance, your dentist may recommend a fluoride mouth rinse or a fluoride gel in addition to daily brushing.
    • An infection in your mouth can lower your body's ability to fight your cancer. Keep your mouth clean. Brush at least twice a day. Floss at least once a day. (If you haven't had one lately, schedule a dental check up). 
    • Check your mouth every day. Call your dentist immediately if you notice any changes or problems. Any of the following symptoms may indicate an infection.
      • Bleeding or a sticky, white film in your mouth 
      • Lumps 
      • Soreness 
      • Swelling 
      • Ulcerations.
      • To learn about oral care, click here. 
  • Generally take care of yourself.
    • .Take it easy. You may not have as much energy as usual, so try to get as much rest as you can. Make sure you get at least 7 to 8 hours of sleep each night. If you are having difficulty sleeping and need tips, click here
    • Do not push yourself to do too much or more than you can manage. 
      • Let the "small stuff" slide, and only do the things that are most important to you. 
      • Look for easier ways to do your daily tasks.
    • ·Consider pampering such as:
      • Take a hot bath, with or without bubbles.
      • Get a massage.
      • Go to a movie.
    • Look for humor. For ideas about bringing humor into your life, click here.
    • Consider getting a pet. Pets of any kind can provide companionship, emotional support and make you feel better. If you don't want to own a pet, you can be a foster parent for a while. Dogs provide an excuse to exercise. For information, see Pets 101
    • If you have the time and resources, consider turning your home and/or work place into a healing enviornment. .
    • Give yourself a daily "joy" break.
  • Do your best to keep a positive attitude,  To learn how, click here

Be active. Exercise to the extent that you can.

  • Studies show that many people feel better when they take short walks or do light exercise each day. Being active like this can also help improve your appetite.
  • Chemotherapy as such should not prevent you from exercising. – even if you have a port.
  • Check with your health care provider before beginning any new exercise.
  • For information about exercise, including how to keep from getting infected at a gym, click here

Be assertive about your needs. Assertiveness can be learned.

Minimize stress.

  • To learn how to avoid unnecessary stress, click here
  • To learn how to deal with stress, click here.
  • For information about dealing with holiday stress, click here 

Minimize emotional pressure by sharing your emotions 

  • People can have a difficult time physically and emotionally, particularly when treatment first starts and when it nears the conclusion.   
  • Sharing with other people in a similar situation is a great way to also gain practical information. 
  • Share emotions and feelings with family, friends, support groups and/or a cancer buddy. Seek professional help about feelings when needed. 
  • For information about sharing emotions and feelings, click here.  

Protect your skin from the sun.

  • 5-FU makes skin very sensitive to the sun, especially during a continuous infusion.
  • Wear long sleeves, long pants and a hat if possible.
  • Use a sunscreen with an SPF of 30 or greater when in the sun – even in the winter.

Stay away from anything cold - either against your skin as well as by drinking and eating for at least a few days starting with each infusion. During cold winter months, wear gloves and cover your head. It can help to carry a scarf to breath through so your lungs are not exposed to cold air. This warning is due to the side effect: senstivity to cold.

You can travel during treatment with proper planning.

  • Implanted ports do not generally set off airport security alarms. However, patients should carry the identification card they receive with the port to show to security personnel if an alarm does go off or if a full body scan is used.
  • For information about planning, and traveling, click here. 
  • For information about travel outside the United States, click here.

Keep track of your symptoms. You will be asked about symptoms since the last infusion before a new cycle starts. Keep track with our Symptoms Diary. With the click of a button, the diary is turned into an easy-to-read graph which will save the medical team time. You can use the extra time to ask questions of concern.

Call your doctor or nurse if you experience any of the Red Flags to Watch For.

Keep in mind tips for effective communication with your doctor and other medical professionals so you can use your limited time with them wisely. For information, click here.

Last but not least, lean on family and friends. To learn how, click here

DO NOT

As a general matter, it is not advisable to re-dress the set up yourself because of the risk of infection. Ask a nurse in the treatment facility what to do in case the bandage accidentally comes off or gets dirty.

Don't drink alcohol. FOLFOX affects the liver. So does alcohol. At least one comprehensive cancer center recommends limiting alcohol consumption to 1 – 2 drinks every 3 -4 weeks. 

If you smoke, this is the time to quit.  

  • Smoking may interfere with the effectiveness of cancer therapy. By quitting, you can improve the body’s response to treatments, lessen complications and side effects, decrease the risk of recurrence and enhance survival. Cancer patients who smoke have a lower survival rate than nonsmokers.
  • Quitting during treatment may be very uncomfortable. It may include  a variety of symptoms such as difficulty sleepingdepressionanxiety, and irritability. On the other hand, it may help keep your mind off of the treatment.
  • For information about quitting, click here

When it comes to exercise, do not:

  • Engage in vigorous exercise and activity such as contact sports during continuous infusion.
  • Swim.
  • Use a hot tub -- even with the infusing device outside the tub.
  • Enter steam rooms.

Pregnancy/Breastfeeding

  • FOLFOX  may harm a baby developing in the womb. It is advisable not to become pregnant or father a child while you are having treatment and for a few months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.
  • Do not breastfeed during this treatment because the drugs may come through in the breast milk.

Let a feeling of self consciousness about carrying around a chemotherapy bottle and/or pump overwhelm you.  A review of discussions in chat rooms indicates that the bottles are so small and concealable that most people don't even notice them or hear the motor if there is one. Reports indicate that people who do notice that a person is wearing a device generally "don't think anything of it.".

Do not avoid sex just because of chemo or a port. To learn more, click here.

Do not be surprised when you meet other people going through chemotherapy if their treatment schedule is different from yours. Chemotherapy schedules are tailored to the individual situation


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