Helping with Side Effects

Below are some of the more common side effects your loved one may experience. The information here is intended for you, as a caregiver. Elsewhere on this site, under Side Effects, you will find detailed information that both you and your loved one can read to understand the most common side effects that may be experienced.

Pain
A caregiver is sometimes the person who has primary responsibility for monitoring a patient's pain and overseeing medication, especially if the person with cancer is not able to or does not choose to do so. Pain is one of the most debilitating — yet treatable! — cancer side effects. Unfortunately, too many people with cancer pain suffer pain without obtaining sufficient relief to have a good quality of life. This is just not necessary — and as the caregiver, you can play a very important part in making sure your loved one is as comfortable as possible.

First, educate yourself and, if possible, your loved one about the facts of cancer pain. Please see the comprehensive section on Pain. This includes special sections about pain in the elderly, children and at the end of life. This section also includes information explaining the causes, symptoms and treatment of cancer-related pain.

Caregiver Tasks. These will vary from situation to situation, but in general, your responsibilities may include:

• Seek advice and ideas from your health care team on pain management. Questions might include:

How do I manage breakthrough pain, which may occur between regular doses?

Who do I call, both during the workday and at night, if a serious problem arises?

How do I cope with a situation where pain meds wear off before it is time for the next scheduled dose?

What if the medications don't appear to be providing good pain control?

What are the potential side effects of some pain medications and how should we plan to cope with these?

What are the warning signs of a bad reaction to medication? What do I do?

• Administering medications - (see Pain for detailed information about the kinds of medications used for cancer pain and how they are administered). Some things to consider include:

- Make and post a chart of what medications, in what amounts, via what routes, are to be given when. The chart might include a column for the name of the medication, a column for times of day and a way to check off each time as it is administered, and a column saying how the medicine will be given — orally, by injection, by suppository, etc.

- Understand the importance of administering pain medications around the clock to avoid pain buildup. It is far easier to keep cancer pain under good control all the time than to allow it to become severe and then try to get it back under control. If your loved one is taking pain medication on an as-needed basis, make sure she or he understands what this means and helps keep the pain controlled as much as possible.

- Make sure you understand who to call for immediate assistance if pain is spiraling out of control.

- Make sure you understand what to do for what is called "breakthrough pain," the kind that occurs between cycles of regularly-scheduled medication. Make certain your health care team provides you with appropriate medicine for this purpose.

- If your loved one is regularly experiencing pain before it is time for the next scheduled dose of medicine, talk with the health care team about adjusting either the timing of the medication (administering it more frequently), the amount of medication prescribed, or perhaps switching medications. Don't tinker with the schedule or dose yourself unless the health care team has told you how to do this safely and effectively.

- Understand that almost all opioid pain medications cause constipation in those taking them, and ask your health care team for advice and assistance in anticipating this aggravating side effect and managing it well. See Constipation on this site for more information.

• Support and assist in non-medical pain relief techniques, such as massage, application of heat and/or cold to some areas of the body; helping patient find a more comfortable position, and relaxation techniques.

• Monitor a patient's pain levels and get additional help if present medications aren't doing the job.

• Overcome your own fears, prejudices, misunderstandings and misinformation about pain — see Pain for fact-based information about concerns like addiction and overdosing. Don't let your loved one suffer because of your ideas about the vices of pain medications. Similarly, if your loved one resists taking pain medication because of fears about the consequences, provide her or him with factual information about the topic.

• Understand when you're looking at an urgent-help situation in regard to pain. If your loved one exhibits any or some of these side effects, call your health care team for assistance immediately:

The patient is disoriented, seeing and hearing things that are imaginary

Twitching or convulsions

Uncontrolled nausea and vomiting

Very slow breathing

Very shallow breathing (tiny breaths that take in very little air)

Uncontrolled muscle twitching or spasms

Itching or rash on the body

When you call for help in this situation, be sure to be prepared to tell the health care provider what medication has been given, and in what dosage. This will be helpful in determining next steps.

• Make a special effort not to run out of pain medication; monitor amounts remaining on prescriptions so you don't end up out of medications at night or on a weekend when some pharmacies are closed. Also, consider using a pharmacy that is open 24 hours a day, seven days a week, if necessary. Arranging for medications by mail may also be an option worth considering, if your insurer offers such a service.

• Learn about options for care and pain management if you need to be away from the patient for a day or more. Determine who can help, and how best to make arrangements for that help.

• Remember that many pain medications, like many other medications, should NOT be stopped abruptly, even if a person no longer experiences pain. Talk with your health care team about a tapering schedule for ending pain medication, and make sure your loved one understands this process, as well.

Constipation
Constipation is a common, uncomfortable and sometimes painful side effect for people with cancer. The good news is that for most people, it can be prevented or successfully managed. Be aware that your loved one may experience this side effect, particularly if he or she is taking opioid pain medications and some anti-nausea medications. You can be helpful by encouraging preventive measures, by monitoring the condition and alerting the health care team if need be. For detailed information about constipation and its management, see Constipation on this site.

Symptoms include:
• No regular bowel movement for three days
• Small, hard stools that are difficult to pass
• Urge to strain, feelings of rectal pressure, abdominal fullness, or bloating
• Stomach aches or cramps
• Vomiting and nausea
• Abdomen appears swollen or distended
• Passing an excessive amount of gas or belching frequently
• Leakage of small amounts of soft stool resembling diarrhea.

People who are not physically active, such as a cancer patient spending a lot of time in bed, are particularly vulnerable to constipation. As is feasible, encourage your loved one to walk a bit, several times a day, to help improve bowel function.

Patients taking opioid pain medications very frequently experience constipation. Most health care providers recommend a bowel regimen that begins at the same time as pain medication is started. If you have not been given instructions about this, request information from the health care team.

Cancer patients should never be given an enema or suppository without specific instructions from your health care provider.

In general, seek advice promptly from your health care team if the person with cancer is not able to have regular bowel movements. They will suggest medication and other techniques to help. Medications may include stool softeners, or a stool softener and a stimulant laxative, if you are taking opioid-based pain medicine. It is likely that you will be directed to take a specific amount of softener and/or laxative to start, and the dosage will be adjusted until the constipation is well-managed.

Fecal, or stool, impaction occurs when all of the stool does not leave the body during a bowel movement, or when bowel movements are not occurring regularly. Hardened stool in the rectum continues to absorb water, becoming even larger and more difficult to pass. Impaction can be caused by many of the things that cause constipation, and also by the overuse of laxatives, which can make the colon less and less sensitive to the stimulus for a bowel movement.
Symptoms of impaction can be the same as symptoms for constipation, but include others as well:

• Back pain (the impaction may be pressing on a nerve)
• Increased or decreased urge to urinate (the impaction is pressing on the bladder)
• Shortness of breath can occur if a bloated abdomen presses on the lungs

Treating impaction. Impaction should not be treated with home remedies. A possible impaction should always be verified and then treated by a health care professional. Don't attempt enemas or other remedies unless told to do so by a physician. In some cases, use of enemas can further injure an already-irritated bowel and rectum. If impaction is present, the health care team will work to soften the stool so that it can be more easily removed or passed. This may be done with water, oil or other materials, possibly in the form of an enema or suppository. Additionally, the person with cancer may be asked to use bowel-softening medications to help soften stool higher up in the colon.

Diarrhea
Diarrhea — frequent loose, watery bowel movements occurring 3 or more times a day — is a relatively common side effect for people with cancer who are undergoing treatment. Diarrhea most commonly can be triggered by some chemotherapy medications, other medications such as antibiotics, radiation to the gastrointestinal tract, by the cancer itself, infections, and supplemental feedings (usually high protein liquids like Ensure and Sustecal). Sometimes diarrhea can also be caused by laxatives taken to prevent constipation, other non-cancer conditions, and reactions to food.

Diarrhea requires immediate attention. Untreated diarrhea can lead to dehydration, a significant loss of fluid and electrolytes (like potassium, magnesium and sodium) from the body. Dehydration can trigger severe side effects, and even become life-threatening.

Contact your health care team at once if diarrhea is present. If you are speaking for the patient, be prepared to describe the symptoms, frequency of bowel movements, and all medications the patient is taking, including over-the-counter remedies.

Treatment will depend on what the health care provider suspects as the
cause. In some instances, a special diet designed to soothe the bowels may help, or medications may be prescribed. For more information, see Diarrhea on this site.

Fatigue
It is important for you as a caregiver to understand the fatigue your loved one with cancer is experiencing is not like the fatigue all of us experience in everyday living — the kind usually relieved by a good night's sleep or a vacation. Cancer fatigue is not easily relieved, and can impact every aspect of a cancer patient's life. Sometimes health care professionals neglect to discuss the fatigue that cancer and its treatments can bring, leaving both patients and caregivers lacking important information about this side effect and how it can be addressed. Cancer patients also sometimes fail to alert their health care team members about fatigue, thinking it cannot be helped and preferring to keep the team focused on treating the cancer. Sadly, this lack of knowledge can lead to frustration and irritation during the course of treatment and in the months after treatment ends. Fatigue related to cancer can have a significant impact on a person's quality of life. That's why learning about this kind of fatigue and how to manage it is especially useful to both people with cancer and their caregivers.

Primary causes of cancer-related fatigue include:
• The cancer itself, as some tumors compete with the body for nutrients
• Low blood counts, often triggered by cancer medications
• Surgery
• Nutrition issues
• Sleep problems
• Reduced activity levels
• The presence of other side effects, such as pain, infection, nausea and vomiting, and anemia
• Deficiencies in key electrolytes in the body, like magnesium, potassium and sodium, usually caused by cancer-related medications
• Radiation
• Immunotherapy medications like Interferon/Interleukin
• Other health conditions not directly related to cancer, such as thyroid problems
• For some, emotional factors such as anxiety, depression and family conflict may contribute to fatigue.

For detailed information about the aspects of cancer-related fatigue, please see Fatigue on this site. There you will learn how cancer fatigue can be managed, including discussions of nutrition, exercise, pacing onself and more. It's also important to know that for some patients, medications can be prescribed that can help ease fatigue. What is prescribed will depend on the health care team's assessment of the causes. For example, if the patient has a low red blood cell count, a medication such as epoetin-alpha (Procrit) can help.
Fatigue caused by cancer and its treatments does not vanish the moment treatment ends. Rather, most patients will require months to regain their former energy and strength. Knowing that energy will return slowly will help you and your loved one be a bit more patient as this side effect dissipates.

Infection
Infection almost always means there is a need for immediate treatment. People in cancer chemotherapy and radiation treatment are most vulnerable to infection at a certain time in the treatment cycle when the number of neutrophils (a kind of white blood cell) dips very low. This is called neutropenia, and usually occurs 10-14 days after receiving chemotherapy. Neutropenia leaves people vulnerable to infection, since the body no longer has a normal number of white blood cells to fight off infection.

Many patients remain neutropenic for as long as 10 days It is at this time, often referred to as the "nadir," when everything possible must be done to guard against infection.

While there is no foolproof way to guard against infection, there are measures and precautions which can help. Sometimes despite intensive efforts to head off infection, it occurs anyhow. For more information about preventive measures, please see Fighting Infection on this site.

If infection occurs, it is essential that you seek immediate attention from your health care team. An infection in a person with cancer can rapidly become life-threatening, and there should be no delay in seeking treatment if infection is suspected. It is better to err on the side of caution than take risks. These are the warning signs of infection, as defined by the National Cancer Institute:
• Fever over 100.5º F or 38ºC (temperature taken by mouth)
• Chills, especially shaking chills
• Sweating
• Loose bowel movements
• Frequent urge to urinate or a burning feeling when you urinate
• A severe cough or sore throat
• Unusual vaginal discharge or itching
• Redness, swelling, or tenderness, especially around a wound, sore, ostomy, pimple, rectal area or catheter site
• Sinus pain or pressure
• Earaches, headaches or stiff neck
• Blisters on the lips or skin
• Mouth sores

If at anytime a cancer patient's fever reaches 104º F quickly, seizures and convulsions are possible. Take the patient to the nearest emergency room or call 911 for ambulance assistance. Let the emergency team know the patient has cancer.

If the health care team finds an infection, a culture will be taken to determine the source of it. Usually patients are immediately started on antibiotics, while the culture develops. Once the source is known, additional antibiotics or other medications may be prescribed. Most cancer patients are hospitalized during treatment for infection, at least for several days, until it is clear that treatment is working effectively.

Mouth Sores
Mouth sores (mucositis) are a common side effect for people being treated for cancer. Chemotherapy medications work on rapidly-dividing cells, like cancer cells — but also attack other cells with this characteristic, including those forming the lining of the mouth. Radiation also damages these delicate cells while it acts on the cancer. The resulting swelling and soreness in the mouth is the body's reaction to this treatment.

This discomfort can range from mild, easily treated and quick healing, to more severe problems. None of it is pleasant, and all of it can reduce a person's quality of life. Your loved one may begin to avoid eating and drinking because of the pain — and allowing this pattern to continue without treatment is dangerous.

The symptoms are:
• Small ulcers or sores in the mouth, on gums and tongue; the sores may be reddish and may have white centers
• A burning, tingling feeling inside the mouth
• Whitish patches inside the mouth
• Inside of mouth looks red, shiny and swollen
• Unusual sensitivity to very hot and very cold foods
• Unusual mouth dryness
• Fever

Report your loved one's mouth difficulties to your health care team when they occur, rather than waiting for a scheduled appointment. This step can help the patient by getting an accurate diagnosis of the problem, and treatment can begin at once. Mouth sores should be treated promptly. There are a number of medications to treat the pain, and techniques to avoid further irritation. For detailed information on this site, please see Mouth Soreness.

Nausea and Vomiting
Formerly the most dreaded side effect of cancer treatment, today nausea and vomiting can be prevented for many cancer patients, and well-controlled in those who experience it.

Controlling this side effect is very important, and it's critical to accomplish this. Prolonged nausea and vomiting can lead to dehydration, loss of appetite, interference with healing wounds, and of course, it has a very negative impact on one's quality of life.

Medication for nausea and vomiting today is excellent, and works successfully for the overwhelming majority of cancer patients. In general, these medications are given before chemotherapy starts, so control is in place when the medication enters the system. Make certain your loved one's health care team takes this step. Also, medication for nausea often continues for several days even after the chemotherapy has been given; encourage your loved one to maintain the schedule of anti-nausea medication prescribed, in order to avoid breakthrough nausea.

Also, caregivers can give some thought to meals, in regard to nausea management. Many health care providers recommend a light meal several hours before chemotherapy begins, rather than just before the medication is administered. After the medication is completed, it is generally best to eat lightly for a day or so, but this will vary with individual preferences.

Caregivers should work with the health care team to make certain this side effect is controlled. While some people receive good results from just a single medication, for others, some experimentation will be necessary. Be prepared to report symptoms to your health care team promptly, so the right treatment can be found.

To learn more about prevention, treatment and control, please see Nausea and Vomiting on this site.

Appetite
Eating as well as possible is important for people undergoing cancer treatment — and at times, doing so can be difficult and demanding on both the patient and the caregiver who is trying to help. Good nutrition is important because it helps a person to cope with some side effects, keeps strength up, helps rebuild tissue, and even fights infection. For detailed information on cancer treatment and nutrition, please see Nutrition on this site.

In addition to meal preparation as needed, there are some specific things regarding appetite and nutrition a caregiver can do to be supportive of the person in treatment. These include:

• Remind your loved one that the health care team needs to know about any and all nutrition/health supplements being taken, including all vitamins. Some supplements can have a direct impact on the effectiveness of chemotherapy.

• If your loved one is struggling to eat or is avoiding eating, don't hesitate to ask to speak with the hospital's registered dietician. These individuals are expert in helping ill people maximize their nutrition through consumption of foods and drinks that are easy to manage.

• If your loved one is not eating much because of side effects like mouth soreness or nausea, bring this to the attention of the health care team. These side effects can be treated effectively for most people; if untreated or undertreated, they can be a lasting deterrent to eating.

• If at all possible, avoid constantly urging your loved one to eat. Encouragement like this is almost always done out of love, but it can backfire, turning mealtime into a stressful setting for all concerned. Let your loved one know you are concerned, but don't overdo it.

• Chemotherapy affects some people's sense of taste and smell. (It usually returns to normal once treatment ends.) This can mean that a person in treatment may not be able to enjoy formerly loved foods. Sometimes a person may request a favored food, and then when it is prepared, be unable to eat it. As a caregiver and sometime food preparer, it's important that you understand this, and know that your loved one isn't refusing food for no reason.

• If your loved one is steadily losing weight and consuming minimal amounts of food and liquids, let the health care team know this. A loss of more than 4-5% of body weight within a month can be damaging.

• In food selection and preparation, remember that a person undergoing cancer treatment should not consume uncooked meat or seafood, that all fruits and vegetables should be washed, and that any that can be peeled, should be. This helps avoid bacteria contamination and lowers the risk of infection.

• Finally, don't be overly concerned with urging your loved one to eat a "balanced" diet. During this time when appetite may be missing, it's fine if your loved one eats what tastes good. 

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