Controlling Cancer Pain: What You Need to Know to Get Relief
Presenter Michelle Rhiner, RN, MSN, NP Supportive Care/Pain/Palliative Medicine City of Hope National Medical Center Duarte, California Reaching Out With Help & Hope
This booklet is based on information presented in a recent CANCERcare®Telephone Education Workshop by nurse practitioner Michelle Rhiner. Thisworkshop was a collaborative effort between CANCERcare and theAmerican Pain Foundation and was sponsored by an educational grant fromCephalon, Inc. Ms. Rhiner is the patient coordinator and manager forSupportive Care, Pain and Palliative Medicine at the City of Hope NationalMedical Center in Duarte, California.
On page 11 you’ll find a list of frequently asked questions. Definitions ofboldfaced words in the text can be found in the glossary on page 15.
CANCERcare was founded in 1944 to help those with cancer and their lovedones cope with the disease. Our services are free to people of all ages, with alltypes of cancer, and at any stage of the disease. CANCERcare conducts 70Telephone Education Workshops per year. The workshops are a way for peoplefrom across the country to learn about cancer-related issues from leadingoncology experts. Many of the workshops even provide participants with theopportunity to ask questions. More information about the CANCERcareConnect™ program can be found at www.cancercare.org, by calling1.800.813.HOPE, or by e-mailing [email protected] In addition to ourTelephone Education Workshops, CANCERcare has more than 40 trainedoncology social workers on staff who provide assistance to more than 100,000people each year. These services include:
Professional counseling and support in person, over the telephone, orthrough the Internet
More than 30 professionally facilitated support groups
Assistance with obtaining funds for disease-related costs, such as painmedication, transportation, homecare, and childcare
Information to help you make the best decisions
A resourceful, interactive Web community (www.cancercare.org) thatprovides people with cancer and their loved ones comprehensiveinformation about their disease. CANCERcare Online™ also providesvisitors with the opportunity to participate in a support group, listen to aTelephone Education Workshop, and locate additional resources in theirlocal community. National Office Services Administration Tel: 212.712.8400 Fax: 212.712.8495 E-mail: [email protected]
This patient booklet made possible by an educational grant from Cephalon, Inc. Pain is whatever the patient says it is. Most patients with pain wish they had never been born with the ability to experience pain. But pain receptors are impor- tant: they alert us to a problem and prompt us to seek medical attention. However, chronic or persistent pain has no biologi- cal value. Its detrimental effects may even interfere with survival.
There are two broad types of pain: acute pain and chronic pain. Acute pain is experienced immediately when the body is injured. Once healing occurs, acute pain generally disappears. Chronic pain continues beyond tissue healing. It’s present every day or nearly every day for more than three months. Such pain may be due to cancer or other diseases. Cancer patients who experience chronic pain may also have acute episodes of pain. That often indicates a new problem, such as an outbreak of herpes zoster (“shingles”). Somatic Pain
n Well localized: You know exactly where it
n Often described as aching or throbbing. Visceral Pain
n “Referred” pain: Felt in an area other
n Often described as deep and cramping. Neuropathic Pain
n Involves nerve endings: Can occur after
shooting pain. Some experience a “pins-
and-needles” sensation or numbness.
mens. So-called “phantom pain” may follow surgical amputa-tion. Patients weakened by bedrest may experience painfulmuscle tightness, spasms, or loss of their range of motion. Talking to Your Doctor About Pain Pain can be a lonely and subjective experience. Neither knowledgeable clinicians nor caring family members can guess
the intensity of a patient’s pain. It’s up to you to describe yourpain as precisely as possible. Here are some tools to do that:
Begin by keeping a daily pain diary. When you write it down, you won’t have to rely on your memory. Specific informa- tion will help your medical team give you the best possible treat-
ment. These are some of the things to record in your diary:n Where and when the pain occurs. n How often and how quickly the pain comes on. n How long it lasts. n What makes the pain worse. n Whether anything alleviates the pain (heat, ice, drugs). n For how long the painkilling method is effective and how
n How the pain is affecting your quality of life—whether it
keeps you from sleeping, eating, walking, working, orexercising.
Note that even when doctors can control chronic pain, some patients may still experience breakthrough pain. These pain flares, which can occur suddenly, can be so intense that they “break through” chronic pain medication. But breakthrough pain can be controlled with short-acting drugs. It’s important to note in your diary how many times a day breakthrough pain occurs, and how well the short-acting medication is working. When you see your doctor, describe your pain vividly. The more detailed and precise information you can give your health-care provider, the more it will help him or her treat you quickly and effectively: n How intense is your pain? The simplest scale is from 0 to 10, with 0 equaling no pain and 10 equaling the worst pain pos- sible. (Make sure your doctor understands
Anyone with chronic pain knows that it can
erode the quality of life and grind downthe spirit. It’s not unusual for patients in
pain to feel depressed, anxious, or angry.
Pain can also test the family’s finances. If a
patient was the primary breadwinner, his or
givers may have to take time off from workto help their loved one. A solid family
support system is key; support groups can
also help both patients and caregivers.
scales, see page 11. n Does the intensity of
pain management team. Physicians, nurses,
psychologists, psychiatrists, clergy, andsocial workers can all devise strategies to
help patients and their families during a
seem to ease?n What does the painfeel like? Is it dull, sharp, stabbing, pinching, burning, throb-bing, aching?
Barriers to Pain Management It may surprise you to know that both health-care providers and patients can erect barriers to effective pain control. Here are some of the fears and facts about pain relief: Fear: If I complain about pain, my doctor won’t treat my disease as aggressively. Fact: Pain can actually interfere with treatment. So it’s in your interest to seek relief from this symptom. Fear: If I take opiates to relieve my pain, I’ll become an addict. Fact: Addiction among drug abusers is a psychological depen- dence on a drug; that’s different from patients who need drugs physically to relieve pain. A patient can build up a tolerance to a drug, but his or her doctor can prescribe other medications or drug delivery methods to relieve discomfort. Once pain is gone, the need for the drug is gone. Fear: The drugs will make me constipated, nauseated, and “dopey.” Fact: Such side effects may occur. But they can be counteract- ed or minimized. Fear: If the medication stops working, there won’t be any other way to relieve my pain. Fact: There are a number of painkilling drugs and different ways to deliver them. Your doctor can tailor these drugs and methods to your needs, even if they escalate. Fear: My oncologist is too busy treating cancer to spend time discussing my pain. Fact: Doctor-patient communication is a two-way street. If your doctor doesn’t ask you about the pain you’re having, speak up! Treating Cancer Pain A variety of painkilling drugs are available to help cancer patients. Your doctor can also lessen pain by treating the tumor with chemotherapy, radiation, or surgery. He or she will advise you as to what approach is right for you. You might also want to talk to your health-care team about such tech- niques as relaxation, meditation, biofeedback, hypnosis, or physical therapy, all of which can enhance your treatment and reduce the stress of pain. Adjunct Medications ANTIDEPRESSANTS Action: treat tingling and burning pain due to nerve damage (shingles, for example) and phantom pain; help patients sleep Examples: amitriptyline (Elavil, Endep), nortriptyline (Aventyl, Pamelor), doxepin (Sinequan) Side effects: dry mouth, sedation, anxiety, constipation ANTICONVULSANTS Action: treat nerve pain, muscle jerking; sharp, stabbing pains Examples: gabapentin (Neurontin), carbamazepine (Tegretol), phenytoin (Dilantin), lamotrigine (Lamictal), oxcarbazepine (Trileptal) Side effects: dizziness, confusion, possible bone marrow depression, sedation CORTICOSTEROIDS Action: treat bone pain, nausea and vomiting resistant to other medications, and pain stemming from brain and spinal-cord tumors; boost appetite Examples: dexamethasone (Decadron), methylprednisolone (Medrol), prednisone Side effects: increase in blood sugar, difficulty sleeping, yeast infections; best to use for the short term or at the lowest dose possible when used long term LOCAL ANESTHETICS Action: treat nerve pain associated with shingles, for example Examples: lidocaine (Lidoderm) for topical anesthesia, intravenous lidocaine to relieve pain or itching
In 1990 the World Health Organization devised a logical approach to using painkilling drugs: More intense pain re- quires more powerful drugs. Adjunct medications (you can think of them as “helper drugs”) can be used at any point along the way. Not only do they relieve pain, they can help other pain-fighting drugs work better.
When pain persists for 12 hours or more per day, long-acting opiates are needed. These drugs include fentanyl (Duragesic), oxycodone (OxyContin), methadone (Dolophine), and slow- release morphine (Avinza and Kadian).
For chronic pain, a long-acting opiate has a number of advan-
Painkillers for Every Level of Pain Pain Intensity Drug Class Examples Comments Mild (1–3)* Moderate
limits daily dose; maybe used with adjunctmedications
their dosage can beincreased for painrelief, as needed
Immediate-releaseforms may take upto 45 minutes toprovide pain relief;lozenge form takeseffect within 15minutes
* Level of pain intensity rated on a scale of 0 to 10, where 0 equals no pain at alland 10 equals the worst pain possible.
tages over a short-acting drug: while the short-acting opiatemay relieve pain more quickly, it only lasts 3 or 4 hours. Thelong-acting opiates can be given in the form of tablets to betaken every 8 to 12 hours. Some capsules may be taken oncedaily. And a long-acting medicated skin patch can give relieffor up to 72 hours. BREAKTHROUGH PAIN
But even when pain is well controlled most of the time,breakthrough pain can still flare up suddenly. Episodes ofbreakthrough pain usually come on within 1 to 3 minutes, last
a short time (perhaps 30 minutes), and can occur severaltimes a day.
There are different types of breakthrough pain:
Incident pain Caused by an activity. For example, persons with hip problems may be comfortable while sitting, but pain strikes when they rise out of a chair. Spontaneous pain Caused for no apparent reason. This sort of pain can come on very suddenly, even if the patient is doing nothing. End-of-dose failure Caused when long-acting medication wears off. For example, if you take a 12-hour medication at 8 o’clock in the morning and you notice that every afternoon at 4 o’clock the pain tends to come on, perhaps this is an end-of- dose failure: the drug has lasted only 8 hours instead of the expected 12. Your doctor can recommend a change in dosing to avoid this problem.
Doctors prescribe a number of short-acting opiates for breakthrough pain, including morphine, hydromorphone (Dilaudid), oxycodone (OxyFast, OxyIR), and hydrocodone (Vicodin). These drugs may take up to 45 minutes to become active. Fentanyl citrate, another strong opiate pain reliever, is available as a mild berry-flavored lozenge (Actiq) that begins to take effect within 15 minutes after being placed between the cheek and gum and moved gently along the inside of the cheek. Dissolving the lozenge in the mouth delivers fentanyl citrate quickly into the bloodstream. If opioid-related side effects occur, they can be managed or minimized by simply removing the lozenge from the mouth. The product works best when acidic drinks, such as cola or orange juice, are avoided before it is used. Drinking water before using Actiq will increase the amount of saliva in the mouth and help dissolve it. Actiq is the only
medication approved by the U.S. Food and Drug Administra-tion specifically for breakthrough pain in cancer.
You can use breakthrough medications as a preventive mea-sure, before any activity that usually causes pain. You can alsouse breakthrough drugs when pain occurs between regularlyscheduled doses of long-acting pain medications. And you cancertainly use breakthrough medication before or after under-going a painful procedure.
Even for uncontrolled pain, doctors have a strategy: Pain medication can be delivered directly into a vein (intravenously) or under the skin using a portable patient-controlled analgesia (PCA) pump. A PCA pump operates continuously, dispensing frequent small doses of pain-relieving medication into the body throughout the day and night. If more medica- tion is needed for a flare-up, simply pushing a button to increase the dose temporarily can provide immediate relief.
If delivering pain medication into the bloodstream through avein or under the skin is not sufficient to relieve the severity of
your pain, your doctor may recom-mend intraspinal delivery—dispensingpain medication directly into thespine by injection or continuouslythrough a small pump and a catheter(tube) inserted into the spine. De-pending upon what type of intraspi-nal delivery your doctor thinks is bestfor you, you may have a pump placedinside your body (see illustration) orthe tubing may be attached to an
Dealing With Side Effects Constipation It’s probably the most common symptom and one of the most distressing. Doctors define constipation as less
than three bowel movements a week (although fewer thanfour or five may be a reduced number for some people). Manycancer patients taking opiates for pain relief experienceabdominal or rectal discomfort, straining, and hard stools. They often report a new pain either in their abdomen or backand other digestive symptoms, such as nausea or vomiting. Some patients lose their appetite.
Oddly enough, even in cases of severe constipation, liquid canseep around a blockage, which some patients mistake fordiarrhea. They make take an antidiarrheal medication such asloperamide (Lomotil), making the problem worse. Withprolonged constipation, other symptoms, such as confusionand urinary retention, can occur.
So it’s very important to use stimulating laxatives wheneveropiates are used. (Stool softeners, while helpful, are notenough.) Pharmacies carry a variety of stimulating laxatives,such as senna products and milk of magnesia, that are avail-able over the counter. When using “bulk formers,” such asMetamucil, drinking plenty of fluid is very important. Other-wise, you may become more constipated. A prescription-onlypowder laxative called MiraLax can help, without the need forlarge amounts of liquid. Talk with your doctor, nurse, orpharmacist. Let them know if you are having a problem withconstipation. Sedation Excessive sleepiness can be attributed to many causes. If it occurs with the start of a new opiate prescription, it generally disappears within a week. Medications such as antianxiety drugs and antihistamines can also cause sedation. But other, more serious causes, such as organ failure or infec- tion, could be at fault. Obviously, you should talk to your doctor if sedation persists. He or she may recommend switch- ing opiates, since not all of them have the same side effects.
Taking adjunct medications (discussed on page 5) may enablepatients to reduce the amount of opiate drug needed and thus
reduce sleepiness. Your doctor may also suggest stimulants,such as donepezil (Aricept) or methylphenidate (Ritalin), orwake-promoting agents, such as modafinil (Provigil), to helpyou stay awake during the day without affecting normalnighttime sleep. If these measures do not work, often chang-ing to a different pain medication or route of delivery (such asusing a skin patch or switching to intravenous or intraspinaladministration) might be helpful. Nausea When patients begin using opiates, they may experi- ence nausea for a short time. Anti-nausea drugs, such as prochlorperazine (Compazine), a scopolamine patch (Trans- derm Scop), or metoclopramide (Reglan), may also help. It’s
important to remember that nauseamay also be a side effect of constipa-tion, and patients need to maintainregular bowel movements. If nauseacontinues, talk to your doctor aboutchanging opiates. Itching This opiate side effect is very common on the scalp, head, and neck. It’s not an allergy, it’s not generally a rash, and it usually lasts only a short time. But if itching persists for more than a few days, you may need to change opiates. Be Good to Yourself Using heat, ice, massage, distraction, biofeedback, relax- ation, meditation, imagery, and gentle exercise are all ways you can make yourself feel better. Work closely with your health-care team to improve pain management, to mini- mize or prevent side effects, and to improve your quality of life. Enlist the support of your loved ones. Don’t be afraid to speak up! You do not have to suffer pain. Frequently Asked Questions Q What’s the best way for a patient to “rate” his or her pain?
Depending on the person, his or her cultural background,
age, or other factors, some techniques work better than others. Earlier we talked about the 0 to 10 scale, with 0 equaling nopain and 10 equaling the worst pain possible. Another scalethat works, especially with younger patients or those hamperedby language problems, shows a series of expressive faces withdiffering degrees of discomfort (see below). Sometimes athermometer-type scale is used. It’s best if one of these stan-dardized measures is used, but some patients report their painin a scale of their own devising: through notes on the piano, oreven types of fabric. The most important thing is to find the
Visual Pain Scales for Rating Pain Intensity
way that most accurately describes how you are feeling,whether through words or pictures. The better you can pin-point your pain, its location, and its character, the better yourdoctor can help relieve that pain. Q I see several doctors for my treatment. Which one should prescribe pain medication?
Your medical oncologist knows which cancer treatments
you are using and which pain medications would be best foryour particular case. He or she will follow the profession’s painguidelines. Q What’s the advantage of having a “pain manage- ment team”?
Many hospitals and group practices employ a multidisci-
plinary group of health-care providers that uses the teamapproach to managing a patient’s pain. These teams includepain specialists, physical therapists, nurse practitioners, psy-chologists or psychiatrists, and people who specialize in“complementary care”—techniques such as meditation,hypnosis, or massage. This approach allows doctors to con-centrate on treating the cancer while the team manages painand related symptoms. Q Is it safe for a cancer patient to have a massage?
Generally, yes. Massage can help with muscle tenderness
that results from too much bed rest. It can relax a patient andreduce the stress of chronic pain. Human touch is soothing,and we all need that. However, vigorous massage is notrecommended. The massage therapist must be aware of andavoid tender surgical areas, tumor sites, and any other sensi-tive spots on a patient’s body. In some cases a massage maymake matters worse, so it’s a good idea to first discuss gettinga massage with your doctor or pain management team. Q I started experiencing pain long after I finished my chemotherapy. Is this normal?
It’s not uncommon to have peripheral neuropathy—
numbness or tingling in the legs or arms, hands, or feet—well after treatment. But only your doctor can determinewhether this is latent nerve damage from chemotherapy orpain due to a different problem. Consider asking for aneurological examination. Q I have severe pain in the morning when I awaken. Can I take both my long-acting medication and my short-acting breakthrough medication at the same time?
Yes, each of these drugs has a different function in pain
relief. The long-acting medications take many hours to workbut provide sustained relief. The short-acting medicationswork much more quickly but will be eliminated from yourbody within 3 to 4 hours. Q I need to take my short-acting pain medicine more than 4 times a day. Is this OK?
You may need an adjustment in either your long- or short-
acting drugs or both. Talk with your doctor about how com-fortable you are most of the day and whether the break-through medicine is reducing your pain. Q My short-acting pain medicine doesn’t seem to help. What should I do?
Record your pain intensity before you take your break-
through pain medication and again an hour later. If there islittle or no change in your pain score, talk with your doctor. He or she may recommend either a change in the strength ofyour current medication or a new drug. Q Are there any risks to taking pain-killing drugs for long periods of time?
Side effects such as nausea or constipation might be
considered “minor” risks—they can be dealt with and theyaren’t life threatening. But there are potentially larger risks:Some patients may take it upon themselves to combine over-the-counter drugs with prescription medications, and thatcould cause problems. For instance, regularly taking moremore than 8 tablets a day of acetaminophen (Tylenol, forexample) can cause liver damage. If you are taking an opiatesuch as morphine or oxycodone and you also take aspirin or anon-aspirin pain-reliever, such as acetaminophen, ibuprofen(Advil and Motrin), or naproxen (Aleve and Naprosyn), torelieve headaches and other body aches, you may be increas-ing your risk for organ damage. To be safe, talk to your doctorand pharmacist about combining any drugs. Glossary acute pain
Pain that is experienced immediately when the
body is injured. Once healing occurs, acute pain generallydisappears. adjunct medications
pain but can help other pain-fighting drugs work better. breakthrough pain
“break through” chronic pain medication. These episodes canbe controlled with short-acting painkillers. chronic pain
bodily injury. Pain is considered chronic if it is present everyday or nearly every day for more than 3 months. end-of-dose failure
when long-acting medication wears off. incident pain
activity. For example, people with hip problems may becomfortable while sitting, but pain strikes when they rise upfrom a chair. long-acting opiates patient-controlled analgesia (PCA)
painkillers directly into the base of the spine, under the skin ofthe abdomen, or through an intravenous line. A PCA pumpoperates continuously; if more medication is needed, thepatient simply pushes a button to deliver a short burst. short-acting opiates spontaneous pain
no apparent reason. Can come on very suddenly, even if thepatient is doing nothing. Resources CANCERCARE, Inc. 275 Seventh Avenue New York, NY 10001 212.712.8080 1.800.813.HOPE (4673) E-mail: [email protected] Website: www.cancercare.org The American Cancer Society 1.800.ACS.2345 Website: www.cancer.org American Pain Foundation 201 North Charles Street, Suite 710 Baltimore, MD 21201-4111 1.888.615.PAIN (7246) E-mail: [email protected] Website: www.painfoundation.org American Society of Clinical Oncology Website: www.peoplelivingwithcancer.org Department of Pain Management and Palliative Care Beth Israel Medical Center, New York Website: www.stoppain.org National Cancer Institute (NCI) Cancer Information Service 1.800.4.CANCER
The NCI website offers three excellent publications online:
Pain http://cancer.gov/cancerinfo/pdq/supportivecare/pain Understanding Cancer Pain http://cancer.gov/cancerinfo/understanding-cancer-pain Pain Control http://cancer.gov/cancerinfo/paincontrol
The information presented in this patient booklet is provided for your generalinformation only. It is not intended as medical advice and should not berelied upon as a substitute for consultations with qualified health professionalswho are aware of your specific situation. We encourage you to take informa-tion and questions back to your individual health-care provider as a way ofcreating a dialog and partnership about your cancer and your treatment. National Office Services
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