Overcoming Cancer Pain - A guide for people with cancer, their families and friends
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Overcoming Cancer Pain A guide for people with cancer, their families and friends Practical and support information www.cancercouncil.com.au
Overcoming Cancer Pain A guide for people with cancer, their families and friends First published May 2003. This edition November 2013. © Cancer Council Australia 2013. ISBN 978 1 921041 91 4 Overcoming Cancer Pain is reviewed approximately every three years. Check the publication date above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone the Cancer Council Helpline on 13 11 20. Acknowledgements This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Publications Working Group initiative. We thank the reviewers of this booklet: Dr Melanie Lovell, Consultant Palliative Care Physician, Senior Lecturer, Sydney Medical School, University of Sydney, NSW; Prof Frances Boyle AM, Professor of Medical Oncology, Mater Hospital and University of Sydney, NSW; Prof Michael J Cousins AM, Professor & Head, Pain Management & Research Centre, Royal North Shore Hospital, NSW; Carol Kanowski, Clinical Nurse Consultant, North Queensland Persistent Pain Management Service, QLD; Brenda Kirkwood, Helpline Operator, Cancer Council QLD; A/Prof Odette Spruyt, Director, Pain and Palliative Care, Peter MacCallum Cancer Centre, VIC; and Sally White, Consumer. Thank you to Natalie Marie, who contributed to the development of the pain management resources information, particularly pages 16–17 and 54–55. Original writers: Dr Melanie Lovell and Prof Frances Boyle AM Editor: Laura Wuellner. Designer: Luisa Chisari. Printer: SOS Print + Media Group Note to reader Always consult your doctor about matters that affect your health. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for medical, legal or financial advice. You should obtain appropriate independent professional advice relevant to your specific situation and you may wish to discuss issues raised in this book with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Please note that information on cancer, including the diagnosis, treatment and prevention of cancer, is constantly being updated and revised by medical professionals and the research community. Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred by use of or reliance on the information provided in this booklet. Cancer Council NSW Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs. This booklet is funded through the generosity of the people of NSW. To make a donation to help defeat cancer, visit Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113. Cancer Council NSW 153 Dowling Street, Woolloomooloo NSW 2011 Cancer Council Helpline 13 11 20 Telephone 02 9334 1900 Facsimile 02 9334 1741 Email feedback@nswcc.org.au Website www.cancercouncil.com.au ABN 51 116 463 846
Introduction People with cancer don’t always have pain. However, some people may have pain due to the cancer, its treatment, or other conditions that are unrelated to the cancer. There are many ways to manage pain. Ask your health care team to help you control your pain and discomfort. We hope this booklet will give you useful information to help you understand pain and manage it with different treatments. However, it is not intended to take the place of good communication between you and the health professionals caring for you. You need to talk to your doctor, nurse or pharmacist about pain relief. You may also be interested in watching the Overcoming Cancer Pain DVD, available in some states and territories. Contact your local Cancer Council office for details. If you’re reading this booklet for someone who doesn’t understand English, let them know that Cancer Council Helpline 13 11 20 can arrange telephone support in different languages. How this booklet was developed This information was prepared by specialists working in pain management, oncology and palliative care. It is based on the Cancer Pain Education project, sponsored by the Friends of the Mater Foundation, and reflects clinical practice guidelines for the management of pain in people with cancer. People affected by cancer also contributed to this resource.
Contents Key questions.................................................................... 4 What is pain?......................................................................................... 4 What is cancer pain? Does everyone with cancer have it?................... 4 What can cause cancer pain?............................................................... 5 What types of pain are there?............................................................... 6 What affects pain?................................................................................ 8 How can cancer pain be treated?......................................................... 9 When can I use pain relief?................................................................. 10 Is palliative care the same as pain management?.............................. 11 Who helps manage my pain?.............................................................. 12 Key points........................................................................................... 14 Describing pain and discomfort..................................... 15 Keeping a pain diary............................................................................ 17 Cancer treatments for pain relief................................... 18 Using pain medications....................................................................... 19 Medication safety information............................................................. 22 Treating mild pain............................................................ 24 Paracetamol........................................................................................ 24 Non-steroidal anti-inflammatory drugs (NSAIDs) ............................... 24 Treating moderate to severe pain.................................. 26 Opioids................................................................................................ 26 Common questions about opioids...................................................... 30 Non-opioid medications...................................................................... 34 Key points........................................................................................... 36
When pain won’t go away............................................... 37 Epidural or spinal medication.............................................................. 37 Nerve block......................................................................................... 38 Non-medication options................................................. 39 Allied health care................................................................................. 39 Complementary therapies................................................................... 39 Making treatment decisions........................................... 42 Talking with doctors............................................................................ 43 Taking part in a clinical trial................................................................. 44 Seeking support.............................................................. 45 Caring for someone in pain............................................ 47 Questions you may like to ask............................................................ 47 Websites and references................................................ 49 Question checklist........................................................... 50 Glossary........................................................................... 51 Pain diary.......................................................................... 54 How you can help............................................................ 56
Key questions Q: What is pain? A: Pain is not just a sensation that hurts. It is an unpleasant sensory and emotional experience associated with actual or possible tissue damage.1 People experience pain in individual ways. The way pain is felt and how it affects people is influenced by physical, emotional and environmental factors (see page 8). These act directly or indirectly on the body’s nervous system (the brain, spinal cord and nerves). Doctors assess these factors to help treat the pain. You may have pain occasionally or often. It may be steady, throbbing, stabbing, aching or pinching. Pain can cause discomfort, distress or agony. If left untreated, it can also result in anxiety or depression. However you feel pain, it is personal and only you can describe or define it. Q: What is cancer pain? Does everyone with cancer have it? A: Cancer pain is a broad term for different kinds of pain that people may experience when they have cancer. Not everyone with cancer has pain – about one in three people who are treated for cancer experience pain after treatment.2 These people may not be in pain all the time – it may come and go. Pain is more common with advanced cancer. About six out of 10 people with advanced cancer say they have pain.2 4 Cancer Council
Your experience of pain The way you feel cancer pain Pain can have a huge impact depends on several factors, on your life, preventing you such as the type of cancer you from doing the things you want have, its stage, the treatment to do or normally do. you receive, other health issues, your attitudes and Learning to control pain may beliefs about pain, and the allow you to return to many of significance of the pain to you. the activities you enjoy. Q: What can cause cancer pain? A: People with cancer have pain for a variety of reasons. It may be caused by the cancer itself, from treatment or another cause. Some reasons for pain occurring can include: • a tumour pressing on organs, nerves or bone • a bone fracture if the cancer has spread • side effects from chemotherapy, radiotherapy or surgery • poor circulation due to blocked blood vessels • blockage of an organ or tube in the body, such as the bowel • infection or swelling and redness (inflammation) • muscle stiffness from tension or inactivity • poor posture causing back pain. Pain can occur in more than one area of the body at once. Although it is more common in people with advanced cancer (metastatic or secondary cancer), increasing pain doesn’t necessarily mean that the cancer is getting worse or spreading. Key questions 5
If your pain is getting worse, talk to your health care team about its causes and any fears you may have. Q: What types of pain are there? A: There are many types of pain. Pain can be described or categorised depending on what parts of the body are affected or in terms of how long-lasting your pain experience is. • Acute pain – Severe pain that lasts a short time only, possibly for days or weeks. It usually occurs because the body is hurt or strained in some way. The pain generally disappears when the body has healed. • Chronic pain – Pain that lasts for three months or more. Chronic pain may be due to an ongoing problem, but it can develop even after any tissue damage has healed. • Breakthrough pain – A flare-up of severe pain that can occur despite taking medication. It may happen because the dose of medication is not high enough or because the pain is worse at different times of the day or after certain activities. Doctors can prescribe extra doses or a different medication for this – see page 33 for more information. • Soft tissue pain – Caused by damage to or pressure on an organ or muscle. It may be hard to describe exactly where the pain is, but it tends to be sharp, aching or throbbing. 6 Cancer Council
• Nerve pain – Caused by pressure on nerves or the spinal cord, or damage to nerves. It is also called neuropathic pain. People often describe it as burning or tingling, or the sensation of ‘pins and needles’. • Bone pain – Caused by the spread of cancer into the bones, which damages bone tissue in one or more areas. People often describe it as aching, dull or throbbing, and it may be worse at night. • Referred pain – Pain is felt away from the site of the problem (e.g. a swollen liver can cause pain in the right shoulder). This is different to localised pain, which occurs directly where there’s a problem (e.g. pain in the back due to a tumour pressing on nerves in that area). • Phantom pain – A strange sensation of pain in a body part that is no longer there, such as breast pain after the breast has been removed. This type of pain is very real to those who experience it. It can usually be controlled with specialised pain relief used for nerve pain. I had some numbness and pain in my hands from one of the chemotherapy drugs. Doing hand stretches and exercises, and soaking my hands in warm water, helped. The doctors stopped that drug so the numbness wouldn’t become permanent. Ann Key questions 7
Q: What affects pain? A: As well as the cause of the pain itself, your emotions, your environment and your fatigue levels can affect how you feel and react to pain. It’s important for your health care team to understand the way any physical, emotional and environmental factors are impacting on you. • Emotions – People often have an emotional reaction to pain. You may feel worried, depressed or easily discouraged when you’re in pain. Some people feel hopeless, helpless, isolated, embarrassed, inadequate, irritable, angry, frightened or frantic. Ongoing pain can cause anxiety and depression, and these emotions can make the pain even worse. This does not mean that pain is all in the mind, but it is important to look at the emotional causes and effects of pain as much as the physical ones. • Environment – Things and people in your environment – at home, at work and elsewhere – can have a positive or negative impact on your pain. For example, worrying about a child who is being bullied can increase your pain. • Fatigue – Extreme tiredness can make it harder for you to cope with pain. Lack of sleep can increase your pain. Ask your doctor or nurse for help if you are not sleeping well. 8 Cancer Council
Q: How can cancer pain be treated? A: There are many ways of treating both acute and chronic cancer pain. Treatment depends on the cause of the pain, but relief is still available even if the cause is unknown. Treatments include the same methods used to treat cancer, such as: • surgery, radiotherapy and chemotherapy (see page 18) • medications and other treatments specifically for pain (see pages 24–36) • a range of non-medication methods, such as physiotherapy and complementary therapies (see pages 39–41). Many people find a combination of treatments helps, but everyone is different, so it might take time to find the right pain relief. It can take a few weeks for you to feel the benefits of some treatments, so in the meantime you will usually be given a form of strong pain medication. Different things might work at different times, so it is important to persist in finding the best options for you. When you’re tired, you might need some relief that doesn’t take much effort, such as a heat pack. It may also be beneficial to try relaxation or meditation exercises after you have taken some medication. Sometimes it’s not possible to completely control all pain. You may still feel some discomfort. However, your health professionals can help make you as comfortable as possible. Key questions 9
Try various pain relief methods more than once. If it doesn’t work the first time, try it a few more times before you give up. If you’re taking medication that doesn’t seem to work or has stopped working, talk to your doctor – don’t change the dose yourself. Q: When can I use pain relief? A: You can use different types of pain relief whenever you feel any level of pain. It is not true that having cancer means you will experience pain. If you have pain, there is no advantage to being brave or stoic, it’s better to get help and relief. It’s important not to let your pain get out of control before doing something about it. The sooner and more effectively the pain is treated, the less likely it will be a long-term problem. If pain lasts longer than a few days without much relief, see your doctor for advice. Many people try to avoid taking pain medication thinking it is better to hold out for as long as possible. However this usually makes the situation worse. It is better to take medication as prescribed rather than just at the time you feel the pain. Your doctor can talk about dosages and how often to take pain relief. 10 Cancer Council
Linda’s story My husband, Steve, was I nursed Steve at home but diagnosed with cancer of took him to hospital for chemo. unknown primary. It started off I gave him injections to help with a sore back. Then he had control his pain. We also had a trouble walking and the pain palliative care nurse visit every was unbearable. day. He was excellent and became like a friend. The doctors said the cancer was inoperable and untreatable, I also couldn’t have faulted the but they gave my husband nursing staff at the palliative chemotherapy and radiation to care unit. They helped ease relieve his pain and to reduce Steve’s other symptoms, such the size of the secondary as constipation, as well as tumour on his spine. giving me respite. Q: Is palliative care the same as pain management? A: To ‘palliate’ means to relieve. Palliative care includes many aspects, one of which is pain management. The palliative care team includes doctors, nurses, social workers, physiotherapists, occupational therapists and pastoral care workers. They work to maintain your quality of life by easing symptoms of cancer, without trying to cure the disease. This includes: • helping you with pain relief • reducing your stress Key questions 11
• working with you to relieve other symptoms caused by cancer, such as nausea, constipation or breathlessness • focusing on addressing emotional, practical and spiritual needs to aid your comfort • helping you maintain your independence for as long as possible. Your hospital doctor or nurse can put you in touch with a palliative care team for treatment in hospital, and your general practitioner (GP) can refer you to a community palliative care team so you can have treatment at home. Referral to palliative care is not just for end-of-life care. You can use the team when you need to access services. This may be for months or years. For more information, call Cancer Council Helpline 13 11 20 for a free copy of the Understanding Palliative Care booklet, or visit your local Cancer Council website. Q: Who helps manage my pain? A: Different health professionals work together in a team to help manage your pain. This is called a multidisciplinary team (MDT) approach. The MDT may include some of the professionals listed on the opposite page. If your pain is not well controlled, ask your GP or palliative care physician whether a referral to a pain medicine specialist would be helpful for your type of pain. These specialists often work in a pain clinic. 12 Cancer Council
Health professional Role general practitioner takes care of your general health and (GP) coordinates specialist treatment prescribes and coordinates the course of medical oncologist chemotherapy (anti-cancer medication) prescribes and coordinates the course of radiation oncologist radiotherapy to treat painful areas surgeon removes tumours or unblocks affected organs assesses physical, emotional, social and palliative care team spiritual needs and coordinates care a doctor who specialises in treating all types pain specialist of pain, particularly severe or difficult pain administer medication and provide support nurses and help during all stages of your treatment dispenses medications and can give advice pharmacist about drugs, dosage and side effects physiotherapist and help you with physical and practical problems occupational therapist assesses mental factors that increase your psychologist pain and provides psychological methods of pain control counsellor, social help you with emotional and spiritual issues worker and pastoral and can advise on support services care worker Key questions 13
Key points • Not all people with cancer your doctor to make sure have pain. It is more common they don’t interfere with your in people who have advanced medication or treatment. cancer. • Use pain relief as prescribed • There are many types and when you experience pain. causes of pain, which are felt You don’t need to wait until the in different areas of the body pain is severe before taking and with different sensations. pain-relief medication. • Acute pain is severe but usually • A palliative care team works to resolves within a few weeks improve a person’s quality of or months, depending on its life by easing the symptoms of cause. Chronic pain is often cancer, without trying to cure constant and usually lasts for it. Pain relief is an important more than three months. part of palliative care. • Cancer pain has many causes, • A multidisciplinary team (MDT) including the after-effects of works together to help you surgery, a tumour pressing manage cancer pain. The MDT on a nerve or organ, side will probably be made up of effects of chemotherapy or various health professionals, radiotherapy, or bone pain including nurses, specialists from the spread of cancer. and allied health practitioners. • Pain can be treated using • If your pain is not well conventional treatments and controlled, ask your GP or medications. Complementary palliative care physician if a therapies may also be referral to a pain medicine beneficial, but check with specialist would be helpful. 14 Cancer Council
Describing pain and discomfort Describing your pain or discomfort will help your health care team understand what you are feeling, work out the cause of the pain, and plan the most appropriate pain management for you. Some people find it hard to explain their pain or why they are feeling uncomfortable, but answering these questions may help you express this: • In which parts of your body do you feel your pain? • How bad is the pain? (See next page.) • How does it compare to pain you have felt in the past? • What does it feel like? For example, is it dull, throbbing, steady, constant, shooting, stabbing or burning? (Use descriptive words.) • Are there any ‘pins and needles’ or tingling? Is there pain in areas where it feels numb or not quite normal? • Does your pain spread from one area to another (radiate)? • When did the pain or discomfort begin? (Try timing the pain.) • Is your pain constant? If not, how often does it occur? How long does the pain last each time it occurs? • Which of your daily activities does it prevent you from doing? (E.g. getting out of bed, getting dressed, bending down, walking, sitting for long periods, exercising, carrying things, driving.) • What activities do you think you could do or would like to do if the pain wasn’t there? • How does the pain make you feel emotionally? • What relieves your pain? What makes it worse? • What pain relief have you tried? What helped or didn’t help? • Did you have any side effects from the medication? • What have you done in the past to relieve other types of pain? • Is there anything you are worried about with respect to the pain? Describing pain and discomfort 15
Now my local general practitioner is responsible for my pain management, and he consults the specialist if there are problems – this makes things easier for me. Dale How bad is the pain? Some people find that rating their pain using a scale can help them describe their pain. There are different kinds of scales: word – this rates the pain from number – this is from 0–10, none or mild through to moderate with the higher the number, the and severe worse the pain facial – this is the use of facial activity tolerance – this scale expressions to show how the pain includes statements about how the makes you feel pain affects your activities. worst pain severe possible moderate pain moderate pain mild pain no pain pain 0 1 2 3 4 5 6 7 8 9 10 no can be interferes interferes interferes bed rest pain ignored with with with basic required tasks concentration needs 16 Cancer Council
Keeping a pain diary Keeping a record of your pain, what you have tried for relief and how it has worked can help you and those caring for you to understand more about your pain and how it can be managed. Your health professional may give you material to fill in, or you can use the diary on pages 54–55 as a template. Some people use a mobile device, such as a smartphone, to keep track. Triggers Part of keeping a record of the pain may be noting what happens to cause your pain. Sometimes a specific event or situation can cause pain to occur – this is called a trigger. Knowing what triggers your pain, might help you to prevent it or relieve it. For example, if you know that sitting down for a long period of time makes your back ache, you can take a dose of pain relief before travelling or going to a movie. Health professionals contact list Another important part of pain management is writing a list of the health professionals in your team and their contact details (see pages 12–13). Keep this list handy in case you (or your carer) need to get in touch. For example, your pain management specialist may instruct you to call if you need to take four or more doses of breakthrough pain relief, or if you are feeling very nauseated or sedated. Talk to your specialist about what should trigger you to call. Describing pain and discomfort 17
Cancer treatments for pain relief There are different ways to treat cancer pain. Treatment that is aimed at relieving pain, rather than curing the disease, is called palliation or palliative treatment. Depending on the cancer you have, and the location and nature of your pain, the treatments below may be used specifically for pain management. Surgery – An operation can relieve discomfort caused by tumours that obstruct organs, press on nerves or cause bleeding. Examples are unblocking the bile duct to relieve jaundice, which occurs in pancreatic cancer, or removing a painful bowel obstruction, which can occur with ovarian or bowel cancer. Radiotherapy – This treatment injures cancer cells so that tumours shrink and stop causing discomfort. For example, radiotherapy can relieve bone pain caused by the spread of cancer, and headaches caused by increased pressure in the brain due to cancer. Chemotherapy – Cytotoxic drugs used to kill cancer cells or slow their growth. In some cases, chemotherapy can’t cure cancer but can shrink tumours that are causing pain, such as a tumour on the spine that cannot be operated on. You may also receive other drugs, such as targeted therapies. Call the Helpline on 13 11 20 to learn more. 18 Cancer Council
Hormone therapy – Cancers that grow in response to chemical messengers (hormones) in the body can often be slowed down by taking drugs that stop the body’s production of those hormones. The drugs may also shrink tumours that are causing discomfort, reduce inflammation and relieve symptoms of advanced cancer, such as bone pain. Corticosteroids are a type of hormone that lessens swelling around a brain tumour. Call Cancer Council Helpline 13 11 20 for more information, including free booklets about chemotherapy and radiotherapy. Using pain medications Medications that relieve pain are called analgesics. They do not affect the cause of the pain, but they can reduce pain effectively. The medication that is best for you depends on the type of pain you have and how severe it is. Taking your medication regularly is the best way to prevent pain from starting or getting worse. Some people call this ‘staying on top of the pain’. It may mean you can use lower doses of a pain reliever than if you wait until the pain gets bad. Don’t be afraid to admit that you have pain. Different pain medications take different amounts of time to work. For some medication, it is only a few minutes. For others, it is several hours. Some pain medication even needs to be taken for several days or weeks before you get the best relief, so it is important to keep taking it, even if you think it’s not working. Cancer treatments for pain relief 19
Ways medications are given Pain medications are given in several ways, depending on the type of medication and the form that it is available in. This is the most common form of pain medication. Take medication with water or another drink, unless tablet or capsule the doctor tells you otherwise. Don’t take a tablet or capsule with alcohol. This may be an option if you have trouble swallowing liquid tablets or for convenience. These are rubbed on the inside of your cheeks and lozenges gums until they dissolve. A needle is briefly inserted into a vein (intravenously), into a muscle (intramuscularly), or under the skin injection (subcutaneously). You may be able to do your own subcutaneous injections, but other types must be done by a doctor or nurse. skin patch This gradually releases medication into the body. subcutaneous Medication is slowly injected under the skin using a infusion small plastic tube and pump for many hours or days. intravenous Medication is slowly injected into a vein using a small infusion plastic tube and pump over many hours or days. intrathecal Liquid medicine that is delivered into the fluid injection or surrounding the spinal cord. It is commonly used to infusion treat the most severe cancer pain. A pellet placed in the rectum. This may be suitable suppository for someone who has nausea or trouble swallowing. 20 Cancer Council
Pain relief from different medications varies greatly from person to person. It also depends on how much medication you take (the dose) and how often you take it (the frequency). A dose of pain medication should be enough to control the pain until the next scheduled dose. If the pain relief is wearing off before the next dose is due, tell your doctor or nurse. Check if you need to take larger doses to keep the pain under control – your dose may need to change over time. Prescription and non-prescription medications Mild pain relief is available from chemists and supermarkets without a prescription. These are known as over-the-counter or non-prescription medications. Stronger pain medications need a prescription, which means a doctor authorises you to have them (prescribes them). Only a pharmacist can give (dispense) them to you. If you’re in hospital, medications are organised by pharmacists and nurses there. Generic and trade names Medications have a generic often has more than one trade name, which identifies the name, as different companies chemical compounds in the may produce it. drug, and a trade name, which is the manufacturer’s version For a list of generic and trade of the drug. A medication names of opioids, see page 27. Cancer treatments for pain relief 21
Medication safety information You should take precautions when managing or storing your medications to avoid potential dangerous mix-ups. Medicines come in many forms, so you may be taking other substances that you didn’t realise were considered medication. For instance, vitamin supplements and herbal remedies are considered medications. Ask your doctor, nurse or pharmacist about taking any other medications at the same time as your pain relief. This is because different medications may react with each other, stop the substance from working properly in the body, or cause dangerous side effects. • Many pills for colds and flu, and other over-the-counter medications, can be taken with analgesics without any harmful effects. However, some over-the-counter medications contain pain relievers, so a lower dose of pain medication may be needed. • Medications for colds, menstrual (period) pain, headaches and joint or muscle aches often contain a mixture of drugs, including aspirin. People receiving chemotherapy should avoid aspirin because it increases the risk of internal bleeding. Any minor cuts are likely to bleed a lot and not stop bleeding (clot) very quickly. • Over-the-counter medications for allergies may cause drowsiness, as can some pain medications. Taking them together can make it dangerous to drive or to operate machinery. 22 Cancer Council
• Ask your doctor, nurse • Check whether it is safe to or pharmacist for written take any complementary information about your pain medicines, such as nutritional medications: what they are supplements, together with for, when and how to take your pain medication. them, possible side effects and what you can do about • For independent information about your medications, side effects. call the National Prescribing • Keep medications in their Service Medicines Line on original packaging so you and 1300 633 424. other people always know what they’re for. • Keep track of all of your medications by using a list or • Store medication in a safe a smartphone app, such as place that is out of reach the NPS Medicinewise app. of children. See www.nps.org.au. • If you’re worried about • If you suspect you’ve had forgetting to take medications, a reaction to any kind of write a note for yourself, set an medicine, call the Consumer alarm or program a reminder Adverse Medications Event on your phone rather than Line on 1300 134 237 and leaving out pills. tell your health care team immediately. • Regularly check the expiry dates of medications. If they are near or past their expiry, see your doctor for a new prescription. • Take old medications to the pharmacy to dispose of them safely. Cancer treatments for pain relief 23
Treating mild pain Medications used to control mild pain include paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs). These types of drugs are excellent at relieving certain types of pain, such as bone pain, muscle pain and pain in the skin or the lining of the mouth. They can also be used with other pain medications to help relieve moderate to severe pain. Paracetamol Paracetamol is a common drug that comes in many different formulations. An adult should not take more than 4g of paracetamol a day unless their doctor says it’s okay. The dose limit for children depends on their age and weight, so check with the doctor, nurse or pharmacist. Some combination pain relievers, such as Panadeine® Forte, contain paracetamol and count towards your total intake. If taken within the recommended dose, paracetamol is unlikely to cause side effects. Non-steroidal anti-inflammatory drugs (NSAIDs) NSAIDs, such as ibuprofen, naproxen and diclofenac, vary in dose, frequency of dose and side effects. They can cause indigestion or stomach ulcers in some people, and can increase the risk of bleeding in the stomach or intestines. 24 Cancer Council
Some studies show that NSAIDs can lead to heart (cardiac) problems, especially with prolonged use or in people who already have cardiac problems.3 Talk to your doctor or nurse before taking NSAIDs, especially if you have had stomach ulcers, heart disease, get reflux, are having chemotherapy or are taking other medications (such as anticoagulants/blood thinners like warfarin) that also increase your risk of bleeding. You may be given other medication that is less likely to cause indigestion and bleeding, such as celecoxib (another type of NSAID) or paracetamol. I could not believe how much better I felt after taking some pain relief. Everything seemed less stressful and I did not feel so angry and upset all the time. I had resisted taking anything for so long. I thought I should be able to handle the pain. I now wish I had taken something sooner. Bill Treating mild pain 25
Treating moderate to severe pain Opioids are generally used for pain that is hard to ignore or feels very severe. Moderate pain may be a pain score of 4–6 (out of 10), and moderate to severe pain may be a score of 6–10. Opioids There are many different types of opioids, which are always prescribed by a doctor. Some opioids, such as codeine, are used for moderate pain. Codeine relieves pain by being broken down in the body into morphine. However, some people cannot convert codeine, so they don’t get any pain relief from it. If taking Panadeine® or Panadeine® Forte feels like it has the same effect as paracetamol, inform your doctor. You may need other opioids. Strong opioids, such as morphine, oxycodone, hydromorphone, methadone and fentanyl, are safe and effective for moderate to severe pain. These drugs are listed in the table opposite. Fentanyl, for example, is mainly used for severe pain that is fairly constant, or in lozenge form for rapid relief of breakthrough pain. Targin® is a combination of oxycodone and another drug, naloxone. Using naloxone eases constipation, a common side effect of opioids. The dose of opioid is worked out for each person to match their pain level. You may start at a low dose and build up gradually until you reach the right dose. 26 Cancer Council
Generic and trade names for common opioids Generic name Trade names Form Ordine® liquid immediate release Anamorph® tablet immediate release Sevredol ® tablet immediate release morphine MS Contin® tablet slow release Kapanol ® capsule slow release MS Mono® capsule slow release OxyNorm® liquid/capsule immediate release Endone® tablet immediate release oxycodone Proladone® suppository immediate release Oxycontin ® tablet slow release Targin® capsule slow release Dilaudid ® liquid immediate release, tablet immediate release or tablet hydromorphone slow release Jurnista® tablet slow release methadone Physeptone ® tablet, liquid Tramal/Tramal SR® capsule immediate/slow release tramadol Zydol/Zydol SR TM capsule immediate/slow release tapentadol Palexia® capsule immediate/slow release Durogesic® skin patch slow release fentanyl Actiq® lozenge immediate release Norspan® skin patch slow release buprenorphine Temgesic ® lozenge Treating moderate to severe pain 27
Side effects Opioids can affect people in different ways. It can take a few days to adjust to taking strong pain medications. You may have some of the following side effects: • Drowsiness – Feeling sleepy is typical, but this usually only lasts for a few days until the pain relief dose is stable. Tell your doctor or nurse if it lasts longer. • Tiredness – Your body may feel physically tired, so you may need to ask family or friends to help you with household tasks or your other responsibilities. Rest is important, but it’s also beneficial to do some light exercise or activity, such as stretches or walking in the garden or to the letterbox. This helps you maintain a level of independence and can give you some energy. • Feeling sick – This passes when you get used to the dosage or can be relieved with other medication. • Constipation – Most people regularly taking opioid medications need a laxative. Drinking plenty of water, eating a high-fibre diet and getting some exercise also help reduce constipation. • Itchy skin – If you have itchy skin, sometimes it may feel so irritating that it seems painful. Ask your doctor if there is an anti-itch medication available, or if you can try a different opioid for your pain. • Dry mouth – Chewing gum or drinking plenty of liquids helps. 28 Cancer Council
• Poor appetite – You may not feel like eating. Small, frequent meals or snacks and supplement drinks may help. • Confusion or hallucinations – This is rare, so tell your doctor if it occurs. Side effects can occur when you stop taking opioids suddenly too. These are sometimes called withdrawal symptoms or a withdrawal response. To reduce the chance of side effects when you stop taking opioids, your doctor will reduce your dose gradually to allow your body to adjust to the change in medication. It is important not to reduce your dose or stop taking opioids without talking to your doctor first. Differing opinions about pain management Families and friends sometimes family about the prescription, have different opinions about and explain why they have pain relief. Your family members recommended a particular may feel anxious about you treatment for you. taking strong pain medication, or disagree with it (perhaps Tell your family about your pain because they are worried that and how you are feeling. It may you will become addicted). help to explain that keeping the pain under control allows If this happens, have the you to enjoy your time with medical staff talk to your them and remain comfortable. Treating moderate to severe pain 29
Common questions about opioids Most people have questions about taking opioid medications. Some common questions are answered on the following pages. Your pain specialist or nurse can also discuss any concerns you have. If you are caring for someone with cancer pain, you may have some other specific questions about opioids. For some answers to common questions, see pages 47–48. Q: Will I become addicted to opioids? A: No – people taking morphine or other opioids to relieve pain do not become addicted. However, after some time, the body gets used to opioids and if they are stopped suddenly, you may get withdrawal symptoms (see page 29). This is normal and is not the same as an addiction. However, a person who has previously had a drug addiction problem may be at risk of addiction to opioids, if they are later used for cancer pain relief. Using opioids regularly for pain relief is practical and not considered an addiction. Your doctor will monitor your dosage to maintain effective pain relief and avoid potential side effects. Taking opioids for pain relief is different to an addiction. Someone with a drug addiction problem takes drugs to satisfy physical or emotional needs, despite the drugs causing harm. 30 Cancer Council
Patient-controlled analgesic system In some situations, patients may use a computer-controlled system to deliver effective and safe doses into the vein whenever they need pain relief. This is called patient-controlled analgesia (PCA), and is used in hospitals. It is not possible to overdose using this system, as the machine will not deliver further doses until it is safe to do so. Q: Will I need to have injections? A: Not necessarily. Strong pain relievers are usually given by mouth in either liquid or tablet form. If you’re vomiting, opioids can be given via the rectum as a suppository, by a small injection under the skin (subcutaneously), using a skin patch or in lozenge form. Opioids can be injected into a vein for short-term pain relief, such as after surgery. This is called intravenous opioid treatment and it is given in hospital. Treating moderate to severe pain 31
Q: Will the opioids still work if I get used to them? A: Rarely, people who have used opioids for a long time may become tolerant to their original dose. Their doctor will need to increase the dose to keep their pain under control. Your dose of opioids may also be increased if your pain gets worse. There is no benefit in saving the pain control until the pain is severe. However, cancer treatment may make your pain better and you may end up needing less pain medication or even none. If your pain levels decrease or you no longer need opioids, your dose will be reduced gradually to avoid side effects that may occur if you were to stop taking medication suddenly. The World Health Organization estimates that the right medication, in the right dose, given at the right time, can relieve 80–90% of cancer pain.4 Q: Can I stop my medication at any time? A: If your pain gets better, morphine and other opioids should be reduced slowly before stopping them completely. It is important not to stop taking opioids suddenly because this can cause side effects, such as flu-like symptoms or nausea. You should only reduce your dose or stop taking opioids in consultation with your health care team. 32 Cancer Council
Q: Can I drive while using opioids? A: Doctors have a duty to advise patients not to drive if they are a risk to others. During the first days of treatment, you might be less alert, so driving is not advisable. Once the dose is stabilised, you may want to consider driving. Seek your doctor’s advice and keep the following in mind: • Don’t drive if you’re tired, have been drinking alcohol, are taking other medication that makes you drowsy, or if road conditions are bad. Avoid driving at night or long distances. • If you have a car accident while under the influence of a drug, your insurance company may not pay out a claim. • Special rules and restrictions apply to people with brain tumours, including secondary brain cancer, or people who have had seizures. Q: What if I get breakthrough pain? A: You might get a flare-up of pain even though you’re taking regular doses of medication. Breakthrough pain may last only a few seconds, several minutes or hours. It can occur if you’ve been more active than usual or you’ve strained yourself. Sometimes there seems to be no reason for the extra pain. Your medical team can prescribe you medication for breakthrough pain. Slow-release opioids must not be taken for breakthrough pain. Treating moderate to severe pain 33
You need to talk to your health care team who will advise you on how to cope with breakthrough pain. Usually it’s okay to take extra, or top-up, doses of a short-acting opioid (immediate release opioid), which will be prescribed in addition to your regular medication. The doses work fairly quickly, in about 30–40 minutes. It is helpful to keep a record of how many extra doses you need so your doctor can monitor your overall pain management. If you find your pain increases with some activities, taking an extra dose of medication beforehand will allow you to enjoy that activity more. I have an intrathecal pump, which is filled every 10 days by a community nurse. I also take breakthrough medication, but some days I don’t need any. You can never tell. The pain is mysterious. Kate Non-opioid medications The following drugs work on certain kinds of pain and might be prescribed with opioids to help you get the best pain relief. They are usually given by mouth or vein. Some of the drugs take a few days to work, so opioids are used to control the pain in the meantime. If you are taking another drug, it may be possible to lower the dose of the opioids, reducing side effects without losing control of the pain. 34 Cancer Council
Drug type (class) Generic names Type of pain • amitriptyline burning nerve pain, • doxepin peripheral neuropathy pain, antidepressant • nortriptyline burning, electric shocks • duloxetine • carbamazepine burning or shock-like • valproate nerve pain anticonvulsant • gabapentin • pregabalin • lorazepam muscle spasms anti-anxiety • diazepam accompanying severe pain • clonazepam • prednisone headaches caused by steroid • dexamethasone cancer in the brain, or pain from nerves or the liver • pamidronate may help prevent bone bisphosphonates • clodronate damage from cancer and • zoledronate help control bone pain • baclofen muscle spasm, especially GABAß with spinal cord injury human • denosumab may help prevent bone monoclonal damage from cancer and help control bone pain antibody local anaesthetic* • lignocaine severe nerve pain NMDA blocker* • ketamine severe nerve pain *requires careful monitoring Treating moderate to severe pain 35
Key points • Surgery, chemotherapy, 4–6 (out of 10), and moderate radiotherapy and hormone to severe pain may be a score therapy are used to relieve of 6–10. pain, usually by removing or shrinking the tumour, or by • Medications can be given stopping its growth. For other in the form of tablet, liquid or types of pain, or while these lozenge, skin patch, injection treatments are taking effect, or suppository. medications are usually given. • Different medications may • Take precautions when cause different side effects. Tell managing or storing your your doctor or nurse about side medications to avoid potential effects you expericence so they dangerous mix-ups. can help you manage them. • Pain relief can be mild, such • Other medications, such as as paracetamol and non- antidepressants or steroids, steroidal anti-inflammatory may also be given with drugs (NSAIDs), or strong, opioids to make them work such as opioids. more effectively. • Medications used to control • Most people (and their mild pain include non-steroidal families) have questions about anti-inflammatory drugs taking pain medications. (NSAIDs) and paracetamol. Discuss any concerns you have, such as driving or • Opioids are generally used breakthrough pain, with your for pain that is hard to ignore health care team. or feels very severe. Moderate pain may be a pain score of 36 Cancer Council
When pain won’t go away Sometimes pain can be difficult to relieve completely with medications. This may be the case both for people with cancer and for those who have responded well to cancer treatment and are in remission. In these situations, your doctor may suggest you go to a pain medicine specialist in a multidisciplinary pain clinic. Epidural or spinal medication Sometimes, to control pain, morphine needs to be used in such high doses that severe side effects occur. Delivering the morphine directly onto the nerves in the spine via a tube (catheter) can give good pain relief with fewer side effects. Other drugs can also be added to improve pain control. Spinal medication can be given in a number of ways: • Tunnelled epidural catheter – A small tube put in the space around the spinal cord and then tunnelled out to the body’s surface through the skin. It is attached to an external syringe pump, which delivers the medication (e.g. anaesthetic and/or opioid). Medication may be delivered in a single dose, as a continuous infusion, or using a combination of these methods. • Port-a-cath spinal system – Similar to the tunnelled catheter, but medication is delivered through an opening (port) that is attached to the tube under the skin of the chest or abdomen. • Intrathecal catheter and pump – Implanted in the fatty tissue of the abdominal area. The pump is refilled every three months with a needle through the skin into the pump’s port. When pain won’t go away 37
Nerve block When certain substances are injected into or around a nerve, that nerve is no longer able to send (transmit) pain messages. This is called a nerve block. Sometimes nerves to part of the bowel or pancreas can be blocked to give pain relief, especially in pancreatic cancer. This is called a coeliac plexus block. Other pain-relief methods Your specialist may suggest one or more of the following options: • intensive cognitive nerves that are causing behavioural therapy (CBT) – pain, and is used for back guides people to positively and neck pain due to change the way they cope osteoarthritis (breakdown of with their pain and to resume cartilage between joints) normal activity as much • neuromodulation as possible treatments – change nerve • desensitisation – a technique activity through electrical that involves focusing on the pulses that cause the body pain but relaxing at the same to release a substance that time, used for neuropathic stops feelings of pain relating pain (e.g. numbness, tingling to nerve damage (e.g. after or burning) surgery, chemotherapy or radiotherapy, and for • specialised physiotherapy – non-cancer causes) helps reprogram the brain (e.g. dealing with phantom • surgery on the brain or limb pain after an amputation) spinal cord – in rare cases, neurosurgery can be done to • radiofrequency treatment – help relieve pain. uses heat to destroy the 38 Cancer Council
Non-medication options For many people, some types of pain can be relieved without medication or hospital treatment. They may benefit from services offered by allied health professionals or complementary therapists. Allied health care There are many types of allied health carers who support the work of doctors and nurses. Practitioners are usually part of your hospital MDT, or your GP can refer you to private practitioners as part of a chronic disease management plan, such as: • physiotherapy, which can be an important part of your care so that you learn the best ways to sit and lie to relieve pressure, improve circulation and reduce swelling • emotional support through counselling, which can help relieve anxiety and depression that may be contributing to pain • a dietitian, who can advise you on dietary changes to relieve pain caused by eating or digestive problems, such as mouth ulcers, bloating or constipation. Complementary therapies Complementary therapies may boost your wellbeing and help you to cope better with pain and other side effects caused by cancer and its treatment. These therapies may increase your sense of control, decrease stress and anxiety, and improve your mood. There are many types of complementary therapies. See page 41 for a list of therapies. Non-medication options 39
Imagery is one technique that can be used to distract your mind from pain or worries, or make you feel more in control of what is happening to your body. It involves using your imagination to think of shapes, colours, sounds – anything that helps you feel like you are in a particular place.5 Some therapies, such as hypnotherapy, require you to have a consultation with a professional therapist. For others, such as imagery, you can use CDs or DVDs at home, but it may be useful to seek some guidance to learn these techniques safely. Friends or family may also be able to help you – for example, by giving you a gentle massage or doing relaxation with you. Let your doctor know about any complementary therapies you are using or thinking about trying. This is important, as some therapies may not be appropriate depending on your conventional treatment and the pain medications you are taking. You should also tell the complementary therapist about any pain, as some therapies, such as massage and exercise, may need to be modified to accommodate the changes in your body. For more information about complementary therapies, call Cancer Council Helpline 13 11 20. Distraction and keeping your sense of humour are really important. I get a funny video or go out as much as I can. Samantha 40 Cancer Council
Some complementary therapies that may reduce pain Relieves pain or keeps it from getting worse by reducing tension in the muscles. It can help you fall relaxation asleep, give you more energy, reduce your anxiety, and make other pain-relief methods – such as medication or a cold pack – work more effectively. Focuses on breathing techniques and quietening the mind. Mindful meditation encourages people to become more aware of their body, thoughts and meditation surroundings. Visualisation draws on your imagination to produce pleasant thoughts to take the mind off the pain and give a more hopeful outlook. A relaxing therapy that may increase your sense of wellbeing. It helps relieve muscle spasms and massage contractions, and joint stiffness. Aromatherapy is a type of massage using aromatic oils that are soothing and calming. This can be helpful if you are in pain. art therapy, These help people emotionally by allowing them to express their feelings in different ways. The music therapy techniques also provide some distraction from the and journal pain. You can be creative at home, or some hospitals writing and support groups offer professionally run programs. A mild electric current is applied to the skin. This TENS produces a pleasant sensation and relieves some pain. Many physiotherapists offer this treatment. Non-medication options 41
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