Pain and myeloma Myeloma Infoguide Series

Transcription

1 Pain and myeloma Myeloma Infoguide Series Symptoms and complications

2 This Infoguide has been made possible thanks to the generosity of Myeloma UK supporters. To find out how you can support our vital work call or Myeloma Infoline: or from Ireland

3 Contents 4 Introduction 6 What is myeloma? 9 Treatment for myeloma - the basics 10 What is pain? 12 Types of pain 13 Psychological impact of pain 15 Causes of pain in myeloma 29 Describing your pain 31 Treatment of pain 40 The palliative care team 41 Living with pain 43 Future directions 44 Medical terms explained 49 Appendix 1 50 Further information and useful organisations 64 About Myeloma UK 66 Information available from Myeloma UK 67 Other publications 68 We need your help Disclaimer: The information in this Infoguide is not meant to replace the advice of your medical team. They are the best people to ask if you have questions about your individual situation. This publication is intended for a UK audience. It therefore may not provide relevant or accurate information for a non-uk setting. Infoline:

4 Introduction This Infoguide is written for myeloma patients. It may also be helpful for their families and friends. It aims to: Help you understand what pain is, the different types of pain and causes of pain in myeloma patients Provide information on the different methods of pain treatment available and the role of the palliative care team in the treatment of pain Give guidance on which non-medical strategies are available that may help to improve your pain and may make living with pain a little easier Some of the more technical or unusual words appear in bold the first time they are used and are described in the Medical terms explained section on page 42. 4

5 For more information Myeloma UK provides a wide range of information covering all aspects of the treatment and management of myeloma. For a full publication list visit / publications To order your free copies contact Myeloma UK. Our information is also available to download at To talk to one of our Myeloma Information Specialists about any aspect of myeloma, call the Myeloma Infoline on or from Ireland. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK and Ireland. Information and support about myeloma is also available around the clock at Infoline:

6 What is myeloma? Myeloma, also known as multiple myeloma, is a type of cancer arising from plasma cells that are normally found in the bone marrow. Plasma cells are a type of white blood cell which form part of the immune system. Normal plasma cells produce different types of antibodies (also called immunoglobulins) to help fight infection. In myeloma, the plasma cells become malignant and release a large amount of a single type of antibody, known as paraprotein, which has no useful function. It is often through the measurement of paraprotein that myeloma is diagnosed and monitored. Bone marrow is the spongy material found in the centre of the larger bones in the body. As well as being home to plasma cells, the bone marrow is where blood cells (red blood cells, white blood cells and platelets) are made (see Figure 1). RED BLOOD CELLS WHITE BLOOD CELLS lymphocyte plasma cell monocyte blood stem cell neutrophil BONE MARROW eosinophil basophil PLATELETS Figure 1. Bone marrow responsible for the production of blood cells 6

7 These all originate from blood stem cells. Plasma cells normally make up less than 5% of the total blood cells in the bone marrow. Myeloma affects multiple places in the body (hence why it is sometimes referred to as multiple myeloma ) where bone marrow is normally active i.e. within the bones of the spine, pelvis, rib cage and the areas around the shoulders and hips. The areas usually not affected are the extremities the hands and feet as the bones here do not contain bone marrow. Most of the complications and symptoms of myeloma are caused by a build-up of the abnormal plasma cells (often called myeloma cells) in the bone marrow and the presence of paraprotein in the body. Common problems include bone pain, bone fractures, tiredness due to anaemia, frequent or recurrent infections (such as chest infections, urinary tract infections and shingles), kidney damage and hypercalcaemia. Myeloma most commonly occurs in people later in life i.e. over the age of 65. However, some myeloma patients are younger. It is also slightly more common in men than in women. The causes of myeloma are not fully understood but it is believed to be caused by an interaction of both genetic and environmental factors. There are thought to be multiple environmental factors which may increase the risk of developing myeloma. Exposure to specific chemicals, radiation, viruses and a weakened immune system are considered important trigger factors. It is likely that myeloma develops when a susceptible (at risk) individual has been exposed to one or probably several of these factors. There is a slight tendency for myeloma to occur in families. Although rare, this suggests there may be inherited factors in myeloma. This alone is not enough to cause myeloma but Infoline:

8 may make an individual at a slightly higher risk of developing myeloma - other environmental factors also need to have an impact before it develops. In the majority of cases, however, the causes of myeloma are unclear and are likely to be unique to each patient. Much research is ongoing into the biology and genetics of myeloma to determine the factors responsible for its onset and progression. Basic facts There are approximately 5,500 people diagnosed with myeloma every year in the UK There are approximately 17,500 people living with myeloma in the UK at any one time Myeloma accounts for 15% of blood cancers and 2% of cancers generally Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20 For more information see the Is myeloma an inherited cancer? Infosheet from Myeloma UK. 8

9 Treatment for myeloma the basics Treatments for myeloma can be very effective at controlling the disease, reducing symptoms and improving quality of life. Unfortunately, however, myeloma is currently incurable. In general, treatment is given to: Reduce the levels of myeloma as far as possible Control the myeloma for as long as possible Control the myeloma if it returns (relapse) Relieve the symptoms and reduce the complications the myeloma is causing Improve quality of life Prolong life Not everyone diagnosed with myeloma will need to start treatment immediately the timing of treatment will depend on a number of factors including the speed at which the paraprotein level is rising. Treatment for myeloma is often most effective when two or more drugs, with different but complementary mechanisms of action, are given together. Before starting treatment, each option must be considered carefully so that the benefits of treatment are weighed against the possible risks of side-effects. In most patients, overall health, age, fitness and any previous treatments will be taken into account. Treatment is usually given over a number of weeks which may or may not be followed by a rest period. This pattern constitutes one cycle of treatment and a series of treatment cycles is referred to as a course of treatment. Supportive treatments are also commonly prescribed to help prevent or manage potential sideeffects of treatment combinations and also treat the symptoms and complications of myeloma. Infoline:

10 What is pain? Pain is the most common symptom of myeloma affecting up to 80% of patients at some point. It is a sensation which causes discomfort or distress and is often a signal that the body is dealing with an injury or illness. This signal is picked up by pain receptors in the nerve endings and is transmitted from the affected area to the brain. The brain then gathers the information and responds by telling your body to protect itself. Therefore, pain is part of a warning system to minimise potential harm to your body. Most pain resolves when the cause of the pain is eliminated and the body has healed. However, sometimes pain persists even after the body has healed. While pain is most commonly linked to sensations caused by an illness, inflammation, surgery or physical injury, it is also linked to experiences influenced by memories, expectations and emotions. Pain can therefore be caused by both physical and emotional components and may explain in part why pain may persist after the body has healed. Pain is subjective and is very individual. What is bearable in one person may be intolerable in another person, even when the cause of the pain is similar. This difference in perception of pain is partly influenced by background and culture, genetics and gender. As a result, the response to pain is very different from person to person. As a common symptom and complication of myeloma, pain can have a significant impact on patients quality of life, especially if it is untreated or poorly managed. For many myeloma patients, pain can be debilitating and frustrating. It can affect patients physically, 10

11 emotionally and socially and can cause difficulty in performing basic activities of daily life and affect how you cope with other symptoms and complications of myeloma. Pain can also have a significant impact on those closest to the patient. Effective control and management of pain is an important aspect of myeloma treatment. To determine the most effective treatment for myeloma-related pain, your doctor or nurse will identify the type of pain you have and will try to understand both the physical and emotional effects associated with it. Infoline:

12 Types of pain Generally, pain is described as being either acute, chronic or breakthrough. A brief description of each of these terms is given below: Acute is pain that comes on quickly and lasts for a relatively short period of time. Causes of acute pain include, for example, a headache which is quickly resolved with or without treatment, a stubbed toe or a cut finger. Generally, acute pain lasts only as long as it takes for the damage or injury to heal Chronic is pain that does not go away, or comes back often and may exist for months or years. Causes of chronic pain include, for example, arthritis and back pain Breakthrough is pain that is an abrupt, short-lived sharp spike of pain which overrides persistent chronic pain. Breakthrough pain may be a sign that the body is developing a resistance to any pain-relief treatment or that the underlying cause of the pain may be getting worse Pain can also be categorised based on where it is coming from in the body: Somatic or musculo-skeletal pain originates from joints, muscle and bone and is often described as dull and achy Visceral pain originates in the internal organs but is often difficult to locate. It is usually described as pressure-like, deep squeezing Neuropathic pain is caused by damage to, or pressure on the nerves and is described as sharp, burning or shooting 12

13 Psychological impact of pain Pain not only affects the body, but it also has a significant psychological impact and affects how you feel emotionally. In particular, chronic pain can cause frustration, anxiety, anger, fear, poor concentration and sleep deprivation. In turn, these can affect not only how you cope with pain but affect the level of pain you have and how you deal with other aspects of life. Pain that is not treated effectively can therefore lead to a vicious cycle of increased pain, fatigue and anxiety. The way pain is assessed is described in more detail on page 29. Some emotional aspects that are considered when treating pain are listed below: When your level of pain is assessed, it is likely that your doctor or nurse will ask you questions about how you are feeling generally. They may ask you specific questions about the following: How much sleep you get each night and whether you feel tired or are fatigued If you feel anxious, scared or angry If you often feel down or depressed If you feel like you have the support that you need from family and friends Such questions will help your doctor and/or nurse to understand the extent to which pain is impacting on you emotionally and provide the most effective pain treatment plan for you. Your doctor or nurse should be happy to explain to you why they are asking specific questions and how these questions can help them to better assess and treat your pain. Infoline:

14 If your pain is causing you a significant emotional impact, for example is impacting on: Your relationships with others How well you are able to cope with other aspects of your life, for example managing your finances and household duties Your general outlook Then it may be necessary to receive some additional support even if this is just temporary for example counselling or additional social support. A pain assessment should identify any additional emotional and psychological support needs you may need. If you feel this is not being addressed speak to your doctor or nurse and they will be able to help. 14

15 Causes of pain in myeloma There are many potential causes of pain in myeloma. Pain can be a result of the myeloma itself or it can be caused by side-effects of treatment. The type and level of pain can differ vastly from patient to patient. It is therefore important to explain any pain you have in detail to your doctor or nurse. This will help them to identify and treat the cause of your pain as effectively as possible. This section describes some of the most common causes of pain in myeloma and may help you to identify and describe any pain that you may have. Myeloma bone disease Myeloma bone disease is one of the most common and debilitating features of myeloma. Bone pain is a very common symptom of bone disease. Between 70 80% of patients have evidence of myeloma bone disease at the time of diagnosis and most patients will develop it at some point. What is myeloma bone disease? Healthy bone is not static, but it is in a constant state of remodelling which allows for minor areas of damage to be repaired and strengthened while maintaining the structure of the skeleton. Two types of cells play an important role in the normal activity of bones. These are: Osteoblasts (cells which form new bone) Osteoclasts (cells which break down old bone) Normally, the rate of bone formation and the rate of bone breakdown are equal, so that the bone mass remains the same. In myeloma, however the myeloma cells in the bone marrow affect the surrounding bone, causing it to be broken down faster than it can be repaired. Infoline:

16 What causes myeloma bone disease? When bone is broken down faster that it is repaired this can lead to a number of problems including, thinning of bone (osteopenia) and the eventual disappearance of pockets of bone called lytic lesions. What causes the pain associated with myeloma bone disease? Osteopenia and lytic lesions can cause a dull pain which may spread over a generalised area or may be more localised Bone fractures caused by compression or thinning instead of injury or trauma - causes persistent severe pain which may be localised or radiate below the injury site. If a fracture occurs in a spinal bone (vertebra), the damaged bone may press on the spinal cord and may cause sharp shooting pain or numbness in the limbs Multiple vertebral fractures can result in the collapse of the spinal column. This can feel like a dull achy pain, an acute agonising localised pain which radiates down the ribs and abdomen, or which radiates around the ribs and abdomen, or can be a shooting pain which travels up and down the leg. As the vertebrae collapse, a curve may develop in the back (kyphosis) which can cause loss of height. Kyphosis is often a cause of chronic back pain and mobility difficulties in myeloma patients. If the kyphosis is severe, it may put pressure on other areas of the body such as the rib cage and cause chest pains Destruction of bone raises calcium levels in the blood (hypercalcaemia) which can sometimes cause pain associated with gastrointestinal symptoms such as constipation and vomiting 16 For more information see the Myeloma bone disease and bisphosphonates Infoguide from Myeloma UK.

17 Peripheral neuropathy Peripheral neuropathy is the term used to describe damage to the nerves in the hands, feet, arms or legs i.e. in the peripheral nervous system. This can cause numbness, tingling, increased sensitivity and pain. It is the most common cause of neuropathic pain in myeloma. Peripheral neuropathy may be caused by the myeloma itself or by some of it s treatments. Damage to the peripheral nervous system interferes with the messages being carried between the brain and the body. This causes a variety of symptoms such as altered sensation, tingling, numbness or pain. The pain caused by peripheral neuropathy is very individual to each patient. It is important that if you develop any (new) pain and/or sensations, you should make your doctor or nurse aware as soon as you notice them. What causes peripheral neuropathy in myeloma? There are a number of potential causes of peripheral neuropathy in myeloma. They include: Myeloma treatments, such as thalidomide, bortezomib (Velcade ) and vincristine (a chemotherapy drug) which, particularly when given in high doses and/or for prolonged periods of time, can be toxic to nerve cells If you have previously received one of these treatments then you may be at greater risk of neuropathy recurring with another new treatment The paraprotein produced by myeloma cells can be deposited on the nerves and damage them. This affects up to 20% of patients before treatment Factors unrelated to myeloma such as diabetes, vitamin deficiency and a history of high alcohol consumption may also contribute to the symptoms of peripheral neuropathy. Infoline:

18 What kind of pain/sensation is associated with peripheral neuropathy? The symptoms of peripheral neuropathy can vary from patient to patient and will depend on which nerves are affected pain may not always be present. In myeloma, the hands and feet are the most commonly affected areas. The pain and sensations associated with myeloma and myeloma treatment-associated peripheral neuropathy may include: Pain in various parts of the body this can vary in intensity and is often described as sharp, burning, or jabbing Pins and needles in the hands, arms, feet and legs you may notice a tingling sensation which can start in your toes or the balls of your feet and travel up your legs. This sensation may also start in your fingers and work its way up your hands and arms Unusual sensations or an increased sensitivity to touch often even the slightest touch can cause extreme discomfort. This is frequently worse during the night Altered sensations such as a feeling of pain or heat when touching something cold Loss of sensation or numbness in the hands and/or feet Muscle cramps, weakness and tremors which can interfere with your ability to perform everyday tasks Symptoms of peripheral neuropathy often start at a low level but can increase and become more significant over time. Therefore, it is extremely important that you tell your doctor or nurse as soon as you develop any of these symptoms. Peripheral neuropathy is often more easily and effectively treated if diagnosed early. For more information see the Peripheral neuropathy Infosheet from Myeloma UK. 18

19 Infection Infection is a common complication of myeloma and therefore infection-related pain can also be common. What causes infection in myeloma patients? There are many different types of infection which may be caused by different types of bacteria, fungi and viruses. Infection is something that everyone has at some point in their lifetime. However, as a myeloma patient you are at an increased risk of getting an infection because as a myeloma patient you have a lower number of white blood cells in your body (leukopenia) and are at an increased risk of infection. Myeloma cells crowd out the healthy blood cells in the bone marrow reducing the number of healthy blood cells, including white blood cells which play an important role in helping our body fight infection. Some of the drugs used to treat myeloma such as thalidomide, bortezomib and lenalidomide (Revlimid ) can also reduce the number of neutrophils (a type of white blood cell) which plays a key role in fighting infection. A low neutrophil level is called neutropenia, which also puts you at greater risk of infection. What type of pain is associated with infection? Infection can occur in any part of the body and the pain associated with it can vary widely. The most commonly occurring infections and the type of pain associated with them include: Lung infections such as pneumonia, can cause chest pains. The pain is usually located on one side of the chest and it is usually sharp and worsens with breathing and coughing Urinary tract infections can cause pain when passing urine, which is felt as a burning sensation. Infections of this Infoline:

20 type can also cause cramping or pressure in the lower back or abdomen Skin infections caused by the shingles virus can be very painful on and around the area of skin affected by the shingles rash. The skin becomes very sensitive to touch and the pain is usually a constant pain. In addition, there may be intermittent sharp or stabbing pain which may, in some cases, continue up to a year after the shingles rash has disappeared. This is often referred to as post-herpetic neuralgia Mouth infections causing mouth ulcers and sores in the inner cheek, inner lip, tongue, gumline and floor of the mouth, can cause pain or a burning sensation which is made worse by eating and drinking. Oral thrush caused by a fungal infection can also cause an uncomfortable burning sensation in the mouth and throat Gastrointestinal infections can cause griping abdominal pains and spasms Fatigue Fatigue is a condition that affects most, if not all, myeloma patients at some point and can be one of the most challenging complications of myeloma. Fatigue is a feeling of extreme tiredness, lethargy or exhaustion, experienced all or most of the time. It is different from the everyday tiredness that comes with the demands of daily life. It is an overwhelming exhaustion that is not relieved by sleep or rest and can affect you physically, psychologically and emotionally. How does fatigue cause pain? Fatigue does not cause pain directly. However, fatigue can have a negative impact on pain. Unfortunately fatigue and pain can be linked together in a vicious cycle if neither is 20

21 addressed properly. For example, it can be difficult to sleep if you are in pain and a lack of sleep can be a contributing factor of fatigue. This can cause the pain you have to feel worse and make it harder to bear. Studies have shown that the level of fatigue a patient has correlates with the level of pain they have. The management of fatigue is therefore, an important factor to consider in the treatment of pain For more information see the Fatigue Infoguide from Myeloma UK. Side-effects of anti-myeloma treatments Treatments that kill myeloma cells also often damage normal healthy cells, causing unpleasant side-effects. Although some of these side-effects don t necessarily directly cause pain, they can be unpleasant and associated with pain, such as: sickness and vomiting although being sick is very unpleasant, the physical act of vomiting is not usually painful. However, sickness and vomiting are often associated with stomach cramps which can be very painful Diarrhoea and constipation both conditions can cause bloating, discomfort and stomach cramps Sore mouth and throat some myeloma treatments, such as high-dose melphalan which is given as part of highdose therapy and stem cell transplantation (HDT-SCT). It can cause the inside of the mouth to blister (known as mucositis) and increase the risk of getting mouth infections. Your mouth and throat may also become sore and eating, drinking and swallowing may become difficult for a while. If eating and drinking are problematic, you may need intravenous fluids and/or nutrition until you are able to resume eating and drinking normally Infoline:

22 Peripheral neuropathy many drugs used to treat myeloma may cause this painful condition as described on page 17. Most side-effects are short- term, and can be avoided, managed well and usually resolve once treatment is finished. Pain due to tests, investigations and procedures Myeloma patients undergo many tests, investigations and procedures. Tests that you receive on a regular basis such as blood tests should not usually cause pain, however they can be a little bit uncomfortable. The sensation is often described as a sharp scratch. However, some of the procedures carried out during diagnosis and and as part of your monitoring during and after treatment and at relapse. can be painful. The tests and treatment procedures that may cause some degree of pain are described below, where you will also find a description of the type of pain you may experience. Not every patient will have all of the listed procedures and it is important to remember that, as pain is subjective and depends on many factors, you may experience more or less pain than is described here. Blood tests Throughout your treatment, you will have regular blood samples taken. Blood samples are important in monitoring your myeloma and your paraprotein levels as well as your liver and kidney function. Blood for such tests are usually taken from a vein in the arm or the back of the hand. What type of pain is involved with a blood test? Generally, blood tests involve a momentary sharp sensation as the needle is placed into the vein but the procedure itself should 22

23 not be painful. You may have a bruise from the area where the blood was taken for a couple of days after the test. The bruise may be painful if pressure is applied to it. Blood tests are usually only painful if it is difficult to find a vein from which a sample can be taken. Under these circumstances, several attempts may be needed to obtain a blood sample. Hickman line You may have a catheter inserted into a central vein for a period of time especially if you are having your treatment by infusion, for instance when you have highdose therapy before stem cell transplantation. The most common type of catheter used is called a Hickman line. This is a tube which is placed into one of your large veins, allowing all of your treatment drips/infusions to be given without inserting a new line into your veins at each visit. collar bone point where central line enters body heart connections for drips or syringes Figure 2. Insertion of a Hickman line Infoline:

24 The Hickman line also allows blood samples to be taken without the need for repeated needle insertions. The procedure for inserting the Hickman line and the possible pain associated with it is described below. How is a Hickman line inserted? Your Hickman line is inserted into one of your large veins through a small cut in your upper chest (see Figure 2). Before this, you will be given an injection of local anaesthetic into the skin to numb the area around your collar bone and chest. This can cause some stinging initially and then numbness. The line is placed under your skin from the chest to the neck and, once in the neck, is passed into a large vein. The part of the catheter outside your body is stitched or taped to the chest and dressed to ensure it does not come out and that it remains clean and dry. The procedure usually lasts between minutes, but occasionally may take longer. 24 What pain is involved with a Hickman line? Although it may be uncomfortable, the insertion of your Hickman line should not be too painful. After the procedure the area may feel sore and tender and your doctor or nurse will be able to provide treatment to reduce the pain. Any tenderness or discomfort should disappear within 24 hours. The most common cause of pain associated with a Hickman line after it has been inserted, is from infection. It is important to keep your Hickman line clean and dry and your doctor or nurse will teach you how to do so to prevent infection. If you have any redness or swelling around the catheter, notice any pus at the insertion site or if you experience any pain, you should tell your doctor or nurse immediately. Once the infection has been treated, there should not be any ongoing pain or discomfort.

25 Bone marrow tests There are two types of bone marrow tests you may need to have. They involve either the removal of some liquid bone marrow (bone marrow aspiration) by suction into a syringe or the removal of a 1 2 cm core of bone marrow tissue in one piece (bone marrow biopsy). The aspirate is looking at the percentage of myeloma cells present in the bone marrow. The biopsy is looking at whether the bone marrow tissue has been infiltrated by the myeloma cells. Both an aspirate and a biopsy are usually carried out at diagnosis for most patients. How is the bone marrow collected? Bone marrow samples are usually taken from the pelvic bone (see Figure 3) that you can feel just below the waist. Occasionally, other large bones such as the breastbone (sternum) may be used for bone marrow aspiration. You will be given a local anaesthetic into the skin and tissue just over the bone. bone bone marrow biopsy needle skin Figure 3 Bone marrow sample being taken from the pelvic bone Infoline:

26 This may cause some stinging initially and then numbness. You may also be given a mild sedative or a general anaesthetic if you request one or if a large sample is required. A needle is inserted through the skin and into the bone. The needle used for a bone marrow aspiration is thin whereas the one used for a bone marrow biopsy is thicker. A syringe is attached to the needle to help draw up the bone marrow sample. If you are having both tests done at the same time, the aspirate will be collected first. For the bone marrow biopsy, the thicker needle is inserted and rotated to capture a core of bone marrow. Once the needle is removed, a pressure bandage is applied to prevent bleeding. Both procedures if done together, one after the other, last only a few minutes. What pain is involved with a bone marrow biopsy? A bone marrow biopsy can be painful. During the procedure it is likely that you will be asked to lie on your front or side. If you have bone pain due to myeloma bone disease lying still in a particular position while the procedure is carried out may be painful. Let the doctor or nurse know if this is painful for you and they may be able to suggest an alternative position. The procedure itself can cause a dull aching pain but it doesn t last long. You may also feel a pulling sensation when the sample is taken. Some patients may experience a sudden sharp pain at this point. After the test, your pelvic area may ache but this normally subsides after a couple of days. Any pain can normally be relieved by over-the-counter paracetamol or by applying a cold compress to the biopsy site. Light exercise such as walking can also help to relieve the pain. It is now recommended that healthcare professionals should use only one bone marrow biopsy so that different tests can 26

27 be done from a single sample without the need for several samples which can be painful and uncomfortable. Radiotherapy Radiotherapy is the use of high-energy radiation (usually X-rays) to kill cancer cells. It works by targeting cells that are dividing rapidly (such as myeloma cells) and damaging them so they cannot reproduce and grow. Why is radiotherapy used in myeloma? Radiotherapy may be used to kill myeloma cells and to relieve pain in localised areas where there is damage caused by myeloma bone disease. Radiotherapy can often relieve pain more quickly than anti-myeloma and/or pain-killing treatments and may sometimes be the initial treatment given. What does radiotherapy involve? Radiotherapy treatment requires specialist staff and equipment and is carried out in the radiotherapy department of larger hospitals. This means that it is sometimes necessary to travel to another hospital for treatment. Normally, you will receive radiotherapy treatment as an outpatient, unless you are already in hospital for other treatment. Radiotherapy is given using a large machine positioned exactly over the area of the body to be treated. Receiving radiotherapy is very similar to having an X-ray. The radiation beam is invisible but the machine may move and make a noise. Radiotherapy only lasts for a few minutes, sometimes seconds. It is important to remain still and breathe normally. Often only one or two treatments of radiotherapy (called fractions) are needed to relieve the pain at any particular site and an improvement is normally noticeable within days. Infoline:

28 What pain is involved with radiotherapy? Like having an X-ray, radiotherapy is a painless procedure. However, you will be asked to lie in a particular position depending where the radiotherapy is being applied to your body. This may cause some discomfort but, as radiotherapy is a very quick procedure, you will not be asked to maintain the position for long. Although radiotherapy itself is a painless procedure, it can cause some mild side-effects and, therefore, a degree of pain in some myeloma patients. Some of the potential side-effects may include: Sensitivity of skin the skin can become sensitive at the site of administration (described as being similar to sunburn). Excessive washing, friction or heat should be avoided and areas treated with radiotherapy should not be exposed to the sun Sickness, vomiting and diarrhoea If side-effects develop during or after radiotherapy, it is important to tell your doctor or nurse as they can be controlled with drugs. The radiation does not stay in the body after treatment so you will not become radioactive and it is safe to mix with other people. For more information about radiotherapy see the Radiotherapy Infosheet from Myeloma UK. 28

29 Describing your pain In order for your doctor or nurse to treat your pain effectively, it is extremely important that you are honest about the level of pain you have and the impact it is having on your life. It is not recommended to play down your pain because you don t want to trouble your doctor, nor exaggerate it, because you are worried you won t be taken seriously. This will not help you get the pain relief you need. You may be asked a range of questions to try to establish the exact nature of your pain this helps to work out which treatment, is most appropriate for you and also provides a baseline measure to find out if the treatments you are prescribed are working. Questions you may be asked include: Where do you feel your pain? When did it begin? What does it feel like? Is it sharp/ dull/throbbing/burning? Does it prevent you from carrying out your daily activities such as getting washed and dressed? Does anything make your pain better or worse? Infoline:

30 What have you tried for pain relief? Is your pain constant? If not, how many times a day (or week) does it occur? Does it occur at different times, i.e. is it worse in the morning or the evening? Do you have any other pain that may not be related to your myeloma? Some patients find that keeping a diary of their pain, over a few days, helps them to describe it more accurately and detect any triggers, patterns or periods of the day when it is worse. You may also develop other symptoms associated with your pain. These can include nausea, headaches, dizziness, shortness of breath, weakness, drowsiness, increased sweating, constipation and/or diarrhoea. You should also discuss any of these symptoms with your doctor or nurse. You will also be asked how your pain is affecting you emotionally (see page 13). You may be asked to rate your pain using a pain rating scale. This is a form with a number of questions about your pain and asks you to give your pain a numerical score (often between zero to 10 with zero representing no pain and 10 representing extreme pain). You can see an example of one in Appendix 1 on page 47. Some doctors or nurses will use this tool or similar ones (e.g. verbal rating scale or body diagrams) to help them to better understand, and therefore treat, your pain. However, these techniques are not used by all doctors or nurses and some rely on their patients self-reporting. 30

31 Treatment of pain The aim of any pain relieving treatment is to provide continuous pain relief, whenever possible, with minimal side-effects. Myeloma-related pain is often relieved by treatment of the myeloma itself and a response to treatment is a major factor in reducing pain and improving quality of life. There are many different pain relief treatment options available, and most hospitals will have access to a specialist team of doctors, nurses and other healthcare professionals who are experts in pain management. The role of the specialist pain team - known as the palliative care team - in the management of your pain and symptoms is described on page 38. Pain control must be tailored specifically to you and it must be reviewed on a regular basis. Not all pain treatments will work in every patient and it is often only through a trial-and-error approach that your doctor will find the best pain relief for you. Some of the most commonly used treatments for pain management for myeloma patients are described below. Medical treatments Anti-myeloma treatments Anti-myeloma treatment (drugs which kill myeloma cells) is a key component of pain management as it is aimed at treating the myeloma itself, which underpins most of the causes of pain. They can be given either in tablet form (orally) or through an injection (intravenously). There are several different types of drugs used to treat myeloma. Infoline:

32 If your myeloma responds to treatment then it may be possible to reduce or stop, any pain-killers you are taking. Pain-killers You may be prescribed painkillers to try to control your pain. There are many types of pain-killers available to treat different types and levels of pain. It is important that an individual approach is taken, so you may be prescribed a number of different types or combinations of pain-killers. They broadly fall into the following categories: Pain-killers for mild pain Pain-killers for moderate pain Pain-killers for severe pain Additional drugs that are not normally used as pain-killers may also be helpful in certain circumstances, e.g. amitriptyline, carbamazepine or gabapentin may help relieve neuropathic pain. Also steroids, particularly dexamethasone, may sometimes be used to relieve bone pain. Pain-killers come in different forms. You may be prescribed pain-killers in tablet, liquid or lollipop form, or as patches, a nasal spray or injections depending on the type and level of pain you have. As with any treatment, most pain-killers will have some side-effects. These can include constipation, nausea, loss of appetite and drowsiness. Most of these side-effects can be prevented and/or managed effectively so it is important to let your doctor or nurse know if you have any side-effects. 32

33 The pain-killers that are most commonly used in myeloma are listed in Table 1 on pages 34 and 35. The over-the-counter non- steroidal anti-inflammatory group of pain-killers (e.g. ibuprofen) are not recommended for use in myeloma as they can worsen kidney damage. As there are such a wide range of pain-killers available, it is important to find the one(s) that work best for you. This may require a trial and error approach as no two patients are alike and the pain they have may be different. It is usual to start with a low-dose or a mild pain-killer first and increase to an optimum dose before a different or stronger type is given. Pain-killers, like other treatments, can cause side-effects and these may differ from patient to patient. It is important that you inform your doctor or nurse if you have any side-effects to your pain-killers even if the treatment is reducing your pain. It may be possible to reduce the dose or try an alternative treatment which will maintain the same (or better) level of pain control without the side-effects. Infoline:

34 Table 1: Pain-killers commonly used for the treatment of pain in myeloma Class: Simple non-opioid analgesics Examples Paracetamol usually given as tablets/capsules Comments Class: Weak opioids (natural and synthetic) Examples Co-codamol, codeine, dihydrocodeine, low-dose tramadol usually given as tablets/capsules Low-dose buprenorphine given as BuTrans patches Useful in mild to moderate pain Comments Provide effective pain relief for moderate pain Can cause confusion and drowsiness. They may also cause nausea/vomiting; caution required in those with kidney damage Class: Strong opioids (natural) Examples Morphine given as liquid or tablets; can be converted to slow release preparations when daily requirements are established Diamorphine usually given by injection Comments Provide effective pain relief for moderate to severe pain Similar side-effects to buprenorphine 34

35 Table 1: Pain-killers commonly used for the treatment of pain in myeloma Class: Strong opioids (synthetic) Examples Oxycodone given as liquid or tablets/capsules High-dose tramadol given as tablets, liquid or slow release tablets Fentanyl given as slow release patches, tablets, lozenges or as a nasal spray High-dose buprenorphine given as Transtec patches Comments Provide effective pain relief for moderate to severe pain; can be used as an alternative to morphine Similar side-effects to buprenorphine Infoline:

36 Bisphosphonates Bisphosphonates are a specific group of drugs that help to protect and strengthen bones and therefore minimise the extent of, or prevent, bone damage. As well as reducing the likelihood of pathological fractures, bisphosphonates are also very effective in relieving bone pain and reducing the need for strong pain-killers. Bisphosphonate treatment is recommended for all myeloma patients requiring anti-myeloma treatment, whether or not myeloma bone disease is evident. The bisphosphonates that are most commonly used in myeloma are: zoledronic acid (formerly known as Zometa ); Aredia (disodium pamidronate) and Bonefos (sodium clodronate). A recent clinical trial showed that zoledronic acid not only reduced the extent of myeloma bone disease, but improved survival in newly diagnosed patients, demonstrating that it has some anti-myeloma properties over and above its effects on bone. National guidelines now recommend zoledronic acid as the bisphosphonate of choice for all patients with active myeloma. Radiotherapy Targeted radiotherapy can be helpful for patients with localised bone pain. Radiotherapy kills off the myeloma cells, which in turn reduces bone pain. Radiotherapy is also effective in relieving the pain caused by a deposit of myeloma cells pressing on the spinal cord, often known as malignant spinal cord compression. Usually, the first sign of spinal cord compression is unexplained back pain which gradually gets worse. The pain may feel like a tight band around the chest or abdomen and can radiate down to the buttocks and legs. Other symptoms of spinal cord compression include incontinence. 36

37 Radiotherapy treatment should be started as soon as possible after spinal cord compression is diagnosed. This is to prevent permanent damage to the spinal cord, which can result in paralysis. Surgical procedures Two surgical procedures that treat vertebral fractures, known as Percutaneous Vertebroplasty and Balloon Kyphoplasty, relieve back pain as well as strengthening the vertebrae. Although slightly different to each other, both procedures involve minimally invasive surgery to repair and stabilise the fractured vertebra by injection of surgical cement directly into the vertebra. These procedures are not suitable for all patients. Doctors select patients very carefully, taking into consideration the location of the pain, the type of vertebral fracture and the time elapsed since the fracture occurred. You will not be considered if you do not have adequate white blood cell counts or if you are prone to bleeding. Usually, more conventional treatments for your back pain will be tried first. For more information see the Surgical interventions Infoguide from Myeloma UK. Anti-emetics Anti-emetics are drugs that are used to prevent or reduce nausea and vomiting. They can be used to treat nausea and vomiting caused by chemotherapy. Although physically being sick is not usually painful, the symptoms associated with sickness, such as stomach cramps, can be. Anti-emetics can therefore help to reduce any pain that may be caused by vomiting. Infoline:

38 Non-medical treatments There are also many non-medical strategies which can be used instead of, or alongside, medical treatments to help treat or relieve your pain. Some of the most common ones include: TENS machine Transcutaneous electrical nerve stimulator (TENS) machines deliver small electrical pulses to the body via electrodes placed on the skin. TENS machines are thought to stimulate the nerves reaching the brain to signal to the body to release its own pain-killers, hormones called endorphins. TENS machines are sometimes available from your physiotherapist and large chemists usually stock them. Acupuncture Acupuncture is part of traditional Chinese medicine and practitioners believe that they can use the balance of the body s own life force to restore wellbeing. Acupuncture needles are applied to areas where this flow is believed to have been blocked in order to restore balance and health. Acupuncture is used by many people to relieve pain but you should keep in mind that you are at an increased risk of infection because of your myeloma and its treatment so you should always inform your doctor or nurse about any complementary therapies that you are considering. 38

39 Gentle massage Gentle massage can be used to relieve muscle pain and tension and can be both therapeutic and relaxing. Remember to tell the massage therapist that you have myeloma and that forceful massage could damage your bones. Correct positioning Often the way that you sit, or lie down, can affect your pain. Move to get comfortable, use supportive cushions or pillows and ask to be seen by a physiotherapist for expert advice. Hot and cold compression packs Hot water bottles and ice packs can be very effective in providing short-term pain relief. It is best not to apply them directly on your skin, and you may need to alternate between hot and cold packs. Relaxation techniques Meditation, visualisation, relaxation or a combination of these can be helpful in relieving pain. Infoline:

40 The palliative care team It is likely that your doctor or nurse will manage your pain treatment. However, if your pain persists you may be referred to a palliative care team. What does the palliative care team do? The palliative care team can be made up of doctors, specialist nurses, psychologists, physiotherapists and occupational therapists the exact members of the team may differ from hospital to hospital. They provide specialist care in symptom control and can give advice and care for patients either at the hospital or in the home. The palliative care team can help you to manage your pain and advise on which treatments you should be given. They also provide psychological, social and holistic support for both you and your family. There is a misconception that the palliative care team are there purely to provide end of life care. This is one aspect of their role, but they also provide specialist care in pain management and symptom control for patients at all stages of their cancer or illness. You can be referred to a palliative care team, by your doctor, at any time. 40

41 Living with pain It can be very difficult to live with pain and you may need a lot of help and support. It is important to remember that the extent of your pain may not always be obvious to family, friends, doctors and nurses. In order for them to know that you are in pain, you have to tell them. Your doctor or nurse will try to reduce your pain by medical, non-medical or surgical interventions but there are also some things that you can do yourself to try to control your pain and to cope with it. Some self-help tips and strategies are listed below: Ask for help when needed Do not be afraid to ask for help from those around you; most family members and friends are glad to be able to offer some assistance. If you think you need help around the home, speak to your doctor or nurse they will be able to arrange for an occupational therapist to assess you. It may be possible for you to have aids fitted around your home (e.g. bath or shower seat) to make day-to-day living easier. Take pain-killers regularly as prescribed Try to stick to the regimen that has been prescribed for you and do not wait until you are in pain before taking your pain-killers as they will not be as effective. If you find that your pain-killers are not effective, go back to your doctor or nurse and try something else. Distraction therapy Some patients find that watching TV, listening to the radio or engaging in a hobby can help to take their mind off the pain for a short while. Infoline:

42 Achieving a balance between regular rest and activity Try to have some structure to your day whilst avoiding overtiring yourself. Moderate gentle exercise (e.g. walking or swimming) can help strengthen your muscles and support your bones. It will also take your mind off your pain and can help lift your mood. Talking about your feelings Anxiety and stress can aggravate pain, so try to talk about your worries or concerns with people who are close to you or with your doctor. If you would like to speak to a trained counsellor, your GP or hospital should be able to organise this for you. Being honest with your doctor or nurse Be honest about any pain that you have, especially any new sites of pain or if it is increasing in intensity. Remember your doctor and nurse are there to help you. 42

43 Future directions As research continues to provide a clearer understanding of the complex nature of myeloma, it may be possible to find treatments that can disrupt the mechanisms involved in its onset and progression. This in turn may provide better ways of improving or preventing myeloma complications such as bone disease and therefore pain, as well as reducing myeloma cell growth. Research is also ongoing to increase the understanding of myeloma-related pain and to develop better pain treatments including ways of preventing pain signals from them by amplifying or stopping them altogether. Infoline:

44 Medical terms explained Amitriptyline: A type of antidepressant drug that can be used to treat neuropathic pain. Anaemia: A decrease in the normal number of red blood cells, or the haemoglobin that they contain, causing shortness of breath, weakness and tiredness. Anaesthetic: A type of drug used to temporarily reduce or take away sensation so that otherwise painful procedures or surgery can be performed. A general anaesthetic makes the patient unconscious and therefore unaware of what is happening. A local anaesthetic numbs the part of the body that would otherwise feel pain. Antibodies (immunoglobulins): Also known as immunoglobulins, antibodies are proteins found in the blood which are produced by cells of the immune system, called plasma cells. Their function is to bind to substances in the body that are recognised as foreign such as bacteria and viruses. They enable other cells of the immune system to destroy and remove them, thereby helping to fight infection. Balloon Kyphoplasty: A procedure used to repair/ stabilise a compression fracture in one or more vertebrae and to relieve pain. It is a similar procedure to percutaneous vertebroplasty but in addition to stabilising the fracture, aims to reshape and restore the height of the damaged vertebra. It involves an inflatable balloon tamp being inserted in the vertebrae and inflated to create a space. The tamp is removed and the space is filled with bone cement. Bone marrow: The soft, spongy tissue in the centre of bones that produces white blood cells, red blood cells and platelets. Bortezomib (Velcade ): A type of drug called a proteasome inhibitor. Carbamazepine: A type of antiepileptic drug that can be used to treat neuropathic pain. 44

45 Catheter: A tube that is placed in a blood vessel to provide a pathway for drugs or nutrients. Chemotherapy: Treatment with potent drugs intended to kill cancer cells. Chemotherapy drugs can be injected into a vein (intravenous or IV) or swallowed as tablets (orally). Dexamethasone: A type of drug called a steroid. Often given alongside other drugs in the treatment of myeloma. Endorphins: Chemicals produced by the body that serve to suppress pain. Fatigue: A feeling of being exceptionally tired, lethargic or exhausted all or most of the time. It does not result from activity or exertion and is not relieved by rest or sleep. Gabapentin: A type of anti-epileptic drug that can be used to treat neuropathic pain. Gastrointestinal: Refers collectively to the stomach, small and large intestine. High-dose therapy: Highdose chemotherapy given intravenously, usually via a HICKMAN or PICC line, prior to patients receiving healthy stem cells as part of the transplantation procedure. Hypercalcaemia: A higher than normal level of calcium in the blood, which may cause loss of appetite, nausea, thirst, fatigue, muscle weakness, restlessness and confusion. Often associated with reduced kidney function since calcium can be toxic to the kidneys. Immune system: The complex group of cells and organs that protect the body against infection and disease. Immunoglobulins (antibodies): Also known as antibodies, immunoglobulins are proteins found in the blood which are produced by cells of the immune system, called plasma cells. Their Infoline:

46 function is to bind to substances in the body that are recognised as foreign such as bacteria and viruses. They enable other cells of the immune system to destroy and remove them, thereby helping to fight infection. Kyphosis: An abnormal curvature of the spine. Leukopenia: A reduced level of white blood cell. White blood cells are important for fighting bacterial infection. Lytic lesions: A damaged area of a bone that shows up as a dark spot on an X-ray. Lytic lesions look like holes in the bone and are evidence that the bone is being weakened. Malignant spinal cord compression: Occurs when the spinal cord is being compressed by a tumour. Malignant: Cancerous cells which have the ability to invade and destroy tissue. Neutropenia: A reduced level of neutrophils, a type of white blood cell important for fighting bacterial infection. Non-steroidal anti-inflammatory drug (NSAID): Drugs used to prevent or treat pain which do not contain steroids. Oral thrush: An infection of yeast fungus in the lining of the mouth. Osteoblast: Cells which form new bone. Osteoclast: Cells which break down old bone. Osteopenia: Thinning or weakening of the bone. Paraprotein: An abnormal antibody (immunoglobulin) produced in myeloma. Measurements of paraprotein in the blood can be used to diagnose and monitor the disease. Pathological fracture: A break in a bone caused by bone disease or bone cancer, rather than solely due to trauma. 46

47 Pelvic bone: The bones which connect the trunk and the legs. Percutaneous Vertebroplasty: A procedure used to repair/ stabilise a compression fracture in one or more vertebrae and to relieve pain. It involves injecting bone cement into the vertebra to stabilise and strengthen it. Peripheral nervous system: Consists of the nerves outside the brain and spinal cord. Peripheral neuropathy: Damage to the nerves that make up the peripheral nervous system causing pain, tingling and altered sensation. Physiotherapist: A healthcare professional who treats patients with physical difficulties resulting from injury, illness, disability or ageing. They work with patients to identify and improve their movement and function. Plasma cells: Specialised white blood cells that produce antibodies (immunoglobulins) to fight infection. Platelets: Small blood cells which are involved in blood clotting. Post-herpetic neuralgia: Nerve pain which persists in patients who have had shingles, after the shingles rash has disappeared. Quality of life: A term that refers to a person s level of comfort, enjoyment, and ability to pursue daily activities. It is a measure of an overall sense of wellbeing. Red blood cells: Blood cells which transport oxygen around the body. Relapse: The point where disease returns or becomes more active after a period of remission or plateau (often referred to as stable disease). Sedative: A type of drug which has a calming effect to help reduce or relieve anxiety, stress or excitement, and is often used to induce sleep. Infoline:

48 Shingles: An infection of a nerve area caused by the same virus which causes chickenpox. Symptoms include painful skin rash. Shingles tends to affect adults with a weakened immune system, who have previously had chickenpox. Side-effects: The undesired effects caused by a drug or treatment, for example fatigue or nausea. Stem cells: The cells from which all blood cells develop. Stem cells give rise to red blood cells, white blood cells and platelets. Stem cells are normally located in the bone marrow and can be harvested from the blood for transplant. Stem cell transplantation: The infusion of healthy stem cells into the body. This allows the bone marrow to recover and renew its blood-forming capacity following the administration of high-dose chemotherapy. Steroid: A group of hormonal substances produced by the body. They are also produced synthetically and used to treat many conditions. Thalidomide: A type of immunomodulatory drug. The drug was originally withdrawn in the 1960s because of birth defects caused when it was used as a treatment for morning sickness in pregnancy. Its use in myeloma is subject to a strict risk management programme. This also applies to the other immunomodulatory drugs used in myeloma such as Revlimid and Imnovid. Velcade (bortezomib): A type of drug called a proteasome inhibitor. Vertebra: A bone which forms part of the spine. White blood cells: Blood cells involved in the body s immune system, which help to fight infection. 48

49 Appendix 1 Example pain rating scale from the British Pain Society. Please mark the scale below to show how intense your pain is. 0 = means no pain and 10 = means extreme pain. How intense is your pain now? no pain How intense was your pain on average last week? extreme pain no pain extreme pain Now please use the same method to describe how distressing your pain is. How distressing is your pain now? not at all distressing How distressing was your pain on average last week? extremely distressing not at all distressing extremely distressing Now please use the same method to describe how much your pain interferes with your normal everyday activities does not interfere interferes completely If you have had treatment for your pain, how much has this relieved (taken away) the pain? no relief complete relief Infoline:

50 Further information and useful organisations United Kingdom Anthony Nolan Anthony Nolan is a charity that matches individuals willing to donate their bone marrow or blood stem cells to people who need lifesaving transplants. It also provides information and support for patients and families who are going through a bone marrow or stem cell transplant. Bloodwise Bloodwise funds research into leukaemia and related blood disorders including lymphoma and myeloma. It also provides free patient information booklets on blood cancers and the related disorders. Blue Badge Scheme England: Northern Ireland: Scotland: Wales: The Blue Badge Scheme provides a national arrangement of on-street parking concessions enabling people with severe walking difficulties who travel, either as drivers or passengers, to park close to their destinations. 50

51 British Association for Counselling and Psychotherapy (BACP) If you are wondering whether counselling is something you should consider the BACP provide information on what therapies are available and what they can help with. If you are looking for a therapist you can search the register on their website. British Heart Foundation The British Heart Foundation provides information and support to people with heart conditions. They fund specialist heart nurses and run rehabilitation courses around the UK. British Red Cross Volunteers assist with a range of local services including care in the home, transport and loans of mobility equipment to help those with health issues lead a full and independent life. Cancer Black Care Cancer Black Care provides a comprehensive support service to ALL members of the community who are affected by cancer, including advice on what financial support is available and advocacy. Infoline:

52 Cancer Focus Northern Ireland Cancer Focus Northern Ireland s Living Well services provide one to one and group support for people with a cancer diagnosis and their family members. It s a range of therapies and activities that you can tailor to meet your needs at each stage in your experience of cancer. Cancer Research UK Cancer Research UK provides a free information service about cancer and cancer care for patients and their families. Carer s Allowance Unit General information about the carer s allowance, and assistance with filling in the application form. Carers Trust The Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. They also provide support specifically for young carers. 52

53 Carers UK Carers UK provides advice, information and support for carers. It produces a directory of national and local carer organisations and can show you where to get help in your area. Citizens Advice Bureau (CAB) England: Wales: Northern Ireland: call your local Bureau Scotland: Citizens Advice Bureau offers advice about debt and consumer issues, benefits, housing, legal matters and employment. It provides assistance with claiming welfare benefits, including practical help with filling out benefit application forms. Check your local telephone directory for details of your nearest branch. Cruse Bereavement Care Cruse Bereavement Care exists to promote the wellbeing of bereaved people and to enable anyone bereaved to understand their grief and cope with their loss. The organisation provides face-to-face and telephone support, counselling and information. Disability Rights UK Disability Rights UK produce high quality information, products and services developed by and for disabled people. They also supply keys for the National Key Scheme (NKS) which offers disabled people independent access to locked public toilets around the UK. Infoline:

54 electronic Medicines Compendium (emc) The emc contains up to date, easily accessible information about medicines licensed for use in the UK. It includes a Medicine Guides section which has been developed to help you understand your medicines and to take them safely. Gov.UK www. gov.uk A government website which provides information about a wide range of public services including benefits such as Attendance Allowance, Personal Independence Payments and Carer s Allowance. You will find phone numbers listed to discuss the different benefits that are available. Help with Health Costs Help with Health Costs gives information about prescription charges and getting help with health costs, such as travelling to appointments, in England and Wales. Hospice UK (Monday Friday, 9am 5pm) Hospice UK supports the development of hospice care in the UK. They have a register of hospices on their website that you can search to find one near you. 54

55 Institute for Complementary and Natural Medicine (ICNM) The ICNM keeps a register of complementary therapy practitioners, which you can search on their website to find one near you. Leukaemia CARE (24 hours a day, 7 days a week) Leukaemia CARE exists to provide care and support to all those whose lives have been affected by blood cancers like leukaemia, lymphoma and myeloma. Macmillan Cancer Support Provides practical, medical and financial information and support to all cancer patients and their carers. If you are deaf or hard of hearing you can use the textphone service on Maggie s Maggie s provides free practical, emotional and social support to people with cancer and their family and friends. Maggie s centres in the grounds of NHS cancer hospitals are dedicated cancer support spaces. Infoline:

56 Marie Curie Cancer Care Marie Curie provides specialist palliative nurses to care for people in their own homes and also has Marie Curie Centres providing free respite and hospice care throughout the UK. Your District Nurse can arrange for a Marie Curie nurse to support you. MedicAlert MedicAlert is a non-profit charity that provides ID bracelets, necklaces and watches help make sure that you receive fast, relevant treatment in an emergency. Mind Mind is a charity which provides advice and support to empower anyone experiencing mental health problems. Their Infoline can provide information on a range of topics relating to mental health. National Debtline Offers free, confidential and independent advice on how to deal with debt problems in England, Wales or Scotland. 56

57 National Institute for Health and Care Excellence NICE is an independent organisation responsible for providing guidance on promoting good health and preventing and treating ill health in England. NICE produces guidance on health technologies (the use of new and existing medicines, treatments and procedures) and clinical practice (guidance on the appropriate treatment and care of people with specific diseases) within the NHS. National Kidney Federation The National Kidney Federation provides information about kidney disease and dialysis, and promotes best practice in renal medicine. NHS Blood and Transplant Provides patient information on blood transfusions, including the benefits and risks of the procedure. NHS 111 Service NHS 111 is staffed by a team of fully trained advisors, supported by experienced nurses and paramedics. You can call 111 when you need medical advice fast but it s not a 999 emergency. NHS 111 is available 24 hours a day, 365 days a year. Calls are free from landlines and mobiles. Infoline:

58 NHS Choices NHS Choices is the UK s biggest health website. It provides a comprehensive health information service from the National Health Service on conditions, treatments, local services in England and healthy living. OvercomeDepression OvercomeDepression aims to offer a unique reference point for information and practical advice on depression. Pain Association Scotland Pain Association Scotland offers support to people with chronic pain and organises pain management support groups across Scotland. Pain Concern Pain Concern provides a range of information about self-help and managing pain. Its helpline offers information, support and a listening ear. 58

59 Patient Advice Liaison Services (PALS) These are available in England to provide patients and their families with information regarding health related enquiries, NHS services and other support available. They can provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint. You will be able to find your local service through your hospital, or by searching on the NHS Choices website Penny Brohn Cancer Care (formerly Bristol Cancer Help Centre) Based in Bristol, Penny Brohn Cancer Care offers specialist support including complementary therapies, nutritional advice and counselling for people affected by cancer. Its helpline provides emotional support and information about complementary therapists and services in your area. Riprap Riprap supports teenagers who have a parent with cancer. Its online service provides the opportunity to share experiences with other teenagers and get information from cancer specialists. Relate Relate offers a confidential counselling service for couples or individuals experiencing difficulties in their relationship. Relate provides support face-to-face, by phone and through its website. Infoline:

60 Samaritans (24 hours a day, 7 days a week) Samaritans provides confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. It offers services by telephone, , letter and face to face. Scope Scope provide support, information and advice to disabled people and their families, including advice on benefits, equipment, therapies and respite. Tenovus Cancer Care Tenovus is a charity committed to the control of cancer through research, education, counselling and patient care. Its helpline offers information and support to those affected by cancer. The Money Advice Service The Money Advice Service is a free and impartial service, set up by the government. It includes advice on insurance, benefits and care and disability. 60

61 The Pensions Advisory Service Funded by the Department for Work and Pensions, the Pensions Advisory Service provides free information, advice and guidance for people with workplace and personal pensions. UK Myeloma Forum The UK Myeloma Forum is an organisation of people professionally engaged in the field of myeloma who are working to improve the outlook for patients with myeloma and related disorders. On behalf of the British Committee for Standards in Haematology, UKMF has produced guidelines on the diagnosis, treatment and management of myeloma. Unbiased.co.uk This is a directory of professional advisers which also, itself, provides financial, mortgage, legal and accounting information. It is run by an independent non-profit body. Ireland ACCORD Caring for marriage and relationships. It is the largest marriage-care agency in Ireland. ACCORD (formerly known as the Catholic Marriage Care Service) accepts and values clients irrespective of their religious or ethnic background. Infoline:

62 Chronic Pain Ireland Chronic Pain Ireland provides information and support to those living with chronic pain, their families and friends. Citizens Information Citizens Information is provided by the Citizens Information Board, the statutory body responsible for the provision of information, advice and advocacy on public and social services. Family Carers Ireland Two charities, The Carers Association and Caring for Carers have merged to form Family Carers Ireland in They provide advice on a wide range of issues, including benefits and respite, and run support groups for carers. Irish Cancer Society The Irish Cancer Society provides advice, support and information to people in Ireland affected by cancer. It also publishes a range of patient information, including booklets on myeloma. 62

63 The Irish Hospice Foundation The Irish Hospice Foundation website includes a directory of hospices across Ireland. Multiple Myeloma Ireland Dedicated Irish myeloma website for patients, family members and those with an interest in myeloma. Overseas Myeloma Patients Europe (MPE) MPE was formed following a merger between the European Myeloma Platform and Myeloma Euronet. It is a non-profit organisation and acts as an umbrella organisation for existing local and national myeloma associations and its members come from nearly 30 countries. MPE is dedicated to raising awareness of myeloma. Multiple Myeloma Research Foundation (MMRF) The MMRF is a US-based private funder of worldwide myelomaspecific research. It provides information about myeloma treatments and international clinical studies. Infoline:

64 About Myeloma UK Myeloma UK is the only organisation in the UK dealing exclusively with myeloma. With Myeloma UK you can... Call our Myeloma Infoline for practical advice, emotional support and a listening ear: UK: Ireland: Find your nearest Myeloma Support Group to meet up and talk to other people face to face. Read Myeloma Matters, our quarterly magazine, which offers a mix of the latest news in research and development for myeloma, and patient and family experiences. 64

65 About Myeloma UK Learn about myeloma from experts and meet others at our Patient and Family Myeloma Infodays. i Visit, a one-stop-shop for information on myeloma; from news on the latest research and drug discovery to articles on support, treatment and care. Watch Myeloma TV which hosts videos about myeloma presented by experts, patients and family members. Use the Discussion Forum for the opportunity to share experiences and advice about living with myeloma. Find us on Facebook here facebook.com/myelomauk Find us on Twitter here twitter.com/myelomauk Infoline:

66 Information available from Myeloma UK Our information covers all aspects of myeloma which we group into six categories. An outline of what the publications within each category cover is given below: Essentials These titles give an overview of myeloma, its treatment and management. Particularly useful for newly diagnosed patients and their families. Treatments and tests This series provides information about the range of treatments and tests used in myeloma. Symptoms and complications These publications cover the most common symptoms and complications of myeloma such as myeloma bone disease and fatigue. Clinical trials and novel drugs This series gives information on many of the promising drugs currently being investigated for the treatment of myeloma in clinical trials. Living well with myeloma These titles provide information relating to living well with myeloma such as diet, managing finances, travel insurance and caring for someone with myeloma. Related conditions Publications on conditions related to myeloma, including MGUS, plasmacytoma, smouldering myeloma and AL amyloidosis. For a full publication list visit /publications. To fill in a short survey about our patient information online, please go to /pifeedback 66

67 Other publications Patient diary This diary helps patients keep a track of hospital appointments and key test results in a practical, simple way. The small things that make all the difference Hints and tips written for people affected by myeloma, by people affected by myeloma. Children s book about myeloma Kelsey and the Yellow Kite tells the story of how a little girl learns to understand about her dad s myeloma. Myeloma A Z A booklet which explains key terms relating to myeloma. Our information and publications are free and available to order by phone. You can also download or read online. askthenurse@myeloma.org.uk Call Infoline:

68 We need your help Thanks to our generous supporters we are able to provide information and services to patients and their families, as well as fund vital research that will help patients live longer and with a better quality of life. Myeloma UK receives no government funding. We rely on fundraising activities and donations. You can support Myeloma UK by: Making a donation Online at /donate Over the phone Or by posting a cheque payable to Myeloma UK, 22 Logie Mill, Beaverbank Business Park, Edinburgh, EH7 4HG Fundraising fundraising is a positive way of making a difference and every pound raised helps. As myeloma is a rare, relatively unknown cancer, fundraising is also a great way to raise awareness. However you decide to raise funds, our Fundraising Team is here to support you. Contact us on or fundraising@myeloma.org.uk Leaving a legacy gifts from Wills are an important source of income for Myeloma UK and will help us to continue providing practical support and advice to myeloma patients and their families. They also help us to undertake research into the causes of myeloma and investigate new treatments. 68

69 Nobody ever forgets the moment they are diagnosed with myeloma. Myeloma UK advances the discovery of effective treatments, with the aim of finding a cure. That is what patients want, it s what they deserve and it s what we do. Judy Dewinter Chairman, Myeloma UK Infoline: