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Myeloma and the kidney Myeloma Infoguide Series Symptoms and complications Kidney Infoguide Nov 2015 FINAL.indd 1 01/12/2015 14:25:19 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 0131 557 3332 or email [email protected] Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 2 01/12/2015 14:25:19 Contents 4 Introduction 6 What is myeloma? 9 T reatment for myeloma - the basics 10 What do the kidneys do? 13 Why does myeloma cause kidney disease? 16 What are the symptoms of myeloma kidney disease? 17 T ests used to detect and monitor myeloma kidney disease 19 T he treatment and management of myeloma kidney disease 25 Living with myeloma kidney disease 29 Future directions 30Questions for your doctor/medical team 31 Medical terms explained 35 Further information and useful organisations 48About Myeloma UK 50Information available from Myeloma UK 51 Other publications 52 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: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 3 3 01/12/2015 14:25:19 Introduction This Infoguide is written for myeloma patients. It may also be helpful for their families and friends. It aims to: Help you understand more about what the kidneys do and what happens when the kidneys are damaged Help you understand why 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 31. and how myeloma affects the kidneys Provide information on the symptoms of myeloma kidney disease and how it is diagnosed and managed 4 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 4 01/12/2015 14:25:19 For more information Myeloma UK provides a wide range of information covering all aspects of the treatment and management of myeloma. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK and Ireland. For a full publication list visit www.myeloma.org.uk/ publications From outside the UK and Ireland, call +44 (0)131 557 9988 (charged at normal rate). To order your free copies contact Myeloma UK. Our information is also available to download at www.myeloma.org.uk Information and support about myeloma is also available around the clock at www.myeloma.org.uk To talk to one of our Myeloma Information Specialists about any aspect of myeloma, call the Myeloma Infoline on 0800 980 3332 or 1800 937 773 from Ireland. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 5 5 01/12/2015 14:25:23 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 forms 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 only one 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 Bone marrow Natural killer cell Plasma cell Monocyte Blood stem cell Neutrophil Eosinophil Basophil Platelets Figure 1. Bone marrow – responsible for the production of blood cells 6 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 6 01/12/2015 14:25:23 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 the term ‘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 myeloma cells in the bone marrow and the presence of paraprotein in the blood or in the urine. 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 poorly 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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 7 7 01/12/2015 14:25:23 There is a slight tendency for myeloma to occur in families. Although rare, this suggests there is an inherited genetic factor in myeloma. This alone is not enough to cause myeloma but 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 4,800 people diagnosed with myeloma every year in the UK There are approximately 15,000 – 20,000 people living with myeloma in the UK at any one time Myeloma accounts for 15% of blood cancers and 1% 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 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 8 01/12/2015 14:25:23 Treatment for myeloma – the basics Treatments for myeloma can be very effective at controlling the disease, reducing symptoms and improving quality of life but, as yet, they are not curative. In general, treatment is given to: Reduce the levels of myeloma as far as possible Control the myeloma for as long as possible when given as maintenance treatment Control the myeloma if it has come back again (relapse) Relieve the symptoms and reduce the complications the myeloma is causing Improve quality of life Prolong life It is important to note that not everyone diagnosed with myeloma will need to start treatment immediately and it is usual to wait until the myeloma is actively causing symptoms and complications before starting treatment. Treatment for myeloma is often most effective when two or more drugs, with different but complementary mechanisms of action, are given together. In the past the number of treatment options for myeloma was limited but, with the development of newer treatments in the last decade, there are now more options available. 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. The length of treatment varies depending on the type of treatment(s) being used and the stage at which the treatment is being given. 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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 9 9 01/12/2015 14:25:23 What do the kidneys do? Most people have two kidneys, one located on either side of the spine, just below the rib cage. Each kidney is about the size of a fist and weighs about 160 grams. Your kidneys are connected to your bladder by tubes called ureters. The kidneys carry out many essential functions, including: Filtering the blood to get rid of waste products from the bloodstream Keeping the salt (e.g. sodium and potassium) and water content of the body constant Controlling blood pressure Producing a number of essential hormones These functions are described in more detail below. Waste products Healthy kidneys filter the blood to: Remove waste products and Return vitamins, amino acids, glucose, hormones and other vital substances back into the bloodstream Blood enters each kidney through the renal artery and passes through thousands of tiny filtering systems called nephrons (see Figure 2). Each nephron contains a small cluster of specialised blood vessels called the glomerulus through which blood is filtered, and a tubule which eventually connects to the bladder. However, not all components that make up blood can pass through the glomerulus. Small molecules such as water and sodium can, but larger molecules such as protein cannot. excess fluid from the body 10 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 10 01/12/2015 14:25:23 Once filtered by the glomerulus, the remaining fluid passes into the tubule. Each tubule consists of a pipe which functions to process the fluid and produce urine. The tubules reabsorb vital substance present back into the bloodstream. Any substances and extra water that the body does not need pass out of tubules into the ureter, then into the bladder to be passed out of the body as urine. Nephron Water and electrolytes For the cells of the body to work properly, they need a stable balance of salts (such as potassium and sodium) and water. The salt and water balance of your body is maintained by a series of hormones acting on the kidneys. These hormones control the amount of urine that the kidneys produce and what the kidneys excrete. Filtered blood out Unfiltered blood in Unfiltered blood in Tubule Filtered blood out Glomerulus Urine out Urine out Kidney cross section One nephron Figure 2. Structure of the kidney Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 11 11 01/12/2015 14:25:23 For example, if you do not drink enough, the body fluids become more concentrated and the kidneys excrete less (and more concentrated) urine. If you drink an excess of fluid, the body fluids become more diluted, and the kidneys excrete more (and more dilute) urine, getting rid of the excess that has been taken in. Essential hormones The kidneys also produce hormones and chemicals that are needed for other normal body functions. For example: 1. The hormone erythropoietin, which is essential for the production of red blood cells in the bone marrow. If the kidneys are not working properly they do not produce enough erythropoietin, which can lead to anaemia. 12 2. An active form of vitamin D, which helps to regulate the body’s calcium levels and therefore promote strong, healthy bones. 3. An enzyme called renin which plays an important role in regulating blood pressure. If the kidneys aren’t working properly, too much renin can be produced, increasing blood pressure and sometimes resulting in hypertension (high blood pressure). This is one of the reasons why it is common for people with kidney disease to also have high blood pressure. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 12 01/12/2015 14:25:23 Why does myeloma cause kidney disease? Myeloma kidney disease is a common complication of myeloma. Up to 20% of patients will have some degree of kidney disease at diagnosis and a further 40% will develop kidney disease at some point during the course of their myeloma. Myeloma kidney disease can occur for a variety of reasons. The abnormal protein produced by myeloma cells can damage the kidneys by blocking the tubules. Other complications of myeloma, such as dehydration and a high calcium level (hypercalcaemia), as well as some of the drugs used in the treatment of myeloma, can also cause or contribute to myeloma kidney disease. Light chains and paraprotein In a healthy immune system, there are several different types of immunoglobulin (also known as antibodies). Each immunoglobulin is a Y-shaped structure and is always made up of two identical heavy chains and two identical light chains (see Figure 3). A healthy person produces a mixture of the different immunoglobulins made up of different combinations of heavy and light chains, each of which plays a specialised role in fighting infection. In myeloma, however, only one type of immunoglobulin (called paraprotein) is produced. Paraprotein plays no useful role in the body. In about 20% of patients, the myeloma cells produce only light chains (sometimes called Bence Jones proteins) and no whole immunoglobulins at all. This is called ‘light chain’ or ‘Bence Jones’ myeloma. Light chains are also elevated and measurable in the vast majority of patients that produce whole immunoglobulins (paraprotein). Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 13 13 01/12/2015 14:25:23 The excessive amount of light chains circulating in the bloodstream in myeloma can damage the kidneys. When they enter the kidney they are small enough to pass through the glomeruli and into the tubules. In the tubules, they often combine with another protein called Tamm Horsfall protein. Light chains can bind to Tamm Horsfall protein in the tubule to produce a big protein that sticks in and blocks the tubule, rather than passing through into the urine. This can cause severe kidney damage. In addition to physically blocking the tubules, light chains are also directly toxic to the kidney, causing inflammation to the kidney tissues and exacerbating the damage. Hypercalcaemia Bone is high in calcium and as it is broken down, a large amount of calcium is released into the blood. Myeloma commonly causes excess bone breakdown and this can cause high blood calcium levels (hypercalcaemia). Hypercalcaemia most often Light chain - ‑ Light chain Heavy chain – - Heavy chain Figure 3. Immunoglobulin structure 14 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 14 01/12/2015 14:25:23 presents at the time of diagnosis but is much less common once treatment has started. High levels of calcium in the blood passing through the kidneys can damage them. Dehydration Dehydration can aggravate myeloma kidney disease. This is because if fluid intake is not sufficient and dehydration occurs, this can put the kidneys under additional pressure. For the majority of myeloma patients with any degree of kidney disease at diagnosis, kidney function can be improved by keeping up a high fluid intake. You should try to drink between two and three litres (three to five pints) of fluid per day. If you require dialysis, the amount of fluid that you can drink may be restricted, sometimes to around one litre (a pint and a half) a day. Medications/myeloma treatments Certain medications often used in the treatment of myeloma and its symptoms/complications Kidney Infoguide Nov 2015 FINAL.indd 15 may also affect the kidneys, aggravating any existing damage. For example, some bisphosphonates – used to treat myeloma bone disease – can be toxic to the kidneys. This is because these drugs are removed from the body via the kidneys which can put additional strain on them if they are already damaged. Therefore bisphosphonates such as zoledronic acid (formerly known as Zometa®) are used with caution and often at lower doses – or temporarily stopped – in patients with myeloma kidney disease. Non-steroidal anti-inflammatory drugs (NSAIDs) – such as aspirin and ibuprofen (Nurofen®) – can be toxic to the kidneys and are therefore not recommended for myeloma patients. It is important that you inform your doctor about any non-prescription drugs, vitamins or supplements that you may be taking to ensure that they will not have any negative effects on your kidneys. Infoline: 0800 980 3332 15 01/12/2015 14:25:23 What are the symptoms of myeloma kidney disease? When the kidneys are not working properly, harmful toxins and excess fluids build up in the body, which causes symptoms. The symptoms of myeloma kidney disease may include: Thirst Fatigue Persistent headaches Loss of appetite Nausea and/or vomiting Passing excessive amounts of urine, or very little or no urine Swelling in the face and ankles Shortness of breath Many of the symptoms of myeloma kidney disease are quite general and might be confused with symptoms related to other problems, or side-effects of myeloma treatments (e.g. fatigue which can be caused by both treatment and kidney disease). 16 It is therefore important to mention any new symptoms to your doctor straight away. Patients with myeloma kidney disease can have no symptoms. This is because the body can tolerate even a large reduction in kidney function – for example, most people can remain healthy with only one functioning kidney. However, as kidney disease is a common complication in myeloma, your kidney function will be monitored through regular blood tests (more on page 17). This monitoring means that any indication of a kidney problem is usually picked up early. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 16 01/12/2015 14:25:23 Tests used to detect and monitor myeloma kidney disease The main test that is performed to diagnose and monitor myeloma kidney disease, and to determine the extent of any damage, is a blood test to measure the level of a molecule called creatinine. Creatinine is a waste product that is normally filtered out by the kidney and passed into the urine. Therefore a high creatinine level indicates that the kidneys are not working normally. The creatinine level is combined with your age, gender and ethnicity to provide a more accurate measurement of kidney function which is called an estimated glomerular filtration rate (eGFR). The eGFR assesses how well the kidneys are filtering the blood by estimating how many millilitres (ml) of waste fluid your kidneys can filter from the blood in a minute (ml/min). It is possible to calculate an exact value for the GFR but this is now rarely done because of the need for specialised equipment. A normal eGFR is 60 ml/min or more. The level at which someone has severe kidney damage – where they may require dialysis – is less than 15 ml/min. Further elements of your regular blood tests – such as your red and white blood cell levels and calcium levels – can also provide an indication of how well your kidneys are working. Other tests which can provide important information about your kidneys include: Urine tests – used to see whether there is blood or protein in your urine. The results of some urine tests can be given immediately, but other tests have to be sent to a laboratory for analysis. A test that is often carried out is a 24-hour urine specimen to check light chain levels present in the urine that you are passing Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 17 17 01/12/2015 14:25:24 Kidney biopsy – a definitive diagnosis of kidney disease may be made by taking a small sample of kidney tissue so that the cells can be examined under a microscope for damage. This is only occasionally performed in people with myeloma 18 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 18 01/12/2015 14:25:24 The treatment and management of myeloma kidney disease There are different ways to treat and manage myeloma kidney disease, depending on its underlying cause. It is possible that myeloma kidney disease can be reversed and in some cases the kidneys can fully recover. In about 10% of patients, dialysis is needed. Early diagnosis and intervention is key to preventing permanent kidney damage. Myeloma treatment and high-dose steroids The most effective way of treating myeloma kidney disease is to treat the underlying myeloma and in doing so, reduce the light chain and/or paraprotein level. If you have kidney damage at diagnosis, you may be given high-dose steroids (dexamethasone) before you are started on anti-myeloma treatment. This is because high-dose steroids have been shown to be effective at rapidly reducing light chain levels in many patients. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 19 19 01/12/2015 14:25:25 Supportive treatment For the majority of myeloma patients with any degree of kidney damage, kidney function will improve by employing measures such as: Drinking lots of fluids The most important thing you can do to both reduce the risk of myeloma kidney disease developing, and improve any existing damage, is to drink plenty of fluid. In many cases, kidney disease can be reversible and a high fluid intake may be enough in itself to reverse the damage. You should try to drink between two and three litres (three to five pints) of fluid per day. Most liquids count, so drink as many glasses of water, sparkling water, juice or squash, decaf tea or milk as you can. Caffeinated tea, coffee and alcohol can be included, but in moderation. Your medical team will give you advice about this. 20 If you are severely dehydrated you may be given fluid directly into a vein (intravenous). This will correct dehydration quickly. You may require a short stay in hospital if you are treated with intravenous fluids. If you require dialysis, the amount of fluid that you can drink may be restricted, sometimes to around one litre (a pint and a half) a day. This is because during dialysis fluid is removed from your blood at each session. If you drink too much, the dialysis machine will be unable to remove all of the fluid which can cause problems. However, the amount of fluid that you can drink if you are receiving dialysis treatment varies from person to person. Treating hypercalcaemia with bisphosphonates Bisphosphonates are drugs that help to prevent and slow down bone breakdown and are used in the treatment of myeloma bone disease. By preventing the increased breakdown of the bones, less calcium www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 20 01/12/2015 14:25:25 is released from the bones and hypercalcaemia may be prevented or resolved. Bisphosphonates are removed from the body via the kidneys. If you have myeloma kidney disease doctors will therefore monitor your kidney function more closely if you are receiving bisphosphonate treatment. A reduced dose of bisphosphonate treatment may be used if you have myeloma kidney disease, or bisphosphonate treatment may be temporarily withdrawn. Rapidly treating kidney infections A kidney infection can be very painful and unpleasant and usually happens when bacteria travel up from your bladder into one or both of your kidneys. If treated promptly, a kidney infection doesn’t cause serious harm but it will make you feel very unwell. If a kidney infection isn’t treated, it can get worse and cause permanent kidney damage. Avoiding NSAIDs as pain-killers Avoid using non-steroidal antiinflammatory drugs (such as aspirin, ibuprofen (Neurofen®) and diclofenac), which are commonly used pain-killers. These drugs can reduce the flow of blood to the kidneys and contribute to kidney problems. Erythropoietin As mentioned previously, the kidneys produce a hormone called erythropoietin which is required for the production of red blood cells in the bone marrow. If patients have myeloma kidney disease, the kidneys may not produce enough erythropoietin, which can lead to anaemia. Chronic or severe anaemia can be treated with a drug called EPO, a synthetic (man-made) version of the erythropoietin hormone. Treatment with EPO (given by injection under the skin) is particularly helpful for myeloma patients with kidney problems to help maintain red blood cell levels. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 21 21 01/12/2015 14:25:25 For more information about EPO see the Erythropoietin Infosheet from Myeloma UK. Allopurinol As the kidneys are involved in removing waste products from the body, they play an important role in clearing breakdown products of myeloma cells (that have been killed by treatment) from the body. A potentially serious complication can occur when a large number of myeloma cells are killed rapidly and release toxins into the bloodstream. If the kidneys are not working as well as they should, they cannot efficiently remove these toxins from the blood. The toxins can then cause a number of kidneyrelated complications, including possible kidney failure. Patients with myeloma kidney disease are at higher risk of these complications occurring due to the damage already present. However, all patients who are receiving chemotherapy-based 22 treatment are given a drug called allopurinol to help prevent these complications, at least for the first few cycles of treatment (when the greatest cell death occurs). Dialysis In the majority of patients, kidney damage is temporary and the kidneys can recover. However, in around 10% of patients kidney problems are more severe and require a regular treatment called dialysis. Dialysis is a form of treatment that replicates many of the kidney’s functions. It is often used to treat severe kidney disease, where the kidneys have lost most or all of their function. There are two types of dialysis, haemodialysis and peritoneal dialysis. Haemodialysis is used in the early stages of treatment for kidney failure in myeloma patients. If kidney function does not recover then haemodialysis or peritoneal www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 22 01/12/2015 14:25:25 dialysis can be used in the long-term. Your local kidney unit will spend some time going through the choices available to you. Haemodialysis If you need haemodialysis for kidney failure, this is usually required quite soon after the damage is first identified (within days or weeks). Haemodialysis is carried out by inserting a dialysis line (which is a plastic tube) into a vein in the top of the leg or the neck. This line is then attached to a machine that pumps your blood through a filter. This gets rid of waste products and excess fluids. After the blood has passed through the filter it is returned to your body. Each dialysis treatment takes up to four hours and is usually required at least three times a week. Peritoneal dialysis Peritoneal dialysis is an alternative type of dialysis. It involves using the peritoneum as a filter. The peritoneum is a thin membrane (covering) that surrounds and supports the abdominal organs, such as the stomach and liver. Like the kidneys, the peritoneum contains thousands of tiny blood vessels, making it an effective filtering device. During peritoneal dialysis, a small flexible tube, known as a catheter, is attached to an incision (opening) in your abdomen (tummy). A special dialysis fluid is introduced into the space that surrounds your peritoneum. As blood moves through the peritoneum, waste products and excess fluid are moved out of the blood and into the dialysis fluid. The dialysis fluid is then drained from your body. The process of peritoneal dialysis lasts roughly 30 to 40 minutes and is repeated around four times a day. Alternatively, you can run it overnight. Peritoneal dialysis is not commonly used in myeloma patients, but kidney specialists Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 23 23 01/12/2015 14:25:25 will discuss this with you as an option if your kidneys don’t recover and you need long-term dialysis treatment. More about living day-to-day on long-term dialysis can be found on page 25. Plasmapheresis Theoretically, the level of light chains can be reduced by their physical removal from the blood. Plasmapheresis (also called plasma exchange) has been used to rapidly decrease the light chain concentrations in myeloma 24 patients with severe kidney damage with varying degrees of success. A new method of haemodialysis is currently being investigated and early indications suggest that it may be more efficient at removing light chains than either plasmapheresis or conventional dialysis. Studies are currently in progress to see if this new approach improves outcomes for myeloma patients with kidney disease. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 24 01/12/2015 14:25:25 Living with myeloma kidney disease The added complication of kidney disease in addition to myeloma can be worrying for you and your family, but it does not have to take over your life. By leading a healthy lifestyle and following your doctor’s advice on the different treatments you may be taking for your myeloma and its complications, it is possible to live without symptoms or further deterioration of your kidney function. It can also be possible to prevent kidney damage from occurring in the first place. Looking after your kidneys The following steps can help keep your kidneys as healthy as possible: Do not smoke Maintain a healthy blood pressure (neither too high nor too low). You can influence this by eating a varied diet (particularly avoiding added salt) and doing gentle exercise Reduce the amount of cholesterol in your diet. Cholesterol increases blood pressure and can damage kidney function Myeloma patients who also have diabetes should make sure their blood sugar levels are kept under control Keep well hydrated Look out for any signs or symptoms of kidney damage and report them to your doctor or nurse as soon as possible Living on dialysis If you need dialysis, this can be disruptive to your day-to-day life given the time commitments involved for both types of dialysis. In myeloma patients who require dialysis and recover kidney function, the average time on dialysis treatment is around three weeks. However, around half of Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 25 25 01/12/2015 14:25:25 myeloma patients who require dialysis will need long-term treatment, remaining on dialysis for the rest of their lives. The effects that dialysis can Both haemodialysis and peritoneal dialysis cause sideeffects. This is due to the way that dialysis is carried out and the fact that dialysis can only compensate for the loss of kidney function to a certain extent. The following section provides information on the most common side-effects of haemodialysis (as the most frequently used dialysis method in myeloma) and how to manage them. Stress and anxiety Side-effects of dialysis Fatigue Fatigue, where you feel tired and exhausted all the time, is a common side-effect in patients who are on haemodialysis on a long-term basis. Fatigue is thought to be caused by a combination of: have on the body The dietary restrictions associated with dialysis Fatigue may particularly be a problem for myeloma patients on dialysis given that it is already a common symptom of myeloma and a side-effect of some anti-myeloma treatments. There are several treatment options that may be of some use in helping to improve the symptoms of fatigue. You may want to consult a dietician because your diet may need to be adjusted in order to boost your energy levels. Moderate, regular exercise can also improve symptoms of fatigue. Although it may be hard even to think about exercise when you are feeling so exhausted, just a small increase in physical activity can boost energy levels. The loss of normal kidney function 26 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 26 01/12/2015 14:25:25 For more information see the Fatigue Infoguide from Myeloma UK. Low blood pressure Low blood pressure (hypotension) is one of the most common side-effects of haemodialysis. It can be caused by the drop in fluid levels that occurs during dialysis. Low blood pressure can cause nausea and dizziness. The best way to minimise the symptoms of low blood pressure is to ensure that you keep to your daily fluid intake recommendations. If symptoms of low blood pressure persist, you should consult your dialysis unit because the amount of fluid used during dialysis may need to be adjusted. Infection Patients receiving haemodialysis have an increased risk of developing an invasive infection caused by staphylococcus aureus bacteria. This type of bacteria is usually responsible for minor skin infections such as boils. However, the haemodialysis process can allow the bacteria to enter the body where they can cause a more serious invasive infection that can spread through the blood, leading to multiple organ failure. This is known as sepsis or blood poisoning. The first symptoms of an infection of this type include: A high temperature (fever) of 38°C (100.4°F) or above Dizziness, which is related to a decrease in blood pressure, or a worsening of low blood pressure if you already have it If you have a high temperature, you should contact your dialysis unit immediately for advice. If you develop an invasive infection, you will need to be admitted to hospital and treated with injections of antibiotics. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 27 27 01/12/2015 14:25:25 Muscle cramps Itchy skin During a haemodialysis session, some people experience muscle cramps, usually in their lower legs. This is thought to be caused by the muscles reacting to the fluid loss that occurs during haemodialysis. Many patients who receive haemodialysis experience itchy skin. This is thought to be due to a build-up of potassium in the body. Avoiding potassium-rich food (such as bananas, spinach and salmon) can help reduce the frequency and severity of this side-effect. Some patients have also found that using moisturising cream can minimise the discomfort caused by itching. You should consult your dialysis unit if you have muscle cramps that become particularly painful. Medication may be available that can help you to cope better with the symptoms. 28 Remember, if you require dialysis your local kidney unit will provide you with a lot of tailored information and specialist support. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 28 01/12/2015 14:25:25 Future directions Myeloma kidney disease is a common complication of myeloma and adds to the overall burden of myeloma. Provided patients are diagnosed early, rapid intervention to reduce the level of excessive light chains can in most cases successfully reverse myeloma kidney disease and improve patient outcomes. A great deal of research is in progress to further understand the most effective ways to manage and treat patients with enduring or permanent myeloma kidney disease. Alternatives to bisphosphonates (which can be toxic to the kidneys) and advances in dialysis are the subject of a number of clinical trials around the world. For example, a new method of haemodialysis called ‘extended high cut-off haemodialysis’ is being investigated and early indications suggest that it may be more efficient at removing light chains than either plasmapheresis or conventional dialysis. Ongoing investigations such as this will give doctors a greater understanding of what treatment options will be most effective for myeloma patients with significant kidney disease. Kidney Infoguide Nov 2015 FINAL.indd 29 Infoline: 0800 980 3332 29 01/12/2015 14:25:27 Questions for your doctor/medical team Some questions you may want to ask your doctor or medical team include: Are my kidneys affected? What is my creatinine level? How often should I have check- ups and blood tests? Will my bisphosphonate dose be reduced or stopped? What can I do to help improve my kidney function? 30 Will my anti-myeloma treatment help my myeloma kidney disease? Will I need to have additional treatment for my myeloma kidney disease? Will I need dialysis? What effect is this likely to have on my day-to-day life? www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 30 01/12/2015 14:25:27 Medical terms explained Anaemia: A decrease in the normal number of red blood cells, or the haemoglobin that they contain, causing shortness of breath, weakness and tiredness. 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. Bisphosphonate: Drugs used to protect bone from being broken down. Commonly used bisphosphonates include Bonefos® (sodium clodronate), Aredia® (pamidronate) and zoledronic acid (formerly known as Zometa®). Bone marrow: The soft, spongy tissue in the centre of bones that produces white blood cells, red blood cells and platelets. Dialysis: When a patient’s kidneys are unable to filter blood, the blood is cleaned by passing it through a dialysis machine. Erythropoietin (EPO): A hormone produced by the kidneys, which is involved in the production of red blood cells. Injections with synthetic erythropoietin (EPO) may be beneficial for patients with damaged kidneys if they are not producing enough erythropoietin and are becoming anaemic. 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. Glomerular filtration rate (eGFR): The volume of fluid filtered by the kidneys over a specified period of time. Glomerulus: The part of the kidney that is responsible for filtering the blood. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 31 31 01/12/2015 14:25:27 Hormone: A chemical messenger released by a cell or organ in one part of the body that affects another part of the body. 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 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. 32 Light chain: The smaller of two components that make up the structure of antibodies (or immunoglobulins). There are two types of light chain, kappa and lambda. In about 20% of patients, the abnormal plasma cells produce only light chains and no whole antibodies (paraprotein) at all. This is called ‘light chain’ myeloma. Light chains are also elevated and measurable in the vast majority of patients that produce paraprotein. Maintenance treatment: Treatment given over an extended period of time, often at a lower dose, after the main standard dose of treatment has finished. Maintenance treatment aims to reduce the risk of disease progression. Malignant: Cancerous cells which have the ability to invade and destroy tissue. Nephron: One of thousands of tiny structures within each kidney that remove waste from the blood to produce urine. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 32 01/12/2015 14:25:27 Non-steroidal anti-inflammatory drug (NSAID): Drugs used to prevent or treat pain which do not contain steroids. Paraprotein: An abnormal antibody (immunoglobulin) produced in myeloma. Measurements of paraprotein in the blood can be used to diagnose and monitor the disease. Peritoneum: A large, thin and complex lining within the abdomen which provides a covering for organs such as the large and small bowel, and the stomach. It provides support for these organs. Plasma cells: Specialised white blood cells that produce antibodies (immunoglobulins) to fight infection. Platelets: Small blood cells which are involved in blood clotting. 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). Renin: An enzyme secreted by and stored in the kidneys that promotes the production of the protein angiotensin. Renin plays an important role in regulating blood pressure. 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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 33 33 01/12/2015 14:25:27 Tamm Horsfall protein: The most abundant protein in normal urine. Its function is not well understood. White blood cells: Blood cells involved in the body’s immune system, which help to fight infection. Tubule: Small tube found in the kidney which reabsorbs salts, minerals and sugars back into the blood, which are useful to the body. Zoledronic acid (previously known as Zometa®):A type of drug called a bisphosphonate, given intravenously. Ureter: The tube that takes urine from the kidneys to the bladder. Vitamin D: Helps regulate the amount of calcium in the body, promoting healthy bones and teeth. Vitamin D is made by our body in reaction to sunlight. Vitamin D is also found in a small number of foods such as oily fish (e.g. salmon, sardines) and eggs. 34 Zometa® (now generally referred to as zoledronic acid): A type of drug called a bisphosphonate, given intravenously. www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 34 01/12/2015 14:25:27 Further information and useful organisations United Kingdom Anthony Nolan www.anthonynolan.org 0303 303 0303 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. Blue Badge Scheme www.gov.uk England: 0844 463 0213 Northern Ireland: 0300 200 7818 Scotland: 0844 463 0214 Wales: 0844 463 0215 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. British Association for Counselling and Psychotherapy (BACP) 01455 883 300 www.bacp.co.uk 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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 35 35 01/12/2015 14:25:27 British Red Cross www.redcross.org.uk 0844 871 11 11 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 www.cancerblackcare.org.uk 020 8961 4151 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. Cancer Focus Northern Ireland www.cancerfocusni.org 0800 783 3339 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 www.cancerresearchuk.org 0808 800 4040 Cancer Research UK provides a free information service about cancer and cancer care for patients and their families. 36 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 36 01/12/2015 14:25:27 Carer’s Allowance Unit 0345 608 4321 General information about the carer’s allowance, and assistance with filling in the application form. Carers Trust www.carers.org 0844 800 4361 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. Carers UK www.carersuk.org 0808 808 7777 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) www.citizensadvice.org.uk England: 03444 111 444 Wales: 03444 77 20 20 Scotland and Northern Ireland: call your local Bureau 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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 37 37 01/12/2015 14:25:27 Cruse Bereavement Care www.cruse.org.uk 0844 477 9400 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. Depression Alliance www.depressionalliance.org 0845 123 2320 (Information pack request line only; Monday – Thursday, Friday, 10am – 2pm) Provides information, support and understanding for those affected by depression and coordinates a network of self-help groups throughout England. Depression Alliance also produces a wide range of publications covering various aspects of depression. Disability Rights UK www.disabilityrightsuk.org 020 7250 8181 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. electronic Medicines Compendium (eMC) www.medicines.org.uk 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. 38 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 38 01/12/2015 14:25:27 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 www.nhs.uk/Healthcosts 0300 330 1343 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 www.hospiceuk.org 020 7520 8200 (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. Institute for Complementary and Natural Medicine (ICNM) 0207 922 7980 www.icnm.org.uk The ICNM keeps a register of complementary therapy practitioners, which you can search on their website to find one near you. Leukaemia CARE www.leukaemiacare.org.uk 0800 169 66 80 (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. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 39 39 01/12/2015 14:25:27 Leukaemia & Lymphoma Research 020 7504 2200 www.leukaemialymphomaresearch.org.uk Leukaemia & Lymphoma Research 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. Macmillan Cancer Support www.macmillan.org.uk 0808 808 0000 If you are deaf or hard of hearing you can use the textphone service on 0808 808 0121. Marie Curie Cancer Care www.mariecurie.org.uk 0800 634 4520 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®www.medicalert.org.uk 01908 951 045 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. National Debtline www.nationaldebtline.org 0808 808 4000 Offers free, confidential and independent advice on how to deal with debt problems in England, Wales or Scotland. 40 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 40 01/12/2015 14:25:27 National Institute for Health and Care Excellence www.nice.org.uk 0300 323 0140 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 www.kidney.org.uk 0845 6010 209 The National Kidney Federation provides information about kidney disease and dialysis, and promotes best practice in renal medicine. NHS Blood and Transplant www.blood.co.uk 0300 123 23 23 Provides patient information on blood transfusions, including the benefits and risks of the procedure. NHS 111 Service www.nhs.uk/111 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: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 41 41 01/12/2015 14:25:27 NHS Choices www.nhs.uk 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. OvercomeDepressionwww.overcomedepression.co.uk OvercomeDepression aims to offer a unique reference point for information and practical advice on depression. Pain Association Scotland www.painassociation.com 0800 783 6059 Pain Association Scotland offers support to people with chronic pain and organises pain management support groups across Scotland. Pain Concern www.painconcern.org.uk 0300 123 0789 Pain Concern provides a range of information about self-help and managing pain. Its helpline offers information, support and a listening ear. 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 www.nhs.uk. 42 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 42 01/12/2015 14:25:27 Penny Brohn Cancer Care www.pennybrohncancercare.org (formerly Bristol Cancer Help Centre) 0845 123 2310 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. Relatewww.relate.org.uk 0300 100 1234 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. Samaritanswww.samaritans.org 08457 90 90 90 (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, email, letter and face to face. Scopewww.scope.org.uk 0808 800 3333 Scope provide support, information and advice to disabled people and their families, including advice on benefits, equipment, therapies and respite. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 43 43 01/12/2015 14:25:27 SSAFA (Soldiers, Sailors, Airmen and Families Association) 0800 731 4880 www.ssafa.org.uk A national charity committed to supporting those who serve or have served (even for just one day) in our Armed Forces. It offers a helpline service, Forcesline, and practical support. Tenovus Cancer Care www.tenovuscancercare.org.uk 0808 808 1010 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 www.moneyadviceservice.org.uk 0300 500 5000 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. The Pensions Advisory Service www.pensionsadvisoryservice.org.uk 0300 123 1047 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. 44 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 44 01/12/2015 14:25:27 UK Myeloma Forum www.ukmf.org.uk 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.ukwww.unbiased.co.uk 0330 100 0755 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 ACCORDwww.accord.ie 01 505 3112 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. Association of Registered Complementary Health Therapists of Ireland 053 938 3734 www.irishtherapists.ie ARCHTI keeps a register of complementary therapy practitioners, which you can search on their website to find one near you. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 45 45 01/12/2015 14:25:27 The Carers Association 1800 24 07 24 The Carers Association is Ireland’s national voluntary organisation for and of family carers in the home. They provide advice on a wide range of issues, including benefits and respite, and run support groups for carers. Chronic Pain Ireland www.chronicpain.ie 01 804 7567 Chronic Pain Ireland provides information and support to those living with chronic pain, their families and friends. Citizens Information www.citizensinformation.ie 0761 07 4000 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. Irish Cancer Society www.cancer.ie 1 800 200 700 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. 46 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 46 01/12/2015 14:25:27 The Irish Hospice Foundation www.hospicefoundation.ie 01 679 3188 The Irish Hospice Foundation website includes a directory of hospices across Ireland. MyMyelomawww.mymyeloma.ie Dedicated Irish myeloma website for patients, family members and those with an interest in myeloma. Overseas Myeloma Patients Europe (MPE) www.mpeurope.org 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) www.themmrf.org 00 1 203 6520219 The MMRF is a US-based private funder of worldwide myelomaspecific research. It provides information about myeloma treatments and international clinical studies. Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 47 47 01/12/2015 14:25:27 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: 0800 980 3332 Ireland: 1800 937 773 Find your nearest Myeloma Support Group to meet up and talk to other people face to face. Read Myeloma Matters, our quarterly magazine offers a mix of the latest news in research and development for myeloma, and patient and family experiences. 48 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 48 01/12/2015 14:25:30 About Myeloma UK Learn about myeloma from experts and meet others at our Patient and Family Myeloma Infodays. i Visit www.myeloma.org.uk, 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: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 49 49 01/12/2015 14:25:33 Information available from Myeloma UK Our information covers all aspects of myeloma. For a full publication list visit www.myeloma.org.uk/publications To fill in a short survey about our patient information online, please go to www.myeloma.org.uk/pifeedback Essentials Gives an overview of myeloma, its treatment and management. Particularly useful for newly diagnosed patients and their families. Treatments and tests Provides information about the range of treatments and tests used in myeloma. Symptoms and complications Information about the most common symptoms and complications of myeloma such as myeloma bone disease and fatigue. Clinical trials and novel drugs Gives information on many of the promising drugs currently being investigated for the treatment of myeloma in clinical trials. Living well with myeloma Provides information relating to living well with myeloma such as diet, managing finances, travel insurance and caring for someone with myeloma. Related conditions Information on conditions related to myeloma, including MGUS, plasmacytoma, smouldering myeloma and AL amyloidosis. 50 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 50 01/12/2015 14:25:38 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. Email: [email protected] Call 0131 557 3332 www.myeloma.org.uk Infoline: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 51 51 01/12/2015 14:25:45 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 www.myeloma.org.uk/donate Over the phone 0131 557 3332 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 0131 557 3332 or email [email protected] 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. 52 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 52 01/12/2015 14:25:47 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: 0800 980 3332 Kidney Infoguide Nov 2015 FINAL.indd 53 53 01/12/2015 14:25:49 Notes 54 www.myeloma.org.uk Kidney Infoguide Nov 2015 FINAL.indd 54 01/12/2015 14:25:49 Published by: Myeloma UK Publication date: October 2013 Last updated: October 2015 Review date: October 2017 Myeloma UK would like to thank Dr Paul Cockwell, Dr Raymond Dang and Joan Smith for their invaluable help and advice in the compilation of this Infoguide. All Myeloma UK publications are extensively reviewed by patients and healthcare professionals prior to publication. PI/KIG/2015/11 Kidney Infoguide Nov 2015 FINAL.indd 55 01/12/2015 14:25:49 Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG T: 0131 557 3332 E: [email protected] Charity No: SC 026116 Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk Myeloma Awareness Week 21 - 28 June Kidney Infoguide Nov 2015 FINAL.indd 56 01/12/2015 14:25:49