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Myeloma Your Essential Guide Myeloma Infoguide Series Essentials Myeloma Essential Guide PRINT LK March 2016.indd 1 23/06/2016 11:45:28 This Essential Guide 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 Myeloma Essential Guide PRINT LK March 2016.indd 2 23/06/2016 11:46:10 Contents 4 Introduction 6 What is myeloma? 53 Maintenance and consolidation treatment 10 What causes myeloma? 54 Myeloma research, new treatments and clinical trials 14 Types of myeloma 56 Living well with myeloma 18 Diagnostic tests and investigations 61 Questions for your doctor/ medical team 23 The symptoms and complications of myeloma 63 Self-help checklist 30 Treatment of myeloma – an overview 36 Initial treatment 37 Less intensive initial treatment 42 Intensive initial treatment 47 How do I know if my treatment is working? 49 Treatment for relapsed and/or refractory myeloma 64 Medical terms explained 72 Appendix 1: Blood tests and normal ranges 74 Further information and useful organisations 88 About Myeloma UK 90 Information available from Myeloma UK 92 We need your help Disclaimer: The information in this Essential Guide 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 Myeloma Essential Guide PRINT LK March 2016.indd 3 3 23/06/2016 11:46:10 Introduction This Essential Guide has been written for myeloma patients. It may also be helpful for their families and friends. It aims to: ■ Help you understand more about myeloma, its treatment and management ■ Help you to make informed decisions about your treatment and care ■ Provide information to carers and family members 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 at the back of this Essential Guide. your diagnosis and provides some practical tips for the weeks and months ahead. This Essential Guide is intended to follow on from the Infopack, providing more detailed information. It is also intended to be read alongside our other Essential Guide - Living well with myeloma. Please contact Myeloma UK if you have not already received a Newly Diagnosed Pack or a Living with Myeloma Essential Guide. If you have recently been diagnosed with myeloma, our Infopack for newly diagnosed myeloma patients focuses on what you need to know following 4 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 4 23/06/2016 11:46:10 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. You will find a list of our publications at the back of this Essential Guide. From outside the UK and Ireland, call +44 (0)131 557 9988 (charged at normal rate). To order your free copies contact Myeloma UK. This and further information is also available to read and download at www.myeloma.org.uk To talk to a Myeloma Information Specialist about any aspect of myeloma, call the Myeloma Infoline on 0800 980 3332 or 1800 937 773 from Ireland. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 5 5 23/06/2016 11:46:10 What is myeloma? Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system. Bone marrow and blood cell formation Bone marrow is the spongy material found in the centre of larger bones in the body such as your spine, pelvis and rib cage (see Figure 1). The bone marrow houses cells called stem cells. These stem cells develop and multiply and eventually become the three types of blood cell that circulate in your bloodstream - red blood cells, white blood cells and platelets. The bone marrow is therefore the centre of all blood cell production. Bone marrow Hollow inner bone Dense outer bone Figure 1. Bone marrow 6 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 6 23/06/2016 11:46:12 Plasma cells Plasma cells are a type of white blood cell produced in the bone marrow. They are part of your immune system. Plasma cells make immunoglobulins (also called antibodies) and release them into the bloodstream. Immunoglobulins fight infection by helping to kill bacteria and viruses and by building up immunity to disease. Plasma cells in myeloma Cancer begins when cells in a part of the body become abnormal and start to multiply uncontrollably. In myeloma, the cells that become abnormal and multiply uncontrollably are the plasma cells in the bone marrow. Myeloma begins when the genetic material (DNA) is damaged during the development of a plasma cell. The damaged DNA is not repaired and causes the plasma cell to become abnormal and multiply uncontrollably. The abnormal plasma cells release a large amount of a single type of abnormal immunoglobulin, which does not help to fight infection. This immunoglobulin is called paraprotein. Plasma cells normally make up less than 5% of the total amount of blood cells in the bone marrow. Bone marrow in myeloma patients may have between 10% and 90% abnormal plasma cells. These abnormal plasma cells are often referred to as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells multiply and spread within the bone marrow, inhibiting the production of normal blood cells (including normal plasma cells) and preventing the bone marrow from working properly. Myeloma affects multiple places in the body where bone marrow is normally active in an adult Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 7 7 23/06/2016 11:46:12 (hence the term ‘multiple’ myeloma) i.e. within the bones of the spine, skull, pelvis, the rib cage and the areas around the shoulders and hips. ■ Fatigue – often due to anaemia caused by the reduction of red blood cells needed to carry oxygen around the body. Fatigue can also be a sideeffect of treatment The areas usually not affected are the hands, feet and lower arm/ leg regions. ■ Frequent or recurrent Most of the symptoms and complications related to myeloma are caused by the build-up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine. ■ Hypercalcaemia or raised infection, such as in the chest or bladder – caused by the reduction of white blood cells required to fight infection calcium level in the blood – resulting from the release of calcium from damaged bone ■ Kidney damage – the Symptoms and complications of myeloma Some of the more common symptoms and complications associated with myeloma include (more information on all of these can be found on pages 23-29) ■ Bone pain and bone fractures – as a result of myeloma cells in the bone marrow affecting the surrounding bone, causing bone destruction. This is often referred to as myeloma bone disease 8 abnormal protein produced by myeloma cells can damage the kidneys. Hypercalcaemia and the effects of some of the drugs used in the treatment of myeloma can cause further damage ■ Peripheral neuropathy in which nerves that make up the peripheral nervous system are damaged – can be caused by the treatments for myeloma and also the myeloma itself. Not all of these complications or symptoms are present at diagnosis and not every patient will experience all or any of these. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 8 23/06/2016 11:46:12 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 Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 9 9 23/06/2016 11:46:12 What causes myeloma? The causes of myeloma are poorly understood but we do know that the onset of myeloma involves a complex multistep process. As previously stated, myeloma develops when DNA is damaged during the development of a plasma cell. This abnormal cell then starts to multiply and spread within the bone marrow. However, what triggers these errors is still not known. Exposure to additional risk factors is thought to play an important role. DNA is made up of genes which contain the information that determine how your body develops, grows and functions. Most diseases are generally caused by a combination of different ‘errors’ which affect certain genes. These genetic errors are either inherited from our parent(s) or are acquired as a result of exposure to something in our environment, such as a toxic substance or virus. A number of factors are associated with an increased risk of myeloma. These include: Progress is being made in understanding how both inherited and acquired genetic errors cause myeloma. 10 Risk factors for myeloma ■ Age, gender or race – myeloma is more common with increasing age, is twice as common among individuals of African origin than of Caucasian or Asian origin and males are 1.5 times more likely to be diagnosed with myeloma than females ■ Family history of myeloma – people who have a close relative (parent, sibling, child) with myeloma are up to twice as likely to get myeloma than the general population www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 10 23/06/2016 11:46:12 ■ Weight – obesity is a risk factor for many cancers including myeloma ■ Exposure to toxic substances - e.g. petrochemicals, agricultural chemicals and radiation ■ Some autoimmune disorders – e.g. rheumatoid arthritis and multiple sclerosis ■ Exposure to certain viral infections – e.g. hepatitis, HIV and herpes virus How and why these factors increase the risk of developing myeloma is not yet known. Furthermore, the majority of myeloma patients have been associated with none of these risk factors indicating that other factors, not yet known, are also involved. MGUS and asymptomatic myeloma Some people go on to develop myeloma after having been diagnosed with a condition called MGUS which stands for Monoclonal Gammopathy of Undetermined Significance. It is generally now accepted that all myeloma patients have had MGUS first, whether it was identified or not. MGUS is a condition which resembles myeloma due to the presence of myeloma cells in the bone marrow and paraprotein in the blood, but at much lower levels than in myeloma. Also, unlike myeloma, MGUS does not cause any symptoms. MGUS patients do not receive treatment but are monitored regularly (at least once a year). For more information see the MGUS Infosheet from Myeloma UK. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 11 11 23/06/2016 11:46:12 MGUS is a non-cancerous precursor to myeloma; although not all MGUS patients go on to develop myeloma in their lifetime. There is a 1% chance each year that MGUS develops into myeloma. The cause of the progression from MGUS to myeloma is not yet known but probably involves changes at the genetic level. Smouldering myeloma, also called asymptomatic myeloma or indolent myeloma, is an early form of myeloma which usually progresses at a slow rate. Smouldering myeloma patients have myeloma cells in the bone marrow and paraprotein in the blood (at a higher level than in MGUS) but as the name suggests, they do not have any of the typical symptoms of myeloma. 12 Smouldering myeloma will at some point progress to active myeloma but it is not possible to predict when this will happen in each individual. Statistically, approximately 10% of smouldering myeloma patients progress to active myeloma every year in the first five years, 3% per year in the next five years and 1% per year thereafter. Smouldering myeloma patients are monitored closely (every 3 - 6 months) but do not usually receive treatment for the myeloma, although bisphosphonate treatment may be given to help protect and strengthen their bones. Currently, the majority of smouldering myeloma patients are not treated until active myeloma develops because the benefits of treatment can be outweighed by the risk of side-effects. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 12 23/06/2016 11:46:12 Furthermore, evidence from clinical trials have demonstrated that early treatment does not provide a significant benefit to the majority of patients in terms of delaying progression to active myeloma. For more information see the Smouldering Myeloma Infosheet from Myeloma UK. There is, however, a growing body of evidence to suggest that early treatment of a subgroup of ‘high-risk’ smouldering myeloma patients can potentially delay progression to active myeloma and extend patients’ lives. ‘High-risk’ patients are those for whom the probability of progression to active myeloma in the first two years after diagnosis exceeds 80%, which is based on a number of factors. However, this is still an area of research and warrants further investigation. For the majority of smouldering myeloma patients, therefore, monitoring remains the standard of care. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 13 13 23/06/2016 11:46:12 Types of myeloma Myeloma is often described as being a very individual cancer, both in terms of the way patients experience complications and in the way they respond to treatment, which can vary greatly. Some of this variation is due to the different types and subtypes of myeloma. The most common way myeloma can be classified is according to the type of defective immunoglobulin (called paraprotein) produced by the myeloma cell. However, potentially the most useful way of classifying myeloma is by genetic subtype. This section describes these classification types in more detail. Type of immunoglobulin In a healthy immune system, there are several different types of immunoglobulin (commonly 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 2). Light chain Light chain Heavy chain Heavy chain Figure 2. Immunoglobulin structure 14 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 14 23/06/2016 11:46:12 There are five possible types of heavy chain referred to by the letters G, A, D, E and M and there are two possible types of light chain referred to by the Greek letters, kappa () and lambda (). Each immunoglobulin (Ig for short), can have only one of the five possible heavy chain types. Therefore immunoglobulins can be IgG, IgA, IgD, IgE or IgM. Each Ig can then be further sub-classed depending on the type of light chain it has. A healthy individual 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, a large amount of a single type of abnormal immunoglobulin called paraprotein is produced. Paraprotein plays no useful role in the body. IgG type myeloma Approximately 65% of myeloma patients have what is called IgG type myeloma, with either a kappa or lambda light chain component. IgG kappa type is the most common type of myeloma. IgG type myeloma has all the usual features of myeloma. Other Ig type myeloma The next most common type is IgA myeloma. IgM, IgD and IgE type myeloma are all extremely rare. IgA type myeloma can sometimes be associated with myeloma deposits outside of the bone (called extramedullary plasmacytoma), and IgD myeloma can be accompanied by plasma cell leukaemia and is more likely to cause kidney damage. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 15 15 23/06/2016 11:46:12 Light chain myeloma In about 20% of patients, the myeloma cells only produce light chains (sometimes called Bence Jones proteins) and no whole immunoglobulins at all. This is called ‘light chain’ or ‘Bence Jones’ myeloma. The light chains produced by the myeloma cells are exclusively kappa light chains or lambda light chains. An increase in either kappa or lambda light chain levels in the blood can indicate active myeloma. The kappa/lambda ratio is also calculated and is considered to be as important as the kappa and lambda levels for diagnosing and monitoring light chain myeloma. Of all the different types of myeloma, light chain myeloma is most likely to cause kidney damage. This is because the excessive amount of light chains circulating in the bloodstream of patients with light chain myeloma can both block the tubules within the kidney, and cause inflammation to the kidney tissue. Light chains are also elevated and measurable in the vast majority of patients that produce whole immunoglobulins (paraprotein). 16 This means that light chain measurement can be of use not just in patients with light chain myeloma but in all myeloma patients. Oligosecretory and non-secretory myeloma Extremely rarely, in less than 1% of patients, the myeloma cells produce very little or no abnormal immunoglobulin chains of any type. Oligosecretory myeloma patients have very low measureable levels of abnormal protein (either paraprotein or light chains) in their blood or urine. ‘Nonsecretory’ myeloma patients have no detectable levels of abnormal protein in their blood or urine. Oligosecretory or non-secretory myeloma is no different to the other types of myeloma in terms of treatment approach. However, the low or immeasurable levels of abnormal protein make it challenging for these types of myeloma to be diagnosed and monitored using traditional blood and urine tests. A relatively new test called the Freelite™ test has been able www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 16 23/06/2016 11:46:12 to detect minute amounts of light chains in the blood of oligosecretory patients, therefore making diagnosis and monitoring easier. Patients with nonsecretory myeloma are generally monitored using other tests such as bone marrow biopsies. Genetic subtypes of myeloma It is now known that myeloma is associated with multiple genetic abnormalities or errors. Many of the errors in myeloma appear to be alterations or errors in structures known as chromosomes in which our genes are packaged. It is possible to use these chromosomal abnormalities to further classify myeloma on the basis of genetic subtype. The more common genetic subtypes of myeloma include*: ■ t(4;14) Each genetic subtype has its own distinctive features which may influence not only the onset and speed of progression of the myeloma, but also how well a patient responds to treatment. As such, genetic abnormalities have the potential to be powerful prognostic markers in myeloma. Currently, genetic subtypes can only be detected in a specialised laboratory and this test is not yet routinely performed (it may more regularly be carried out in certain clinical trials). Simpler tests are being developed to enable patients to be genetically subtyped routinely in the future. It is hoped that this will enable a patient’s response to different treatments to be more accurately predicted, which will in turn lead to the development of treatments that are tailored to each genetic subtype of myeloma. ■ del(13q) ■ del(17p) ■ 1q21gain ■ t(11;14) ■ Hyperdiploidy * the letters and numbers refer to chromosomal alterations or errors Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 17 17 23/06/2016 11:46:12 Diagnostic tests and investigations Anyone suspected of having myeloma should be referred to a haematologist for further tests and investigations. Myeloma is a complex cancer and therefore its diagnosis can involve a number of different tests. It is also a very individual cancer and therefore results from diagnostic tests may vary from patient to patient. The aims of the tests and investigations are to: ■ Establish a diagnosis ■ Gain an in-depth picture of the specific characteristics of the myeloma ■ Detect any complications so that they can be effectively managed ■ Help determine a treatment plan Bone marrow tests Bone marrow tests are important to determine both the presence and amount of myeloma cells in your bone marrow in proportion to the other blood cells. 18 There are two types of bone marrow tests that may be carried out. These involve the removal of some liquid bone marrow (a bone marrow aspirate) and/or the removal of a 1 – 2 cm core of bone marrow tissue in one piece (a 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, although not in every patient. For example, it can be quite difficult to carry out a biopsy in some patients and the doctor www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 18 23/06/2016 11:46:12 may make the decision to make the diagnosis with an aspirate sample alone. Both bone marrow tests are fairly invasive procedures and must be carried out by a skilled specialist. Following diagnosis, most patients will rarely have another set of bone marrow tests. Nonsecretory patients may have them more regularly due to the difficulties in monitoring this type of myeloma. Patients on certain clinical trials may also have them more regularly as a means of monitoring the activity of the myeloma. Bone marrow samples are usually taken from the pelvic bone (Figure 3). A needle is inserted through the skin and into the bone and a sample is drawn up by suction through a syringe. The procedures are carried out under local anaesthetic with or without sedation and last only a few minutes. Iliac crest Bone marrow Figure 3. Bone marrow sample being taken from the pelvic bone Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 19 19 23/06/2016 11:46:13 Occasionally, the bone marrow sample may be used for genetic analysis to determine the genetic subtype (see page 17), although this is not routinely available yet. highly sensitive Freelite™ test potentially has the ability to detect changes in the activity of the myeloma sooner than conventional blood tests. Other blood tests may include: Blood tests There are a variety of blood tests that help to diagnose and monitor myeloma. Regular blood tests are performed to measure your paraprotein level. As well as being important in diagnosing myeloma, changes in the paraprotein level can be a good indicator of changes in the activity of the myeloma. If no paraprotein is detected but myeloma is still suspected, a Freelite™ test may be performed to measure the amount of free light chains in your blood. This test is particularly important in diagnosing and monitoring light chain myeloma or oligosecretory myeloma although, increasingly, it is also being used in all patients alongside more conventional blood tests. This is because light chains are elevated and measurable in the vast majority of myeloma patients, and the 20 Full blood count A full blood count measures the levels of the different cells in your blood. The most important are: ■ Red blood cell count – a low count shows that you are anaemic ■ White blood cell counts – low counts of some or all of the different white blood cells indicate that you are at greater risk of infection ■ Platelet count – a low count shows that you are at an increased risk of bleeding or bruising more easily than normal www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 20 23/06/2016 11:46:13 Blood chemistry ■ Calcium – a mineral which is A full blood chemistry test provides an overview of the levels of various substances in your blood that can indicate the severity of the myeloma and myeloma-related complications. They include: normally found in bone. In patients with active myeloma bone disease, calcium is released from the bone into the blood leading to higher than normal levels (hypercalcaemia) ■ Beta 2 microglobulin (ß2M) – To find out the normal ranges of the tests, see appendix 1 on page 72. a protein that is found on the surface of almost all cells in the body. It is present in most body fluids but is increased in myeloma. ß2M is one of the most important indicators of both the amount and activity of myeloma ■ Creatinine and urea – both are waste products that are normally filtered out by the kidney and passed into the urine. High blood levels of creatinine and urea indicate poor kidney function ■ Albumin – a type of protein that normally makes up most of the protein found in the blood. In myeloma, chemical messengers (cytokines) produced by the myeloma cells suppress albumin production in the liver Skeletal survey A skeletal survey is a series of X-rays of the long bones, spine and the skull, to detect the presence of and extent of any myeloma bone disease. Areas of bone damage that show up on an X-ray are known as lytic lesions. Skeletal surveys are the standard of care for detecting myeloma bone disease and are one of the first tests to be carried out in the diagnosis of myeloma. The X-rays can also identify any areas of bone damage which have caused the bone to fracture or collapse and which require immediate repair. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 21 21 23/06/2016 11:46:13 If, however, there is any doubt about the results of the X-rays, you may be asked to undergo more sophisticated imaging scans such as a magnetic resonance imaging (MRI) or a computerised tomography (CT) scan of an area causing concern. These scans can provide more detail and identify areas of bone damage that are not so easily detected by X-ray. in-depth picture of the specific characteristics of your myeloma. The presence of complications, caused by the myeloma damaging specific organs and tissues of the body, can also help to determine the characteristics of your myeloma. These are commonly referred to by the acronym ‘CRAB’ which describes the four major complications that are generally observed in myeloma: Repeat tests C-calcium elevation R-renal (kidney) impairment A-anaemia B-bone damage (lytic lesions) The tests described above are used not only to diagnose myeloma but also to measure response to treatment and to monitor myeloma activity over time. Many of these tests are repeated regularly throughout all stages of your treatment and care. Tracking the levels of normal and abnormal proteins in the blood is particularly useful and is likely to be the most frequent test you will have. Indications for starting treatment Results from the tests and investigations listed above, together with CRAB, will help determine when treatment should begin, what that treatment should be, and provide a baseline against which response to treatment and disease progression can be measured (information on the treatment of myeloma begins on page 30). On completion of some or all of the tests described above, your doctor should have a clear and 22 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 22 23/06/2016 11:46:13 The symptoms and complications of myeloma Unlike many other cancers, myeloma can affect the body in several ways causing a number of symptoms and complications. This is due to the myeloma cells acting directly on the tissues of the body and releasing a variety of proteins and other chemicals into the bone marrow and bloodstream. Be honest with your doctor and nurse about any problems you are having. Describing them as accurately and as early on as possible can reduce the number and severity of the complications associated with myeloma and will help you get the right treatment, early on. Keep a Patient Diary from diagnosis onwards so that you can refer to it when describing your symptoms and patterns of symptoms to your doctor or nurse. The most common symptoms and complications of myeloma, how they may affect you, and how they are managed are described on pages 24 – 29. It is important to remember that not everyone will experience all of these and that effective supportive treatments and strategies to prevent or control them are available. To order your free Patient Diary from Myeloma UK, contact the Myeloma Infoline Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 23 23 23/06/2016 11:46:13 Myeloma bone disease Bone disease is one of the most common complications of myeloma and is the most common cause of pain. Myeloma cells produce signals and substances known as cytokines and growth factors which activate bone breakdown but inhibit new bone formation. When this happens, bone is broken down faster than it can be repaired, leading to bone pain, bone lesions or even fractures. The middle or lower back, the rib cage and the hips are the most frequently affected areas. Fractures occur most often in the spine (vertebrae) or ribs. Fractures can sometimes occur with only minor pressure or injury. Fractures of the vertebrae can lead to their collapse, causing pain, loss of height and curvature of the spine. Myeloma bone disease is treated by a group of drugs called bisphosphonates. They work by interrupting the process of increased bone breakdown. Figure 4. Lytic lesions show up as dark shadows on an X-ray (left). A fracture is visible in the X-ray of a patient’s arm (right) 24 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 24 23/06/2016 11:46:13 Bisphosphonates: ■ Prevent and slow down further bone breakdown ■ Prevent and correct hypercalcaemia ■ Reduce bone pain and the need for pain-killers Three bisphosphonates are currently licensed for the treatment of myeloma bone disease: Zoledronic acid is the recommended bisphosphonate of choice in light of a large-scale clinical trial which showed it was better than Bonefos in treating myeloma bone disease, but also had anti-myeloma effects and survival benefits in newly diagnosed myeloma patients. For more information see the Myeloma Bone Disease and Bisphosphonates Infoguide from Myeloma UK. ■ Bonefos® (sodium clodronate), which is taken orally in tablet form ■ Aredia® (pamidronate), which is given as a monthly intravenous infusion ■ Zoledronic acid (formerly known as Zometa®), which is given as a monthly intravenous infusion Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 25 25 23/06/2016 11:46:13 Pain Pain is the most common symptom of myeloma affecting up to 80% of patients at some point. Living with pain can have a huge impact on all areas of a patient’s life, especially if it is untreated or poorly managed. The effective control and management of pain is therefore a very important element of the supportive treatment for myeloma. As with myeloma, pain is very specific to the individual. There are a number of different ways to treat pain. If you are responding to anti-myeloma treatment you may find that your pain starts to ease since the underlying cause of the pain is being treated. You may also be prescribed pain-killers to try to control your pain. There are several different types depending on the level of pain you have and can be taken in a number of different ways including by mouth, as an injection, as a patch or as a 26 nasal spray. Treatment should aim to provide continuous pain relief whenever possible with a minimum of side-effects. Some myeloma patients find that complementary therapies such as relaxation techniques, aromatherapy and massage can help alleviate some symptoms such as pain. Where pain is more severe, pain-killers and/or complementary therapies may be supplemented by other types of treatment such as: ■ Localised radiotherapy – this has been shown to help control ‘hot spots’ of active myeloma bone disease and pain ■ Percutaneous Vertebroplasty – vertebral collapse in the spine can occur in myeloma. Percutaneous Vertebroplasty is a procedure which involves the injection of cement into the vertebral body; it has been shown to have the potential to reduce pain significantly www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 26 23/06/2016 11:46:13 ■ Balloon Kyphoplasty – similar to Percutaneous Vertebroplasty but involves the insertion of a small inflatable balloon into the vertebral body before injecting the cement. This procedure has also been shown to provide significant pain relief and in some cases is able to correct curvature of the spine and restore height For more information see the Pain and myeloma Infoguide from Myeloma UK. For more information see the Radiotherapy and Percutaneous Vertebroplasty Infosheets and the Balloon Kyphoplasty Infoguide from Myeloma UK. Fatigue Fatigue is a condition that affects most, if not all, myeloma patients at some point and is a symptom that patients can find the most challenging. Fatigue is a feeling of extreme tiredness, lethargy or exhaustion, felt all or most of the time, which is not relieved by sleep or rest. In order to best manage fatigue, it must first be recognised and acknowledged. It is important that you tell your doctor how you feel because there are several things they can do to help treat some of the causes of fatigue. There are things you can do to help yourself or be helped by those caring for you: planning activities to avoid overtiring yourself is something that you and your carers can do together; eating a healthy, balanced diet; taking regular light exercise; and ensuring that you get enough sleep can all play a part in reducing the impact fatigue has on your life. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 27 27 23/06/2016 11:46:13 Fatigue caused by anaemia can also be treated with blood transfusions and also with a drug called erythropoietin (EPO). For more information see the Fatigue Infoguide and the Erythropoietin Infosheet from Myeloma UK. Kidney damage Regular blood tests to measure levels of creatinine and urea are used to monitor your kidney function. Kidney problems can occur in myeloma for a variety of reasons. The abnormal protein produced by myeloma cells can block and damage the kidneys; this is particularly common with light chain myeloma. Other complications of myeloma, such as dehydration and hypercalcaemia, as well as some of the drugs used in the treatment of myeloma, can also cause or contribute to kidney damage. The most important thing you can do to reduce the risk of kidney damage is to drink plenty of fluid. You should try to drink between two and three litres 28 (three to five pints) of fluid per day. Most liquids count, so drink as many glasses of water, sparkling water, juice or squash, decaffeinated tea or milk as you can. Caffeinated tea, coffee and alcohol can be included, but in moderation. Also, avoid using certain drugs called non-steroidal antiinflammatory drugs such as aspirin or ibuprofen (Nurofen®), which are commonly used as pain-killers. These drugs can contribute to kidney problems. There are different ways to treat kidney damage in myeloma, depending on the cause. In many cases, the kidney damage is temporary and your kidneys can recover. In a small proportion of patients, the kidney problems become permanent, so they require a regular treatment called dialysis. This is a way of filtering the blood using a dialysis machine in the same way that kidneys would do if they were healthy. For more information see the Myeloma and the kidney Infoguide from Myeloma UK. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 28 23/06/2016 11:46:13 Anaemia and infection Myeloma cells affect the production of all types of blood cells. Complications of reduced blood cells include: ■ Too few red blood cells results in a low haemoglobin level, causing anaemia, which can lead to tiredness, weakness and breathlessness ■ Low levels of white blood cells can make you more likely to get infections urine) and tell your doctor or nurse about them straightaway. If your white cell count falls very low, your doctor may give you a course of antibiotics to try to prevent infections before they take hold. There are also drugs (called growth factors) that can stimulate the body to produce more white blood cells. If your platelet count falls to very low levels, it can be boosted by a transfusion of platelets. ■ Low levels of platelets may mean that you bruise or bleed more easily Anaemia does not always need treatment because bone marrow is often able to recover, especially if treatment is bringing the myeloma under control. If anaemia needs treatment, a blood transfusion can help. There is also a drug called erythropoietin (or EPO) which can stimulate the body to produce more red blood cells. Low white cell counts may not always need to be treated, but you should be alert to symptoms of infection (such as temperature, fever, cough, pain in passing Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 29 29 23/06/2016 11:46:13 Treatment of myeloma – an overview Treatments for myeloma can be very effective at controlling the disease, reducing symptoms, improving quality of life and prolonging life. This is reflected in recent data from the Office for National Statistics which show that survival rates in myeloma are increasing at one of the fastest paces among all cancer types in the UK. However, unfortunately, treatment for myeloma is currently not curative. That said, it is now generally accepted that myeloma has the potential to become a chronic cancer in certain subgroups of patients. Types of treatment In general, the treatment and management of myeloma can be thought of in three categories. These are: 1. Anti-myeloma treatments – to control the myeloma itself. Treatment for myeloma is usually most effective when two or more 30 drugs with different but complementary mechanisms of action are given in combination. There are a number of different anti-myeloma treatments available, which are used at different stages of myeloma and in a number of different combinations. These include: ■ Chemotherapy ■ Steroids ■ High-dose therapy and stem cell transplantation ■ Thalidomide ■ Velcade® (bortezomib) ■ Revlimid® (lenalidomide) www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 30 23/06/2016 11:46:13 There are also various novel or experimental treatments in different stages of development that are being investigated for use in the clinic in the future. It may be possible to access these new drugs as part of a clinical trial (see page 54 for more information). 2. Supportive care treatments – to control and alleviate symptoms and complications caused by myeloma. These include: ■ Bisphosphonates ■ Erythropoietin ■ Antibiotics ■ Radiotherapy ■ Balloon Kyphoplasty ■ Percutaneous Vertebroplasty ■ Pain relief 3. Active monitoring – regular testing but no anti-myeloma treatment. You only need treatment for your myeloma when it is active and causing problems. Making treatment decisions Choosing treatment for myeloma is not a simple decision as no single treatment combination has been identified as being the best. In addition to this, myeloma is a very individual cancer and each patient will respond differently to different treatments. You may prefer just to follow the advice of your doctor or to take a more active role in the decisionmaking process. Your doctor should be able to adapt his or her approach accordingly to suit you. There is some overlap between these two categories, since any treatment that controls your myeloma will have the added benefit of reducing any symptoms and complications. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 31 31 23/06/2016 11:46:13 Generally, the best treatment combination for you will take account of: ■ Your general health, including any other medical conditions you have ■ Your age ■ Your personal circumstances and lifestyle, and your priorities and preferences ■ The characteristics of your myeloma and the extent to which it is causing complications ■ Any previous treatments you have had ■ Evidence-based national guidelines and what is licensed and approved for use on the NHS ■ Whether or not you are taking part in a clinical trial ■ In the near future, the genetic subtype of your myeloma To help you understand more about your myeloma and the treatment options available, try to collect as much information as you feel you need. Information is available from doctors, nurses, other patients, the internet and 32 Myeloma UK. Listing the pros and cons of each option is a good way to help you decide what the best treatment is for you. Talking things over with your family, friends or another patient can help to clarify your thoughts. What if I want to try alternative therapies? Some patients do not want to have any type of standard conventional medical treatment and prefer to try an alternative approach, using special diets and/or alternative remedies instead of the conventional medical treatments. Conventional treatments have been successfully tested in clinical trials and doctors have a clear understanding of how they work. It is important to appreciate that almost no alternative approaches have been studied in the same way and there is currently no evidence that they work in treating myeloma. If you choose to use alternative ways of trying to control your myeloma, it is essential to discuss this with your doctor as there are www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 32 23/06/2016 11:46:14 potential risks involved and you may choose to try conventional treatment at a later date. Alternative approaches to treatment should not be confused with complementary therapies. Complementary therapies are used alongside, and complementary to, conventional treatment. Complementary therapies include relaxation and meditation, massage, reflexology and aromatherapy. Before starting any complementary therapy it is important to discuss it with your doctor. What if I don’t want any treatment at all? Some people feel that they do not want to have any treatment for their myeloma. The decision not to have treatment is a very personal one and you should talk this through with your doctor. If you choose not to have treatment for your myeloma there are many supportive measures available to help alleviate its symptoms. specialist, who will be able to provide expertise in symptom control and supportive care. Who is involved in my treatment and care? Your treatment and care will be discussed by a multidisciplinary team (often referred to as ‘MDT’ for short). This is a group of health and social care professionals who work together to look after cancer patients, to ensure that the right professionals can contribute to your health and wellbeing. A myeloma MDT will usually consist of a number of core members with specialist training and expertise in myeloma and related specialities, such as kidney (renal), pain control or orthopaedic (bone) specialists. Other professionals might attend on occasion, such as social workers, physiotherapists and dieticians. Whether or not you choose to have treatment, it may be helpful to be seen by a palliative care Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 33 33 23/06/2016 11:46:14 Your relationship with your healthcare team Your relationship with your medical team will involve trust and collaboration. You should feel comfortable asking questions and discussing treatment options with them. Learning more about myeloma and the different treatments that are available will help you to communicate more easily with your medical team and help you to make informed decisions about your care. Sometimes medical professionals forget that most patients do not understand medical jargon. If you do not understand something, don’t be afraid to say so and ask for information to be given in everyday language (layman’s terms). Doctors and nurses would rather explain something twice than have you go home confused and worried. Many people find it helpful to receive written information they can take away and read at home. Remember that there are likely to be uncertainties, and that your doctor might not be able to answer specific questions about your future. For example, 34 you might want to know how successful your treatment is going to be before you decide to have it. Whilst your doctor will probably be able to give you average figures learned from research, they will not be able to tell you exactly how you are going to respond to the treatment. Getting more than one opinion Given the individual nature of myeloma, choosing the right treatment can be as challenging for doctors as it is for patients. You may feel that you want more than one opinion to be sure that the proposed treatment plan is appropriate for your situation and that all other options have been considered. Sometimes people have difficulty in communicating with their doctor and want the chance to talk to another doctor. In this circumstance, you might ask to see a different doctor in the same hospital or to have another opinion at another hospital. Doctors are normally happy to arrange another opinion and you should not feel that asking www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 34 23/06/2016 11:46:14 for one will offend them. You may, however, find it easier to approach your GP about this. You may also decide to seek another opinion privately. Your notes will be passed on to the second doctor before your visit so they are familiar with your particular situation. The following sections describe the various treatments that are available for myeloma and some of the circumstances under which particular treatments are used. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 35 35 23/06/2016 11:46:14 Initial treatment Once the decision has been reached that you require treatment to control your myeloma, you will begin discussions about what type of initial treatment is best for you. Initial treatment for myeloma can be broadly categorised into two groups: tolerated, often with fewer sideeffects and are still very effective at treating myeloma. 1. Less intensive treatment for older and/or less fit patients using standard or lower doses of specific treatments Your doctor will explain to you which group you fit into, based on a number of factors, including your age and general ‘fitness’ i.e. your previous medical history and level of myeloma-related symptoms and complications. 2. More intensive treatment for younger and/or fitter people using higher doses of specific treatments followed by stem cell transplantation The following sections will discuss the treatment options for patients in each group. The reason behind this categorisation is that the more intensive treatment brings with it the risk of increased side-effects and complications, which could be particularly problematic for older and/or less fit patients. The treatments used in the older/less fit patient group are more easily 36 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 36 23/06/2016 11:46:15 Less intensive initial treatment At present there are a number of treatment combinations that may be used as initial treatment for myeloma in older and/or less fit patients. These include CTDa, MPT and VMP (see Table 1 for further explanation). Combination Chemotherapy Steroid Other CTDa* Cyclophosphamide Dexamethasone Thalidomide MPT Melphalan Prednisolone Thalidomide VMP Melphalan Prednisolone Velcade Table 1 – Different initial treatment combinations** for older and/or less fit myeloma patients * ‘a’ = attenuated, which means lower doses of some if not all of the drugs in the combination ** This is not an exhaustive list. You may, for example, be put on a treatment combination not included in this table if taking part in a clinical trial Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 37 37 23/06/2016 11:46:15 Chemotherapy (e.g. cyclophosphamide, melphalan) Steroids (e.g. dexamethasone and prednisolone) The type of chemotherapy prescribed for myeloma patients depends on the individual and what is most suitable for them and their myeloma at any particular point in time. The most commonly used chemotherapy drugs for myeloma are cyclophosphamide and melphalan. Steroids are drugs which mimic certain hormones in the body that help to regulate and control the way the body develops and functions. There are many different types of steroids. Those used in the treatment of myeloma are known as glucocorticoids. These steroids can suppress inflammation and the immune response. Chemotherapy drugs work by damaging the DNA of myeloma cells. This stops them from growing and causes them to die. Chemotherapy drugs attack all rapidly multiplying cells in the body. This includes the myeloma cells, but also may affect other rapidly multiplying cells such as normal developing blood cells in the bone marrow, hair follicles and the lining of the mouth and the stomach. It is for this reason that chemotherapy drugs can cause side-effects. Cyclophosphamide and melphalan, when given in the combinations outlined above, are usually given orally (by mouth in tablet form). 38 While not everything is known about how steroids work, it is recognised that they are effective in killing myeloma cells. It has also been found that, when steroids are used with chemotherapy, the result is a greater response to treatment than when chemotherapy is used alone. Steroids are usually given in tablet form, or more rarely intravenously (into a vein). Tablets should be taken with food or milk to help protect the lining of the stomach from irritation. It is also recommended that steroids are taken in the morning to prevent sleep disturbance. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 38 23/06/2016 11:46:15 Thalidomide Thalidomide is classified as an immunomodulatory drug (IMiD) and is thought to work in a number of ways, including by stimulating the immune system to attack and destroy myeloma cells. Thalidomide is given as a tablet, usually in the evening. The proteasome has an important role to play in all cells, especially myeloma cells. It works by breaking down the many different proteins that control the cell’s lifecycle. Velcade blocks proteasome function which results in a build-up of proteins. This causes myeloma cells to die, while leaving normal cells less affected. Velcade Velcade received its licence for use in relapsed myeloma in 2004. Since then, however, it has gained an additional license for use in newly diagnosed patients – both as a less intensive initial treatment option in patients and as an induction treatment prior to high-dose therapy and stem cell transplantation (see page 42 for more details). For more information see the CTD, MPT and Velcade Infoguides from Myeloma UK. Velcade is the first in a class of anti-cancer drugs called proteasome inhibitors. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 39 39 23/06/2016 11:46:15 How long will my treatment last? What side-effects could I have? The total length of a course of an initial treatment combination often depends on which one you are taking and how you respond to it, but is unlikely to last less than three months or longer than eight months. A course of treatment is given in cycles e.g. treatment over a few days or weeks, followed by a rest period without treatment before the next dose is given. This is to give the healthy cells time to recover between treatments. The drugs used to treat myeloma can be quite toxic since, as well as killing the myeloma cells, they can also harm healthy cells. This can cause significant side-effects. Each drug has its own sideeffects and even the same kind of drug produces different reactions in different people. If you have specific questions about how long your treatment course will last, your doctor is the best person to answer them. Unfortunately, different treatment combinations do not always work for everyone. Your doctor will monitor your progress carefully and, if you do not respond to one particular combination, it will be stopped and other options/ combinations will be explored. 40 Most side-effects are only short term, can be managed with supportive treatments, and go away once the treatment has stopped. The length of time it takes for side-effects to resolve after stopping treatment varies from person to person. Common side-effects of: Chemotherapy – may include nausea, vomiting, diarrhoea, infections, sore mouth and hair loss. Some chemotherapy drugs can also cause infertility. If this is a consideration for you, you should talk to your doctor. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 40 23/06/2016 11:46:15 Steroids – may include stomach pain, increased blood sugar, increased risk of infection, increased appetite, mood changes and muscle weakness. Thalidomide – may include drowsiness, constipation, damage to the nerves in the hands and feet resulting in tingling, numbness, increased sensitivity and pain (called peripheral neuropathy), increased risk of blood clots, skin rash or itchiness. Velcade – may include peripheral neuropathy, reduction in white blood cells, nausea, vomiting, diarrhoea, skin rash or itchiness and fatigue. You should be given patient information leaflets for all of the drugs you are taking, explaining all potential side-effects of each particular drug. If you are not, ask your doctor or nurse for them. If you are affected by any side-effects that you think may be due to your treatment, tell your doctor or nurse straight away. They will be able to suggest ways of reducing or relieving the symptoms of your side-effects, perhaps by changing or reducing the dose or by prescribing supportive drugs. For more information see the Constipation, Fatigue, Peripheral Neuropathy and Steroids Infosheets from Myeloma UK. For more information about coping with side-effects see the Living with myeloma Essential Guide from Myeloma UK. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 41 41 23/06/2016 11:46:15 Intensive initial treatment For younger and/or fitter patients, initial chemotherapybased treatment will almost always be followed by much more intensive treatment known as high-dose therapy and stem cell transplantation. High-dose therapy and stem cell transplantation is an intensive treatment which is associated with potentially greater sideeffects and complications than standard or lower dose chemotherapy. It is therefore only offered to myeloma patients who are by and large fit and healthy, and generally up to the age of 65 – 70. What is high-dose therapy and stem cell transplantation and why is it used? Despite its effectiveness, a major drawback of chemotherapy is the inability to give high doses safely. This is because high doses of chemotherapy not only kill the myeloma cells but also the blood-forming stem cells in the bone marrow. This results 42 in blood cell production being severely affected, with blood counts falling to dangerously low levels causing potentially lifethreatening problems. High-dose therapy and stem cell transplantation provides a solution to this drawback. It involves giving high doses of chemotherapy to kill the myeloma cells, and then giving back stem cells previously collected from the patient. This effectively ‘rescues’ the patient’s bone marrow, allowing blood cell production to continue. This type of stem cell transplantation is known as an autologous stem cell transplant. Very rarely, a patient may receive stem cells from a donor. This is known as an allogeneic stem cell transplant. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 42 23/06/2016 11:46:15 High-dose therapy and stem cell transplantation is a standard treatment for myeloma for younger and/or fitter patients. The aim is to improve the response to initial treatment and to prolong the period of plateau or remission. What happens during the stem cell transplant procedure? 5. Autologous stem cell transplant 1. Induction treatment 4. High-dose melphalan 2. Stem cell mobilisation 3. Stem cell collection Figure 5 – Steps involved in high-dose therapy and autologous stem cell transplantation Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 43 43 23/06/2016 11:46:15 Step 1 – Induction treatment Before having high-dose therapy and stem cell transplantation you will be given an initial treatment combination, known as induction treatment. Standard practice in most parts of the UK is to use cyclophosphamide, thalidomide and dexamethasone (CTD) as induction treatment, although this may change as a result of clinical trial data. For example, one of the aims of the large-scale clinical trial Myeloma XI is to determine whether a Revlimidcontaining induction treatment combination is more effective than a thalidomide-containing one. The number of cycles you have will depend on how your myeloma responds, but in general will last between four to six months. If your myeloma does not respond well to your induction treatment, your doctor may not recommend carrying on with the procedure. Instead, you will be offered a different treatment approach. 44 Steps 2 and 3 – Stem cell mobilisation and collection You will be given treatment to stimulate stem cells to multiply and travel from the bone marrow into the blood stream, so that enough stem cells can be collected for the transplant. Stem cells are collected from your blood prior to receiving high-dose therapy by a process called apheresis. This involves passing your blood through a machine, which separates and collects the stem cells and returns the remainder of the blood back to your body. When enough stem cells have been collected they are frozen and stored until they are needed for the transplant. The minimum number of stem cells needed for a successful transplant is two million per kilogram of body weight. However, it is almost always the aim to collect enough for two transplants (both as a contingency and to store for a potential second transplant in the future). www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 44 23/06/2016 11:46:15 Steps 4 and 5 – High-dose therapy and the transplant You will receive the high-dose therapy with the chemotherapy drug melphalan as an inpatient. Within a day or so after receiving the high-dose therapy, your stem cells will be given back to you intravenously, in a similar way to a blood transfusion. Receiving your own stem cells back is called an autologous transplant, while receiving stem cells from a donor is called an allogeneic transplant. and be kept in protective isolation in hospital to help you avoid infection. Blood and platelet transfusions may be required until the bone marrow recovers and antibiotics may be given to prevent infection. The high-dose therapy and stem cell transplantation process can be quite debilitating and after the procedure, a period of several weeks of slow convalescence at home is often needed. Advantages/disadvantages Step 6 – Recovery Once the stem cells are back in the bloodstream, they travel back to the bone marrow, where they settle and develop into new blood cells. This vital process is called engraftment and takes about two weeks. Most patients stay in hospital until their blood counts return to a safe level. This usually means spending up to two to three weeks as an inpatient. During this time you may feel quite unwell The main advantage of highdose therapy and stem cell transplantation is the possibility of achieving an excellent response and long remission. Disadvantages include more toxicity than standard dose chemotherapy and the reality that relapses still occur. For more information see the High-Dose Therapy and Autologous Stem Cell Transplantation Infoguide from Myeloma UK. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 45 45 23/06/2016 11:46:16 Allogeneic transplantation For a very small number of younger patients, an allogeneic transplant may be considered. This is where stem cells from a donor with a matched tissue type (usually a sibling) are used for the transplant. Allogeneic transplants have important differences compared with autologous stem cell transplants both in the potential benefits and the risks involved. Allogeneic transplants aim to use the immune system of the donor to help fight against the patient’s myeloma. The donated stem cells are transplanted into the patient where they mature into functioning cells of the immune system. These can then potentially attack myeloma cells – this effect is known as ‘graftversus-myeloma’ and is thought to be responsible for the lower rate of relapse that can be seen following an allogeneic transplant compared to an autologous transplant. 46 The main disadvantage of an allogeneic transplant is the risk of graft-versus-host disease (GVHD), which is a potentially life-threatening condition. This is when the donated cells not only attack the myeloma cells but also destroy the patient’s own body tissue. GVHD is a major problem and is one of the reasons why allogeneic transplants have a higher mortality rate than autologous transplants. Another type of allogeneic transplant, known as a miniallogeneic transplant, is sometimes considered. This involves giving a lower dose of chemotherapy than would normally be used which reduces the serious risks associated with the standard allogeneic transplant option. For more information see the Allogeneic stem cell transplantation Infosheet from Myeloma UK. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 46 23/06/2016 11:46:16 How do I know if my treatment is working? The aim of treatment is to control the myeloma and to alleviate any symptoms it may be causing. In order to find out how you are responding to treatment, several tests will be carried out on a regular basis. These tests may vary from patient to patient, but generally include regular blood and/or urine testing and occasional bone marrow tests or X-rays. The signs that treatment is working include: ■ A fall in the paraprotein or light chain level ■ An improvement in your symptoms and/or complications such as bone pain, anaemia and kidney function ■ A reduction in the number of myeloma cells in the bone marrow ■ An improvement in your In general terms, your doctor will measure your response to treatment according to the categories in Table 2. Myeloma can respond very well to treatment and go into remission. This means that there is no sign of active myeloma in your body. Or, the paraprotein or light chain level can be reduced and remain at a stable level following treatment. This is called a plateau or stable disease. It is important to note that the duration of response can be as important as the level of response, so both remission and plateau/stable disease are desirable treatment outcomes. general health and wellbeing Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 47 47 23/06/2016 11:46:16 Table 2 – Measuring the response to treatment Treatment responses Definition Stringent Complete Response No detectable paraprotein, normal free light chain ratio, no myeloma cells in the bone marrow Complete Response (CR) 5% or less plasma cells in bone marrow, no detectable paraprotein Very Good Partial Response (VGPR) 90% or greater reduction in paraprotein Partial Response (PR) 50% or greater reduction in paraprotein Stable Disease (SD) Not meeting criteria for CR, VGPR, PR or progressive disease, but with stable values for at least three months Progressive disease 25% or more increase in paraprotein or the development of new myeloma-related symptoms 48 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 48 23/06/2016 11:46:16 Treatment for relapsed and/or refractory myeloma While there are many effective treatments for myeloma, currently there is no cure. This means that even after successful treatment and periods of plateau or remission your myeloma will return. This is called a relapse. If your myeloma does not respond, or quite quickly stops responding, to treatment this is referred to as refractory myeloma. Myeloma treatments work in many different ways, so if you have not responded well to one type of treatment, this does not necessarily mean that you won’t respond well to a different type of treatment. Being told your myeloma has stopped responding to treatment, or has relapsed, can be a very disappointing or distressing time for patients and their families. Talking things over with your doctor, family or another patient can help. Myeloma UK may also be a good source of support and information at this time. How will I know I have relapsed? The regular tests you will have (described earlier on pages 18 - 22) will usually provide a good indication of the activity of your myeloma. For example, if your paraprotein level rises over the course of three subsequent blood tests, this may be an indication that your myeloma is relapsing. You may also experience an increase in the symptoms and complications related to myeloma and an obvious deterioration in your general health e.g. increasing pain due to myeloma bone disease, or decreasing energy levels due to anaemia. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 49 49 23/06/2016 11:46:16 What treatments are available for relapsing myeloma? When your myeloma relapses, you and your doctor will together consider what treatment you should have to regain control of your myeloma. Your doctor may have already discussed potential relapse treatment options with you as part of your regular appointments. In some patients, the previous treatment can be repeated successfully if the initial response was good. More often, other options are considered for relapsing myeloma. These are usually treatment combinations that include a steroid and either Velcade or Revlimid (and sometimes also a chemotherapy drug). Velcade can be given intravenously (into a vein) but is now mostly given subcutaneously (into the skin) by injection once or twice per week. Velcade is usually given with the steroid dexamethasone. A chemotherapy drug, such as cyclophosphamide, melphalan or adriamycin, may also be given as part of the treatment combination. You will normally be given Velcade as an outpatient which means you will have to travel to the hospital regularly for several weeks to have your treatment. For more information see the Velcade Infoguide from Myeloma UK. Velcade At first relapse, myeloma patients are most likely to receive Velcade. Velcade, also known as bortezomib, is classified as a proteasome inhibitor, and works in a different way to chemotherapy. 50 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 50 23/06/2016 11:46:16 Revlimid A second stem cell transplant At second relapse, myeloma patients are most likely to receive Revlimid. Revlimid, also known as lenalidomide, is similar to thalidomide and is classified as an immunomodulatory (IMiD) drug. If you had a good response and period of remission or plateau following your first stem cell transplant, it may be an option for you to have another transplant when you relapse. This option is normally only discussed if you had greater than 18 months remission or plateau from your first stem cell transplant. Revlimid is given in tablet form, usually in combination with the steroid dexamethasone. Sometimes a chemotherapy drug such as cyclophosphamide may also be included. For more information see the Revlimid Infoguide from Myeloma UK. Third and subsequent relapse treatment options There is a promising pipeline of new anti-myeloma drugs being looked at in clinical trials for patients at third and subsequent relapse (and indeed all stages of myeloma). Imnovid® (pomalidomide) and Kyprolis® (carfilzomib) are two examples of drugs proven in trials to be effective in patients at third or subsequent relapse. Before a drug can be widely used, it must first be licensed as a safe and effective treatment. Normally, the licensed drug must then be approved by a UK drug appraisal body before it can be routinely prescribed by NHS doctors. An example of a Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 51 51 23/06/2016 11:46:16 UK drug appraisal body is the National Institute for Health and Care Excellence (NICE). Imnovid received its European licence for myeloma in 2013. It then passed to the UK drug appraisal bodies to be assessed. Imnovid was approved in Scotland in late 2014 for use in myeloma patients with relapsed and refractory myeloma, who have previously received both Velcade and Revlimid. NICE issued negative guidance on Imnovid in early 2015. Eligible myeloma patients in England can currently access Imnovid through the Cancer Drugs Fund. Clinical trials can also offer myeloma patients access to promising new drugs which have not yet been licensed or approved (see page 54). There are always a number of clinical trials ongoing in hospitals across the UK through which new anti-myeloma drugs may be accessed. If you are interested your doctor will be able to discuss suitable trials with you. For more information see the Myeloma Trial Finder and Myeloma Drug Finder on the Myeloma UK website. Kyprolis is currently going through the European licensing process. For more information see the Imnovid and Kyprolis Horizons Infosheets from Myeloma UK. 52 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 52 23/06/2016 11:46:16 Maintenance and consolidation treatment Various drugs are currently being investigated as possible options for maintenance or consolidation treatment in myeloma. Maintenance treatment is given long-term and aims to prolong the period of response to treatment and further decrease any remaining myeloma cells in the body. A low dose of Revlimid, for example, may be given longterm in certain patients following initial treatment. although results have still to be confirmed with respect to extending patients’ lives. Furthermore, not all patients will benefit from maintenance or consolidation treatment and any potential benefits must always be balanced against the potential side-effects that may occur. Consolidation treatment is given over a shorter period with the aim of maximising the response to initial treatment. Despite the potential to improve patient outcomes, further evidence is needed about maintenance/consolidation treatment in terms of what drug is best, the dose and the duration of treatment before it can be incorporated into routine UK clinical practice. At present, the benefits of maintenance or consolidation treatment are still a little unclear – data from several studies show that both can improve response to treatment and the length of remission/plateau, Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 53 53 23/06/2016 11:46:16 Myeloma research, new treatments and clinical trials Over the past few years, new developments in the treatment and management of myeloma have had a significant impact on the way myeloma is treated. Research is continuing to develop new treatments and to use existing treatments in a better, more effective way. The key goals of current myeloma research include: can be banked and used for research purposes. ■ Giving each patient the best Clinical trials are planned research investigations in which patients take part. They are intended to test new drugs or new combinations of current drugs, or to compare different ways of using current drugs. The treatments that are available today are only available because patients took part in clinical trials in the past. treatment for their diseasespecific and individual needs ■ Overcoming resistance to treatment ■ Developing better drugs with fewer side-effects ■ Identifying new targets for treatment ■ Preventing the onset and progression of myeloma ■ Finding a cure Myeloma patients can help research by taking part in clinical trials and donating blood and bone marrow samples so these 54 There is a promising pipeline of new anti-myeloma treatments currently being looked at in clinical trials, including newer versions of IMiDs (e.g. Imnovid) and proteasome inhibitors www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 54 23/06/2016 11:46:16 (e.g. Kyprolis), as well as new types of drugs such as histone deacetylase inhibitors and monoclonal antibodies. As more is discovered about these new treatments, their role alongside existing treatments will become clearer. In time, if they are proved to be more effective and safer, they may replace some of the existing treatments. To keep informed about new treatments in myeloma and those in development, subscribe to our free, quarterly magazine Myeloma Matters by calling 0131 557 3332 or visit www.myeloma.org.uk. Studying the genetic changes that occur in myeloma cells is fundamental to understanding more about how best to treat and manage myeloma. Understanding more about the genetics of myeloma will fuel the development of new, more effective and targeted drugs and diagnostic tests that will underpin a future where treatment can be tailored to different subgroups of patients. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 55 55 23/06/2016 11:46:16 Living well with myeloma Being diagnosed with myeloma affects every patient differently. At first you might be overwhelmed, in shock and feel numb. Information may not sink in at this point but remember, you will have many opportunities to ask questions again. Sometimes you might feel totally in control of your feelings and at other times strong emotions may catch you unawares. You may feel a great deal of fear, anger and frustration. These feelings are common and a natural part of coming to terms with the diagnosis. feel optimistic, there may be other times when you feel overwhelmed. You may have difficulty sleeping, become irritable, or lose interest in the things that you normally enjoy. It is important to recognise these symptoms and to discuss them with your doctor or nurse. Learning more about myeloma, your treatment options and life after a diagnosis of myeloma can help to ease these feelings. Those around you may feel some of the same things you are feeling – they will also need support. Talking together about how you feel can help. You may also experience a sense of relief that you now have an explanation for the symptoms you have been experiencing over recent months. Many patients experience depression or anxiety at some stage in their illness. Although sometimes you may 56 Emotional support Emotional support is important in helping you to live well with myeloma. It is very easy for patients and family members to feel isolated and strong emotions often make it difficult to discuss www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 56 23/06/2016 11:46:16 worries or fears. Talking to someone, such as your specialist nurse, who understands what is happening can ease these feelings of isolation. To talk to a Myeloma Information Specialist about any aspect of myeloma, call the Myeloma Infoline on 0800 980 3332 or 1800 937 773 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. From outside the UK and Ireland, call +44 (0)131 557 9988 (charged at normal rate). Counselling You may find it helpful to talk to a counsellor. Counsellors offer you the chance to explore your feelings and experiences in a supportive, confidential environment. A counsellor does not give you advice but helps you to develop coping strategies and find your own answers to the problems you are facing. Counselling may not always be available in your hospital, but your GP or hospital doctor should be able to refer you to a professionally trained counsellor in your area. Alternatively you can contact the British Association for Counselling and Psychotherapy, for a list of registered counsellors in your area. See the ‘Further information and useful organisations’ section on page 74 for their contact details. Myeloma Support Groups Support Groups provide an informal and comfortable atmosphere in which members can share experiences and information. Some Support Groups are run by patients and family members, others by healthcare workers or professional group facilitators. If there is not a myeloma group that meets near to you, there may be a general cancer/haematology group that meets locally. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 57 57 23/06/2016 11:46:16 For details of Myeloma Support Groups in your area call the Myeloma Infoline on 0800 980 3332 or 1800 937 773 from Ireland. There is also an online Discussion Forum on the Myeloma UK website where you can connect with others affected by myeloma, post messages to the Group, ask questions and help to support each other. To join the Discussion Forum go to www.myeloma.org.uk 58 Patient and Family Myeloma Infodays Myeloma UK holds regular Patient and Family Myeloma Infodays across the UK. These are full day educational meetings specifically for patients and families, where you can learn about the latest in the treatment and management of myeloma from a panel of myeloma experts. Infodays also provide the opportunity to meet others affected by myeloma, to share experiences and gain support. For more information contact Myeloma UK on 0131 557 3332. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 58 23/06/2016 11:46:16 Looking after yourself Diet and nutrition Whilst there are no specific dietary recommendations for myeloma patients, those who eat healthily and follow certain dietary tips can benefit in many ways. Eating a healthy well balanced diet will help: ■ Maximise your body’s healing ability and keep energy levels high ■ Best prepare your body for treatment as well as improve tolerance and response to treatment ■ Manage some side-effects of treatment ■ Improve your quality of life There will be times when you may need to pay greater attention to the foods you eat. For example, you may need to alter your diet if your immune system is compromised and your white cell count is low because you are at increased risk of picking up an infection. If you are immunocompromised, you will be advised to be very careful about food hygiene and also to avoid certain types of food such as shellfish, paté, unpasteurised dairy products and raw or undercooked eggs. Infection Infection is more common in myeloma patients because myeloma and its treatment can reduce your white blood cell count, which affects your ability to fight infection. Don’t shut yourself away from people but do take a common sense approach to minimise the risk of infection whilst maximising the benefits of being close to family and friends. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 59 59 23/06/2016 11:46:16 Exercise Being physically active can improve your physical and emotional ability to carry on with day-to-day life whilst increasing your confidence and enjoyment of social activities. The most important thing for you to think about when planning any sort of exercise is the effect it might have on your bones. For more information see the Living Well with Myeloma – Your Essential Guide from Myeloma UK. 60 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 60 23/06/2016 11:46:17 Questions for your doctor/medical team Diagnosis ■ What tests will I need to have? ■ When will I get the results? ■ Will I need to have treatment? ■ What is the treatment likely to be? ■ Are my bones affected? ■ Are my kidneys affected? ■ Who will be my main point of contact at the hospital from now on? ■ How successful has this treatment been in the past? ■ Will a hospital visit/stay be needed? ■ How will I feel before, during and after this treatment? ■ Will there be side-effects, when will I experience them and how long will they last? ■ Will treatment affect my chances of having children in the future? Treatment After treatment ■ What are my treatment ■ How often will I have check-ups options? ■ Can I choose which treatment to have? ■ What would happen if I chose not to have this treatment? ■ Is this treatment part of a and blood tests? ■ Will I receive any supportive treatments, e.g. a bisphosphonate? ■ How will I know if the myeloma has come back? clinical trial? ■ How is the treatment given, how long will it take? Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 61 61 23/06/2016 11:46:19 Carers Tips Carers often have different information needs. If you are a carer you will want to know what you will need to do for your family member/friend. You may want to ask the following questions: ■ Carry paper and a pen with ■ Will they require a stay in ■ Take someone with you to your hospital and for how long? ■ Will they require a lot of looking after? ■ What kind of quality of life do you expect them to have? ■ Who can I call in an emergency? ■ Are we eligible for any benefits from the Government? For more information see the Caring for someone with myeloma Infoguide from Myeloma UK. you to write down questions as they occur to you ■ Give your doctor a list of the questions you have written down at the beginning of your appointment appointments, both as moral support and for an extra ‘listening ear’ ■ Don’t be afraid to ask for extra time to make a decision about treatment; you may want to discuss things with family and friends first ■ Always tell your doctor if you are taking any medications you have bought over the counter (without a prescription), or any vitamins, supplements or complementary therapies you are using ■ Tell your doctor if you are experiencing any side-effects or new symptoms 62 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 62 23/06/2016 11:46:21 Self-help checklist ■ Learn about myeloma and its treatment – order free information from Myeloma UK or download from the Myeloma UK website www.myeloma.org.uk ■ Join a Support Group – it can help to talk to other patients and relatives about how you feel ■ Call the Myeloma Infoline on 0800 980 3332 or 1800 937 773 from Ireland for information and emotional support ■ Find out from your GP which support services and benefits are available and ask for help if you need it ■ Ask for a contact name and number for a member of staff in your medical team and keep the number handy ■ Describe symptoms simply and accurately to your doctor or nurse – do not underplay them or assume they are not important. Try keeping a Patient Diary of your symptoms ■ Take all medication as agreed – use a chart or a segmented pillbox (you can buy one of these at your local chemist) to help you remember what to take and when ■ Bring any side-effects to the attention of your doctor or nurse ■ Try to drink two to three litres of fluid each day ■ Put aside time for rest and relaxation; make getting enough sleep a priority ■ Be aware of ongoing signs of depression and anxiety and speak to your GP about them ■ Try to do something that you enjoy every day ■ Think positively, but allow yourself to have ‘off days’ ■ If you are a carer, make sure you take care of your own health, and take some time for yourself each day Order your free Patient Diary from Myeloma UK. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 63 63 23/06/2016 11:46:21 Medical terms explained Adriamycin® (doxorubicin): A type of chemotherapy drug. Allogeneic stem cell transplant: A procedure in which stem cells from a compatible donor (usually a sibling) are collected, stored and given to the patient following high-dose chemotherapy. 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. 64 Antibiotics: Drugs used to prevent or treat an infection caused by bacteria. 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. Apheresis: A procedure in which stem cells are collected from the blood using a machine that separates them out and returns the remainder of the blood components to the patient or donor. Autologous stem cell transplant: A procedure in which a patient’s own stem cells are collected, stored and then given back following high-dose chemotherapy. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 64 23/06/2016 11:46:21 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. Bence Jones proteins: Free light chains that have been filtered from the blood by the kidney and are found in the urine. The presence of any Bence Jones protein is abnormal. Beta 2 microglobulin (ß2M): A small protein found in the blood. High levels occur in patients with active myeloma. 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 tests: The removal, by a needle, of a sample of cells/ fluid from the bone marrow. The cells are examined to see whether they are cancerous. If cancerous plasma cells are found, the pathologist estimates how much of the bone marrow is affected. 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. Carfilzomib (Kyprolis®): A type of drug called a proteasome inhibitor. 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). Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 65 65 23/06/2016 11:46:21 Chromosomes: The body has tens of thousands of genes packaged in a precise way in structures known as chromosomes. The entire genetic material of humans is arranged in 23 pairs of chromosomes and each cell in the body contains all 23 pairs. One chromosome in each pair is inherited from your mother and one is inherited from your father. Clinical trial: A research study of new or existing treatment that involves patients. Trials may be designed to find better ways to prevent, detect, diagnose, or treat a condition or to answer specific scientific questions. Computerised tomography (CT or CAT scan): A CT scan combines the X-ray procedure with a specialised computer to create detailed cross-sectional images of the body. Dexamethasone: A type of drug called a steroid. Often given alongside other drugs in the treatment of myeloma. Dialysis: When a patient’s kidneys are unable to filter blood, the blood is cleaned by passing it through a dialysis machine. DNA: Stands for deoxyribonucleic acid. It is the hereditary material in humans and almost all other organisms. DNA is in every cell of the body and directs their actions. Doxorubicin (Adriamycin®): A type of chemotherapy drug. Engraftment: The process by which transplanted stem cells travel to the recipient’s bone marrow, where they begin to grow and develop into new blood cells. During this time the number of red blood cells, white blood cells and platelets in the blood may be lower than normal. Cytokine: Proteins produced by cells of the immune system that act as chemical messengers between cells. Cytokines can stimulate or inhibit the growth and activity of various immune cells in response to the particular type of disease present. 66 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 66 23/06/2016 11:46:21 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. Extramedullary plasmacytoma: A collection of myeloma cells found in a single location in the soft tissue. Soft tissue refers to tissue that support, connect or surround organs and bone. This includes tendons, ligaments, muscle, fat, skin, fibrous tissue, nerves and blood vessels. Freelite™ test: The brand name of the Serum Free Light Chain Assay, a sensitive test used to detect and measure the type and amount of free light chains in the blood. Free light chain: Part of an antibody that circulates freely in the blood. Graft-versus-host disease (GVHD): A complication that can occur after an allogeneic stem cell transplant in which the newly transplanted donor cells attack the patient’s own tissue. Graft-versus-myeloma effect: A beneficial reaction of donated stem cells against myeloma cells. Histone deacetylase (HDAC) inhibitor: Drugs used to block the action of histone deacetylase in myeloma cells, preventing their growth and survival. 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. Genes: Genes are made up of strands of DNA. Essentially, they are sets of instructions which together make up the blueprint of life that determines how the body develops, grows and functions. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 67 67 23/06/2016 11:46:21 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. Immunomodulatory drug: Drugs used to act on the body’s immune system. Imnovid® (pomalidomide): A type of immunomodulatory drug. Induction treatment: The initial standard-dose chemotherapy that patients receive as part of the stem cell transplant procedure. Induction treatment aims to reduce the amount of myeloma in the bone marrow before the stem cells are collected. Kyprolis® (Carfilzomib): A type of drug called a proteasome inhibitor. Lenalidomide (Revlimid®): A type of immunomodulatory drug. 68 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. Magnetic resonance imaging (MRI): MRI involves a combination of radio-waves, a powerful magnetic field and a computer to produce images of any organ or tissue. An MRI scan generates very detailed crosssectional images of the area under investigation. Melphalan: A type of chemotherapy drug. MGUS: Monoclonal Gammopathy of Undetermined Significance is a non-cancerous precursor condition to myeloma in which there is a paraprotein present in the blood. There are, however, no symptoms and the risk of transition from MGUS to myeloma is very low; only a 1% chance per year of follow-up. Mini-allogeneic transplant: A type of allogeneic transplant that uses lower doses of chemotherapy than the standard allogeneic transplant. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 68 23/06/2016 11:46:21 Monoclonal antibodies: Monoclonal antibodies mimic the antibodies that the immune system produces in response to foreign organisms, such as bacteria. Each group of monoclonal antibodies is made up of identical copies of one type of antibody. They are synthetic drugs designed to recognise, and attach to, specific proteins on the surface of cancer cells. Myeloma bone disease: One of the most common and debilitating complications of myeloma. Bone disease in myeloma is brought about by the myeloma cells in the bone marrow which affect the surrounding bone and cause the bone to be broken down faster than it can be repaired. Paraprotein: An abnormal antibody (immunoglobulin) produced in myeloma. Measurements of paraprotein in the blood can be used to diagnose and monitor the disease. bone cement into the vertebra to stabilise and strengthen it. Peripheral neuropathy: Damage to the nerves that make up the peripheral nervous system causing pain, tingling and altered sensation. Plasma cell leukaemia: A cancer characterised by unusually high levels of abnormal plasma cells in the blood. It can start by itself or it can evolve from advanced myeloma. Plasma cells: Specialised white blood cells that produce antibodies (immunoglobulins) to fight infection. Plateau: A period of time when the myeloma, and the paraprotein level, is relatively stable. Platelets: Small blood cells which are involved in blood clotting. Pomalidomide (Imnovid®): A type of immunomodulatory drug. Percutaneous Vertebroplasty: A procedure used to repair/ stabilise a compression fracture in one or more vertebrae and to relieve pain. It involves injecting Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 69 69 23/06/2016 11:46:21 Prednisolone: A type of drug called a steroid. Often given alongside other drugs in the treatment of myeloma. Prognostic marker: A characteristic that gives an indication of the likely progression of a disease among patients with the same characteristic. Proteasome inhibitor: A type of drug that interferes with the normal functioning of part of a cell called the proteasome. This causes abnormal cells to die while leaving normal, healthy cells less affected. 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. Radiotherapy: Treatment with X-rays, gamma rays, or electrons to damage or kill malignant cells. Red blood cells: Blood cells which transport oxygen around the body. Refractory: Disease that has failed to respond to treatment. 70 Relapse: The point where disease returns or becomes more active after a period of remission or plateau (often referred to as stable disease). Remission: The period following treatment when myeloma cells and paraprotein are no longer detectable, and there are no clinical symptoms of myeloma. Revlimid® (lenalidomide): A type of immunomodulatory drug. Smouldering myeloma: An early form of myeloma which usually progresses at a slow rate. 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. Steroid: A group of hormonal substances produced by the body. They are also produced synthetically and used to treat many conditions. www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 70 23/06/2016 11:46:21 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. White blood cells: Blood cells involved in the body’s immune system, which help to fight infection. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 71 71 23/06/2016 11:46:21 Appendix 1: Blood tests and normal ranges Blood tests Test name Normal range* Notes Full blood count White cell count 4.0 – 11.0 (x 109 /L) A low count makes you less able to fight infections Haemoglobin (men) 135 – 180 (g/L) A low haemoglobin level causes anaemia and fatigue Haemoglobin (women) 115 – 160 (g/L) Platelets 150 – 400 (x 109/L) A low count makes you bruise or bleed easily Absolute Neutrophil Count 1.5 – 7.5 (x 109/L) A low count makes you less able to fight infection Urea 2.5 – 6.7 (mmol/L) Measure of kidney function Creatinine 70 – 150 (mol/L) Measure of kidney function Calcium (total) 2.12 – 2.6 (mmol/L) Raised by myeloma bone disease Paraprotein 0 (g/L) Abnormal protein found in certain conditions, including myeloma Total protein 60 – 80 (g/L) Often raised in myeloma because of amount of paraprotein Albumin 35 – 50 (g/L) Often lowered in myeloma because of presence of paraprotein Kappa () light chain 3.3 - 19.4 (mg/L) Lambda () light chain 5.71 – 26.3 (mg/L) Urea, electrolytes and creatinine Proteins Part of an immunoglobulin (antibody). Levels are often raised in myeloma, with an abnormal ratio (normal ratio is 0.26 to 1.65) * The normal range is an average, but each hospital laboratory has its own ‘normal range’ of values. 72 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 72 23/06/2016 11:46:24 Explanation of units g/L number of grams there are in a litre of blood x 1012/L number of billion cells there are in a litre of blood mmol/L number of thousandths of a mole** in a litre of blood umol/L number of millionths of a mole** there are in a litre of blood **mole a standard measurement for the amount of any chemical Please note that doctors do not use a litre of blood to make these measurements; they just take a small sample (a few millilitres) and then multiply up the results. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 73 73 23/06/2016 11:46:24 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. 74 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 74 23/06/2016 11:46:24 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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 75 75 23/06/2016 11:46:24 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. 76 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 76 23/06/2016 11:46:24 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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 77 77 23/06/2016 11:46:24 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. 78 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 78 23/06/2016 11:46:24 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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 79 79 23/06/2016 11:46:24 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. 80 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 80 23/06/2016 11:46:24 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. OvercomeDepression www.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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 81 81 23/06/2016 11:46:24 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. Relate www.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. Samaritans www.samaritans.org 116 123 (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. Scope www.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. 82 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 82 23/06/2016 11:46:24 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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 83 83 23/06/2016 11:46:24 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.uk www.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. 84 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 84 23/06/2016 11:46:24 Ireland ACCORD www.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. 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. Infoline: 0800 980 3332 Myeloma Essential Guide PRINT LK March 2016.indd 85 85 23/06/2016 11:46:24 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. The Irish Hospice Foundation www.hospicefoundation.ie 01 679 3188 The Irish Hospice Foundation website includes a directory of hospices across Ireland. MyMyeloma www.mymyeloma.ie Dedicated Irish myeloma website for patients, family members and those with an interest in myeloma. 86 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 86 23/06/2016 11:46:24 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 Myeloma Essential Guide PRINT LK March 2016.indd 87 87 23/06/2016 11:46:24 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 terly magazine offers a mix of the latestt news in research and development for myeloma, yeloma, and patient and family experiences. es. 88 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 88 23/06/2016 11:46:25 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 Myeloma Essential Guide PRINT LK March 2016.indd 89 89 23/06/2016 11:46:27 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 ma symptoms and complications of myeloma gue. 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, travell a. insurance and caring for someone with myeloma. Related conditions Information on conditions related to myeloma,, including MGUS, plasmacytoma, smouldering myeloma and AL amyloidosis. 90 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 90 23/06/2016 11:46:29 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 ce 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 Myeloma Essential Guide PRINT LK March 2016.indd 91 91 23/06/2016 11:46:33 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 92 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 92 23/06/2016 11:46:39 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 Myeloma Essential Guide PRINT LK March 2016.indd 93 93 23/06/2016 11:46:40 Notes 94 www.myeloma.org.uk Myeloma Essential Guide PRINT LK March 2016.indd 94 23/06/2016 11:46:43 Published by: Myeloma UK Publication date: September 2006 Last updated: June 2015 Review date: June 2017 ® HICKMAN Catheter is a registered trade mark of C.R.Bard, Inc Myeloma UK publications are extensively reviewed by patients and healthcare professionals prior to publication. Myeloma Essential Guide PRINT LK March 2016.indd 95 23/06/2016 11:46:43 Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG T: 0131 557 3332E: [email protected] No: SC 026116 Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk Myeloma Awareness Week 21 - 28 June Myeloma Essential Guide PRINT LK March 2016.indd 96 23/06/2016 11:46:43