Serum Free Light Chain Assay. Myeloma Infoguide Series

Transcription

1 Serum Free Light Chain Assay Myeloma Infoguide Series

2 Contents 4 Introduction 5 What is myeloma? 7 What are immunoglobulins? 10 Measuring paraproteins and free light chains 13 The Serum Free Light Chain Assay 15 Which patients might benefit from the Serum Free Light Chain Assay? 17 The future 18 Questions for your doctor/medical team 19 Medical terms explained 22 Further information and useful organisations 34 With Myeloma UK you can Other information and support available from Myeloma UK 37 We need your help Disclaimer The information in this 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.

3 Introduction This Infoguide has been written for myeloma patients. It may also be helpful for their families and friends. It provides information about a blood test called the Serum Free Light Chain Assay or Freelite test, which may be helpful in the diagnosis and monitoring of myeloma. Some of the more technical or unusual words appear in bold the first time they are used and are described in the Medical terms explained section on page 19. This Infoguide aims to: Help you understand more about the Serum Free Light Chain Assay Describe the role of the Serum Free Light Chain Assay in the diagnosis and monitoring of myeloma Answer some of the questions you may have about the Serum Free Light Chain Assay Myeloma UK provides a range of Infoguides and Infosheets on specific treatment options, the management of myeloma, and other topics relevant to patients, their carers, families and friends. You will find a list of the information available at the back of this Infoguide. For more detailed information about myeloma and living with myeloma, see Myeloma Your Essential Guide and Living with Myeloma Your Essential Guide. To order your free copies call the Myeloma Infoline on or from Ireland. This information is also available to download at To talk to one of our Myeloma Information Specialists about any aspect of myeloma, call the Myeloma Infoline on or from Ireland. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK and Ireland. From outside the UK and Ireland, call +44 (0) (charged at normal rate). Information and support about myeloma is also available around the clock at 4

4 What is myeloma? Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells that are normally found in the bone marrow. Plasma cells are a type of white blood cell which forms part of the immune system. Bone marrow is the spongy material found in the centre of the larger bones in the body. As well as being home to plasma cells, the bone marrow is where blood cells (red blood cells, white blood cells and platelets) are made (see Figure 1). These all originate from blood stem cells. In general, plasma cells make up less than 5% of the total number of blood cells in the bone marrow. Figure 1. Bone marrow responsible for the production of blood cells Red blood cells White blood cells Natural killer cell Bone marrow Lymphocyte Plasma cell Blood stem cell Monocyte Neutrophil Eosinophil Basophil Platelets Myeloma Infoline: UK Ireland

5 Normally, different plasma cells produce different types of antibodies (also called immunoglobulins) to help fight infection. In myeloma, however, one particular plasma cell becomes malignant and reproduces out of control giving rise to a very large number of one type (monoclonal) of abnormal plasma cell. These abnormal plasma cells are called myeloma cells and they often end up crowding out the normal cells in the bone marrow. One of the characteristic features of myeloma cells is that they produce only one type of immunoglobulin known as paraprotein. Unlike normal immunoglobulins, paraproteins have no useful function in the immune system. In addition, they are produced at a much greater rate in myeloma cells than normal infection-fighting immunoglobulins in plasma cells. Together, the presence of myeloma cells and paraproteins severely weakens the immune system making you more prone to and less able to fight infection. Paraprotein, however, does have its uses as it is often through its measurement in blood and urine that myeloma is diagnosed and detected. To understand more about myeloma and the role of the Serum Free Light Chain (sflc) Assay, it is important to first understand more about immunoglobulins. 6

6 What are immunoglobulins? As described earlier, immunoglobulins (represented by the letters Ig), are a family of specialised proteins produced by plasma cells. They are also known as antibodies and play a vital role in the body s immune system. There are several different types of immunoglobulin, each with a specialised role in fighting infection. When you get an infection, your body normally responds by making lots of different immunoglobulins. These immunoglobulins work by identifying and attaching to foreign substances such as bacteria and assist in their removal and destruction in different ways. Each immunoglobulin molecule consists of a Y-shaped structure composed of smaller units called heavy chains and light chains. There are five different types of heavy chain which are referred to by the letters G, A, M, D and E, and two different types of light chain known as kappa (κ) chains and lambda (λ) chains. An immunoglobulin molecule is comprised of two identical heavy chains and two identical light chains as shown in Figure 1. Figure 1: Immunoglobulin structure Light chains (κ) or(λ) Heavy chains (G, A, M, D or E) Myeloma Infoline: UK Ireland

7 Each plasma cell produces just one type of heavy chain and one type of light chain which are assembled within the plasma cell to form the complete (intact) immunoglobulin molecule before they are released into the bloodstream. For reasons that are not clearly understood, plasma cells typically produce slightly more light chains than heavy chains. This means that there is always a surplus of unattached light chains. These are referred to as free light chains and are also released into the bloodstream. In all, there are ten possible light and heavy chain combinations that give rise to an intact immunoglobulin molecule; each is named according to its heavy and light chain composition (see Table 1). Table 1 Types of immunoglobulin molecules IgG Kappa IgA Kappa IgM Kappa IgD Kappa IgE Kappa IgG Lambda IgA Lambda IgM Lambda IgD Lambda IgE Lambda Normally, a mixture of all the different types of immunoglobulin molecules (collectively known as polyclonal immunoglobulins) is made by the different plasma cells, each with a specialised role in fighting infection. Myeloma cells, on the other hand, only make one type of immunoglobulin molecule (monoclonal immunoglobulin or paraprotein) together with an abnormal excess of free light chains. Therefore, although myeloma patients still have a mixture of different types of immunoglobulin molecules, a large proportion will be made up of paraprotein. 8

8 In general, myeloma can be classified according to the type of monoclonal immunoglobulin the myeloma cells produce. Based on this classification, approximately: 65% of patients have IgG myeloma of which 60% have kappa light chains 20% of patients have IgA myeloma of which 71% have kappa light chains 1% of patients have IgD, IgM or IgE myeloma In addition, about 5 10% of myeloma patients do not produce the complete immunoglobulin molecule but instead produce only free light chains (also known as Bence-Jones protein). This is known as light chain myeloma or Bence-Jones myeloma. More rarely, in about 1 2% of myeloma patients, the myeloma cells produce no detectable levels of paraprotein in blood or urine. This type of myeloma is known as non-secretory myeloma. Despite the fact there are different types of myeloma, the major symptoms and course of the myeloma are largely the same regardless of the type of myeloma. Myeloma Infoline: UK Ireland

9 Measuring paraproteins and free light chains Identifying the presence, amount and type of paraprotein has always played an important part in the diagnosis and monitoring of myeloma. Paraprotein can be detected and measured in a blood or urine sample. When measurements are to be taken from blood, all of the blood cells and proteins for clotting blood are removed from the blood sample. The remaining fluid, known as serum, is analysed for the presence of paraprotein. For measurements in urine, a 24-hour urine collection is normally required. The following describes some of the methods used to measure paraprotein. Serum and urine protein electrophoresis Conventionally, paraprotein in serum or urine is measured by a laboratory test called protein electrophoresis. This separates proteins in the sample according to their electrical charge and size to produce a typical profile shown in Figure 2a. Immunoglobulins are detected in the gamma region and under normal circumstances the peak is shallow and broad. In myeloma, the profile is different (Figure 2b) with a large spike in the gamma region indicating a much higher amount of immunoglobulin as a consequence of the presence of increased paraprotein. The height of the spike indicates the amount of paraprotein present i.e. the taller the spike, the greater the amount of paraprotein. As well as forming an essential part of the investigation and diagnosis of myeloma, serum or urine protein electrophoresis is also useful for monitoring the response to treatment and measuring paraprotein levels during periods off treatment for any signs of a possible relapse. However, neither serum nor urine protein electrophoresis can be used to identify the type of paraprotein (IgG, IgA, IgM, IgD, IgE) that is present. For this, another type of test called immunofixation electrophoresis is necessary and is usually performed after serum or urine protein electrophoresis has been completed. 10

10 Figure 2: Example of protein profile obtained from protein electrophoresis of serum from normal or myeloma sample Albumin Alpha 1 Alpha 2 Beta Gamma Figure 2a: Typical protein profile Albumin Gamma Alpha 1 Alpha 2 Beta Figure 2b: Abnormal protein profile in myeloma All three methods have advantages and disadvantages. Electrophoresis is currently the only reliable way of detecting paraprotein in serum and urine. However, it is relatively insensitive and can only detect paraproteins at levels over a certain threshold. This means that these tests are not suitable for diagnosing and monitoring patients where little or no paraprotein is produced. Similarly, electrophoresis is not suitable for detecting free light chains unless they are present in vast excess i.e. over 50 times the normal levels for serum protein electrophoresis and over 15 times the normal level for immunofixation electrophoresis. Consequently, alternative methods must be used for monitoring those patients who produce little or no paraprotein and for accurately measuring free light chains. Myeloma Infoline: UK Ireland

11 Serum Free Light Chain Assay The detection and measurement of free light chains has been helped by the recent availability of the Serum Free Light Chain Assay (sflc assay or Freelite test). This test is a much more sensitive way of measuring free light chains in the blood and even though it is not universally recognised, it can form a valuable additional test in the diagnosis and monitoring of myeloma. The sflc assay is particularly useful for patients with light chain myeloma and some types of non-secretory myeloma. It also has the potential to detect relapse much earlier. However, there are still certain types of non-secretory myeloma that are undetectable by both electrophoresis and sflc assay. For these patients, regular bone marrow biopsies are required to monitor the myeloma and their response to treatment. The following sections describe the sflc assay and its use in more detail. 12

12 The Serum Free Light Chain Assay The sflc assay is a test used to measure the amount of free kappa and free lambda immunoglobulin light chains in serum. It is much more sensitive than serum or urine protein electrophoresis and is capable of detecting small increases in free light chain levels which electrophoresis cannot. The sflc assay may therefore help your doctor monitor how well your treatment is working at an early stage regardless of the type of myeloma you have. This is because the amount of free light chains in the blood falls more quickly than the amount of complete paraprotein (with both heavy and light chains) when treatment is successful. This means that a response to treatment can often be detected in a matter of days with the sflc assay, whereas it may take several weeks to detect a response by electrophoresis. The sflc assay can also identify signs of a relapse earlier in some patients and in the same way that it detects response to treatment earlier, it can detect rising levels of free light chains earlier too. Although the sflc assay is commonly used, it is still regarded as a specialised test that requires experience and expertise in its interpretation and use. Some hospitals are able to perform the sflc assay in their own laboratory, whilst others send the sample away to a centralised testing laboratory. What do the results mean? The free light chain levels in blood vary from person to person but the normal ranges are: Kappa free light chains: mg per litre of blood Lambda free light chains: mg per litre of blood In myeloma, the light chains produced by the myeloma cells are exclusively kappa light chains or lambda light chains depending on the type of myeloma (see page 7). Myeloma Infoline: UK Ireland

13 Therefore, if the myeloma cells produce kappa light chains then the level of kappa light chains in the blood will increase above the normal range. If, on the other hand, the myeloma cells produce lambda light chains, then the level of lambda light chains in the blood will increase above the normal range. An increase in either kappa or lambda light chain levels in the blood indicates active myeloma. The kappa/lambda ratio is also calculated and is considered to be as important as the levels of kappa and lambda light chains for diagnosing and monitoring myeloma. The normal range for the kappa/lambda ratio is between When either the kappa or lambda level is very high but the other is normal, the ratio will be abnormal and will indicate that the myeloma is active. If both the kappa and lambda levels are within the normal range but the kappa/lambda ratio is abnormal, this suggests there may be a persistent low level of active myeloma. A normal kappa/lambda ratio after treatment is a good indication of a complete remission. 14

14 Which patients might benefit from the Serum Free Light Chain Assay? The sflc assay is particularly useful for diagnosing and monitoring patients with certain types of myeloma, especially those which produce little or no paraprotein. It may also be useful for diagnosing and monitoring other conditions related to myeloma. Patients who may benefit include those with: Non-secretory myeloma In one form of non-secretory myeloma, the levels of paraprotein produced by the myeloma cells are too low to be detected by electrophoresis. However, the myeloma cells may produce detectable levels of free light chains which can be measured with the sflc assay. In another form of non-secretory myeloma where no detectable free light chains are produced (very rare), then the sflc assay will not be of use. Light chain myeloma Until the sflc assay, light chain myeloma could only be monitored using a urine test. The urine test requires you to collect your urine over 24 hours, which often is inconvenient and restricting. More importantly, urine tests for free light chains can be negative at the early stages of disease as the capacity of the kidneys to retain the free light chains must be exceeded before free light chains appear in the urine. This, therefore, makes a diagnosis by urine test difficult. These problems can now be overcome using the sflc assay; light chain myeloma can now be diagnosed and monitored by giving a blood sample instead. AL amyloidosis The sflc assay is the primary test used for the diagnosis and monitoring of AL amyloidosis. Myeloma Infoline: UK Ireland

15 For more details about AL amyloidosis and the Serum Free Light Chain Assay, see AL amyloidosis Your Essential Guide, and the Serum Free Light Chain Assay Infosheet from Myeloma UK. To order your free copies call the Myeloma Infoline on or from Ireland. This information is also available to download at myeloma.org.uk/amyloidosis Monoclonal Gammopathy of Undetermined Significance (MGUS) MGUS is the most common disorder of the plasma cell and usually does not cause any symptoms or require treatment. A small proportion of MGUS patients will progress to developing myeloma later on. This risk is increased if there is an increased free light chain level or if the kappa:lambda ratio is abnormal. Using the sflc assay may help provide a clearer prognosis. 16

16 The future The sflc assay is an important advance in the diagnosis and monitoring of myeloma and its related disorders. It is recommended for use by the British Committee for Standards in Haematology (BCSH) and the UK Myeloma Forum (UKMF) and many hospitals are now using this test to monitor myeloma patients. It is, however, not always used as an aid for the diagnosis and monitoring of all myeloma patients. The test is still being investigated in clinical studies and knowledge about the best way to use it continues to grow. If you would like to know more about the test and whether it would benefit you, speak to your consultant. Myeloma Infoline: UK Ireland

17 Questions for your doctor/medical team It can be helpful to write your questions down and give a copy to your doctor at the start of your consultation. You might want to carry a piece of paper with you so you can make a note of the questions as they occur to you. Some questions that you may want to ask your doctor/medical team include: Will the Serum Free Light Chain Assay be beneficial for me? How often will I need the Serum Free Light Chain Assay? Will I still need to give urine samples? Where will I get the Serum Free Light Chain Assay? How long will I have to wait for the results? What are the normal values for the Serum Free Light Chain Assay? Will the Serum Free Light Chain Assay be able to show if my treatment is working? If I am in remission, will I still need the Serum Free Light Chain Assay? 18

18 Medical terms explained Antibodies (immunoglobulins): Specialised proteins produced by certain white blood cells (plasma cells) to fight infection and disease. AL amyloidosis: A disease where abnormal plasma cells in the bone marrow produce abnormal free light chains that are deposited in tissues and organs throughout the body. Bence Jones Protein: Free light chain found in blood or urine. This can be measured in the urine by electrophoresis or in the blood (serum) by the Serum Free Light Chain Assay. Bone marrow: The soft, spongy tissue in the centre of bones where red blood cells, white blood cells and platelets are produced. Complete remission: Less than or equal to 5% plasma cells in the bone marrow and no detectable paraprotein as defined by the International Myeloma Working Group (IMWG) uniform response criteria Electrophoresis: A laboratory test in which molecules such as proteins are separated according to their size and electrical charge. For myeloma patients, electrophoresis of the blood or urine allows the calculation of the amount of paraprotein present. Electrophoresis is used both for diagnosis and for monitoring. Freelite : The brand name of the Serum Free Light Chain Assay used in the UK. Immune system: The complex group of cells and organs that protect the body against infection and disease. Immunofixation electrophoresis: A method used to identify specific proteins in the blood after they have been separated by electrophoresis using antibodies directly targeted to the protein of interest. Myeloma Infoline: UK Ireland

19 Immunoglobulins: 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 antigens such as those found on the surface of bacteria and viruses and to remove them. Their role therefore is most commonly to fight infection. There are five main types: IgA, IgD, IgE, IgG and IgM. Light chain myeloma: A type of myeloma where only the light chain portion of the immunoglobulin is produced. It occurs in approximately 20% of myeloma patients. Malignant: Cancerous cells which have the ability to invade and destroy tissue. MGUS: Monoclonal Gammopathy of Undetermined Significance (MGUS) is a disorder characterised by the accumulation of plasma cells within the bone marrow and/or the presence of paraprotein. The feature that distinguishes it from myeloma is the lack of symptoms and organ damage i.e. there are no lytic bone lesions (damaged areas of bone), no kidney damage and no anaemia. The risk of transition from MGUS to active myeloma is generally low; only a 1% chance per year of follow-up. MGUS is very common and affects around 4% of people over the age of 70. Non-secretory myeloma: A type of myeloma characterised by the absence of a paraprotein in both serum (fluid component of blood) and urine. It occurs in 1 2% of all myeloma patients. Paraprotein: An abnormal immunoglobulin produced by plasma cells. The presence of paraprotein in blood or urine may be associated with myeloma or MGUS. It is also called monoclonal protein, myeloma protein, M spike, M protein or M band. Plasma cells: A type of white blood cell that produces immunoglobulins (antibodies) to fight infection. Platelets: Small blood cells that are involved in blood clotting. Red blood cells: Blood cells that transport oxygen around the body. 20

20 Relapse: The point where the myeloma returns or becomes active after a period of remission or stable disease. Serum: The clear liquid part of the blood that remains after blood cells and clotting proteins have been removed. Stem cells: The cells from which all blood cells develop. Normal 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 for transplant. White blood cells: Blood cells involved in the body s immune system. Myeloma Infoline: UK Ireland

21 Further information and useful organisations United Kingdom Benefit Enquiry Line (Monday Friday, 8.30am 6.30pm; Saturday 9am 1pm) The Benefit Enquiry Line is a confidential advice and information service for people with disabilities, and their carers and representatives. The enquiry line provides information about social security benefits and how to claim them, and can provide assistance, over the phone, with filling out benefit application forms. Blue Badge Scheme (Blue Badge Helpline; Monday Friday, 9am 5pm) 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. To apply for a badge, contact the Social Services Department (or in Scotland the Social Work Department) of your local authority or council. British Association for Counselling and Psychotherapy (BACP) (General enquiries; Monday Friday, 8.45am 5pm) (Client Information Helpline; Monday Friday, 8.45am 5pm) BACP provides advice on a range of services to help meet the needs of anyone seeking information about counselling and psychotherapy. To find a local counsellor call the Client Information Helpline, or use the search facility on their website. British Red Cross (General enquiries; Monday Friday, 9am 5pm) Volunteers assist with a range of local services including care in the home, transport and medical loans to help those with health issues lead a full and independent life. The Medical Equipment Service has a wide range of products and equipment available for short-term loan. The Home from Hospital Service provides short-term practical assistance and support to help people settle back into their own homes. A Transport and Escort Service offers help to people who cannot get about easily or use ordinary transport. 22

22 Cancer Black Care (Monday Friday, 9am 5pm) Cancer Black Care provides a unique service of information, advice and support for the black and minority ethnic community. The Cancer Counselling Trust (Monday Friday, 9am 5pm) The Cancer Counselling Trust offers free telephone counselling across the UK. It supports cancer patients, their families, friends and care givers who seek counselling to help them through the difficult issues precipitated by a cancer diagnosis. It provides free, specialist counselling for anyone impacted by cancer, across the UK. Cancer Research UK (Nurse information line; Monday Friday, 9am 5pm) CancerHelp UK is the patient information website of Cancer Research UK. It provides a free information service about cancer and cancer care for patients and their families. Carer s Allowance Unit (Switchboard, ask for the Carer s Allowance Unit; Monday Thursday, 9am 5pm; Friday 9am 4.30pm) General information about the carer s allowance, and assistance with filling in the application form. Carers UK (Wednesday and Thursday, 10am 12noon, 2pm 4pm) 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. Myeloma Infoline: UK Ireland

23 Citizens Advice Bureau (CAB) (Monday Friday, 8am 6pm) 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. Contact the number listed above, use its website, or check your local telephone directory for details of your nearest branch. Crossroads (Monday Friday, 9am 5pm) Crossroads employs trained care support workers whose role is to relieve the family carers by giving them a break from their caring responsibilities, providing the carer time to be themselves. Cruse Bereavement Care (Monday Friday, 9.30am 5pm) 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 (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 the UK. Depression Alliance also produces a wide range of publications covering various aspects of depression. DIAL UK (Monday Friday, 10am 4pm) DIAL UK is a national organisation for a network of approximately 120 local disability information and advice services run by and for disabled people. DIAL provides information and advice on all aspects of living with a disability, including welfare benefits, transport, mobility and equipment. 24

24 Directgov A government website which provides information about a wide range of public services including benefits such as Attendance Allowance, Disability Living Allowance and Carer s Allowance. Disability Benefits Unit (Monday Friday, 7.30am 6.30pm) Provides advice and information about the Attendance Allowance and the Disability Living Allowance. Call to request a claim pack. Financial Services Authority (FSA) (FSA Consumer Helpline; Monday Friday, 8am 6pm) The Financial Services Authority is the watchdog set up by government to regulate financial services. Money Made Clear is an online service from the FSA to provide clear, impartial information about financial products and services, helping you to make an informed decision. Help the Hospices Hospice Information Service (Monday Friday, 9am 5pm) Help the Hospices provides information to health professionals and the general public about hospice and palliative care services in the UK. Its online and telephone service can help you find a local hospice. Help with Health Costs (Monday Friday, 8am 6pm; Saturday, 9am 3pm) Help with Health Costs gives information about prescription charges and getting help with health costs. It also issues exemption from health costs certificates, and prescription pre-payment certificates. Independent Financial Advice Promotion (IFAP) IFAP is the industry body responsible for promoting independent financial advice in the UK. It provides a UK-wide list of authorised financial advisers on its website. IFAP also produces a wide range of publications covering various aspects of financial management including mortgages, savings, investments and pensions. Myeloma Infoline: UK Ireland

25 Institute for Complementary and Natural Medicine (ICNM) (Monday Friday, 10am 4pm) The Institute for Complementary and Natural Medicine (ICNM) provides the public with information about all aspects of complementary medicine. It also administers the British Register of Complementary Practitioners, providing details of local registered practitioners of various complementary therapies. Job Centre Plus (Monday Friday, 8am 6pm) Information and claims service for income support, incapacity benefit, job seekers allowance and employment and support allowance. (Incapacity benefit was replaced by employment and support allowance for new claims from October ) Leukaemia CARE (24 hours a day, 7 days a week) Leukaemia CARE exists to provide care and support to all those whose lives have been affected by leukaemia, lymphoma, myeloma and the allied blood disorders. Leukaemia CARE also offers discretional financial assistance and caravan holidays in the UK. Leukaemia & Lymphoma Research (Monday Friday, 9am 5pm) Leukaemia & Lymphoma Research funds research into leukaemia and related blood disorders including lymphoma and myeloma. It also provides free patient information booklets with accessible and accurate information on blood cancers and the related disorders. Macmillan Cancer Support Benefits Advice (Monday Friday, 10am 5pm) Macmillan Cancer Support offers information about how to access benefits and other kinds of financial support. 26

26 Macmillan Cancer Support Macmillan Support Line; Monday Friday, 9am 9pm. If you are deaf or hard of hearing you can use the textphone service on Marie Curie Cancer Care (Monday Sunday, 9am 10.30pm) Marie Curie provides specialist palliative nurses and has ten Marie Curie Centres providing free respite and hospice care throughout the UK. MedicAlert (Monday Friday, 9am 5pm) MedicAlert is a non-profit charity that provides a life-saving identification system for individuals with hidden medical conditions. Medical Research Council (MRC) (Head office switchboard; Monday Friday, 9am 5pm) The MRC promotes research into all areas of medical and related science. National Amyloidosis Centre (NAC) (General enquiries; Monday Friday, 9am 5pm) Based at the Royal Free and University College Medical School, London, the NAC is the only centre in the UK specialising in amyloidosis. The centre has state of the art clinical and research facilities and a team of highly qualified clinical, research and support staff. National Cancer Research Institute (NCRI) (Monday Friday, 9am 5pm) The National Cancer Research Institute is a partnership of health departments, the Medical Research Council and major cancer charities which aims to develop common plans for cancer research. National Debtline (Monday Friday, 9am 9pm; Saturday 9.30am 1pm) Offers free, confidential and independent advice on how to deal with debt problems. Myeloma Infoline: UK Ireland

27 National Institute for Health and Clinical Excellence (Monday Friday, 9am 5pm) NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. 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 (Monday Friday, 9am 5pm) The National Kidney Federation provides information about kidney disease and dialysis, and promotes best practice in renal medicine. NHS Direct/NHS (NHS Direct; England, Northern Ireland and Wales) (NHS 24; Scotland) Staffed by trained medical professionals, these organisations provide 24-hour access to information about all aspects of health and healthcare. NHS National Library for Health The NHS National Library for Health is aimed at NHS staff, patients and the general public and provides information on all aspects of health, illness and treatment. OvercomeDepression OvercomeDepression aims to offer a unique reference point for information and practical advice on depression. Pain Association Scotland (Monday Friday, 9.30am 4pm) Pain Association Scotland offers support to people with chronic pain and organises pain management support groups across Scotland. 28

28 Pain Concern (Monday Friday, 9am 5pm; Friday, 6.30pm 7.30pm) Pain Concern provides a range of information about self-help and managing pain. Its helpline offers information, support and a listening ear. Patient Advice and Liaison Services (PALS) This service is available in England to provide patients and their families with information regarding health related enquiries, NHS services and other support available. It 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. Penny Brohn Cancer Care (formerly Bristol Cancer Help Centre) (Monday Friday, 9.30am 5pm) 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. The Pensions Advisory Service (Monday Friday, 9am 5pm) The Pensions Advisory Service is an independent non-profit organisation that provides free information, advice and guidance on a spectrum of pensions covering state, company, personal and stakeholder schemes. The Pension Service (Pension helpline; Monday Friday, 8am 8pm) (Pension credit information; Monday Friday, 8am 8pm) (Winter fuel payments helpline; Monday Friday, 8am 5pm) Part of the Department for Work and Pensions, the pension service provides information about pensions and benefits, for current and future pensioners. Myeloma Infoline: UK Ireland

29 Princess Royal Trust for Carers (Monday Friday, 9am 5pm) The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK. Through its unique network of 144 independently managed Carers Centres, 85 young carers services and interactive websites, the Trust currently provides quality information, advice and support services to almost 354,000 carers. Relate (Monday Thursday, 8am 10pm; Friday, 8am 6pm; Saturday, 8am 4pm) 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. Royal Association for Disability and Rehabilitation (RADAR) (Monday Friday, 9am 5.30pm) RADAR is a national organisation for disabled people. It publishes information on all aspects of living with disability, including transport and mobility. RADAR runs the National Key Scheme, which offers disabled people access to 7,000 locked public toilets around the country. Samaritans (24 hours a day, 7 days a week) Samaritans provides confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. It offers services by telephone, , letter and face to face. SSAFA (Soldiers, Sailors, Airmen and Families Association) A national charity committed to supporting those who serve or have served (even for just one day) in our Armed Forces. It offers a Confidential Support Line, financial assistance, help in organising and funding home adaptations or special equipment and practical/emotional support for those who are lonely, bereaved or ill. 30

30 Tenovus Cancer Information Centre (Monday Friday, 9am 5pm) 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. UK Myeloma Forum The UK Myeloma Forum is an organisation of people professionally engaged in the field of myeloma who are working to improve the outlook for patients with myeloma and related disorders. On behalf of the British Committee for Standards in Haematology, UKMF has produced guidelines on the diagnosis, treatment and management of myeloma. Ulster Cancer Foundation (Northern Ireland) (Monday Friday, 9am 5pm) The Ulster Cancer Foundation offers information, support and counselling to people affected by cancer in Northern Ireland. Its helpline is staffed by specially trained nurses with experience in cancer care. It also runs a Myeloma Support Group. Ireland ACCORD Caring for marriage and relationships. It is the largest marriage-care agency in Ireland. Association of Registered Complementary Health Therapists of Ireland It acts as an umbrella association in order to promote better awareness of complementary health medicine. Care Carers provide practical information and guidance for people who are caring for someone who has been diagnosed with a life-threatening illness in Ireland. Myeloma Infoline: UK Ireland

31 Chronic Pain Ireland (Monday Thursday, 9.30am 5pm) Chronic Pain Ireland provides information and support to those living with chronic pain, their families and friends. Citizens Information Citizens Information is an Irish egovernment website provided by the Citizens Information Board. The site provides public service information for Ireland. Ireland out of hours (carers) For Ireland out of hours contacts: Irish Cancer Society (Monday Thursday, 9am 7pm, Friday, 9am 5pm) From the UK dial 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 a booklet on myeloma. The Irish Hospice Foundation (Monday Friday, 9am 1pm, Monday Thursday, 2pm 5.30pm, Friday 2pm 5pm) Works independently and in partnership with the statutory, voluntary and professional bodies with hospice and palliative care in Ireland. MyMyeloma Dedicated Irish myeloma website for patients, family members and those with an interest in myeloma. 32

32 Overseas Myeloma Patients Europe (MPE) MPE was formed following a merger between the European Myeloma Platform and Myeloma Euronet. It is a non-profit organisation and acts as an umbrella organisation for existing local and national myeloma associations and its members come from nearly 30 countries. MPE is dedicated to raising awareness of myeloma. Multiple Myeloma Research Foundation (MMRF) The MMRF is a US-based private funder of worldwide myeloma-specific research. It provides information about myeloma treatments and international clinical studies. For a complete list of useful organisations see Myeloma Your Essential Guide from Myeloma UK. To order your free copy, call our Myeloma Infoline on or from Ireland. This information is also available to download at Myeloma Infoline: UK Ireland

33 With Myeloma UK you can... Call our Myeloma Infoline on or from Ireland for information, practical advice, emotional support and a listening ear Get free Infopacks, Infoguides and Infosheets about myeloma Learn about myeloma from experts and meet others affected by myeloma by attending Patient and Family Myeloma Infodays Subscribe to our newsletter Myeloma Matters Visit our website Join a Myeloma Support Group 34

34 Other information and support available from Myeloma UK Essential Guides Myeloma Your Essential Guide Living with myeloma Your Essential Guide Infoguides Infoguide topics include: Balloon Kyphoplasty Myeloma Bone Disease and Bisphosphonates Caring for someone with myeloma Chemotherapy Clinical Studies Cyclophosphamide, Thalidomide and Dexamethasone (CTD) Fatigue High-Dose Therapy & Autologous Stem Cell Transplantation Melphalan, Prednisolone and Thalidomide (MPT) Myeloma XI Pain and myeloma Revlimid and myeloma Thalidomide and myeloma Velcade and myeloma Leaflets Myeloma An Introduction About Myeloma UK Myeloma UK Publications list Infosheets Infosheet topics include: Biosimilars, Constipation, Copayments, Diet and Nutrition, Erythropoietin, Fatigue, Growth Factors, Managing Your Finances (Benefits and General), MGUS, Mouth care, Osteonecrosis of the Jaw, Pain, Percutaneous Vertebroplasty, Peripheral Neuropathy, Plasmacytoma, Plasmapheresis, Prescription Charges, Radiotherapy, Setting up a Support Group, Smouldering Myeloma, Steroids, Strength activities for people with myeloma, Stretches for people with myeloma, Support Groups, Swine Flu, The kidney, Travel Insurance, Travelling. Myeloma Infoline: UK Ireland

35 Horizons Infosheet Series These provide information on a number of treatments and procedures that are in the final stages of research or development and which are showing a great deal of promise. Current Horizons Infosheets: Bendamustine, Carfilzomib and Pomalidomide. Patient diary This diary helps patients keep a track of hospital appointments and key test results in a practical, simple way. The diary (A5 in size) contains 11 sections which are neatly divided and tabbed for ease of reference as follows: Your myeloma diary, Appointments, Blood tests and results, Treatment records, Complementary therapies record, Symptoms and side-effects record, Questions to ask your doctor /nurse, Key myeloma terms, Further information and useful organisations, About Myeloma UK and Your notes. PEER Network PEER Members are patients, family members and carers who are willing to share and communicate with others affected by myeloma who contact Myeloma UK and are seeking information, support and reassurance from someone who has been in or is currently in a similar situation. To order any of our free publications or for information about any of the support that we can offer, call our Myeloma Infoline on or from Ireland. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK and Ireland. From outside the UK and Ireland, call +44 (0) (charged at normal rate). Myeloma UK also provides information on conditions associated with myeloma; this includes information about AL amyloidosis, plasmacytoma, MGUS (Monoclonal Gammopathy of Undetermined Significance) and Waldenström s Macroglobulinaemia. 36

36 We need your help We rely almost entirely on voluntary donations and fundraising activities to fund our broad range of services from providing information and support, to improving standards of treatment and care through research, education, campaigning and raising awareness. That is why we need your help. We depend on the support and generous donations from people like you to provide these important services, which are available free to myeloma patients, their families and carers. A guide to how your donation will help others: 2 will ensure that another patient receives a booklet about myeloma 12 will fund an Information Pack for a newly diagnosed patient and their family 75 will pay for our quarterly newsletter, Myeloma Matters, to be sent to three people for a year 100 will enable us to provide a start-up grant to a new Myeloma Support Group 188 will pay to genotype one DNA sample 582 will fund a month s worth of information to be mailed out to patients, their families and carers 1,019 will pay for a Myeloma Nurse Specialist for a working week 35,000 will pay for one research nurse for a year All donations are greatly appreciated and allow us to continue our vital work. Myeloma Infoline: UK Ireland

37 How to donate You can make your donation online at over the phone by calling +44 (0) , or by posting a cheque or CAF voucher made payable to Myeloma UK to our office the address is on the back of this Infoguide. Gift Aid it Remember to let us know if you are a UK tax payer, so we can increase your gift by claiming the tax back from the Government. If you are a UK tax payer, Myeloma UK can claim Gift Aid on your donation. At present for every 1 that you donate we can claim 25p. This extra money comes from the Government, so it doesn t cost you any extra. There are other ways you can support Myeloma UK such as taking part in an organised event, or by fundraising for Myeloma UK in your local community. When so much about myeloma is beyond the control of the people that it affects, fundraising can be a rewarding and fun way of doing something positive. Contact the Fundraising Team on +44 (0) for more information or visit

38 Published by Myeloma UK Publication date: February 2007 Updated: June 2012 Review date: June 2014 Author: Maggie Lai, Myeloma UK Myeloma UK would like to thank Dr Paul Cockwell for his invaluable help and advice in the compilation of this Infoguide. All Myeloma UK publications are extensively reviewed by patients and healthcare professionals prior to publication.

39 Call our Myeloma Infoline on or from Ireland Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: +44 (0) Fax: +44 (0) Charity No. SC Myeloma Awareness Week June