Living well with myeloma Your Essential Guide Myeloma Infoguide Series

Transcription

1 Living well with myeloma Your Essential Guide Myeloma Infoguide Series Essentials

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

3 Contents 4 Introduction 6 What is myeloma? 9 Treatment for myeloma the basics 10 Emotional care 19 Your treatment and care 27 Coping with symptoms and side-effects 36 Looking after yourself 40 Complementary therapies 43 Carer concerns 48 Finance and travel insurance 53 Questions for your doctor/medical team 57 Medical terms explained 61 Further information and useful organisations 76 About Myeloma UK 78 Information available from Myeloma UK 80 We need your help Disclaimer: The information in this Infoguide is not meant to replace the advice of your medical team. They are the best people to ask if you have questions about your individual situation. This publication is intended for a UK audience. It therefore may not provide relevant or accurate information for a non-uk setting. Infoline:

4 Introduction This Infoguide is written for myeloma patients. It may also be helpful for their families and friends. It aims to: Help you understand more about myeloma and the impact it may have on your life Provide information on managing some of the challenges brought about by a diagnosis of myeloma Help you and your family cope with the effects of myeloma, its symptoms and complications 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. If you have recently been diagnosed with myeloma, our Infopack for newly diagnosed myeloma patients focuses on what you need to know following 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 Myeloma Your Essential Guide. Please contact Myeloma UK if you have not already received an Infopack for newly diagnosed myeloma patients or Myeloma Your Essential Guide. 4

5 For more information Myeloma UK provides a wide range of information covering all aspects of the treatment and management of myeloma. You will find a list of our publications at the back of this Essential Guide. To order your free copies contact Myeloma UK. This and further information is also available to read and download at / publications To talk to a Myeloma Information Specialist 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. Infoline:

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

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

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

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

10 Emotional care Whether you are a patient or a carer, it is likely that your emotions will change frequently following a diagnosis of myeloma. The importance of taking some time to look after your emotional wellbeing cannot be overstated. Coping with the diagnosis Being diagnosed with myeloma affects everyone differently. At first you might be overwhelmed, in shock or feel numb. Sometimes strong emotions may catch you unawares. It is important to understand that this is a natural reaction and part of coming to terms with a diagnosis of myeloma. Some people feel a sense of relief when they are diagnosed as it explains all the symptoms they have been experiencing. You might ask yourself Why me? and want to find something or someone to blame again this is completely natural. It may feel as if there is nothing you can do and that everything is out of your hands. Finding out all you can about myeloma and your treatment can help to combat these feelings. There are many things you can do for yourself that will improve your quality of life and this can be a positive focus for you. After the initial shock of being hit with the myeloma sledgehammer, keep positive, it is not the end of the road. Patient quote from The small things that make all the difference - see page

11 At first it may seem that being told you have myeloma changes everything, but it is possible for many things in your life to stay the same. Some changes may even turn out to be positive many myeloma patients say they feel closer to their loved ones and are able to focus more on the importance of family and friends, or that they have learned to reassess the priorities in their life. For some patients, one of the first questions they ask is Am I going to die and, if so, when? It can be difficult, if not impossible, to predict with any degree of certainty how well you will respond to treatment and how long you are likely to live. Myeloma is highly treatable in the majority of people but unfortunately there is currently no cure. However, many myeloma patients live with myeloma for many years, enjoying a good quality of life. Understandably, you may feel a great deal of fear, anger and frustration. Learning more about myeloma and your treatment options can help to ease some of these feelings. Those around you may well be feeling some of the same things you are feeling and talking together can often help. Sometimes keeping a diary or journal can help to clarify your thoughts and feelings and can also help to provide a useful record of your treatment. Order your free Patient Diary from Myeloma UK. Talking about myeloma The word cancer brings with it strong feelings and images. At first it may seem difficult to talk about a diagnosis of myeloma but talking can be very helpful in reducing fear and feelings of isolation. Talking things over with other people can help to clarify them in your own mind. Infoline:

12 Continue to talk about everyday things they are still important. You don t have to talk about myeloma all the time. The following are some examples of common thoughts that may stop you from having important conversations. Below each thought are some suggested ways of dealing with them. I feel uncomfortable talking about this. It can be difficult to bring something up if you are uncomfortable talking about it or you think that your listener might be embarrassed or uncomfortable. Simply saying you feel uncomfortable can help make it less of a problem. Try starting with a sentence such as I feel uncomfortable talking about this, but I think it is important that we do. If you talk about things, gradually you will become more used to discussing them and it will become easier. Talking about this upsets me/him/her. After a diagnosis of myeloma there are likely to be many potentially upsetting conversations. If a topic upsets you, decide whether it is important enough to accept the upset. Your family and friends will be upset because they are concerned for your wellbeing and that might be eased if they understand what is happening. The anticipation of upsetting someone or feeling upset can be worse than the discussion itself. There never seems to be a good time. There may never be a good time for difficult discussions, but if you put off having an important conversation you may feel that the issue is hanging over you, making it harder to relax. Setting aside time together to have a conversation can help make it happen, for example saying, Could we talk about 12

13 my upcoming treatment after dinner? Allow enough time to talk, and choose a place where you feel comfortable. Depression and anxiety Many patients, carers and families experience depression or anxiety at some stage. This can cause you to feel low, nervous or worried for a prolonged period, have difficulty sleeping, experience panic attacks, feel irritable or lose interest in usual activities. Coping with myeloma is very demanding psychologically and emotionally, whether you are a patient, carer or family member. Although sometimes you may feel optimistic, there may be other times when you feel anxious, afraid or depressed. These feelings are not a sign of weakness and you should not feel ashamed or guilty about them. It is very important to allow yourself to have off days. The unpredictability of myeloma, treatment side-effects and even just the feeling that life has become an endless doctor s appointment can sometimes trigger anxiety and depression. Furthermore, some of the symptoms of depression and anxiety can overlap with and exacerbate the symptoms of myeloma and the sideeffects of treatment, such as breathlessness, pain and fatigue. It is therefore important to be frank about how you are feeling and to seek help from your GP or doctor or nurse. There are several options for treatment, including counselling and drug treatments. Your doctor will know which are appropriate for your situation and can refer you to a counsellor and/ or prescribe an effective antidepressant treatment. Some patients and carers find that relaxation techniques and complementary therapies such as aromatherapy can help reduce anxiety. Infoline:

14 For more information see the Complementary therapies section on page 40. You may also find it helpful to have something to look forward to once your treatment is finished, such as a holiday or taking up a new hobby. Emotional support Emotional support is important in helping you to cope with myeloma. It is very easy for patients and family members to feel isolated, and strong emotions often make it difficult to discuss worries or fears. Talking to someone who understands what is happening can ease these feelings of isolation. Many myeloma patients find their specialist nurse is a good person to talk to. You can also call the Myeloma Infoline on or from Ireland for emotional support, practical advice and a listening ear. The Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from the UK and Ireland. You may find it helpful to seek psychological support from a trained counsellor or talk therapist. Counsellors help you to explore your feelings and experiences in a supportive and confidential environment. A counsellor does not give you advice but helps you to develop coping strategies and to find your own answers and/or solution to the problems you are facing. A particular form of talk therapy called cognitive behaviour therapy (CBT) aims to help you to cope with anxiety by identifying and challenging negative thought patterns. CBT works through the understanding that negative thoughts can lead to increased negative emotions and anxiety. By identifying if a negative thought is realistic or non-realistic and taking appropriate action to reduce its impact on your emotions (i.e. by getting more information from your doctor or re-focussing your thoughts), CBT can ease some of the emotional 14

15 burden of myeloma and may help to relieve some of the physical symptoms of anxiety, for example breathlessness, pain and nausea. Counselling or CBT may not always be available in your hospital, but your GP or doctor should be able to put you in touch with a registered counsellor or CBT practitioner in your area. Alternatively, you can contact the British Association for Counselling and Psychotherapy for a list. See the Further information and useful organisations section on page 61 for their contact details. Sexual relationships Sometimes sexual relationships change after a diagnosis of myeloma. You or your partner may feel less keen to have sex. There can be many reasons for this. You may feel too tired or physically unable to enjoy a full sexual relationship. Stress and anxiety can often cause a loss of sexual desire (libido) or you may feel that sex is no longer important. Many drugs can also reduce sexual desire. If a sexual relationship is important to you, talk to your partner about the way you feel, even though you may find it difficult to start the conversation. It is easy for people to feel rejected when a sexual relationship changes or ceases. Try to discuss with your partner what level of intimacy feels comfortable and in time you may gradually return to a more physical relationship. Don t be embarrassed to talk to your GP or doctor or nurse about problems with your sexual relationship. They are used to this sort of discussion, even if you are not, and they may be able to prescribe a treatment that can help. Telling other people Telling family members and friends that you have myeloma can be a daunting task, but Infoline:

16 letting those around you know about your diagnosis will help them to support you. Writing a list of people you want to tell immediately and those who can wait can help you organise your thoughts. Choose a quiet, private area with no distractions (switch off the television or radio) where you can sit down comfortably. Try to give information a bit at a time, checking that the listener understands what you have said. Some patients prefer to have a family member or friend tell other people. This is perfectly reasonable and means you don t have to keep telling your story if it upsets you. Most people will not have heard of myeloma and this can mean that whenever you tell someone about it you feel you have to explain everything about myeloma, its treatment and how it is affecting you and your family. You could suggest that the person calls the Myeloma Infoline on or from Ireland to find out more for themselves. Or you could give them a copy of the Myeloma UK leaflet Myeloma An Introduction to read, rather than having to explain everything yourself. You can order free copies of all of our information by calling the Myeloma Infoline on or from Ireland or ing askthenurse@ myeloma.org.uk. This information is also available to download at / publications Telling children The decision on what and when to tell your children or grandchildren about your myeloma is a very personal one. It may depend on the age of the children, your family circumstances and the impact of the treatment you will have. Sometimes a family may feel it is better to keep upsetting news 16

17 from a child if the treatment does not have any visible side-effects such as hair loss. However, generally you would be encouraged to tell children as they are very sensitive to changes in their surroundings and may start to ask questions for themselves. It is probably best for the children s parents to tell them about the diagnosis and treatment. If you are a patient and a parent with children and think it will be too upsetting for you, you may prefer your partner, parents or a close friend to tell them on your behalf. Try to tell them in an environment they are comfortable in. For example, if you often sit down together to watch television, use that time to tell them before turning the television on. Telling them when you are doing something you ordinarily do can lessen the stress it is important to try to keep to routines. It is important to put things in simple terms and to repeat key points. Pictures or drawings will help younger children to understand. Keeping them up-to-date, with as little or as much information as you see fit, will make sure the children feel involved and help to prevent feelings of exclusion. Give them time and the opportunity to ask questions or to say how they feel, but don t force them to talk about it if they don t want to. Remember to tell the staff at their school what is happening. Myeloma UK has developed a book to help explain what myeloma is to children. Kelsey and the Yellow Kite tells the story of a little girl called Kelsey whose dad gets myeloma. It explains what myeloma is in very simple terms. Order your copy by calling the Myeloma Infoline on or ing myelomauk@myeloma.org.uk. Infoline:

18 Myeloma Support Groups Myeloma Support Groups can provide an informal and comfortable atmosphere in which members can share stories and information. They are usually a very supportive group of people who are facing the same things that you are. Some Myeloma Support Groups are run by patients and family members, others by healthcare workers or professional group facilitators. Call the Myeloma Infoline or ask your doctor or nurse for the details of Myeloma Support Groups near you. You can also visit uk/supportgroups for more information and to find your local Myeloma Support Group. If there is not a myeloma-specific group close to you, there may be a general cancer/ haematology group that meets locally. If you are interested in setting up a Myeloma Support Group, or to get details of existing groups, contact Myeloma UK on Patient and Family Myeloma Infodays Myeloma UK holds regular Patient and Family Myeloma Infodays. 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 or visit / infodays 18

19 Your treatment and care Your myeloma treatment and care will be coordinated by a medical team led by a consultant haematologist. This medical team (also called the multidisciplinary team or MDT) should involve a range of healthcare professionals and may include a myeloma or haematology nurse specialist, a radiotherapist, an orthopaedic surgeon, a counsellor, a dietician, a physiotherapist and palliative care staff. Your relationship with your medical 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 available will help you to communicate more easily with your medical team and help you to make informed decisions about your treatment and care, should you wish to do so. Any treatment decision should ideally be reached together. Sometimes medical professionals forget that most patients do not understand medical jargon. You can request a Myeloma A Z from Myeloma UK which may help with understanding some of the more common technical terms. If you do not understand something at one of your hospital appointments, 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 useful to receive written information they can take away and read at home. Infoline:

20 No question is silly. Ask all the questions you need to in your consultations. Patient quote from The small things that make all the difference Remember that there are likely to be uncertainties and that your doctor may not be able to answer specific questions about the future. For example, you may want to know how successful your treatment is likely to be before you decide to have it. While your doctor will be able to give you average figures, they will not be able to predict exactly how you are going to respond to the treatment. Tips Carry paper and a pen with you and write down questions when they occur to you Give your doctor a list of the questions you have written down at the beginning of your consultation Consider taking someone with you to your 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 medicines you bought over the counter (without a prescription) or any supplements or complementary therapies Tell your doctor if you are experiencing any side-effects or new symptoms 20

21 Guidelines on the diagnosis and management of myeloma The UK Myeloma Forum, an organisation of healthcare professionals committed to improving the outlook for myeloma patients, produces Guidelines on the diagnosis, treatment and management of myeloma. These Guidelines aim to improve the care of myeloma patients in the UK by setting standards for treatment that myeloma patients should receive. Doctors and other staff involved in treating myeloma patients should be familiar with these Guidelines and should use them to direct the way myeloma is treated and managed. The Guidelines include recommendations that, as a myeloma patient, you should be able to expect: To be encouraged to ask questions. If you do not want to do this during the consultation you should be given an opportunity to come back at a later date To be given written information about myeloma and the treatment options available to you To be given the contact details of key members of your medical team and information on how to contact them for advice between appointments or out-of-hours That your treatment and care plan should be explained to you in a way that you can understand To be given contact details of independent sources of information and support such as Myeloma UK and information about websites that carry reliable and up-todate information To be given information about Myeloma Support Groups That information will be made available to you on state benefits e.g. Personal Independence Payment, Disability Living Allowance or Carers Allowance Infoline:

22 More than one opinion Myeloma is a relatively rare and complex cancer and choosing the right treatment can sometimes 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 diagnosis is correct, that the treatment plan is appropriate for your situation and that all other options have been considered. Consultants are normally happy to arrange for another opinion and you should not feel that asking for one will offend them or the medical team. You may, however, find it easier to approach your GP about this. Sometimes patients have difficulty in communicating with their consultant and want the chance to talk to another one. In this circumstance, you might ask to see a different consultant in the same hospital or to have another opinion at another hospital. While you do not have an automatic right to more than one opinion, this will usually be available, and if it is not, there should be a justifiable reason for refusing your request. Making a complaint If you are unhappy with the treatment and care you are receiving, then you should discuss it initially with your doctor. You may feel uncomfortable doing this, but your doctor cannot deal with your concern if they do not know about it. If you feel you are not getting a satisfactory answer from your doctor and feel you have grounds for a complaint, every NHS organisation has a complaints procedure. If you want to complain about an NHS service such as a hospital or GP ask the service for a copy of their complaints procedure which will explain what is required of you and how your complaint will be dealt with. 22

23 Medical professionals The following overview should give you an idea of who s who in your hospital/health centre: General practitioner (GP or family doctor) Your GP is responsible for all aspects of your medical care at home and can arrange visits from other professionals such as community nurses and Macmillan nurses. Your GP should remain involved in your care and will be kept informed about your treatment and progress through letters from your hospital doctor. Consultant haematologist Your consultant haematologist will be responsible for leading your care throughout your treatment for myeloma. They will plan your treatment in conjunction with other members of the multidisciplinary team and will involve you in all decisions relating to your care. Specialist registrars or registrars Specialist registrars are doctors training to specialise in one area of medicine (such as haematology) and are the most senior members of the medical team below the consultant. You may see a registrar instead of your consultant for some of your clinic visits, but your treatment will follow the plan as agreed with the consultant. Hospital nurses Nurses will be caring for you throughout the different stages of your treatment. They play a central role in the delivery of treatment, overall care and support while you are in hospital. Nurses can provide information about other services available to you such as Myeloma Support Groups, counselling and dieticians. They can help you communicate effectively with your medical team and will be your advocate in all matters. Infoline:

24 Haematology/myeloma nurse specialists These are senior nurses who have many years of experience and have special training in the area of haematology and/or myeloma. They work mainly in hospitals, but also support patients at home. Community nurses These nurses are specialists in caring for people in their own home. They are usually based in health centres and may be available 24-hours a day. Your GP will contact them on your behalf if you need nursing support at home. Palliative care doctors and nurses Palliative care is a type of care typically given from diagnosis onwards that helps to manage and alleviate the symptoms and complications of myeloma and the side-effects of its treatment. Palliative care should not be confused with end of life care, although the palliative care team will play an important role in this setting of care. 24

25 Counsellors Counsellors offer you the chance to explore your feelings and experiences in a supportive, confidential environment. Counselling may not always be available in your hospital but your doctor or nurse should be able to put you in touch with a professionally trained counsellor in your area. Dieticians The dietician s role is to help you eat as healthily as possible. You may be referred to a dietician if you are having trouble eating or need to put on or lose weight. Physiotherapists Physiotherapists can help you to keep mobile by doing stretching and other exercises with you. Your doctor may refer you to a physiotherapist, particularly if you need to build muscle strength. Occupational therapists Occupational therapists are specialists in helping people who have health problems to manage their daily activities at home and in their workplace. They can arrange an assessment of your home and give advice on the use of assistive devices, as well as recommending lifestyle adaptations. Medical institutions The following overview should give you an idea of the various medical institutions you may come across: Cancer centres These are centres specialising in the treatment of cancer patients, where specialist treatments are available and people with less common cancers may be treated. They are usually based in large general hospitals or teaching hospitals. The staff working in these centres are often also involved in research. Infoline:

26 District general hospital/ haematology unit These are local hospitals dealing with general medicine, which have some cancer services available. They will generally have a haematology department and a consultant haematologist who will oversee your treatment and care. Private hospital Private hospitals are used by patients who have private health insurance with companies such as BUPA. They can also be used by NHS patients who wish to pay for a particular drug, test or procedure. Consultants sometimes work in both NHS and private hospitals. Hospice Hospices provide supportive and palliative care to patients who need respite care, those who are recovering after treatment and those who are in the final stages of life. They are often run by charities. Help the Hospices and Marie Curie Cancer Care have more information about hospice services in your area. Contact details are in the Further information and useful organisations section on page

27 Coping with symptoms and side-effects The terms symptoms and side-effects refer to different things. Throughout the information provided by Myeloma UK, the term symptoms refers to the problems you experience as a direct result of the myeloma, while side-effects refers to the problems you experience as a result of the treatment for myeloma. Sometimes, however, there is an overlap between the two. This section deals with both the symptoms of myeloma and the potential side-effects of its treatment and gives practical information on how to prevent, treat or manage them. Pain There are two main types of pain in myeloma: pain caused by bone damage and pain caused by peripheral neuropathy. Bone pain Bone pain is a common problem for myeloma patients. Myeloma bone disease occurs because the myeloma cells in the bone marrow affect the surrounding bone, causing bone to be broken down faster than it can be repaired. The extent of myeloma bone disease varies considerably from patient to patient. It most often occurs in the middle or lower back, the hips and the rib cage. Specific drugs called bisphosphonates can be used to help prevent further bone damage and pain-killers can be given to alleviate ongoing pain. For more information see the Myeloma Bone Disease and Bisphosphonates Infoguide from Myeloma UK. Infoline:

28 Peripheral neuropathy Peripheral neuropathy is the term used to describe damage to the nerves that make up the peripheral nervous system. This is a fairly common side-effect of certain drugs such as thalidomide and bortezomib (Velcade ). The nerves most commonly affected are those of the hands and feet and this causes symptoms such as altered sensation, tingling, numbness, or pain (also called neuropathic pain). There is no standard treatment for peripheral neuropathy so an individual approach is used to try and control its symptoms. This may include neuropathic pain relieving medication such as amitriptyline or gabapentin, vitamin supplements and complementary therapies. For more information see the Peripheral neuropathy Infosheet from Myeloma UK. Tips for managing pain: Take pain-killers regularly as prescribed. If you allow the pain to take hold before taking your pain-killers, they won t be as effective If you are taking the painkillers as prescribed, but are finding they are not effective, tell your doctor or nurse. There are many types of pain-killers available and it is often a case of trial and error to find the best pain treatment for you Avoid non-steroidal antiinflammatory drugs (NSAIDs) such as ibuprofen and diclofenac (Voltarol ) as they can damage the kidneys Be honest with your doctor or nurse about any pain you have and remember that pain is subjective and very individual. What is bearable in one person may be intolerable in another person, even when the cause of the pain is similar. You should not feel you have to put a brave face on it remember they are there to help you 28

29 Describe your pain as accurately as you can, i.e. dull and aching, piercing, transient or constant Learn relaxation, meditation, or visualisation techniques. A combination of these can be helpful in relieving pain. However, they need to be practised regularly in order to get maximum benefit Try to reduce your anxiety levels anxiety and stress can make pain worse. Try to find time to talk about your fears and worries with people who are close to you or with your doctor Massage may help with relaxation and pain, but make sure it is gentle to avoid further discomfort or damage to your bones. Only use an experienced massage therapist and explain your situation to them Find something to take your mind off the pain watching television, a favourite film, listening to music or chatting to a friend won t make your pain go away but it can distract your attention from it Make use of heat and cold hot water bottles and ice packs can be effective pain relievers. Wrap them in a towel before placing them onto the skin. They may only give short-term relief and you may need to alternate between warm and cold Make sure you are sitting comfortably the way you sit or lie can affect your pain. Try using special v-shaped pillows to help you get more comfortable when sitting in bed If your pain is not being controlled by your prescribed pain medication, or with the addition of any of the above, ask your doctor or nurse for a referral to a pain specialist who will be able to adjust your pain medication for a better response. For more information see the Pain and myeloma Infoguide from Myeloma UK. Infoline:

30 Fatigue Fatigue or extreme ongoing tiredness caused by myeloma and/or its treatment is a very common problem for myeloma patients. It can leave you feeling too exhausted to do the things that matter to you. It can even make it difficult to think straight and leave you feeling that you will never get better. Fatigue may be caused or made worse by many things, including anaemia (low red blood cell count), poor nutrition, pain, drugs used to treat myeloma, anxiety and depression. There are a number of things that you can do to help cope with fatigue: Make sure you are eating a well-balanced diet Ask your doctor for a referral to a dietician if you are having trouble eating Make getting enough sleep a priority and get into a routine going to bed and getting up at the same time every day Take gentle exercise every day this can actually help to improve your energy levels Allow yourself rest periods during the day Know how naps affect you do they help or do you feel worse afterwards? For more information see the Fatigue and myeloma Infoguide from Myeloma UK. Nausea and vomiting Nausea and vomiting are two of the main side-effects of some myeloma treatments. Although often talked about as being one and the same, vomiting is in fact a separate side-effect that may or may not occur in conjunction with nausea. Many myeloma patients find these side-effects very upsetting but there are things that can be done to control them. Anti-sickness (anti-emetic) drugs can be used to prevent and control both nausea and vomiting. If you experience 30

31 nausea or vomiting when you are on treatment it is important that you take your anti-emetic medications regularly and do not wait until you feel sick, as the drugs will work better this way. There are several kinds available, and if you find that the one you have been given is not effective, ask to try a different one. Sometimes you may feel sick before having your treatment, especially if treatment has previously made you sick. Ask your doctor or nurse if it is ok to take your anti-sickness treatment before your myeloma treatment to help avoid this. Strong smells may make you feel sick try to avoid cooking foods like curries and keep the window open a little during food preparation. If hospital smells make you feel sick, try putting some light perfume onto a handkerchief that you can use to help mask the smell lavender is a soothing scent. Try to take your mind off thinking about sickness talk to people, watch a film or listen to soothing music to distract yourself. Fresh air may also help calm nausea try sitting near an open window or, if it is warm enough, sit outside. Relaxing breathing exercises or lying down in a darkened room may help to reduce feelings of nausea. It is important to keep drinking as vomiting can dehydrate you. Allow your stomach to rest after vomiting then sip cool drinks such as still or sparkling water or fizzy juice drinks. These will also help freshen up your mouth. If vomiting is severe, fluid can be replaced by special preparations available through your GP or from a chemist. Tell your doctor or nurse if your nausea and/or vomiting is not getting better. Hair loss/thinning Hair loss is common with some kinds of chemotherapy. Not all chemotherapy drugs cause hair loss and different myeloma patients may be affected in different ways by the same drug. Infoline:

32 With the chemotherapy drugs used to treat myeloma, you may just experience some thinning of the hair, rather than losing it all. If you do lose some or all of your hair, remember that it will grow back once your treatment has finished. When your hair starts to grow back it is often very fine, but you will probably have a full head of hair after 3 6 months. You may also find that your new hair is curlier or finer than it was before and it may be a slightly different colour. Having your hair cut short before treatment can keep it looking better during loss and re-growth. Some patients find soft hats, headscarves or wigs useful. Many hospitals have a wig fitting service available, so if you think you may want a wig, ask your nurse about it. It may be easier to get a wig while you are in hospital receiving treatment. Don t be embarrassed to talk to your nurse about this, he or she will be quite used to discussing such things. Mouth problems Some chemotherapy drugs can cause your mouth to feel sore (mucositis), and sometimes small ulcers can develop. As well as being painful, they may also become infected. Your mouth may become so sore that your eating is affected. Your doctor will be able to help with medicines to treat or prevent these ulcers, or to suggest a special mouthwash. You can also help yourself by making sure you clean your teeth gently but regularly, using a soft toothbrush. Also try to avoid things that irritate your mouth, such as spicy, salty or tangy foods. You may also notice a change in your sense of taste and find that some foods taste sweet, salty or metallic this can be especially true after high-dose therapy and a stem cell transplant (HDT-SCT). Your sense of taste should return to normal after treatment has stopped. 32

33 Tips for when you have a sore or dry mouth: Avoid food that sticks to the roof of your mouth such as chocolate, peanut butter or pastry Avoid mouthwashes that contain alcohol Drink cold drinks to soothe a sore mouth Moisten your food with lots of gravy or sauces Try drinking through a straw Try sucking ice cubes or ice lollies Try using boiled sweets or chewing gum to stimulate saliva production Use lip balm for dry lips Ensure food smells appealing by seasoning it with sauces, herbs or marinades Eat boiled sweets as these leave a lasting pleasant taste in your mouth Loss of appetite Your appetite may change over the course of your myeloma and treatment. Sometimes you may feel that you simply cannot face food. If this happens, try not to be discouraged by the fact that you are not hungry and just eat when you can. Eating little and often may help, or try planning meals around when you generally feel most hungry. For example, have a large breakfast and a smaller evening meal if you are always hungry in the morning. Always drink plenty of fluids, especially on days when you don t feel like eating. If your loss of appetite does not improve after a couple of weeks, or you lose a lot of weight, tell your doctor or nurse. They will be able to refer you to a dietician who can offer advice on how to eat a balanced diet and may recommend special build-up foods and drinks. For more information see the Diet and nutrition and Mouthcare Infosheet from Myeloma UK. Infoline:

34 Avoiding infection Infections are more common in myeloma patients because myeloma and its treatments can reduce your healthy white blood cell count, which affects your ability to fight infection. However, you can make some changes that might reduce your chance of infection. This is particularly important if you have recently undergone HDT-SCT, or if your white blood cell count is particularly low. One of the best things you can do to reduce your risk of infection is to wash your hands regularly. Infection can spread via the hand to mouth route. Washing your hands regularly and avoiding touching your mouth, nose and eyes can reduce your risk of infection. Consider washing your hands whenever you return home after being out, especially after using public transport or visiting other busy places like the supermarket. Try carrying alcohol hand gel (available from the chemist) when you re out and about to make it easier to keep your hands clean. Always wash your hands with warm water and soap after using the bathroom, and before handling and eating food. Try to avoid being in enclosed spaces like buses or trains when they are very busy. Ask your friends not to visit if they or anybody in their household have colds, flu, stomach bugs or other infections such as chickenpox and shingles. All food should be as fresh as possible, fruit should be washed and meat should be cooked thoroughly to avoid picking up a stomach bug. 34

35 Signs of infection: Raised temperature (above 38 degrees centigrade) Feeling generally unwell or feverish Shivering Rash Cough or sore throat Diarrhoea Pain, redness or swelling around a cut or wound or around the entry point of your HICKMAN catheter or PICC line if you have one If you develop signs of an infection, it is important that you contact your doctor or the hospital immediately, especially if you are feeling unwell/shivering, as it may be important to start antibiotics as soon as possible. Ask your doctor how to contact your medical team out-ofhours. A course of oral (tablet) antibiotics may resolve the infection, but if it is persistent, you may need an intravenous infusion of antibiotics given in hospital. For more information, see the Infection and myeloma Infosheet from Myeloma UK. Infoline:

36 Looking after yourself Myeloma affects every myeloma patient differently. Some or all of the sections below may be relevant to you, depending on any symptoms/side-effects you experience. Remember to discuss any changes to your diet, additional supplements or complementary therapies with your doctor. Diet and fluids There is no evidence to suggest that a specific diet can help to treat myeloma or prevent it from relapsing. Myeloma patients should therefore follow the same basic principles of healthy eating that apply to us all. Eating a healthy and balanced diet will help to maintain your muscles and strength, increase your energy levels and may help recovery after treatment. A balanced diet is also rich in essential vitamins and minerals and can help the immune system to function more effectively. A healthy diet includes: Lots of fruit and vegetables High fibre wholewheat breads, cereals, rice and pasta Lean meat and fish, such as chicken, turkey, salmon, tuna and mackerel or a wellbalanced vegetarian diet However, if you have myeloma, there may be periods when your diet may need to change. For example, you may need to alter your diet if your white cell count is low (your doctor may say that you are neutropenic ) because you are at increased risk of picking up an infection, and some foods may increase your risk of infection. If you require a special diet your doctor will discuss this with you. If you find eating difficult due to a poor appetite, you may find it 36

37 useful to ask your doctor or nurse for a referral to a dietician who will be able to help you focus your diet on calorie-rich foods. You may also find nutritional drinks and shakes such as Complan, Ensure, or Fortijuce useful to supplement your diet. You do not need to avoid foods containing calcium or protein as this will not affect blood calcium or paraprotein levels. Drinks containing caffeine, such as tea, coffee and cola drinks, can be part of a balanced diet, if used in moderation. Similarly, if you drink alcohol, try to drink no more than the recommended daily amount. If you are on bortezomib it is recommended you avoid drinking green tea or taking green tea supplements as this may interfere with the activity of bortezomib on the myeloma cells. Vitamin C has also been found to block the action of bortezomib and it is therefore advisable to avoid taking vitamin C supplements when on bortezomib. Kidney problems can occur in myeloma patients for a variety of reasons. They can be caused by the myeloma itself and sometimes the drugs used to treat myeloma can also harm the kidneys. A good way to protect your kidneys from damage is to drink between two and three litres (four to six pints) of water each day. This can be quite difficult to do, so try to drink little and often throughout the day so that it becomes a habit. Diet supplements Some myeloma patients take a general vitamin supplement if they feel they may not be getting enough vitamins and nutrients from their diet. You should avoid taking vitamin C in large doses (i.e. more than 500mg a day), as it will add to the acidity of your urine, which can damage the kidneys. Supplements such as cod liver oil and evening primrose oil are probably safe to take, but it is Infoline:

38 best to avoid any supplements or remedies that claim to boost the immune system (e.g. Echinacea) as they may have an adverse effect on your myeloma. Discuss with your doctor before you take any vitamins or other supplements in case they interfere with, or directly affect your myeloma or your treatment. Exercise Exercise is part of many people s daily life whether as a hobby, something they do with family and friends or at a competitive level. Exercise helps to keep your body fit and strong and can boost mental and physical feelings of wellbeing. The most important thing for myeloma patients to think about when planning any sort of exercise is their bones. Myeloma patients often have weakened bones and should avoid contact sports and more adventurous sports in case of injury. Improving your muscle strength is important as this will reduce the pressure on your bones. If you attend a gym, explain your situation to an instructor and ask for some advice on exercises to strengthen your muscles. Gentle forms of exercise such as walking, swimming, cycling, gentle aqua-aerobics, gentle gym work, yoga and tai chi are good for overall health and for muscle strengthening. Due to the specific problems associated with myeloma, you should always seek the advice of a physiotherapist or qualified sports trainer before starting an exercise programme. Warm-up and cool-down exercises before and after are important as they can help to avoid muscle strains. If you have not exercised for a while, start with small amounts to build up your stamina. See how you feel after exercising (both immediately and a day or so later) and only do what feels comfortable. You may have less energy during and after treatment and feel frustrated that you cannot do as 38

39 much as you could before. It is quite normal to feel more tired after exercise and it may help you to sleep. However it is very important to stop what you are doing immediately if you feel any pain. For more information, see the Exercise and myeloma and Exercises for myeloma patients Infosheet from Myeloma UK. Infoline:

40 Complementary therapies Some myeloma patients find that complementary therapies can help alleviate symptoms and side-effects such as nausea and pain. Complementary therapies should not be confused with alternative therapies, which are used instead of conventional treatment. Complementary therapies can be used in addition to the treatments prescribed by doctors. However, it is very important that patients report the use of any complementary therapies to their doctor in order to enable them to discuss any possible harmful effects. Using complementary therapies can give you a feeling of control over your myeloma and its treatment, although there is no medical evidence that they have any effect on the cancer itself. Carers may also find therapies aimed at reducing tension and promoting relaxation useful. There are many different types of complementary therapy. Some of the more common types are listed below. 40 Acupuncture is part of traditional Chinese medicine and uses the balance of the body s own life force to restore wellbeing. Practitioners of Chinese medicine believe that the body has a system of Chi (life force) which becomes unbalanced when someone is ill. Acupuncture needles are applied to areas where this flow has been blocked in order to restore balance and health. Practitioners believe that acupuncture can be used to alleviate pain and sickness and to relax muscles. Aromatherapy is the use of essential oils (concentrated plant oils) and massage to reduce stress and improve symptoms of anxiety. The scent and properties of different oils vary and are believed to produce different results. Therefore, a variety of oils are often used together. It may be best to avoid using oils on the skin when you are having

41 chemotherapy or radiotherapy as the skin can become very sensitive, but the perfume of lightly scented candles may help with nausea and aid relaxation. Massage is used to relieve muscle pain and tension and can be both therapeutic and relaxing. A trained masseuse will gently manipulate problem areas to ease tightened muscles and relieve pain. Remember to tell the masseuse that you are a myeloma patient and that forceful massage could damage your bones. Meditation is a relaxing mental exercise which can reduce anxiety, stress and pain. Breathing techniques and concentration are used to relax each part of the body in turn. Meditation may be used to aid sleep and relieve tension. Mindfulness is a type of meditation which encourages you to acknowledge and accept any anxious or negative thoughts you may have but not be swept away by them. With daily practice, this can lead you to identify any unhelpful thought patterns you may fall into. The realisation that such thoughts do not have to control you may help to reduce stress and anxiety. Mindfulness usually consists of meditation techniques focussing on awareness of your breath, body and surroundings. Reflexology is a specialised form of therapeutic foot massage based on the theory that different areas of the foot represent, and are connected with, the body s internal organs. Pressure is applied to different points on the sole of the foot to help relieve pain and sickness. Some patients find this type of massage very relaxing. Reiki is an ancient form of healing based on the idea of using the body s own energy or life force to restore a sense of balance or calmness, release tension and reduce pain. The reiki healer will channel energy through their hands to various parts of your body. Although he or she will not actually touch you, you may feel Infoline:

42 sensations of heat, cold, vibration and tingling on the skin. You can be fully dressed while receiving reiki healing. Visualisation involves the use of mental imagery while you are in a state of meditation or relaxation. It may be used as a relaxation tool or to reduce stress and anxiety. Picturing yourself within a peaceful scene can encourage you to feel more relaxed. Other forms of visualisation are more closely linked to the symptoms of illness; some patients imagine their immune system destroying the myeloma cells or visualise their blood counts coming up. If you are thinking of using any of these therapies, you should look for a qualified, registered therapist who has experience of treating cancer patients. The Institute for Complementary Medicine can be contacted for a list of registered practitioners in your area. Their contact details are in the Further information and useful organisations section on page 61 or simply ask your therapist about their qualifications and previous experience. Many cancer centres offer complementary therapies (but not always free of charge) or can give you contact details of services available locally. Again, it is important that you always tell your doctor about any complementary therapies you are using. 42

43 Carer concerns A diagnosis of myeloma will affect more than just the patient. Caring for someone with myeloma can be challenging and unpredictable and ensuring that carers get the support they need is critically important. Being told someone you know has myeloma When you are told that a relative or friend has myeloma you may feel shocked, upset and worried because the future is now uncertain. You may feel you need to put on a brave face and disguise your feelings, but being honest about how you feel will help future communication between you and the patient. You may not think of yourself as a carer because caring for someone you love is second nature, or a family duty. However, in many ways becoming a carer is like a new job; it may require learning new skills, dealing with a change in established roles, and tackling demanding tasks. You will probably have a lot of questions ask the patient s healthcare team if you can talk to them about what to expect, or call the Myeloma Infoline on or from Ireland to talk to a Myeloma Information Specialist. Getting information Although most of the attention from medical staff is focused on the patient, remember that you are an important part of the team. You can ask questions about the things you want to know. Sometimes there are questions the patient might not want to ask, or to know the answer to. These may be questions about what is likely to happen, or what plans to make. It may be difficult to ask these questions in front Infoline:

44 of them. If the patient has given their permission, ask the doctor or nurse if it would be possible to speak to them on your own. Of course this can sometimes be reversed, with the patient wanting to ask questions that they are worried might upset you. Try to discuss things together before seeing the doctor or nurse so you know which questions you are going to ask. Communicating Don t feel that you have to talk about everything immediately and remember that often listening is as important as talking. Taking time to really listen to someone, without feeling you have to find solutions to any problems or worries can be very valuable. The following are some examples of common thoughts that may stop you from having important conversations. Below each thought are some ways of dealing with them. I don t know what to say. Often there is no right or wrong thing to say. You don t need to have all the answers, simply listening to someone talk about their fears or worries can help ease them. Just letting the patient know you care enough to listen is important. I don t want to open the floodgates. Often we feel a need to stay in control by avoiding upsetting or difficult subjects. Keep in mind though that strong feelings are there anyway, and it may be that the patient needs an opportunity now and then to let go. Being there with a caring approach will help. I hate it when he/she goes all quiet. Don t be tempted to fill silences with reflex chatter give each other time to think. Remember, not all communication is verbal; holding hands or placing your hand on someone can say as 44

45 much as you need to. If you feel someone is silent because they are upset you can gently ask them questions. For example, What are you thinking about? may help to get them talking again. If you feel they would like to be alone then just ask, Would you like some time on your own now? Getting help During treatment and recovery, myeloma patients will not be able to do as much as they did before. You may find you have to take on additional responsibilities or do things you rarely did before. Don t let yourself be overwhelmed by all of this healthcare professionals, relatives, friends and many voluntary organisations are there to help you. Your GP can be a useful source of information and support and can put you in touch with services available in your area such as District Nurses, Macmillan or Marie Curie nurses, home helps, hospice respite care and counsellors. The Further information and useful organisations section on page 61 of this guide contains the contact details of helpful organisations. Try to take people up on their offers of help; this may also help them to feel better as they are able to do something for you. Sometimes people may want to help but may not understand the extent of what you do as a carer or may feel that offering help implies you are not doing a good job. Though you may find it difficult to ask for help, doing so can make others feel useful and reduce the demands on you. Preparing food It can be very frustrating watching someone not eating properly, especially if you have spent a lot of time and effort carefully preparing a suitable meal. It is important to understand that some of the side-effects of myeloma treatment can affect the patient s appetite and even Infoline:

46 change their sense of taste. If the patient is having severe sideeffects from treatment, they may not be able to eat some days or may no longer enjoy meals they used to love. Try not to take it personally if they don t eat the food you cook. It is unlikely to be a comment on the quality of your cooking. My sense of taste went very quickly so I laced everything with any type of sauce, which meant I could at least taste something HP sauce, tomato ketchup, salad cream you name it. Patient quote from The small things that make all the difference Gently encourage them to eat but don t push them. Have pre-prepared snacks to hand for times when they feel like eating. Fresh and dried fruit and nuts, soups, breakfast cereals, yoghurt, dips, sandwiches and raw vegetables are easy to prepare and store. Looking after yourself Taking a break from caring can help you think things through and relieve stress and tiredness. Even taking a few hours off during the day and getting out of the house can make a huge difference to the way you feel and the amount of energy you have. Take advantage of times when the patient is away from home. It may help to organise a rota of visitors to keep them busy, if they are up to it. It is easy to feel that you have to be positive all the time and hide negative feelings and anger. 46

47 Thinking positively can help you face the challenges of myeloma, but don t feel that you have to be upbeat all the time. Giving yourself a day off to feel sad does not mean that you have lost control or that you will not feel positive again. If you feel things are getting on top of you, try to find the time to talk to someone such as your GP, specialist nurse or call the Myeloma Infoline on or from Ireland. Remember you cannot look after anyone else if you do not also look after yourself. Tips Let other people help Learn about myeloma and its treatment Look after yourself eat well, get enough sleep and visit your GP if you need to Take a day or a few hours off when you need to Ask your GP about nurse visits at home For more information, see the Infopack for carers of myeloma patients from Myeloma UK. Infoline:

48 Finance and travel insurance It can put a strain on your finances if you have had to give up work (temporarily or permanently) as a result of your myeloma, or are spending a lot of money on hospital travel and medication. Welfare benefits There are a number of different benefits and tax credits you may be able to claim: If you are aged you may be able to claim Personal Independence Payment (or Disability Living Allowance in Northern Ireland) If you are 65 or over and you have care needs, you may be able to claim Attendance Allowance If you are unable to work, you may be able to claim Statutory Sick Pay or Employment and Support Allowance If you care for someone who has myeloma, you may be able to claim Carer s Allowance If you work, you may be entitled to Working Tax Credit Personal Independence Payment (PIP) is for people aged who are very ill or disabled and have trouble getting around or need help with day- to-day living. It will eventually replace Disability Living Allowance. Disability Living Allowance (DLA) is gradually being replaced by Personal Independence Payment. DLA is for disabled people under 65. To get DLA, you must have personal care needs or difficulty with walking because of either a physical or mental disability. Since June 2013, in England, Wales and Scotland, it has not been possible to make a new claim for Disability Living Allowance unless you are under 16; instead, claim for PIP. If you are already claiming DLA, you will continue to receive it until the Department for Work and Pensions invites you to apply for PIP. 48

49 Attendance Allowance (AA) is paid to people over 65 years old and who have difficulty with personal care (e.g. washing, dressing, going to the toilet) and need help. AA does not cover mobility problems. This allowance is tax-free and not means-tested. There are two different rates depending on how much help and supervision is required. Statutory Sick Pay (SSP) can be claimed from your employer if you are employed, earn at least 112 a week before tax and are unable to work because of ill health or disability then your employer should pay you SSP. SSP is paid at a fixed rate of a week. There is a standard rate of SSP and it is paid for a maximum of 28 weeks. If you have contractual/ occupational sick pay in the terms of your employment then you may be entitled to this as well as SSP. Employment and Support Allowance (ESA) is for people who cannot work due to illness or disability and aren t getting Statutory Sick Pay. To claim ESA you will usually have to have various tests to confirm that you have limited capability for work. Carer s Allowance - if you are caring for someone for at least 35 hours per week you may be entitled to Carer s Allowance. The person you care for must be receiving a disability benefit e.g. Attendance Allowance or Personal Independence Payment (PIP). Claiming Carer s Allowance may be affected if you claim other benefits, allowances or pensions. However, you are still encouraged to claim the allowance as you may still be eligible. Universal Credit has been rolled out gradually since 2013 and will eventually replace six types of benefits (including Housing Benefit and Working Tax Credit) in England, Scotland and Wales. Infoline:

50 It will be introduced into Northern Ireland shortly. If you are already claiming benefits, the Department of Work and Pensions will contact you when it is time for you to move to Universal Credit. Working Tax Credit can be claimed if you are disabled and work at least 16 hours a week. Working Tax Credit is paid by the HM Revenue and Customs, and depends on your income. It is paid in addition to benefits for the extra costs of disability such as Personal Independence Payment. However, Working Tax Credit may affect other income related benefits you get, for example, Housing Benefit. You may be able to get other benefits as well, depending on your circumstances. You may be able to get benefits for being on a low income like Housing Benefit or benefits because you have children. You may also be able to claim Council Tax Reduction to help with your council tax. Even if you cannot claim any benefits, you may be able to get national insurance credits if you are unable to work or you are a carer. The process of claiming benefits can be time-consuming and sometimes confusing, but the hospital may have support nurses or social workers who are able to help you, or your local Citizens Advice Bureau can help. Macmillan Cancer Support also have a Benefits Advisor contact details can be found in the Further information and useful organisations section on page 61. Remember that you can apply for benefits at any stage of your myeloma and that you can appeal or re-apply later if an application is not successful. For more information, see the Managing your Finances - Benefits Infosheet from Myeloma UK. 50

51 Prescription charges Currently all prescriptions for cancer patients in Wales, Scotland and Northern Ireland are free of charge. In England, prescriptions are free for cancer patients on the production of an exemption certificate which can be obtained from your GP surgery or hospital clinic. Mortgages If you do not have mortgage payment protection insurance and are having financial difficulties you should inform your mortgage lender as soon as possible. It is sometimes possible to suspend payments for a short time, pay only the interest part of the mortgage or extend the term of your mortgage. In some cases, it may be possible to get cash released from your mortgage if your house is worth considerably more than your outstanding mortgage. Speak with your bank or an independent financial advisor about these options. Making a Will One of the things you should think about is making a Will, if you don t already have one, to ensure those you love are looked after in the event of your death. If you don t make a Will, your estate may not go to the people you intended to benefit. If you create a homemade Will you may forget to include some important details. Therefore it is advisable to contact a solicitor who will be able to help you write your Will and ensure that nothing is omitted. Some of the things you need to think about are who you would like to pass your assets on to, specific funeral arrangements and appointing legal guardians if you have children under 18. One other significant matter is identifying executors, those that deal with your estate in the event of your death. You may also want to leave a gift to your favourite cause by way of a legacy. November is National Will Aid month. Will Aid is a partnership Infoline:

52 between the UK legal profession and nine charities. Every November, participating solicitors waive their fee for writing a basic Will. Instead, they invite their clients to make a donation to charity. For more information go to Once your Will has been written it is important that it is kept in a safe place and that you review it regularly in case any of your circumstances change. Holidays and travel insurance Obtaining travel insurance when you have myeloma is very important. In some cases myeloma patients can find it difficult to get travel insurance, so it is a good idea to start looking as soon as possible. Some countries in Europe have reciprocal health arrangements with the UK, which means you get access to the same healthcare as people who live in that country. To access this you need a free European Health Insurance Card. To apply you should fill out a form available from the Post Office or apply online at from the UK. It is strongly recommended that you obtain travel insurance as well as organising a European Health Insurance Card, as the Card will not cover repatriation to the UK on a medical flight should you become unwell while on holiday. Insurance for travel to some countries, particularly the US and Canada, can often be difficult to obtain and very expensive. You may therefore want to look into obtaining insurance before booking your holiday. If you are having treatment it is a good idea to discuss your travel plans with your doctor before booking a trip. For more information, see the Travelling and Travel Insurance Infosheets from Myeloma UK. 52

53 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 questions as they occur to you. 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? Infoline:

54 Treatment What are my treatment options? Can I choose which treatment to have? What is the aim of this treatment? How successful has it been in clinical trials? What would happen if I chose not to have this treatment? Is this treatment part of a clinical trial? How experienced are you and your team in delivering this treatment? How is the treatment given, and how long will it take? 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? 54 After treatment How often should I have check-ups and blood tests? Will I receive any other treatments e.g. a bisphosphonate? How will I know if the myeloma has come back? Carers 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: Will they require a stay in 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?

55 Tips Carry paper and a pen with 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 Take someone with you to your 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 Self-help checklist Learn about myeloma and its treatment order free information from Myeloma UK or download from the Myeloma UK website org.uk/publications Join a Support Group it can help to talk to other patients and relatives about how you feel Call the Myeloma Infoline on or 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 and side-effects simply and accurately to your doctor or nurse do not underplay Infoline:

56 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 56

57 Medical terms explained Anaemia: A decrease in the normal number of red blood cells, or the haemoglobin that they contain, causing shortness of breath, weakness and tiredness. Antibodies (immunoglobulins): Also known as immunoglobulins, antibodies are proteins found in the blood which are produced by cells of the immune system, called plasma cells. Their function is to bind to substances in the body that are recognised as foreign such as bacteria and viruses. They enable other cells of the immune system to destroy and remove them, thereby helping to fight infection. Anti-emetic: A type of drug used to prevent or minimise nausea and vomiting. Bisphosphonate: Drugs used to protect bone from being broken down. Commonly used bisphosphonates include Bonefos (sodium clodronate), Aredia (pamidronate) and zoledronic acid (formerly known as Zometa ). Bone marrow: The soft, spongy tissue in the centre of bones that produces white blood cells, red blood cells and platelets. Bortezomib (Velcade ): A type of drug called a proteasome inhibitor. Complementary therapy: A therapy used alongside conventional treatment e.g. reflexology, acupuncture or reiki. HICKMAN catheter/line: The brand name for the catheter (tube) that is inserted or tunnelled under the skin in the chest into a large vein just above the heart. It can be kept in for several months and is used to administer treatments, like chemotherapy, and to take blood samples. High-dose therapy: Highdose chemotherapy given intravenously, usually via a HICKMAN or PICC line, prior to patients receiving healthy stem cells as part of the transplantation procedure. Infoline:

58 Hypercalcaemia: A higher than normal level of calcium in the blood, which may cause loss of appetite, nausea, thirst, fatigue, muscle weakness, restlessness and confusion. Often associated with reduced kidney function since calcium can be toxic to the kidneys. Immune system: The complex group of cells and organs that protect the body against infection and disease. Immunoglobulins (antibodies): See definition for antibodies Malignant: Cancerous cells which have the ability to invade and destroy tissue. Mucositis: Pain and inflammation of the lining of the mouth and/or gastrointestinal tract. 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. Neutropenic: When the patient is at a greater risk of infection due to a low level of neutrophils, a type of white blood cell important for fighting infection. Non-steroidal anti-inflammatory drug (NSAID): Drugs used to prevent or treat pain which do not contain steroids. Paraprotein: An abnormal antibody (immunoglobulin) produced in myeloma. Measurements of paraprotein in the blood can be used to diagnose and monitor the disease. 58

59 Peripheral neuropathy: Damage to the nerves that make up the peripheral nervous system causing pain, tingling and altered sensation. PICC line: Peripherally Inserted Central Catheter. Inserted into one of the large veins of the arm near the bend of the elbow and threaded into the vein until the end sits in a large vein just above the heart. It is used to administer treatments, commonly chemotherapy. Plasma cells: Specialised white blood cells that produce antibodies (immunoglobulins) to fight infection. Platelets: Small blood cells which are involved in blood clotting. Quality of life: A term that refers to a person s level of comfort, enjoyment, and ability to pursue daily activities. It is a measure of an overall sense of wellbeing. Red blood cells: Blood cells which transport oxygen around the body. Relapse: The point where disease returns or becomes more active after a period of remission or plateau (often referred to as stable disease). Side-effects: The undesired effects caused by a drug or treatment, for example fatigue or nausea. Stem cell transplant: The infusion of healthy stem cells into the body. This allows the bone marrow to recover and renew its blood-forming capacity following the administration of high-dose chemotherapy. Stem cells: The cells from which all blood cells develop. Stem cells give rise to red blood cells, white blood cells and platelets. Stem cells are normally located in the bone marrow and can be harvested from the blood for transplant. Infoline:

60 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 60

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

62 British Association for Counselling and Psychotherapy (BACP) If you are wondering whether counselling is something you should consider the BACP provide information on what therapies are available and what they can help with. If you are looking for a therapist you can search the register on their website. British Heart Foundation The British Heart Foundation provides information and support to people with heart conditions. They fund specialist heart nurses and run rehabilitation courses around the UK. British Red Cross Volunteers assist with a range of local services including care in the home, transport and loans of mobility equipment to help those with health issues lead a full and independent life. Cancer Black Care Cancer Black Care provides a comprehensive support service to ALL members of the community who are affected by cancer, including advice on what financial support is available and advocacy. 62

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

64 Carers UK Carers UK provides advice, information and support for carers. It produces a directory of national and local carer organisations and can show you where to get help in your area. Citizens Advice Bureau (CAB) England: Wales: Northern Ireland: call your local Bureau Scotland: Citizens Advice Bureau offers advice about debt and consumer issues, benefits, housing, legal matters and employment. It provides assistance with claiming welfare benefits, including practical help with filling out benefit application forms. Check your local telephone directory for details of your nearest branch. Cruse Bereavement Care Cruse Bereavement Care exists to promote the wellbeing of bereaved people and to enable anyone bereaved to understand their grief and cope with their loss. The organisation provides face-to-face and telephone support, counselling and information. 64

65 Disability Rights UK Disability Rights UK produce high quality information, products and services developed by and for disabled people. They also supply keys for the National Key Scheme (NKS) which offers disabled people independent access to locked public toilets around the UK. electronic Medicines Compendium (emc) The emc contains up to date, easily accessible information about medicines licensed for use in the UK. It includes a Medicine Guides section which has been developed to help you understand your medicines and to take them safely. Gov.UK www. gov.uk A government website which provides information about a wide range of public services including benefits such as Attendance Allowance, Personal Independence Payments and Carer s Allowance. You will find phone numbers listed to discuss the different benefits that are available. Help with Health Costs Help with Health Costs gives information about prescription charges and getting help with health costs, such as travelling to appointments, in England and Wales. Infoline:

66 Hospice UK (Monday Friday, 9am 5pm) Hospice UK supports the development of hospice care in the UK. They have a register of hospices on their website that you can search to find one near you. Institute for Complementary and Natural Medicine (ICNM) The ICNM keeps a register of complementary therapy practitioners, which you can search on their website to find one near you. Leukaemia CARE (24 hours a day, 7 days a week) Leukaemia CARE exists to provide care and support to all those whose lives have been affected by blood cancers like leukaemia, lymphoma and myeloma. Macmillan Cancer Support Provides practical, medical and financial information and support to all cancer patients and their carers. If you are deaf or hard of hearing you can use the textphone service on

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

68 National Institute for Health and Care Excellence NICE is an independent organisation responsible for providing guidance on promoting good health and preventing and treating ill health in England. NICE produces guidance on health technologies (the use of new and existing medicines, treatments and procedures) and clinical practice (guidance on the appropriate treatment and care of people with specific diseases) within the NHS. National Kidney Federation The National Kidney Federation provides information about kidney disease and dialysis, and promotes best practice in renal medicine. NHS Blood and Transplant Provides patient information on blood transfusions, including the benefits and risks of the procedure. NHS 111 Service NHS 111 is staffed by a team of fully trained advisors, supported by experienced nurses and paramedics. You can call 111 when you need medical advice fast but it s not a 999 emergency. NHS 111 is available 24 hours a day, 365 days a year. Calls are free from landlines and mobiles. 68

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

70 Patient Advice Liaison Services (PALS) These are available in England to provide patients and their families with information regarding health related enquiries, NHS services and other support available. They can provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint. You will be able to find your local service through your hospital, or by searching on the NHS Choices website Penny Brohn Cancer Care (formerly Bristol Cancer Help Centre) Based in Bristol, Penny Brohn Cancer Care offers specialist support including complementary therapies, nutritional advice and counselling for people affected by cancer. Its helpline provides emotional support and information about complementary therapists and services in your area. Relate Relate offers a confidential counselling service for couples or individuals experiencing difficulties in their relationship. Relate provides support face-to-face, by phone and through its website. 70

71 Samaritans (24 hours a day, 7 days a week) Samaritans provides confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. It offers services by telephone, , letter and face to face. Scope Scope provide support, information and advice to disabled people and their families, including advice on benefits, equipment, therapies and respite. 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 helpline service, Forcesline, and practical support. Tenovus Cancer Care Tenovus is a charity committed to the control of cancer through research, education, counselling and patient care. Its helpline offers information and support to those affected by cancer. Infoline:

72 The Money Advice Service The Money Advice Service is a free and impartial service, set up by the government. It includes advice on insurance, benefits and care and disability. The Pensions Advisory Service Funded by the Department for Work and Pensions, the Pensions Advisory Service provides free information, advice and guidance for people with workplace and personal pensions. UK Myeloma Forum The UK Myeloma Forum is an organisation of people professionally engaged in the field of myeloma who are working to improve the outlook for patients with myeloma and related disorders. On behalf of the British Committee for Standards in Haematology, UKMF has produced guidelines on the diagnosis, treatment and management of myeloma. Unbiased.co.uk This is a directory of professional advisers which also, itself, provides financial, mortgage, legal and accounting information. It is run by an independent non-profit body. 72

73 Ireland ACCORD Caring for marriage and relationships. It is the largest marriage-care agency in Ireland. ACCORD (formerly known as the Catholic Marriage Care Service) accepts and values clients irrespective of their religious or ethnic background. Association of Registered Complementary Health Therapists of Ireland ARCHTI keeps a register of complementary therapy practitioners, which you can search on their website to find one near you. Chronic Pain Ireland Chronic Pain Ireland provides information and support to those living with chronic pain, their families and friends. Citizens Information Citizens Information is provided by the Citizens Information Board, the statutory body responsible for the provision of information, advice and advocacy on public and social services. Infoline:

74 Family Carers Ireland Two charities, The Carers Association and Caring for Carers have merged to form Family Carers Ireland in They provide advice on a wide range of issues, including benefits and respite, and run support groups for carers. Irish Cancer Society The Irish Cancer Society provides advice, support and information to people in Ireland affected by cancer. It also publishes a range of patient information, including booklets on myeloma. The Irish Hospice Foundation The Irish Hospice Foundation website includes a directory of hospices across Ireland. Multiple Myeloma Ireland Dedicated Irish myeloma website for patients, family members and those with an interest in myeloma. 74

75 Overseas Myeloma Patients Europe (MPE) MPE was formed following a merger between the European Myeloma Platform and Myeloma Euronet. It is a non-profit organisation and acts as an umbrella organisation for existing local and national myeloma associations and its members come from nearly 30 countries. MPE is dedicated to raising awareness of myeloma. Multiple Myeloma Research Foundation (MMRF) The MMRF is a US-based private funder of worldwide myelomaspecific research. It provides information about myeloma treatments and international clinical studies. Infoline:

76 About Myeloma UK Myeloma UK is the only organisation in the UK dealing exclusively with myeloma. With Myeloma UK you can... Call our Myeloma Infoline for practical advice, emotional support and a listening ear: UK: Ireland: Find your nearest Myeloma Support Group to meet up and talk to other people face to face. Read Myeloma Matters, our quarterly magazine, which offers a mix of the latest news in research and development for myeloma, and patient and family experiences. 76

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

78 Information available from Myeloma UK Our information covers all aspects of myeloma which we group into six categories. An outline of what the publications within each category cover is given below: Essentials These titles give an overview of myeloma, its treatment and management. Particularly useful for newly diagnosed patients and their families. Treatments and tests This series provides information about the range of treatments and tests used in myeloma. Symptoms and complications These publications cover the most common symptoms and complications of myeloma such as myeloma bone disease and fatigue. Clinical trials and novel drugs This series gives information on many of the promising drugs currently being investigated for the treatment of myeloma in clinical trials. Living well with myeloma These titles provide information relating to living well with myeloma such as diet, managing finances, travel insurance and caring for someone with myeloma. Related conditions Publications on conditions related to myeloma, including MGUS, plasmacytoma, smouldering myeloma and AL amyloidosis. For a full publication list visit /publications. To fill in a short survey about our patient information online, please go to /pifeedback 78

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

80 We need your help Thanks to our generous supporters we are able to provide information and services to patients and their families, as well as fund vital research that will help patients live longer and with a better quality of life. Myeloma UK receives no government funding. We rely on fundraising activities and donations. You can support Myeloma UK by: Making a donation Online at /donate Over the phone Or by posting a cheque payable to Myeloma UK, 22 Logie Mill, Beaverbank Business Park, Edinburgh, EH7 4HG Fundraising fundraising is a positive way of making a difference and every pound raised helps. As myeloma is a rare, relatively unknown cancer, fundraising is also a great way to raise awareness. However you decide to raise funds, our Fundraising Team is here to support you. Contact us on or fundraising@myeloma.org.uk Leaving a legacy gifts from Wills are an important source of income for Myeloma UK and will help us to continue providing practical support and advice to myeloma patients and their families. They also help us to undertake research into the causes of myeloma and investigate new treatments 80

81 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: