Living with Myeloma Your Essential Guide
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What is myeloma?
Looking after yourself
Your treatment and care
Your relationship with your medical team
Finance and travel insurance
Questions for your doctor / medical team
Further information and useful organisations
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Introduction This Essential Guide has been written for those who have been diagnosed with myeloma and for their families and friends. It covers issues you may have to cope with when living with myeloma. Learning more about what to expect, for both patients and carers, will help you cope with the diagnosis of myeloma. This Essential Guide sets out the emotional issues that a diagnosis of myeloma brings. It deals with the things you can do to help yourself and some of the practical advice you may need. You may prefer to read only the sections that apply to you; each section is self-contained to allow you to do this. The table of contents on the previous page will help you use this Essential Guide and find the answers to any specific questions you may have.
Aims of this Essential Guide
• To help you understand more about myeloma and its impact on your life
• To help you manage the problems the disease brings
• To help you and your family cope with the effects of myeloma
If you would like information about myeloma and how it is treated our Myeloma – Your Essential Guide gives you an overview. Myeloma UK also has a range of Infoguides and Infosheets on specific treatment options, disease management and other topics relevant to patients and carers. You will find a list of the information available from us at the back of this Essential Guide. If you would like to talk to someone about any aspect of myeloma, its treatment and management, call the Myeloma Infoline on 0800 980 3332. Your call will be answered by Myeloma Information Nurse Specialists who are supported by medical and scientific advisors. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK. From outside the UK, call +44 131 557 3332 (charged at normal rate). Disclaimer The information in this guide is not meant to replace the advice of your medical team. They are the best people to ask if you have questions about your individual situation. 55 2
What is myeloma? Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system. Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein which has no useful function. It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored. Bone marrow is the â€˜spongyâ€™ material found in the centre of larger bones in the body (see Figure 1). As well as being home to plasma cells, the bone marrow is the centre of blood cell production (red blood cells, white blood cells and platelets). In myeloma, the DNA of a plasma cell is damaged causing it to become malignant or cancerous. These abnormal plasma cells are known as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells normally divide and expand within the bone marrow. Myeloma affects multiple (hence multiple myeloma) places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis, the rib cage and the areas around the shoulders and hips. The areas usually not affected are the extremities the hands, feet and lower arm / leg regions. This is very important since the function of these critical areas is usually fully retained. Most of the medical problems related to myeloma are caused by the build up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine.
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Figure 1 - Bone marrow
Common problems are bone pain, bone fractures, tiredness (due to anaemia), frequent or recurrent infections (such as bacterial pneumonia, urinary tract infections and shingles), kidney damage and hypercalcaemia. Some people go on to develop myeloma after having been diagnosed with a benign (non-malignant) condition called MGUS which stands for Monoclonal Gammopathy of Undetermined Significance. This term describes the condition of the raised abnormal protein seen in myeloma (the paraprotein), but where there are no other features of the disease (less than 10% plasma cells in bone marrow and no evidence of bone disease). The risk of transition from MGUS to active myeloma is very low - only a 1% chance each year of follow-up. Even if the myeloma cells are at a higher level of 10-30% of the total bone marrow, the growth rate can be very slow and represent indolent / smouldering or asymptomatic myeloma. Both these conditions can change very slowly over a period of years and do not require active treatment. It is very important to establish the correct diagnosis, distinguishing MGUS and indolent myeloma from active or symptomatic myeloma, which does require treatment. There have been many new developments in the treatment and management of myeloma over the last few years that have had a significant impact on the way myeloma is treated. Research is on-going to develop new treatments and to use existing treatments in a better, more effective way. Many of the current and new developments are discussed in this guide. Treatments for myeloma can be very effective at halting its progress, controlling the symptoms and improving quality of life, but they are not able to cure it. Even after successful treatment, regular monitoring is needed in case the myeloma comes back. In addition to the treatment you receive from your doctor, there are several things that you can do to make living with myeloma easier.
• There are nearly 4,000 new cases per year in the UK
• Between 14,000 - 20,000 people are living with myeloma at any one time
• Myeloma accounts for 15% of blood cancers and 1% of cancers generally
• Median age of onset is 71 and only 5-10% of patients are under 40
Emotional care Coping with the diagnosis Being told you have 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 the diagnosis. 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. However, there is no answer to this. It is therefore probably better to think positively about the future and find out all you can about myeloma and what will happen to you, rather than question why this has happened. 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 turn out to be positive – many people say they feel closer to their loved ones and are able to focus more on the importance of family and friends or have learned to re-assess the priorities in their life. Remember too that not all changes are permanent: hair loss from chemotherapy may alter the way you look for a while but your hair will grow back.
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For some patients, one of the first questions they ask is â€œAm I going to die and, if so, when?â€? This is a very difficult thing to think about and before you ask your doctor about this you should be clear about exactly what you want to know. In general terms, myeloma is treatable but not yet curable. People can however 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, your treatment options and life after myeloma treatment 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 about your feelings can often help. Sometimes keeping a diary or journal can help to clarify your thoughts and feelings and can also help to provide a record of your treatment which might be useful.
Emotional support Emotional support is important in helping you live 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 people find their specialist nurse is a good person to talk to. Also if you find your emotions difficult to cope with, you might want to ask your doctor to refer you to a counsellor or someone else who can help. You can also call the Myeloma Information Nurse Specialist on the Myeloma Infoline 0800 980 3332 for emotional support. Support groups provide an informal and comfortable atmosphere in which members can share stories and information. Many people assume that they will be full of doom and gloom, but generally they are not. They are usually a very supportive group of people who are facing the same things that you are. Some 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 for the details of myeloma support groups near you. If there is not a myeloma-specific group, there may be a general cancer / haematology group that meets locally.
Family members can offer each other support by talking and listening. Being a good listener is a very effective way to offer support. It is difficult to know exactly how another person is feeling, but by trying to understand and empathise with them you can help ease their anxiety. Counsellors offer you the chance to explore your feelings and experiences in a supportive, confidential environment. A counsellor does not give you advice but helps you to find your own answers to the problems you are facing. 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. Alternatively you can contact the British Association for Counselling and Psychotherapy, for a list of registered counsellors in your area (see the Further information and useful organisations section on page 43 for their contact details).
Depression and anxiety Many patients and carers experience depression and anxiety at some stage during the illness. It is very important to recognise the symptoms and to discuss them with your doctor or nurse. These symptoms could include feeling low, nervous or worried for a prolonged period, having difficulty sleeping, experiencing panic attacks, being irritable and losing interest in your normal activities. Coping with myeloma is very demanding psychologically and emotionally, whether you are a patient or a carer. 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. Treatment for depression or anxiety can only begin once your doctor knows about it. There are several options for treatment, including talking therapies and drug treatments. Your doctor will know which is appropriate for your situation and can refer you to a counsellor and / or prescribe an effective anti-depressant medicine.
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Some patients and carers find that relaxation techniques and complementary therapies such as aromatherapy can help reduce anxiety (for further information see the Complementary therapies section on page 29). Try to give yourself something to look forward to once your treatment is finished, such as a holiday or taking up a new hobby.
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 not important if you are coping with a serious illness. Many drugs can also reduce sexual desire. If a sexual relationship is important to you, do 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. In the first instance, attempt to maintain a level of closeness, even if you do not have sex. Try to discuss with your partner what level of intimacy feels comfortable and in time you may gradually return to a more physical relationship. Donâ€™t be too embarrassed to talk to your GP or specialist doctor or nurse about problems with your sexual relationships. They are quite used to this sort of discussion, even if you are not. They may be able to prescribe a treatment that can help, if appropriate.
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 and can be particularly useful if you are thinking about treatment options. Do continue to talk about everyday things – they are still important too. You don’t have to talk about myeloma all the time. The following are some examples of common thoughts which may stop you from having important conversations. Below each thought are some ways of dealing with them.
“I feel embarrassed talking about this” It can be difficult to bring something up if you find it embarrassing or you think that your listener might be embarrassed. Simply saying you feel embarrassed can help make it less of a problem. Try starting with a sentence such as “I feel embarrassed 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 a time together to have a conversation can help make it happen, for example “Could we talk about my treatment options after dinner?” Allow enough time to talk and choose a place where you feel comfortable.
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Telling other people Telling friends and family members that you have myeloma can be a daunting task, but 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 donâ€™t have to keep telling your story if it upsets you.
You could give people a copy of the Myeloma UK leaflet Myeloma - An Introduction or the booklet Myeloma - Your Essential Guide to read, rather than have to explain everything yourself. Or, you may want to suggest that the person you are telling calls the freephone Myeloma Infoline on 0800 980 3332 to find out more for themself.
Telling children The decision on what and when to tell your children or grandchildren about your illness is a very personal one. It may depend on the age of the child(ren), your family circumstances and the impact of the treatment you will have. Sometimes a family may feel it is better to keep upsetting news from a child if your 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 parent to tell the child(ren) about the diagnosis and treatment. If you think it may 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 stressit is important to try to keep to routines. Donâ€™t change your rules on discipline because you are ill, as children need consistency. It is important to put things in simple terms and to repeat key points. Pictures or diagrams will help younger children understand. Keeping them up-to-date (with as little or as much information as you see fit) will make sure your child is involved and stop feelings of exclusion. Give them time and the opportunity to ask questions or to say how they feel, but donâ€™t force them to talk about it if they donâ€™t want to. Remember to tell the staff at their school what is happening. There are many books, both fiction and non-fiction, written for children to help them cope with serious illness and death in parents and grandparents. These may be available from your local library.
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Looking after yourself Diet No specific diet is recommended for people with myeloma but it is always a good idea to try to eat healthily. This may mean eating a little more of some foods, such as fruit and vegetables and a little less of others, such as fatty foods. After a diagnosis of myeloma some people feel they should make major changes to their diet, in case this can help them overcome the disease. There is no evidence that a change of diet can alter the outlook for people with myeloma. Getting a balance between different food types is, however, important for your general health. A healthy diet includes a variety of foods: lots of fruit and vegetables, high fibre foods such as whole-wheat bread and cereals, plenty of fish and chicken and not too much red meat, fewer fatty or fried foods and not too much sugar and salt. Eating this way can help to increase your energy levels, build up your strength and aid your recovery after treatment. You do not need to avoid foods containing calcium as this will not affect blood calcium levels and protein taken in the diet will not affect paraprotein levels. Drinks containing caffeine, such as tea, coffee and coke, 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.
Diet supplements Some people take a general vitamin supplement if they feel they may not be getting enough vitamins and nutrients from their diet. However, you should avoid taking vitamin C in large doses (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 best to avoid any supplements or remedies which are aimed at boosting the immune system (e.g. echinacea) as they may have an adverse effect on your myeloma. Discuss with your doctor before you take any vitamin or other supplements just in case they affect your myeloma or your treatment.
Exercise Exercise is part of many peopleâ€™s daily life whether as a hobby, something they do with your family and friends or at competition level. Exercise helps keep your body fit and strong and can boost mental and physical feelings of wellbeing. The most important thing for people with myeloma 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. Light, non-contact 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 and bone 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.
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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 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.
Coping with pain Bone pain is a common problem for people with myeloma. Which bones are affected (if any) differs from person to person, but the pain is most often felt in the middle or lower back, the hips and the rib cage. Below are some ways to reduce or help you cope with your pain: •
Take prescribed painkillers regularly or as required. Try not to let the pain take hold before taking them as they won’t be as effective. If you find the painkillers are not effective do go back to your doctor or nurse, as there are many different pain relieving medications available. Non-steroidal anti-inflammatory drugs (NSAIDs) such as Brufen and Voltarol should however be avoided as they can damage the kidneys.
• Be honest with your doctor or nurse about any pain you are experiencing. You should not feel you have to put a brave face on it - remember your medical team are there to help you. • Learn to relax – meditation, visualisation, relaxation or a combination of these can be helpful in relieving pain. However, they should all be practiced regularly in order to get maximum benefit. • If possible, avoid worrying – 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 – this can help with relaxation and pain, but make sure it is gentle. Only use an experienced 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. • 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 hot and cold. •
Make sure you are sitting comfortably – the way you sit or lie can affect your pain. If you find you are uncomfortable, move to get comfortable and ask for help from a family member if you need it. You can use special v-shaped pillows to help you get more comfortable in bed and when sitting.
Coping with fatigue Fatigue or extreme ongoing tiredness is a very common problem for people with myeloma. It can leave you 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’ll never get better. There are a number of things that you can do for yourself to help reduce fatigue. Make sure you are getting enough energy in the food you eat. To have energy your body needs iron to help carry oxygen through the bloodstream. Make sure that you eat a diet with enough iron (for example spinach, red meat, fortified cereals and breads are all a good source of iron). You also need to have sufficient vitamins in your diet (fresh fruit and vegetables are a good source of vitamins). Carbohydrates (such as pasta) are a good source of quick energy. Try getting a little exercise every day, as this too can help you manage your fatigue. Light exercise such as walking or swimming may be particularly beneficial. If you do not feel like walking you can still exercise while sitting in an armchair. For example, try lifting your arms and your legs, rotating your ankles and flipping your feet up and down from the ankle. Think about your sleeping patterns. Getting enough sleep can help improve fatigue.
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Consider the following: • Sleep for just long enough to feel refreshed • Try going to bed and getting up at the same time every day so your body gets into a routine • Try to reduce noise in the bedroom • Keep a steady temperature in the bedroom • Have a bedtime snack to avoid waking and feeling hungry in the night • Avoid stimulants such as coffee, tea, chocolate and cola drinks during the evening • Limit your intake of alcohol • Know how naps affect you – if you sleep in the afternoon, will this stop you sleeping at night? • Use relaxation techniques to help you get to sleep • Try to use your limited energy wisely • Try to do the things that matter to you each day and spread chores out over a period of time • Tell your family and friends that you do not have the energy to do all the things you did previously and ask for their help • Try wearing a towelling robe after a bath or shower, rather than rubbing yourself dry • Leave the dishes to drain after washing up • Wear clothes that are easy to put on and take off and sit down to get dressed • Allow yourself rest periods during the day • Prepare food when you have the energy and freeze it for when you are too tired to cook • Eat little and often and use ready-made meals or snacks when necessary • Try doing the ironing and other chores such as preparing food sitting down • Collect things that have to go upstairs and take them up when you go to bed • Shop at a less busy time and use a basket on wheels so you don’t have to carry heavy weights
Avoiding infections Infections are more common in people with myeloma because the disease and treatments such as chemotherapy (which can reduce your white blood cell count), can affect your ability to fight them off. You can however make some changes that might reduce your chance of catching infections. This is particularly important if you have recently undergone high-dose therapy and stem cell transplantation. 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 or other infections such as measles, 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.
Signs of infection to watch out for
• Cough or sore throat
• Feeling generally unwell or feverish
• Pain, redness or swelling around a cut or wound or around the entry point of your HICKMAN® catheter, if you have one
• Raised temperature (above 38 degrees centigrade)
Tell your doctor if you think you may have an infection. A course of antibiotics from your family doctor may resolve the infection but if it is persistent you may need an intravenous infusion of antibiotics given in hospital.
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Caring for your kidneys Kidney problems can occur in people with myeloma for a variety of reasons. They can be caused by the myeloma itself or sometimes the drugs used to treat myeloma can harm the kidneys. A good way to protect your kidneys from damage is to drink at least three litres (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. You should also avoid taking very large doses of vitamin C (more than 500mg per day).
Coping with the side-effects of treatment This section will look at the most common side-effects of chemotherapy treatment and what you can do to lessen them and live more comfortably. Some of the aspects discussed below may be side-effects of other treatments as well as chemotherapy.
Further information on chemotherapy and an overview of myeloma treatment can be found in Myeloma - Your Essential Guide. Myeloma UK also has a range of publications available about specific treatments. You will find a listing of the patient information available at the back of this Essential Guide. To order your free copy of any of these publications, contact the Myeloma Infoline on 0800 980 3332.
Nausea and vomiting Two of the main side-effects associated with chemotherapy are nausea and vomiting. Many people find these very upsetting but there are many 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 are prescribed these, it is very important that you take the medications regularly and do not wait until you feel sick. 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 to take your anti-sickness treatment before your chemotherapy to help avoid this. Strong smells can 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 them. 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 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 quickly 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 Hair loss (alopecia) is common with some kinds of chemotherapy. Not all chemotherapy drugs cause hair loss, and different people may be affected in different ways by the same drug. If you do lose some or all of your hair, remember that your hair will grow back once your treatment has finished. Having your hair cut short before treatment can keep it looking better during loss and re-growth. Some people find soft hats, headscarves or wigs useful.
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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 this. Mouth problems Some chemotherapy drugs can cause your mouth to feel sore and sometimes small ulcers can develop. As well as being painful, they may also become infected. You may find that your mouth becomes 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 a stem cell transplant. Your sense of taste should return to normal after treatment has stopped.
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
• Remember that cold drinks can soothe sore mouths
• 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
Meanwhile it may help to: • 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 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 eat when you can. Eating little and often, including plenty of fresh fruit and vegetables, may help. Try to plan 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 regain your appetite and may recommend special build-up products.
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Your treatment and care There is excellent care available through the NHS and you should have full access to all the services you need. Ideally you should be looked after by a medical team led by a consultant haematologist. This medical team should include a range of expertise. For myeloma treatment, the team should comprise (in addition to the consultant) a haematology / myeloma specialist nurse, a radiotherapist, an orthopaedic surgeon (bone specialist), a counsellor, a dietician, a physiotherapist and palliative care staff. The team should ensure you have access to practical advice and emotional support such as that offered by Myeloma UK. Not all hospitals, especially the smaller ones, will be able to offer all of these services.
Guidelines on the diagnosis and management of multiple myeloma The UK Myeloma Forum, on behalf of British Committee for Standards in Haematology, has drawn up guidelines on the diagnosis and management of multiple myeloma. These guidelines aim to improve the care of myeloma patients in the UK by setting standards for the treatment and support myeloma patients should receive from the NHS. Doctors and other staff involved in treating people with myeloma should be familiar with these guidelines and should use them to direct the way myeloma is managed.
What to expect as a myeloma patient • That the diagnosis is explained honestly, in a private room or a quiet, private area if a private room is not available. If possible, a specialist nurse should be present and you should be encouraged to have a close relative or friend with you. • 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-to-date information. • To be given information about local support groups, both myeloma-specific and general cancer ones. • That information will be made available to you on state benefits such as Disability Living Allowance, Attendance Allowance and other social services-based help.
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Medical professionals The following overview should give you an idea of â€˜whoâ€™s whoâ€™ in your hospital / health centre: General practitioners (GP or family doctor) The 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 will support you throughout your illness. Consultant haematologists A consultant haematologist specialises in blood disorders and will oversee the tests you undergo to reach a diagnosis. The consultant haematologist is likely to be responsible for your treatment plan and will explain the different treatment options available to you. 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 plan will be 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 support groups, counselling and dieticians. Haematology / myeloma nurse specialists These nurses have been specially trained to help people cope with haematological cancers and illnesses. Some have a particular interest in myeloma. They work mainly in hospitals, but also help people when they are back at home.
Community nurses These nurses are specialists in caring for people in their home. They are usually based in health centres and are sometimes available 24 hours a day. Your GP will initially contact them on your behalf if you need nursing support at home. Palliative care doctors and nurses These are specialists in controlling the symptoms of cancer. They work closely with, or are part of, your medical team to make sure that pain and other distressing symptoms are controlled. A palliative care team often has complementary therapists who can help relieve symptoms of stress and anxiety (for further information on complementary therapies see the Non-medical care section on page 29). 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 dieticianâ€™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 weight. Physiotherapists Physiotherapists can help you to keep mobile and free from pain by doing stretching and other exercises with you. You may be referred to a physiotherapist by your doctor, particularly if you need to build muscle strength. It is important that the physiotherapist is familiar with treating myeloma patients because of the bone problems associated with the disease. Occupational therapists These 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 offer advice on the use of assistive devices, as well as recommending lifestyle adaptations.
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Medical institutions The following overview should give you an idea of the various medical institutions you may come across: Cancer centre 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. Some cancer centres are separate hospitals. The staff working in these centres are often involved in research. District general hospital / cancer unit These are hospitals dealing with general medicine and which have some cancer services available. They will generally have a haematology department and a consultant haematologist who will oversee your treatment and care. Cancer centres and cancer units work in partnership in cancer networks. There are 34 cancer networks in England, three in Scotland and three in Wales. Northern Ireland has a slightly different system, but there are still centres that specialise in cancer care. Hospice Hospices offer supportive and palliative care to people recovering after treatment and to people who are in the final stages of an illness. Many hospices now also offer respite care. They are often run by charities. Contact the Hospice Information Service or Marie Curie Cancer Care for more information about hospice services in you area (contact details are in the Medical and palliative care section on page 45). 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 test or procedure. NHS doctors often work in both NHS and private hospitals.
Your relationship with your medical team Your relationship with your medical team will involve trust and collaboration. You should feel comfortable asking them questions and discussing treatment options. Learning more about myeloma and the pros and cons of different treatments will help you to communicate more easily with your medical team. Any treatment decision should be reached together. Sometimes medical professionals forget that patients do not understand medical jargon. Ask for information to be given in everyday language (layman’s terms). If you do not understand something, don’t be afraid to say so. 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. 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.
• 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’ • Always mention to your doctor if you are taking any medicines you bought over the counter (without a prescription) or any supplements or complementary therapies you are using
• Tell your doctor if you are experiencing side-effects
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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 probably be able to give you average figures; they will not be able to predict exactly how you are likely to respond to the treatment.
Second opinions If you feel dissatisfied with what your doctor has said, you are entitled to ask for a second opinion. Your doctor should fully respect your wish to obtain a further opinion and not be offended. You may however find it easier to approach your GP about this. Whilst you do not have an automatic right to a second 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 think that the care you are receiving is not meeting the right standard, or you are unhappy with something that is happening, then you should discuss it initially with your doctor. You may feel uncomfortable doing this, but the doctor cannot deal with your concern if he or she does not know about it. If you feel you are not getting a satisfactory answer from your doctor or nurse and feel you have grounds for a complaint, your hospital or local health centre will have a procedure in place for dealing with complaints. When making a complaint you should be made aware of the complaints procedure of the hospital or centre. This will give you an idea of what is required of you and how your complaint will be dealt with. In England, the Patients Advice and Liaison Service (PALS), can provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint (contact details are in the Medical and palliative care section on page 45).
Non-medical care Complementary therapies By focusing on their emotional and psychological wellbeing some patients have found that complementary therapies help alleviate symptoms and side-effects such as nausea and pain. Using complementary therapies can give you a feeling of control over your disease and treatment. Carers may also find therapies aimed at reducing tension and promoting relaxation especially useful. Complementary therapies can be used in addition to the treatments prescribed by your doctor. They should not be confused with alternative therapies, which are used instead of conventional treatment. There are many different types of complementary therapy and it is important to choose one that fits your needs best. Some of the more common types are listed below. Acupuncture is part of traditional Chinese medicine and uses the balance of the bodyâ€™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. 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 a variety of oils are used to produce different results. It may be best to avoid using oils on the skin when you are having chemotherapy or radiotherapy as the skin can become very sensitive, but the perfume of lightly scented candles can be used to 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.
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Meditation is a relaxing mental exercise which can help reduce anxiety, stress and pain. Breathing techniques and concentration are used to relax each part of the body in turn. Meditation can be used to aid sleep and relieve tension. 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 bodyâ€™s internal organs. Pressure is applied to different points on the sole of the foot to help relieve pain and sickness. This type of massage can be very relaxing. Reiki is an ancient form of healing which uses the bodyâ€™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 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 can 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 (contact details are in the Complementary therapy section on page 47) 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. It is important that you let your doctor know about any complementary therapies you are using.
Finance and travel insurance Welfare benefits It can put a strain on your finances if you have had to give up work (temporarily or permanently) as a result of your illness, or are spending a lot of money on hospital travel and medication. You are entitled to claim the state benefits outlined below if myeloma is affecting your finances or your ability to work. For more information on benefits contact the Benefits Enquiry Line (contact details are in the Financial advice section on page 47) or phone your local Benefits Agency or Department for Work and Pensions. 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. Remember that you can apply for benefits at any stage of your illness and that you can appeal or re-apply later if an application is not successful. Disability Living Allowance (DLA) is for people under 65 who have difficulty walking or looking after themselves (or both). DLA is made up of a care component (for difficulties with looking after yourself) and a mobility component (for difficulties with walking or getting around). When you claim DLA your income and savings are not taken into account, so you could claim whilst you are still working or already receiving other benefits. The amount of DLA you receive will depend on how much help or supervision you need. Attendance Allowance (AA) is for people aged 65 or over who have difficulty looking after themselves. AA is made up of a care component, paid at different rates according to how much help you need, but there is no help for mobility problems. When you claim AA your income and savings are not taken into account.
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Income Support is for people under 60 on a low income and is intended to cover basic living expenses. You cannot usually get Income Support if you work more than 16 hours a week (or if your partner works more than 24 hours a week). It is a meanstested benefit, which means your income and savings will be taken into account when you make a claim. If you receive income support you will be entitled to help with the cost of prescriptions, travel to hospital and wigs. Statutory Sick Pay is paid by your employer for up to 28 days, after which you may be able to claim Incapacity Benefit (those who are unemployed or self-employed can claim Incapacity Benefit straight away). If you leave your job, Statutory Sick Pay will stop. Incapacity Benefit is paid to people of working age who cannot work due to illness or disability. If you are self-employed or unemployed, you should claim Incapacity Benefit as soon as your illness prevents you working or looking for work. If you are employed you would claim Incapacity Benefit when your Statutory Sick Pay ran out. If you receive Incapacity Benefit you may also be able to get help with health costs, including prescription charges. Pension Credit guarantees everyone over 60 a minimum weekly income. Although pension credit takes your income and earnings into account, there is no upper savings limit. If you receive Pension Credit, you may also be entitled to help with things like your housing costs and council tax. Carerâ€™s Allowance can be claimed by your carer if you are awarded DLA or AA at the middle or higher rate for personal care. They must spend at least 35 hours a week looking after you and not earn above ÂŁ84 per week. Help with NHS costs, including travel for hospital treatment, dental treatment, prescriptions and wigs, may be available if you are on a low income. If you are not entitled to free prescriptions and you need a lot of medication, you can cut the cost by buying a pre-payment certificate for four months or a year. This is likely to save you money if you need more than one prescription item per month. More information can be obtained from the Prescription Pricing Division (contact details are in the Financial advice section on page 47).
Contact your local authority (their number will be in your local telephone directory) for information on other types of financial help such as Council Tax reduction. The Social Services department take care of things like disabled parking concessions and aids and adaptations for your home.
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. Help with mortgage repayments may be available if you are receiving income support, but this applies to the interest part only and is for a limited time. 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.
Pensions If you have an occupational pension it may be worthwhile checking your entitlements under the scheme and if payments will be affected. If you have a private pension, it may help to discuss your financial position, needs and concerns, with an authorised financial adviser. If you are considering early retirement on health grounds you should discuss this with your doctor, pension provider and / or your companyâ€™s human resources department if in a company scheme. You may want to take a union representative (if you have one) or friend along to any meeting with your human resources department.
Further Infosheets on welfare benefits and managing your finances are available from Myeloma UK.
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Making a will One of the things you should think about is making a will to ensure those you love are looked after. If you donâ€™t make one, part or all of your estate might go to people who you never intended to benefit. If you create a homemade will you may forget to include some important details. Therefore it is advisable to contact your local 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; these can be a very important source of income for a charity. 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 Travel insurance when you have myeloma is an absolute must. 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 European Health Insurance Card, which replaces the old E111 form. To apply you should fill out a form available from the Post Office or contacting the Department of Health. It is strongly recommended that you obtain travel insurance as well as taking the European Health Insurance Card. 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 getting 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.
Further Infosheets on travelling with myeloma and travel insurance are available from Myeloma UK.
Carer concerns Being told someone you know has myeloma When you are told that someone close to you has myeloma you may feel shocked, upset and worried because the future is now uncertain. You may feel that you need to put on a brave face and disguise your feelings, but there is no doubt that being honest about how you feel will help future communication between you and your loved one.
You will probably have a lot of questions – ask the healthcare team if you can talk to them about what to expect, or call Myeloma UK on 0800 980 3332 to talk to a Myeloma Information Nurse Specialist.
Getting help During treatment and recovery, patients will not be able to do as much as before. You may find you have to take on additional responsibilities or do things you rarely did before, as well as care for the patient. Don’t let yourself be overwhelmed by all this – healthcare professionals, relatives and friends and many voluntary organisations are there to help you. Try to take people up on their offers of help: it will make them feel good because they are able to do something for you. The Further information and useful organisations section of this guide contains the contact details of helpful organisations throughout the UK and Ireland. Your family doctor can be a useful source of information and support and there may be services available in your area such as district nurses, Macmillan or Marie Curie nurses, home helps, hospice respite care and counsellors.
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Preparing food for patients 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. If a patient is experiencing severe side-effects due to their treatment, they may not be able to eat some days but they will start to eat when they are ready. Try to encourage them gently to eat but donâ€™t push them. Have pre-prepared snacks to hand for times when the patient feels like eating. Fresh and dried fruit and nuts (unless the patient has diarrhoea, when they should be avoided), soups, breakfast cereals, yoghurt, dips, sandwiches and raw vegetables are easy to store and prepare. Try not to take it personally if the patient doesnâ€™t eat the food you cook. It is unlikely to be a reflection on the quality of your cooking.
For specific information on eating and drinking after a stem cell transplant, contact the Myeloma Infoline on 0800 980 3332 to order further written information or speak to a Myeloma Information Nurse 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 care team. You can ask questions about the things you want to know. Sometimes these are questions the patient might not want to ask (or know the answer to). It may be difficult to ask some questions in front of the patient. These may be questions about what is likely to happen, or what plans to make. If the patient has given their permission, ask the doctor or nurse if it would be possible to speak to them without the patient present.
Sometimes the patient may want to ask the question but is reluctant to do so in case the answer worries you, the carer. Try to discuss things together before seeing the doctor or nurse so you know what you are going to ask. The patient may not always be happy for you to know things that they do not, but this is something you can discuss together. In some circumstances the patient can write a letter to their GP and consultant stating that they give their permission for information to be passed to you, as their carer.
Questions for the doctor / medical team If you are a carer you will want to know how you can support the patient as they go through treatment. Questions you may want to ask are: • • • • •
Will the patient require a stay in hospital and for how long? Will the patient need a lot of looking after? Will I need to take time off work? Is other help or support available? Who can I call if I am worried or in an emergency?
Communication Don’t feel that you have to talk about everything immediately and remember that 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 which may stop you from having important conversations. Below each thought are some ways of dealing with them.
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“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 person 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. But 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 – the other person may want time to think. Remember, not all communication is verbal: holding hands or placing your hand on someone can say as 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 ask “Would you like some time on your own now?”.
Looking after yourself Taking a break from caring can help you think things through, 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 the patient 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 from the patient and other family members. 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 about these feelings, perhaps with your family doctor or the haematology or myeloma nurse specialist. Bottling them up can mean that you end up feeling guilty about your anger. Your feelings are not selfish or insignificant, they are just as important as the patient’s. Remember you cannot look after anyone else if you do not also look after yourself.
• 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
• Keep a journal or diary - this may help you explore how you feel
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Questions for your doctor / medical team Diagnosis • What tests will I need to have? • How long will it take for the results to come through? Will I have to call to get them? • Are my bones affected? • Are my kidneys affected? • Who will be my main point of contact at the hospital from now on? When can I contact them? (Write their name in this booklet)
Treatment • Will I need to have treatment? If so, when? • What are my treatment choices? Can I choose which treatment to have? • What is the aim of this treatment? • What would happen if I did not have this treatment? • How is the treatment given, how long will it take? • Will a hospital visit / stay be needed? • How will I feel before, during and after this treatment? • Is this treatment part of a clinical study? • How successful has this treatment been in the past? • How experienced are you and your team in dealing with this treatment? • Can treatment affect my fertility? • Can I carry on with work / normal activities whilst I am receiving treatment? • Will I be able to drive?
After treatment • How soon will I be able to go back to work or go on a holiday? • How often should I have a check-up or blood test? • How long will it take for the results to come through? Will I have to call to get them? • Will I receive any other treatments such as bisphosphonates and maintenance treatments? • Can I play sport again? • 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 the patient as they go through treatment. • Will the patient require a stay in hospital? If so, for how long? • Will the patient need a lot of looking after when they come out of hospital? • What can I do to help the patient? What will they be able to do for themselves? • Who can I call in an emergency?
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Self-help checklist • Learn about myeloma and its treatment – use booklets and websites • Join a support group – it can help to talk to other patients and relatives about how you feel • Use the Myeloma Infoline for information on treatment, practical advice and emotional support – 0800 980 3332 • Find out from your GP which support services and benefits are available – do ask for help if you need it • Ask for a contact name and number for a member of staff in your Haematology Department and keep the number handy – you could write it in this booklet • Bring any side-effects to the attention of your doctor or nurse • Describe your symptoms simply and accurately to your doctor or nurse – do not underplay them or assume they are not important • Take all medication as directed – use a segmented pillbox (with separate compartments for each dose of tablets) to help you remember what to take and when • Try (as a patient) to drink three litres of water / liquid each day • Put aside time for rest and relaxation • Make getting enough sleep a priority • Beware of ongoing signs of depression and anxiety and speak to your GP about them • Try to do one thing that you enjoy every day • Think positively, but allow yourself to have ‘off days’ • Take care (as a carer) of your own health • Carers, take some time for yourself each day, try getting out of the house if possible
Further information and useful organisations General information and advice on self-management Cancerbackup www.cancerbackup.org.uk 0808 800 1234 (Monday–Friday, 9am–8pm) Cancerbackup is Europe’s leading cancer information charity. It publishes a wide range of patient information. Its website contains over 4,500 pages of up-to-date cancer information. Its helpline is staffed by trained oncology nurses who provide information and support to people affected by cancer. Cancer Black Care www.cancerblackcare.org 020 8961 4151 (Monday–Friday, 9am–5pm) Provides information, advice and support services for members of the black and minority ethnic communities. Cancer Research UK www.cancerhelp.org.uk 0800 226 237 (Monday–Friday, 9am–5pm) Its helpline and website provide information about all types of cancer and its treatment, including current research and clinical studies. Irish Cancer Society (Republic of Ireland) www.cancer.ie 1 800 200 700 (Monday-Friday, 10am-5.30pm; from UK dial 00 3531 2310 500) Its helpline provides advice, support and information to people in the Republic of Ireland affected by cancer. Publishes patient information, including a booklet on myeloma Leukaemia CARE www.leukaemiacare.org.uk 0800 169 6680 (24hrs) Its helpline is staffed 24 hours a day, 7 days a week by trained volunteers who offer befriending, support and information about leukaemia and other blood disorders, including myeloma. Leukaemia CARE also offers discretional financial assistance and caravan holidays in the UK. Myeloma Infoline 0800 980 3332
Leukaemia Research www.lrf.org.uk 020 7405 0101 (Monday–Friday, 9am–5pm) Leukaemia Research funds research into leukaemia and related blood disorders. It publishes patient information on myeloma and on stem cell transplantation. Tenovus Cancer Information Centre www.tenovus.com 0808 808 1010 (Monday–Friday, 9am–4.30pm) 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. Ulster Cancer Foundation (Northern Ireland) www.ulstercancer.org 0800 783 3339 (Monday–Friday, 9am–5pm) Offers information, support and counselling to people affected by cancer in Northern Ireland. Its helpline is staffed by specially trained nurses with experience in cancer care.
Emotional support British Association for Counselling and Psychotherapy (BACP) www.bacp.co.uk 0870 443 5252 (Monday–Friday, 8.45am–5pm) BACP provides information about counselling and can give you a list of local registered counsellors. Cruse Bereavement Care www.crusebereavementcare.org.uk 0870 167 1677 (Monday-Friday, 9.30am-5pm) Cruse Bereavement Care exists to promote the well-being of bereaved people and to enable anyone bereaved to understand their grief and cope with their loss. The organisation provides face-to-face and telephone support, counselling and information.
Depression Alliance www.depressionalliance.org 0845 123 2320 (Information pack request line) Provides information, support and understanding for those affected by depression and coordinates a network of self-help groups throughout the UK. Depression Alliance also produces a wide range of publications covering various aspects of depression. Relate www.relate.org.uk 0845 130 4016 (Monday–Friday, 9am–5pm) 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.
Medical and palliative care Hospice Information www.hospiceinformation.info 0870 903 3903 (Monday–Friday, 9am–5pm) Offers information to health professionals and the general public about hospice and palliative care services in the UK. Macmillan Cancer Support www.macmillan.org.uk 0808 808 2020 (Monday–Friday, 9am–6pm) Its helpline is staffed by specialist advisors who provide information, practical and emotional support to those affected by cancer. Macmillan’s other services include Macmillan nurses and patient grants, as well as information about over 750 cancer self-help groups across the UK. Marie Curie Cancer Care www.mariecurie.org.uk 0800 716 146 (Monday–Friday, 9am–5.30pm) Marie Curie provides specialist palliative nurses and has ten Marie Curie Centres providing free respite and hospice care throughout the UK.
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Myeloma Euronet www.myeloma-euronet.org 00 49 30 2887 9755 Myeloma Euronet, a non-profit network organisation of myeloma patient groups, is a European initiative dedicated to raising the awareness of myeloma, providing information on diagnosis, treatment and care, as well as support for their families and loved ones National Cancer Alliance (NCA) www.nationalcanceralliance.co.uk 0870 777 4713 (Monday-Friday, 9.30am-4pm) The NCA is an alliance of cancer patients and health care professionals working together to improve the treatment and care of all cancer patients in the UK. NHS Direct / NHS24 www.nhsdirect.nhs.uk In England, Northern Ireland and Wales call NHS Direct on 0845 46 47 In Scotland call NHS24 on 08454 24 24 24 Staffed by trained medical professionals, it provides 24-hour access to information about all aspects of health and healthcare. Pain Association (Scotland) www.chronicpaininfo.org 0800 783 6059 (Mondayâ€“Friday, 9.30amâ€“4pm) Its helpline offers support to people with chronic pain. It runs pain management support groups across Scotland. Pain Concern www.painconcern.org.uk 01620 822 572 (Weekdays 9am-5pm and Fridays 6.30pm-7.30pm) Pain Concern provides a range of information about self-help and managing pain. Its helpline offers information, support and a listening ear. Patient Advice and Liaison Services (PALS) www.pals.nhs.uk PALS, which is available in England, provides patients and their families with information regarding health related enquiries, NHS services and other support available. It offers information about the NHS complaints procedure and how to get independent help if you are considering making a formal complaint. 55 46
Complementary therapy Institute for Complementary Medicine (ICM) www.icmedicine.co.uk 020 7237 5165 (Monday–Friday, 10am–5pm) ICM provides the public with information about all aspects of complementary medicine. ICM administers the British Register of Complementary Practitioners and provides details of local registered practitioners of various complementary therapies. Penny Brohn (formerly the Bristol Cancer Help Centre) www.pennybrohncancercare.org 0845 1243 2310 (Monday–Friday, 9.30am–5pm) The Bristol centre offers complementary cancer care to work alongside medical treatment. Its helpline provides emotional support and information about complementary therapists and services in your area.
Financial advice Citizens Advice Bureau (CAB) www.nacab.org.uk CAB 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 or the internet to find your nearest branch. Disability Benefits Enquiry Line 0800 88 22 00 (Monday–Friday, 8.30am–6.30pm; Saturday 9am–1pm) Offers information about benefits for people with an illness or disability. The enquiry line provides assistance, over the phone, with filling out benefit application forms. Prescription Pricing Division (PPD) www.ppa.org.uk 0845 850 0030 (Monday-Friday, 8am-6pm) PPD offers information about prescription pre-payment certificates. It provides telephone advice and an order line, as well as a list of pharmacies able to supply certificates.
Myeloma Infoline 0800 980 3332
Carer concerns Carers UK www.carersuk.org 0808 808 7777 (Wednesday and Thursday, 10am–12pm and 2pm–4pm) Carers UK provides advice, information and support for carers. It produces a directory of national and local carer organisations and can show you where to get help in your area. Crossroads and Macmillan Cancer Relief www.crossroads.org.uk 0845 450 0350 (Monday–Friday, 9am–5pm) Crossroads, working with Macmillan Cancer Relief, employs care attendants whose role is to relieve the family carer by giving them a break from their caring responsibilities. Princess Royal Trust for Carers www.carers.org 020 7480 7788 (Monday–Friday, 9am–5pm) It provides information, advice and a range of support services for carers, including an extensive network of independently managed Carers’ Centres across the UK.
Myeloma Infoline 0800 980 3332
With Myeloma UK you can... Call our Myeloma Infoline on 0800 980 3332 You will immediately access information and support relating to all aspects of myeloma. Your call will be answered in confidence by Myeloma Information Nurse Specialists who are supported by medical and scientific advisors. Lines are open Monday to Friday, 9am to 5pm, and are free to phone from anywhere in the UK. From outside the UK call +44 131 557 3332 (charged at normal rate).
Contact us by email If you have a specific question about any aspect of myeloma, treatment or living with myeloma, you can also contact our Myeloma Information Nurse Specialists by email at email@example.com
Order our free patient information Myeloma UK has a range of Essential Guides, Infoguides and Infosheets that give information on myeloma and related disorders, providing details of treatment options and disease management. You will find a list of the information available from us at the back of this guide.
Attend our Patient and Family Myeloma Infodays These are full-day meetings, where you can learn about the latest in the treatment and management of myeloma from a panel of experts. They are also a valuable opportunity to meet others affected by myeloma.
Subscribe to Myeloma Matters The only myeloma-specific newsletter available in the UK, Myeloma Matters offers a fantastic range of features, articles and stories to help you keep abreast of the latest developments in treatment and research.
Visit our website - www.myeloma.org.uk Developed to provide immediate, 24-hour access to information about myeloma and related disorders to individuals affected by the disease and to the people caring for them.
We need your help
Each year, Myeloma UK sends Infoguides and Infosheets to nearly 10,000 patients and their families, and helps thousands more through providing services such as the Myeloma Infoline and Patient and Family Myeloma Infodays.
That is why we need your help
We depend on the support and generous donations from people like you to provide these important services which are available free to myeloma patients, their families and carers.
Will you help us to help others?
• £5 will pay for an Infopack to be sent to help one more patient
• £20 will allow one of our highly trained Myeloma Information Nurse Specialists to help two callers on our Myeloma Infoline
• £50 will pay for a family of three to attend a Myeloma Infoday
• £250 will pay for 2,000 patient information Infosheets
Simply choose the amount that is right for you, or if you prefer, choose an amount of your own. To donate you can either post your donation (by cheque or CAF), use your credit card to donate by telephone or use the Myeloma UK website www.myeloma.org.uk
We can make your money go further if you are a UK taxpayer. If you pay tax at the basic rate we can claim 28p on every pound you donate. For example, if you donate £10 then we are able to claim back £2.80, so your donation becomes £12.80. This extra comes from the taxman and doesn’t cost you anything. This process is called Gift Aid.
Myeloma Infoline 0800 980 3332
Other information available from Myeloma UK Booklets Myeloma – Your Essential Guide
Infoguides Balloon Kyphoplasty Bone Disease and Bisphosphonates Clinical Studies High-Dose Therapy and Stem Cell Transplantation MRC Myeloma IX Percutaneous Vertebroplasty Revlimid Serum Free Light Chain Assay Thalidomide Velcade
Infosheets Infosheet topics include: Chemotherapy; Diet and Nutrition; Erythropoietin; Fatigue; Growth Factors; Managing Your Finances (including Benefits); Mouthcare; Pain; Peripheral Neuropathy; Plasmapheresis; Radiotherapy; Steroids; Support Groups; The Kidney; Travel Insurance; Travelling
Leaflets Myeloma – An Introduction There are a number of conditions closely associated with myeloma. Myeloma UK has information available on AL amyloidosis, Waldenström’s macroglobulinaemia and MGUS.
To order these free publications please contact Myeloma UK. Myeloma Infoline: 0800 980 3332 (freephone number) or 0131 557 3332 www.myeloma.org.uk email: firstname.lastname@example.org
Published by Myeloma UK Publication date: May 2007 Review date: May 2008 Author: Eric Low, Chief Executive, Myeloma UK
All Myeloma UKâ€™s publications are extensively reviewed by patients and healthcare professionals prior to publication.
Myeloma Infoline 0800 980 3332
www.myeloma.org.uk Infoline 0800 980 3332
For more information or to access any of the information and support services listed, contact Myeloma UK Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JQ Tel: 0131 557 3332 Fax: 0131 556 9720 email: email@example.com Myeloma Infoline: 0800 980 3332 www.myeloma.org.uk
Charity No. SC 026116
Annual UK Myeloma Awareness Week 21-28 June 55