Living with myeloma
Coping with myeloma is physically and emotionally demanding. There are things you can do to look after yourself.
About living with myeloma
Coping with myeloma is physically and emotionally demanding. But with treatment, many people are now living longer and better lives. There may be long periods when the cancer is under control. There are different things you can do to look after yourself.
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Get enough rest
Rest is important. You use up a lot more energy when you are coping with symptoms or recovering from treatment. Here are some tips to help you get enough rest:
- Get a good night’s sleep – we have more information about sleeping problems and tips to improve your sleep.
- Ask family members or friends to help out. This could be helping with household tasks, cooking or shopping.
- Save energy for the things you want to do and pace yourself. If you have a busy day, try to rest the following day.
We have information about coping with tiredness.
Drink lots of fluids
Myeloma increases the risk of kidney problems. Drinking plenty of fluids can help your kidneys to stay healthy. Try to drink around 3 litres (5 pints) each day.
If you are on dialysis, your doctor will advise you about how much you should drink. You will need to drink less because your kidneys are not able to get rid of the fluid.
Kidney Care UK has more information about dialysis.
Keep physically active
Keeping physically active can help you during and after treatment. Ask your cancer doctor, specialist nurse or GP for advice about the amount and type of physical activity that is right for you.
If you can, go for regular, short walks. This helps your energy levels and helps you feel better. Try to walk for a little longer and further each day.
Being more physically active may improve symptoms such as tiredness, anxiety and difficulty sleeping. It can also strengthen your bones and muscles.
Reduce your risk of infection
You may find that having myeloma means you get more infections. You can speak to your doctor about vaccinations that may help, such as the flu and coronavirus vaccinations.
Some people with myeloma have medicines to boost their immune system or prevent infection. You can talk to your doctor about whether this might be suitable for you.
If you are having chemotherapy or stem cell treatment, your doctor will give you advice about reducing your risk of infection.
Eat healthily
Eating well improves your general health. It can also help you feel better and have more energy. Try to eat:
- plenty of fruit and vegetables
- more chicken and fish (especially oily fish)
- more high-fibre foods, such as wholegrain bread and oats
- less red meat and less processed meat.
Some people with myeloma struggle with their appetite and may lose weight. There are different supplement drinks available to help make sure you get enough calories and nutrients. Some supplement drinks need to be prescribed by your GP.
We have more information on ways to build up your diet.
If you are taking steroids as part of your treatment, you may find your appetite increases and you put on weight.
Ask your doctor or nurse to refer you to a dietitian if you need more advice.
Getting help
Myeloma affects people in different ways. You may not feel as fit as you used to before treatment. It can take some time to get back into a routine.
Different professionals are available to help:
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Haematology nurse specialist
This is a nurse that specialises in blood cancers. You may meet them in clinics or hospitals when you are first diagnosed with myeloma. Some may also be called Macmillan haematology nurses.
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Physiotherapist
This is someone who can teach you muscle-strengthening exercises. They can also help you start moving around again safely. You should avoid heavy lifting or any activities that may put a strain on your spine or other bones.
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Occupational therapist
An occupational therapist is someone who can check how well you manage normal activities and offer solutions if you are having any problems. They come to your home to see if any changes can be made to help you cope more easily.
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Social worker
A social worker can offer support and practical advice to you and your family. If you would like to talk to a social worker, ask your doctor or nurse.
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Psychologist
A psychologist is someone who may be able to help if you have anxiety or depression. They can look at ways to help you cope with your situation. They can also help with any relationship or communication problems in your family.
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District nurse
A district nurse works closely with GPs. They can visit patients and their families at home, if needed.
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Palliative care nurse
A palliative care nurse can help with controlling symptoms. They are experienced in assessing and treating symptoms of cancer, such as myeloma. Some may also be called Macmillan nurses.
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Marie Curie nurse
Marie Curie nurses can help with symptom control, and care for people approaching the end of their lives in their own homes. They may also be called palliative care nurses. Your GP or hospital specialist nurse can usually arrange for a palliative care nurse to visit you.
Our cancer support specialists on 0808 808 0000 can answer questions and tell you more about specialist help and services in your area.
Mobility problems
If myeloma means that it is difficult for you to move around easily, you may need specialist equipment or people to help you in your daily life. The following organisations and schemes may be helpful:
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British Red Cross
The British Red Cross offers a range of health and social care services across the UK. It can also lend equipment like wheelchairs. It has volunteers who can help you with shopping or errands.
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Living Made Easy
Living Made Easy offers free advice and information about disability equipment and mobility products. It also has specialist advisers and occupational therapists. It can give advice on aids and specialist equipment, including walking aids and wheelchairs.
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Scope
Scope offers information and advice on living with disability.
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Age UK
Age UK offers information and advice for older people in the UK. It can give information about home safety, home care or equipment that may help you.
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Blue Badge scheme
The Blue Badge scheme provides parking allowances for people with mobility problems. These are called concessions. It means that you, or someone with you, can park close to where you want to go. For example, you can park next to the entrance of a shop. To apply for a badge, contact your local council. A healthcare professional, welfare rights adviser or social worker can help you apply.
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Good neighbour scheme
Good neighbour schemes these are usually run by social services or local community organisations. They organise help for people in the local area. For example, there might be a good neighbour scheme where someone helps you with your shopping. Some schemes are only available to people living alone. Search online for ‘council for voluntary service’ or ‘good neighbour schemes’ and the area you live in, to find out more.
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About our information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Below is a sample of the sources used in our myeloma information. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk
Hughes D, Yong K, Ramasamy K, et al. Diagnosis and management of smouldering myeloma: A British Society for Haematology Good Practice Paper. Br J Haematol. 2024;204(4):1193-1206. Available from: www.doi.org/10.1111/bjh.19333
Sive J, Cuthill K, Hunter H, et al. Guidelines on the diagnosis, investigation and initial treatment of myeloma: a British Society for Haematology/UK Myeloma Forum Guideline. Br J Haematol.2021;193(2):245-268. Available from: www.doi.org/10.1111/bjh.17410
Reviewer
Senior Clinical Research Fellow and Honorary Consultant in Molecular Diagnostics and Leukaemia
Date reviewed
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