Living with myeloma

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 in remission. There are different things you can do to look after yourself.

Get enough rest

Rest is important. You use up a lot more energy when you are coping with the symptoms of myeloma 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 managing sleeping problems.
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 more information on coping with tiredness.

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.

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.

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 healthily 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:

Haematology nurse specialists

These nurses specialise 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.
Physiotherapists

Physiotherapists 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.
Occupational therapists

OTs can look at how well you manage with your normal activities. They come to your home to see if any changes can be made to help you cope more easily.
Social workers

Social workers 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.
Psychologists

Psychologists 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.
District nurses

These nurses work closely with GPs. They can visit patients and their families at home, if needed.
Palliative care nurses

These nurses 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.
Marie Curie nurses

Marie Curie nurses also help with symptom control, and care for people approaching the end of their lives in their own homes. Your GP or hospital specialist nurse can usually arrange for a palliative care nurse to visit you.

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, services and schemes may useful:

British Red Cross

The British Red Cross has an office in every county. It has volunteers who can help you in many ways. This may be help with shopping, or errands. The British Red Cross can also lend equipment, like wheelchairs.
Living Made Easy

Living Made Easy runs an information service. It also has specialist advisers and occupational therapists. They can give advice on aids and specialist equipment, including walking aids and wheelchairs.
Scope

Scope gives information and advice to disabled people.
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.
Good neighbour scheme

Some areas have good neighbour schemes, usually run by social services or local community organisations. The schemes organise help for people in the local area. For example, it could mean someone helping you with your shopping. Some schemes are only available to people living alone. Search for ‘council for voluntary service’ or ‘good neighbour schemes’ online to find out more.

Our cancer support specialists on 0808 808 00 00 can tell you more about the specialist help that is available and can let you know about services in your area.

Coping with your emotions

You may feel that the cancer has taken over your life. This is a common reaction and can be very hard to cope with. We have information to help you coping with the different emotions you may be feeling.

If you feel you are not coping well, or need more support, talk to your doctor or nurse.

About our information

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 cancerinformationteam@macmillan.org.uk

National Institute for Health and Care Excellence (NICE). Myeloma: diagnosis and management. NICE guideline [NG35]. Published: 10 February 2016 Last updated: 25 October 2018. Available from: https://www.nice.org.uk/guidance/ng35/chapter/recommendations Accessed: 19/07/22

Jonathan Sive et al., on behalf of the British Society of Haematology. British Journal of Haematology. Guidelines on the diagnosis, investigation and initial treatment of myeloma: a British Society for Haematology/UK Myeloma Forum Guideline. Published: 21 March 2021 Available from: https://onlinelibrary.wiley.com/doi/10.1111/bjh.17410 Accessed: 19/07/22

M.A. Dimopoulos et al. Annals of oncology. European Society for Medical Oncology (ESMO). Multiple myeloma: EHA-ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Volume 32, ISSUE 3, P309-322, March 01, 2021. Available from: https://www.annalsofoncology.org/article/S0923-7534(20)43169-2/fulltext Accessed: 19/07/22

Reviewers

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. It has been approved by Senior Medical Editor, Dr Anne Parker, Consultant Haematologist.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

use plain English
explain medical words
use short sentences
use illustrations to explain text
structure the information clearly
make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.