Organisations, support groups, books, videos and other resources to help you cope with myeloma and treatment.
Cancer Research UK
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We are the European leader in the development of new anti-cancer drugs. We fund research on all aspects of the disease from its causes, to treatment and prevention, education and psychological support for patients.
We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We do this through the About Cancer pages on our website, our news and resources, and our range of health awareness leaflets.
Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.
If you have a question about cancer, you can contact our team of specialist cancer information nurses. Call free on 0808 800 4040, 9am to 5pm, Monday to Friday. To talk in your preferred language, ask for our interpreting service. Or you can send us a question online.
Specific organisations and sites
Myeloma UK is dedicated to funding research, providing information and supporting those with myeloma. They produce booklets, which are available on their website, or they will send you an information pack. They can provide a list of myeloma support groups in the UK. They have an online discussion forum and myeloma TV.
This organisation does not have a patient forum, but works closely with Myeloma UK. The website has information about clinical trials that are taking place in the UK and guidelines for the diagnosis and treatment of myeloma. This is really a site for researchers and doctors with an interest in myeloma, and much of the information is written in a very scientific way.
Bloodwise is the new name for Leukaemia and Lymphoma Research. They sponsor research into leukaemia, lymphoma and myeloma. They also provide patient information booklets and leaflets that you can download or order from their website.
General support organisations
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments.
Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm; information is available in other languages)
Textphone: 0808 808 0121
Booklets and factsheets
Myeloma UK has a large range of publications covering different treatments and aspects of coping with myeloma. These are all available to download from their website. Or they can send you a copy in the post. Examples of their publications include:
- balloon kyphoplasty
- myeloma bone disease and bisphosphonates
- osteonecrosis of the jaw
- caring for someone with myeloma
- high dose therapy and autologous stem cell transplantation
- living well with myeloma – your essential guide
- smoldering myeloma
- myeloma and the kidney
- myeloma – an introduction
- myeloma – your essential guide
- patients hints and tips book
- pain and myeloma
- serum free light chain assay
Many of Macmillan's publications are available as audio books.
- healthy eating and cancer
- lost for words – how to talk to someone with cancer
- sexuality and cancer
- understanding myeloma
- understanding allogeneic (donor) stem cell transplant
- understanding high dose treatment with stem cell support
- work and cancer
- help with the cost of cancer
- working while caring for someone with cancer
Bone marrow and stem cell transplantation
- undergoing high dose therapy and autologous stem cell transplant
- dietary advice for haematology patients with neutropenia
- solitary plasmacytoma
Videos of people's stories
Find out about the experience of living with and beyond cancer by seeing and hearing people share their personal stories on film. Healthtalk’s researchers created a library of interviews with people who have survived for 5 years or more after a cancer diagnosis.
Find out what people said about issues such as lifestyle choices, physical effects and the impact on work and family.
Find local cancer support and information services
NHS Choices has a service that tells you about local information and support.