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Resources and organisations

Organisations, support groups, books, videos and other resources to help you cope with myeloma and treatment.
 

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.

Helpline: 0800 980 3332 (Freephone Mon to Fri, 9.00am to 5.00pm)
Admin tel: 0131 557 3332

Email: myelomauk@myeloma.org.uk

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. Much of the information is written in a very scientific way.

Blood Cancer UK fund research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Support line: 0808 2080 888 (10am to 7pm, Monday to Friday and 10am to 1pm on Saturday and Sunday)

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

General support organisations

Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.

Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form

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.

Go to the HealthTalk website

Find local cancer support and information services

NHS Choices has a service that tells you about local information and support.

Go to NHS choices website 

Cancer Research UK information and support

Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.

We are committed to producing high quality information for people affected by cancer.  As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send us a question online.

Cancer Chat is our online forum where you can share experiences.

Information and help