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Resources and organisations

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.

Helpline: 0800 980 3332 (Freephone Mon to Fri, 9.00am to 5.00pm)
Phone: 0131 557 3332
Email: myelomauk@myeloma.org.uk
Website: www.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, and much of the information is written in a very scientific way.

Website: www.ukmf.org.uk

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. 

Telephone: 020 7504 2200
Email: info@bloodwise.org.uk
Website: www.bloodwise.org.uk

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.

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 

Information and help

Dangoor sponsorship

About Cancer generously supported by Dangoor Education since 2010.