There are lots of organisations, support groups, books, videos and other resources to help you cope with chronic lymphocytic leukaemia 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.
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.
We also have news, health awareness leaflets and other resources on cancer.
Leukaemia support organisations
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.
Nurse or support team number: Freephone 08088 010 444 (Monday to Friday 9am to 10pm, Saturdays 9am to 12:30pm).
The CLL Support Organisation provides information and support to people with chronic lymphocytic leukaemia and their carers. It also promotes research into the treatment of CLL.
Tel: 0800 977 4396
Blood and bone marrow organisations
Anthony Nolan runs one of the largest bone marrow donor databases in the world. It has regional centres which are listed on its website. It also provides information about being a stem cell or bone marrow donor.
It is looking for people in good health aged 16–30 to join the Anthony Nolan register. In particular, they need more young men and people from black and minority ethnic communities to sign up.
General enquiries: 0303 303 0303
The National Blood Service runs the blood donation scheme and organises the supply of blood products. They also run the British Bone Marrow Register (BBMR).
Tel : 0300 123 23 23
DKMS used to be called Delete Blood Cancer. It aims to provide a matching donor for every blood cancer patient in need of a blood stem cell donation. It has offices in the UK, Germany, Chile, Poland and the United States. The register now has more than 300,000 people in the UK.
People between the ages of 18 to 55 and are in general good health can join the register.
Phone: 020 8747 5620
Other support and information 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
The American National Cancer Institute has patient information about chronic lymphocytic leukaemia. It is detailed and comprehensive.
Booklets and factsheets
Information is available as booklets, audiotapes and CDs.
- Understanding chronic lymphocytic leukaemia
- Understanding chronic myeloid leukaemia (also on CD)
- Healthy eating and cancer
- Lost for words – how to talk to someone with cancer
- Sexuality and cancer
- Understanding donor stem cell (allogeneic) transplants (also on CD)
- Understanding chemotherapy (also on CD)
- Understanding cancer research trials (clinical trials)
- Understanding radiotherapy (also on CD)
- Talking to children and teenagers when an adult has cancer (also on CD)
- Talking about your cancer
- Chronic lymphocytic leukaemia (CLL)
- Chronic myeloid leukaemia (CML)
- Hairy cell leukaemia (HCL)
- Donor lymphocyte infusion (DLI) – what's involved?
- Newly diagnosed with a blood cancer
- Watch and wait – monitoring while treatment is not necessary
- Undergoing high dose therapy and autologous stem cell transplant
Books about cancer and treatment
A Ko, E Rosenbaum and M Dollinger
Andrews McMeel Publishing, 2009
The author and contributors of this book are all American cancer specialists. The book covers how cancer is diagnosed, treated and managed day to day.
Dr Terry Priestman
Sheldon Press, 2009
Gives information about chemotherapy, its side effects, and how to cope with them. Also discusses the effect of chemotherapy on everyday life, including tiredness, sex life and fertility, social life, work, holidays, exercise and diet.
Dr Terry Priestman
Sheldon Press, 2007
Gives information about radiotherapy, its side effects, and how to cope with them. Also discusses the effect of radiotherapy on everyday life, including social life, work, travel, exercise and diet.
J F Kelvin and L B Tyson
Jones and Bartlett Publishing, 2010
An American book which gives both doctor’s and patient’s views on coping with the symptoms of cancer and the side effects of treatment. It has information about treatment for pain, nausea, tiredness, and other symptoms.
Videos of people's stories
Hear what it's like to live with and beyond cancer, from people who have shared their personal stories on film.
Healthtalk has an online library of interviews with people who have lived for 5 years or more after a cancer diagnosis. See what they say about lifestyle choices, physical effects, work, family and more.
Find local cancer information and support
NHS Choices helps you to find local cancer information and support.
Recommending a book
Contact us if you would like to recommend a book that you have found helpful. It helps us if you include the title, author, publisher's name and year, and ISBN number.