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 of the USA. We fund research on all aspects of cancer from its causes to treatment and prevention.
We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We also have a range of health awareness leaflets.
Cancer Chat is a forum where you can share experiences.
Helpline freephone number: 0808 800 40 40
Administration phone number: 020 7242 0200
Leukaemia support organisations
Bloodwise sponsors 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 (Monday to Friday, 9am to 5pm)
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 a 24-hour CARE Line, support groups, patient and carer conferences, nurse education days and information and literature.
24 hour care line: 08088 010 444
Tel: 01905 755977
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 is looking for people in good health aged 16–30 to join the Anthony Nolan bone marrow register. In particular, it needs young men from black and minority ethnic communities.
Tel : 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
Other support and information organisations
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer. It's helpline gives guidance on cancer and advice on benefits. It also 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
The American National Cancer Institute has patient information about chronic lymphocytic leukaemia. It is detailed and comprehensive but there are no images.
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
Malin Dollinger, Ernest H Rosenbaum and Andrew H Ko
Publishers: Andrews McMeel Publishing, 2008
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.
Joanne Frankel Kelvin and Leslie B Tyson
Publishers: 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've 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.