Resources and organisations
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 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 them a question online.
Cancer Chat is our online forum where you can share experiences.
Leukaemia support organisations
Blood Cancer UK funds 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
Email address: support@bloodcancer.org.uk
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.
Freephone helpline: 08088 010 444
Chat via WhatsApp on 07500068065
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, open Monday to Friday 9am to 5pm
Email: patientinfo@anthonynolan.org
The NHS Blood and Transplant service runs the blood donation scheme and organises the supply of blood products. They also run the British Bone Marrow Register (BBMR). The BBRM helps find people stem cell matches.
Telephone: 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, India, Africa and the United States.
People between the ages of 18 to 55 and are in general good health can join the register.
Email: info@dkms.org.uk
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
ISBN 9780740786310
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
ISBN 978-1847090805
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
ISBN 978-0859699990
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
ISBN 978-0763777609
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.
Healthtalk.org
Provides free, reliable information about health issues including mental health, by sharing people's real-life experiences.
Find local cancer information and support near you
There are organisations and support in your local area that you can access. You can ask your specialist nurse or doctor for more information about cancer services near you.
England
NHS Choices has a service that tells you about local information and support in England.
Scotland
NHS Inform gives information about illness, treatments and NHS services for people in Scotland.
Wales
NHS 111 Wales gives health advice and information for people living in Wales.
Northern Ireland
Cancer Focus Northern Ireland have a cancer information helpline and resource centre. They provide public and professional education, rehabilitation programmes and support groups for patients and relatives.
Cancer nurse helpline: 0800 783 3339 Monday - Friday 9am to 1pm
Email: nurseline@cancerfocusni.org
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.
