This website has been funded and developed by Abbvie and is intended for UK audiences only.
Helping people to live with CLL
MyCLLife is a campaign to support and empower people whose lives have been impacted by chronic lymphocytic leukaemia (CLL). Whether you are living with or know someone living with CLL, this website is dedicated to help you play an active role in your or their care.
What is chronic lymphocytic leukaemia (CLL)?
Chronic lymphocytic leukaemia, also known as CLL, is a type of cancer that affects the blood and bone marrow.1 It is the most common type of leukaemia diagnosed in adults, with around 4,700 people in the UK receiving a diagnosis each year.1,2
Leukaemia: This means it is a type of blood cancer. When white blood cells work normally, they help your body fight infection and illness. Leukaemia specifically refers to the over-production of abnormal white blood cells, meaning they are unable to work effectively as part of the immune system.
Lymphocytic: This refers to the type of white blood cells affected by CLL, which are called lymphocytes.
Chronic: This means that the cancer is ‘slow growing’.
Hear directly from people living with CLL as they explain what CLL is, the symptoms that might be present, what causes it, and ways they manage.
What happens after a diagnosis?
After receiving a CLL diagnosis, many people won't need treatment straight away, and some may not need treatment at all.3 Instead, they will have regular medical examinations and blood tests to determine whether the disease is stable or beginning to progress. This approach is called active monitoring or ‘watch and wait’.3
Finding out that you have cancer and not immediately receiving treatment can be unsettling and may feel counterintuitive; however, remember there will be regular check-ups with your healthcare team and the CLL will be carefully monitored during active monitoring.
Throughout this process, it may be beneficial to focus your energy on your mental and physical health, so that if the time for treatment comes, you feel more prepared. This is often called “prehabilitation”.
It is important to work with your healthcare team to consider your treatment goals and make decisions about your care together.
These discussions are about your health, so it’s important to think about what outcomes matter the most to you. This is often referred to as ‘shared decision-making’.
Listen to Consultant Haematologist, Dr Dima El-Sharkawi, and Stuart, who is living with CLL, as they share their thoughts on how to prepare for appointments and have productive discussions to make decisions together.
My role in active monitoring and preparing for treatment discussions
If you’ve been diagnosed with CLL, it’s important to take the time during active monitoring to learn more about CLL. Hearing from others, who have gone through a similar experience, can help you to improve your understanding of the condition and make you feel more settled.
There are certain steps that you can take to be prepared for when the time for treatment comes. These include increasing your knowledge about your condition and building the confidence to speak openly with your healthcare team. Not only will this help you to understand your CLL symptoms more deeply, but it could improve your relationship with your healthcare team and encourage more open communications, so if your symptoms do change, you can effectively work with them to identify the right time for treatment and when to go and speak to your doctor.
Developed in partnership with a group of people living with CLL, patient group CLL Support Association and Consultant Haematologist Dr Dima El-Sharkawi, this booklet provides support and guidance on steps you can take during active monitoring to be physically and emotionally prepared when the time for treatment approaches.
Within the booklet, you will find:
A thought flow tool that helps you consider what you’d want from treatment and how to communicate this to your doctor.
Dr Dima El-Sharkawi's perspective on interactions with her patients and what healthcare professionals consider at each stage of the CLL journey.
Learnings and top tips from other people’s CLL experiences.
References:- NHS. What is chronic lymphocytic leukaemia? Available at: https://www.nhs.uk/conditions/ chronic-lymphocytic-leukaemia/ [Last accessed July 2024]
- Leukaemia UK. Chronic Lymphocytic Leukaemia. Available at: https://www.leukaemiauk.org.uk/ about-leukaemia/types-of-leukaemia/chronic-lymphocytic-leukaemia-cll/ [Last accessed July 2024]
- Blood Cancer UK. Active monitoring (watch and wait). Available at: https://bloodcancer.org.uk/ understanding-blood-cancer/active-monitoring/ [Last accessed July 2024]
UK-ONCC-240015 | July 2024
This website has been developed and funded by AbbVie and is intended for UK audiences only. This resource is not intended to provide or replace expert medical advice. Please consult your healthcare professional for further information.
Reporting of side effects: If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at www.mhra.gov.uk/yellowcard. By reporting side effects, you can help provide more information on the safety of a medicine.
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MyCLLife is a disease awareness initiative developed and funded by AbbVie, with input and support from the CLL community.
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UK-ONCC-240012 | July 2024
