“People living with CLL sometimes struggle to navigate their complex path, including managing treatment side effects while on BTKi treatment. This comprehensive information guide provides a useful resource of advice and practical tips that can help those living with CLL – and their friends or family who are often an additional source of support – to better understand the specifics of BTKi treatment, and how to get the most out of life.”
Peter Haggert, Chair and Steering Committee member, CLL Advocate Network
Starting BTKi treatment
Your healthcare team, relatives and friends are there to support you, but when the time comes to start BTKi treatment, finding information about the therapy along with any possible side effects can be a difficult and overwhelming experience.
We can help.
BTKi Treatment for CLL: A Patient Information Guide
Results from a survey indicate that people living with CLL need more information and support, with over half of patients (55%) reporting that they were not offered or directed to any support at time of diagnosis.1 There is also a lack of information at the start of leukemia treatment and care, most notably on side effects.1
This guide is a comprehensive resource that will support you throughout your CLL treatment path, providing practical information and advice about living with and being treated for CLL. It also looks in detail at a widely used type of targeted therapy for the disease called BTKis.
The information provided in the guide is about BTKi therapy generally and does not replace reading the patient information leaflet (PIL) that comes with your specific medicine. You should refer to the PIL for important safety information about the medicine that you are taking.
This guide has been developed specifically for you, in collaboration with experts and other people living with CLL, who understand the challenges you face and the questions you have.
“The way you navigate your treatment entirely depends on your own personal and individual lifestyle. What works for one individual, might not work for another.”
Person living with CLL
This guide will support you to:
Understand more about CLL and how it is managed after diagnosis.
Find out how your BTKi treatment works and what a typical programme looks like so you know what to expect.
Learn how to talk to your healthcare team/family and friends, what questions to ask and understand medical terms you may hear during your treatment for CLL.
Know the possible side effects of BTKi therapy, its impact on psychological and emotional wellbeing and what actions you can take to help manage these side effects to get the most out of treatment.
Taking your BTKi as prescribed is critical to how well it works and in fact, high adherence to treatment has been linked to longer remission times, fewer side effects, and an overall improved quality of life.2 BTKis have been shown to have a positive benefit-risk profile in CLL and, in many cases, are the preferred first-line option.34
However, like most medicines, BTKis can have side effects for those who take them, ranging in both commonality and severity.5 The most important thing to remember is that every patient is different and every BTKi has a different side effect profile too. Therefore, the first step is always to speak to your healthcare team about what to expect.
Common side effects of BTKi therapy vary depending on the specific therapy you are prescribed. Some of the side effects you might experience can include infections, bleeding risk (haemorrhage), diarrhoea, fatigue, neutropenia, high blood pressure, joint and muscle pain, severe cramps, skin conditions, mouth sores, nail problems and atrial fibrillation.56789101112 This guide can help you gain understanding of these potential side effects and the actions you can take to manage them, working in partnership with your healthcare team.
“Understanding and managing side effects is important and they shouldn’t be ignored. Many side effects can be managed with the assistance of your clinician or with lifestyle changes. It is also helpful to know what the side effects are, so that you can report any that might be severe and need attention. The key is talking to somebody.”
Person living with CLL
Learn more about the BTKi Treatment for CLL: A Patient Information Guide
What is the patient information guide?
What is the patient information guide?
The guide provides practical information, top tips and advice about living with and being treated for CLL. It also looks in detail at a type of targeted therapy for CLL called Bruton’s tyrosine kinase inhibitors or BTKis.
How can the patient information guide help me?
How can the patient information guide help me?
This guide can help you gain a better understanding of CLL, BTKi therapy and what you can expect during treatment while on a BTKi. Importantly, this guide will support you to live well, offer useful information about how to manage potential side effects and ensure you feel more confident to stick with your treatment.
How much does the guide cost?
How much does the guide cost?
This guide is free and available to help patients with CLL navigate their BTKi treatment path, and for carers to build their knowledge and confidence in supporting someone undergoing BTKi therapy.
Who developed this guide?
Who developed this guide?
Johnson & Johnson brought together many experts in CLL to collaborate on this guide, including people living with CLL from the CLL Advocates Network (CLLAN), Professor Patrick Thornton, Consultant Haematologist, Honorary Professor RCSI, and Clinical Director of Hermitage Medical Clinic and Beaumont Hospital Laboratory, and Geraldine Walpole, Advanced Nurse Practitioner in Haematology, Sligo University Hospital.
Where possible, contributors from specific countries were also involved in developing local language versions.
When will the guide be available in my language?
When will the guide be available in my language?
The guide is currently available in English only. Click here to download the guide now.
Where can I find more information or support?
Where can I find more information or support?
As well as your healthcare team, we would recommend looking at your local patient group websites for reliable information and support. The CLL Advocates Network (CLLAN) website is a great place to start and includes a CLLAN resource hub – a global directory of patient services and resources allowing you to search by country to find organisations providing CLL support.