Chronic Lymphocytic Leukaemia (CLL) - Starting Active Treatment
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Chronic Lymphocytic Leukaemia (CLL) - Starting Active Treatment A Guide for Patients Introduction In this booklet Introduction 2 Being diagnosed with chronic lymphocytic leukaemia In this booklet 3 (CLL) and having to start active treatment can be a shock, particularly if you were previously on Watch and Wait. If About Leukaemia Care 4 you have any questions – including when to start active treatment and likely treatments – this booklet covers the What is chronic lymphocytic leukaemia? 6 basics for you. Why change from Watch and Wait to For more specialised, tailored Advocacy Manager Charlotte active treatment? 8 advice, speak to your GP or Martin and Patient Advocacy medical team. Healthcare Liaison Officer Nick When should treatment be started? 10 York. We are also grateful to Lisa This booklet has been compiled Henley-Durcan, Michael Albero, by our Patient Information Writer What are the options for treatment after Watch and Ryan Chappell, Paul Walmsley, Isabelle Leach and peer reviewed Wait? 14 Geoffrey Brown and Lionel Levy by Helen Knight, CLL Clinical Nurse for their contributions as patient Specialist and Professor Chris reviewers. Glossary 26 Fegan from University Hospital Wales as well as our Patient Useful contacts and further support 31 If you would like any information on the sources used for this booklet, please email [email protected] for a list of references. Version 1 Printed: 08/2020 2 www.leukaemiacare.org.uk Review date: 08/2022 Helpline freephone 08088 010 444 3 About Leukaemia Care Leukaemia Care is a national charity dedicated to ensuring way. You can speak to someone Website who knows what you are going that people affected by blood cancer have access to the You can access up-to-date through. For more information information on our website, right information, advice and support. on how to get a buddy call www.leukaemiacare.org.uk. 08088 010 444 or email [email protected] Campaigning and Advocacy Our services has been affected by a blood cancer. A full list of titles – both Online Forum Leukaemia Care is involved in Helpline campaigning for patient well- disease specific and general Our online forum, being, NHS funding and drug Our helpline is available 8:30am information titles – can be www.healthunlocked.com/ and treatment availability. If you – 5:00pm Monday - Friday and found on our website at www. leukaemia-care, is a place would like an update on any of 7:00pm – 10:00pm on Thursdays leukaemiacare.org.uk/support- for people to ask questions the work we are currently doing or and Fridays. If you need someone and-information/help-and- anonymously or to join in the want to know how to get involved, to talk to, call 08088 010 444. resources/information-booklets/ discussion with other people in a email advocacy@leukaemiacare. similar situation. Alternatively, you can send Support Groups org.uk a message via WhatsApp on Our nationwide support groups Patient and carer conferences 07500068065 on weekdays Patient magazine are a chance to meet and talk Our nationwide conferences 9:00am – 5:00pm. Our magazine includes to other people who are going provide an opportunity to inspirational patient and carer through a similar experience. ask questions and listen to Nurse service stories as well as informative For more information about a patient speakers and medical We have two trained nurses on articles by medical professionals: support group local to your area, professionals who can provide hand to answer your questions www.leukaemiacare.org.uk/ go to www.leukaemiacare.org. valuable information and support. and offer advice and support, uk/support-and-information/ communication-preferences/ whether it be through emailing support-for-you/find-a-support- [email protected] or group/ over the phone on 08088 010 444. Buddy Support Patient Information Booklets We offer one-to-one phone We have a number of patient support with volunteers who have information booklets like had blood cancer themselves this available to anyone who or been affected by it in some 4 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 5 What is chronic lymphocytic leukaemia? Chronic lymphocytic leukaemia CLL normally progresses slowly are associated with a poor (CLL) is a cancer of the over months and years, although response are: B-lymphocyte cells (B-cells). 30% of people diagnosed with CLL Deletion of the chromosome Lymphocytes are a type of white will never require any treatment. • region 17p (17p deletion) blood cell. They are fundamental In some cases, the disease can to the immune response and progress more rapidly. • TP53 tumour suppressor gene fighting off infection. B-cells (TP53) mutation or deletion produce antibodies that seek contained within chromosome For more information on out and immobilise the bacteria, 17 viruses, and toxins which invade CLL, read our dedicated the body. booklet. You can download • No mutation in the it from the website www. immunoglobulin heavy chain In CLL, the B-cells in the bone leukaemiacare.org.uk variable region (IGHV) gene marrow start multiplying or order a copy via the (unmutated IGHV gene) abnormally. This leads to large helpline on 08088 010 numbers of small, immature All patients should be tested 444. lymphocyte cells, which are for TP53 deletion/mutation unable to fight infection. Their and 17p deletion prior to starting treatment. Your IGHV presence prevents the bone Chromosomal marrow from producing healthy mutation status should also be blood cells of all types. The abnormalities investigated. diagnosis of CLL requires the An important aspect of CLL is presence of 5x109/L of B-cells the presence of chromosomal or more in the blood, for at least abnormalities found in patients. three months. They can have a direct impact on the choice of treatment, should CLL is the most common form you require it, and prognosis. The of leukaemia in adults. In the type of chromosomal abnormality United Kingdom, around five to you have will hint at your six out of every 100,000 people response to treatments and the are diagnosed with it every year. It likelihood of this response. affects nearly twice as many men as women, and the average age at Abnormalities in a patient’s diagnosis is 72 years. chromosomes and genes which 6 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 7 Why change from Watch and Wait to active treatment? With other types of leukaemia, CLL having minimal impact on early treatment is advisable, their life expectancy. For some, Finding out you need to start treatment may be overwhelming but this is not true for CLL. The this means that treatment isn’t to hear, and you may experience a wide range of emotions. clinical course of CLL can be necessary to aid survival. There are a number of places that you can seek support from: variable. Some CLL patients are First-line treatments can free of symptoms and remain • • Caregivers and loved ones can be there for you at home. have side effects with the well for years. Others experience They can also attend hospital appointments with you. possibility of treatment-related symptoms quite rapidly after their Having someone else there to take in all the information complications. diagnosis and require immediate can help things seem less vast. treatment. For these reasons, the British • You may be assigned a clinical nurse specialist. They Society for Haematology, the For patients who do not have will be there to assist you with your treatment pathway. International Workshop on any symptoms and those with They can be a great source of medical and supportive Chronic Lymphocytic Leukaemia mild symptoms or disease information relating to your CLL. and the European Society for progression, the Watch and Wait Medical Oncology recommend no • Charities and organisations, including Leukaemia Care, approach is the current standard treatment for CLL patients who do of care. Your haematologist will offer a number of services that aim to offer some comfort. not have any symptoms. decide when your symptoms or You can call our helpline on 08088 010 444 to speak to a nurse or a trained member of our Patient Services team. disease progression will require The initiation of active treatment treatment. Watch and Wait is will be decided upon by your Sometimes, speaking to someone you don’t know or who also sometimes called active haematologist who will weigh up isn’t directly involved in your situation can be useful. For monitoring. The rationale for this the benefit of controlling your a full list of our other services, you can ask about this on approach is based on the fact that symptoms and the potential of our helpline, or find more information on our website www. there is no treatment available drug side effects. leukaemiacare.org.uk. to cure CLL. It is more a question • It is also important to form a positive working of managing your CLL with the relationship with your consultant. This should be based treatments available for you to lead the best life possible. on good patient-doctor communication. You should feel comfortable to seek as much information from them as The main reasons for Watch and you would like, but also be able to question something Wait are: if it doesn’t feel quite right. Having this type of working relationship with them will help you to feel supported. • Some patients can live with 8 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 9 When should treatment be started? Your medical team will determine fully assessed in each individual when to start your treatment, patient by an experienced CLL While some patients in Binet • Progressive or symptomatic as your symptoms worsen or clinician and discussed at the stage B or C may benefit from enlargement of the spleen tests reveal there is disease multidisciplinary team meeting.