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Relapse in Chronic Lymphocytic Leukaemia (CLL)

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Relapse in Chronic Lymphocytic Leukaemia (CLL) Relapse in Chronic Lymphocytic Leukaemia (CLL) A Guide for Patients Introduction A relapse is the return of leukaemia after treatment. Specifically, this booklet is about a relapse in chronic lymphocytic leukaemia (CLL). The booklet was written by our Patient Information Writer, Isabelle Leach, and peer reviewed by Helen Knight, CLL Clinical Nurse Specialist at the Centre for Clinical Haematology in Nottingham University Hospitals. We are also grateful to our patient reviewer, Amanda Salter, for their contribution. If you would like any information on the sources used for this booklet, please email [email protected] for a list of references. Version 2 Printed: 05/2019 2 www.leukaemiacare.org.uk Review date: 05/2021 In this booklet Introduction 2 In this booklet 3 About Leukaemia Care 4 What is Chronic Lymphocytic Leukaemia? 6 What is relapsed CLL? 8 Symptoms and diagnosis of relapsed CLL 12 How is relapsed CLL treated? 14 Seeing your doctor 24 Telling your family 26 Managing your emotions 28 Survivorship 32 Palliative care 34 End of life care 36 Glossary 38 Useful contacts and further support 43 Helpline freephone 08088 010 444 3 About Leukaemia Care Leukaemia Care is a national charity dedicated to ensuring that people affected by blood cancer have access to the right information, advice and support. Our services has been affected by a blood cancer. A full list of titles – both Helpline disease specific and general Our helpline is supported by information titles – can be our Patient Advocacy team from found on our website at www. 8.30am - 5.30pm on weekdays. leukaemiacare.org.uk/support- A nurse is available on Mondays and-information/help-and- from 9.00am - 5.00pm, Tuesdays resources/information-booklets/ to Thursdays 9.30am - 2.00pm Support Groups and Thursday and Fridays evening from 7.00pm - 10.00pm. If you Our nationwide support groups need someone to talk to, call are a chance to meet and talk 08088 010 444 to other people who are going through a similar experience. Nurse service For more information about a We have two trained nurses on support group local to your area, hand to answer your questions go to www.leukaemiacare.org. and offer advice and support, uk/support-and-information/ whether it be through emailing support-for-you/find-a-support- [email protected], 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 way. You can speak to someone information on our website, who knows what you are going www.leukaemiacare.org.uk. through. For more information on how to get a buddy call Campaigning and Advocacy 08088 010 444 or email Leukaemia Care is involved in [email protected] campaigning for patient well- being, NHS funding and drug Online Forum and treatment availability. If you Our online forum, would like an update on any of www.healthunlocked.com/ the work we are currently doing or leukaemia-care, is a place want to know how to get involved, for people to ask questions email advocacy@leukaemiacare. anonymously or to join in the org.uk discussion with other people in a similar situation. Patient magazine Our quarterly magazine Patient and carer conferences includes inspirational patient Our nationwide conferences and carer stories as well as provide an opportunity to informative articles by medical ask questions and listen to professionals. To subscribe go patient speakers and medical to www.leukaemiacare.org.uk/ professionals who can provide communication-preferences/ valuable information and support. Website You can access up-to-date Helpline freephone 08088 010 444 5 What is Chronic Lymphocytic Leukaemia? In chronic lymphocytic leukaemia lymphatic vessels, which run (CLL), the lymphocytes in the adjacent to the small blood bone marrow start multiplying vessels in the body, drain lymph excessively leading to large fluid from all over the body to numbers of abnormal, immature clear excess fluid and act as cells called blasts, which prevent a blood filter helping to fight the bone marrow from producing infection with the help of the enough healthy blood cells of all B-cells and T-cells. types. Lymphocytes are a type of CLL is the most common form of white blood cell involved in the leukaemia in adults in Western immune response. countries. Approximately 3,500 There are three types of adults are diagnosed with CLL lymphocytes: each year in the UK alone, which is equivalent to 10 new cases B-cells produce antibodies 1. every day. Slightly more men than that seek out and immobilise women tend to be affected by CLL bacteria, viruses, and toxins and it is often diagnosed in older which invade the body. people, being diagnosed in 59% of 2. T-cells destroy the invading people aged 70 years and over. For organisms that have been reasons that are not understood, tagged by the B-cells as well CLL is more common in White as cells that have become people and less common in Asian cancerous. populations. The disease is rarely, if ever, seen in children. 3. Natural killer (NK)-cells attack cancer cells and viruses. Full details of the characteristics, diagnosis and treatment of All these types of white blood CLL are given in the Patient cell are found in the blood, bone Information Booklet titled marrow, and lymphatic system. chronic lymphocytic leukaemia The lymphatic system is a part (CLL), which is available on of the immune and circulatory the Leukaemia Care website at systems. A network of small 6 www.leukaemiacare.org.uk https://www.leukaemiacare.org. uk/support-and-information/ help-and-resources/ information-booklets/ In this booklet, relapse in CLL will be examined. Helpline freephone 08088 010 444 7 What is relapsed CLL? In patients with CLL who require • Blood and bone marrow at treatment, the mainstay the cell level (cytogenetic of the treatment is chemo remission): Diseased cells immunotherapy, which consists have been greatly reduced, or of chemotherapy to which no longer appear, in the bone immunotherapy is added. Where marrow. the CLL cells have a particular Blood and marrow at the chromosome abnormality, • molecule level using sensitive such as a 17p deletion or TP53 tests such as polymerase mutation, a novel agent such chain reaction analysis or as ibrutinib is used instead of flow cytometry (molecular chemotherapy. remission): No evidence of The nature of CLL as a chronic disease in the blood cells and/ disease means that it is not or bone marrow is seen at all. a curable disease, and that a relapse is expected to happen Why does relapse at some point. A relapse is when happen? a patient initially responds to While the recent treatment of leukaemia therapy but, after CLL with chemo-immunotherapy six months or more, response has resulted in improved patient to treatment stops. This is also responses and overall survival sometimes called a recurrence. compared to chemotherapy alone, Refractory CLL occurs when the a sizeable number of patients will cancer has not responded to first- still relapse and need subsequent line treatment (first treatment treatment. given). Relapse is often linked to the Remission can be established by cause of the CLL, particularly examining: when chromosome mutations • Blood samples are involved. These genetic (haematological remission): characteristics are useful for Blood counts return within predicting how the CLL will normal ranges. progress, and which patients will 8 www.leukaemiacare.org.uk respond to therapy or relapse. with standard CLL patients and patients with lower-risk For patients with CLL, analysis chromosomal abnormalities. of chromosomes has detected several reoccurring mutations: Another indication of a reduced survival rate in CLL is an 13q deletion - 55% of patients • unmutated immunoglobulin • 11q deletion - 18% of patients variable region heavy chain (IgVH) gene. This gene is responsible • 17p deletion - 7% of patients for generating antibodies used previously untreated and 30% of by the immune response. IgVH patients who relapsed mutation status has identified • Trisomy 12 (3 copies of two subtypes of CLL that have a chromosome 12) - 16% of differing clinical course: patients 1. Patients with a mutated IgVH Patients with 13q deletion tend have a subtype of CLL which is to have good prognoses and slow to progress and with little patients with trisomy 12 have an symptoms. These patients have intermediate prognosis. Therefore, a better prognosis. these patients may be more 2. Patients without a mutated fortunate in avoiding relapses. IgVH have an aggressive Patients with 11q deletion and subtype of CLL with a poorer 17p deletion are known to have a prognosis, a shorter duration shorter time before relapse where of complete remission and a further treatment will be required. greater chance of relapse. Deletion of chromosomal region The mutation status of IgVH can 17p13 results in the loss of one be detected by DNA sequencing. of the variants of the TP53 gene. DNA sequencing involves This abnormality is predictive of determining the exact order of a poor response to treatment and the four organic molecules (also is associated with the shortest called nucleotides: adenine, time before relapse compared guanine, cytosine, and thymine) Helpline freephone 08088 010 444 9 What is relapsed CLL? (cont.) which make up a molecule of DNA. first line treatment is around five years. When it has been identified How often does relapse that the disease has come back, occur? further treatment options will be discussed with you by your doctor. Despite the encouraging Details of these are given in the responses in patients with section ‘How is relapsed CLL CLL who have received chemo- treated?’ immunotherapy, most patients will relapse at some point within the first five years of starting treatment.
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