Late Effects of Treatment A Guide for Patients Introduction Your cancer treatment can cause side effects. Some of these will occur at the time of treatment and will normally stop when treatment ends. Some of these side effects may last for a long time after treatment; these are long- term effects. Some side effects do not occur for months or even years after treatment ends; these side effects are called late effects. These late effects can be physical or emotional. Not everyone gets late effects, the risk depends on the type of treatment, the dose of treatment and the patient’s age at the time of treatment. This booklet is designed to and peer reviewed by Dr Panos provide you with information Kottaridis, Royal Free Hospital. about the late effects you may The rewrite was put together by experience, what to expect and Lisa Lovelidge and reviewed by how they may be managed. If Dr Victoria Grandage. We are also you need specific advice or are grateful to our patient reviewers, concerned about a particular Simon Walker, John Watson and late effect, please contact your Steve Colbourne and the Brighton medical team or Clinical Nurse support group. The booklet has Specialist. since been updated by our Patient Information Writer, Isabelle Leach. This booklet has been compiled by Dr Victoria Grandage (UCLH) If you would like any information on the sources used for this booklet, please email [email protected] for a list of references. Version 3 Printed: 10/2020 2 www.leukaemiacare.org.uk Review date: 10/2022 In this booklet Introduction 2 In this booklet 3 About Leukaemia Care 4 A note from our patient services team 6 The different types of side effects 8 Fatigue 10 Eye, hearing and mouth changes 12 Skin and nail side effects 14 Bone and joint issues 16 Endocrine changes 18 Cognitive function effect 22 Lymphoedema 23 Lung toxicity 24 Heart toxicity 26 Kidney and liver toxicity 28 Nerve side effects 31 Secondary cancers 32 Managing late effects 34 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 available 8:30am information titles – can be – 5:00pm Monday - Friday and found on our website at www. 7:00pm – 10:00pm on Thursdays leukaemiacare.org.uk/support- and Fridays. If you need someone and-information/help-and- to talk to, call 08088 010 444. resources/information-booklets/ Alternatively, you can send Support Groups a message via WhatsApp on Our nationwide support groups 07500068065 on weekdays are a chance to meet and talk 9:00am – 5:00pm. to other people who are going Nurse service through a similar experience. 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] 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 way. You can speak to someone Website who knows what you are going You can access up-to-date through. For more information information on our website, on how to get a buddy call www.leukaemiacare.org.uk. 08088 010 444 or email [email protected] Campaigning and Advocacy Online Forum Leukaemia Care is involved in campaigning for patient well- Our online forum, being, NHS funding and drug www.healthunlocked.com/ and treatment availability. If you leukaemia-care, is a place would like an update on any of for people to ask questions the work we are currently doing or anonymously or to join in the want to know how to get involved, discussion with other people in a email advocacy@leukaemiacare. similar situation. org.uk Patient and carer conferences Patient magazine Our nationwide conferences Our magazine includes provide an opportunity to inspirational patient and carer ask questions and listen to stories as well as informative patient speakers and medical articles by medical professionals: professionals who can provide www.leukaemiacare.org.uk/ valuable information and support. communication-preferences/ Helpline freephone 08088 010 444 5 A note from our Patient Services team We know that sometimes the late effects of treatment can be more difficult to manage than the illness itself. Sometimes the effects can be unexpected or more severe than you anticipated. We are aware that many patients have lots of questions about the late effects of treatment and how to deal with them and we hope this booklet helps to answer some of them. We have indicated the effects that are most commonly experienced by patients and not all late effects feature in this booklet. This does not mean that what you are experiencing is not related to your illness or treatment, so if you are at all worried, please speak to your medical team. If you have any questions about the information in this booklet or you want to know where you can get more information, please call us on 08088 010 444, where a member of the Patient Services team or a dedicated trained volunteer will be ready to answer your questions. Best wishes, The Patient Services Team 6 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 7 The different types of side effects Most of the treatments used late side effect. for patients with leukaemia Long-term side effects: Side (chemotherapies, chemo • effects that are permanent and immunotherapies, radiotherapy remain long after treatment and stem cell transplants) can is finished. The development cause side effects. However, not of lung fibrosis 10 years after everyone experiences side effects treatment is an of example of a with treatment since people react long-term side effect. differently, and some patients do not have any side effects at all. Acute side effects of Side effects from treatment may treatments for leukaemia be acute, late or long-term. and have been discussed in are distinguished as followed: our booklet Common Side • Acute side effects: Side Effects of Treatment. You effects that occur during and can download a copy of the immediately after treatment. booklet from our website Most side effects are short-lived at www.leukaemiacare. and reversible, disappearing org.uk or request a copy after treatment ends. For by emailing support@ example, nausea and hair loss leukaemiacare.org.uk occur at the time of receiving or calling the helpline on treatment and usually stop 08088 010 444. once the drug is stopped. Late side effects: Side effects • In this booklet, we discuss the that occur after treatment and late side effects and long-term may continue for a certain side effects of treatment for period after treatment is leukaemia. These side effects may finished. These are also known be physical or emotional and may as delayed side effects. Bone not show up for months or years loss occurring two years after after you have finished treatment. treatment is an example of a Late and long-term side effects 8 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 8 vary from patient to patient, • Eye, hearing and mouth ranging from very mild to serious. changes Not everyone gets late effects; the Skin and nail side effects risk depends on type of treatment, • dose and age when treated. • Bone and joint issues When you receive follow-up • Endocrine and thyroid changes care, your haematologist will discuss any possible late or long- • Cognitive or thinking effects term side effects that you may • Lung toxicity experience because early medical attention often can lessen any • Heart toxicity issues that can come from late or Nerve side effects long-term side effects. • Kidney and urinary toxicity As treatments for leukaemia • have become more effective, • Secondary cancers our knowledge of late and long- term side effects has increased. Many newer treatments have been developed to reduce the number and intensity of late, and particularly long-term, side effects. Certainly, many of the treatments used now are much less likely to cause health problems than those used 20 years ago. Possible late and long-term side effects of patients receiving cancer treatment include: • Fatigue Helpline freephone 08088 010 444 9 Fatigue Fatigue may be experienced adrenal-axis is the name for a during treatment, but it can also complex pathway of hormonal last for years after treatment is interactions between the finished. It is one of the most hypothalamus and pituitary common long-term side effects gland in the brain and the adrenal and is experienced by 33% of glands situated on top of the patients with acute myeloid kidneys (Figure 1). It is known leukaemia. as the central stress response system and links the central Fatigue is a tiredness or feeling nervous system and endocrine of exhaustion which leaves you system. unable to work or perform your usual activities. Fatigue can be Other more obvious causes of late experienced either physically or or long-term fatigue can include: psychologically, and can affect Ongoing pain. your ability to do everyday tasks, • as well as your mental ability. • Chemotherapy with drugs such as vincristine, vinblastine, and The reasons why persistent cisplatin often cause fatigue fatigue occurs following through and beyond completion treatment for cancer are not yet of treatment.