Relapse in Acute Myeloid Leukaemia (AML)
A Guide for Patients Introduction
A relapse is the return of leukaemia after treatment. Specifically, this booklet is about a relapse in acute myeloid leukaemia (AML).
You may be feeling frightened, This booklet was written by Bilal disappointed and upset after Bham, and updated by our Patient going through your treatment Information Writer, Isabelle course only for it to return. Leach. The booklet was reviewed This booklet aims to help you by Victoria Grandage. Thank you understand better what relapse to Julie Quigley for providing means, what the next steps are, valuable feedback as a patient what your options are regarding reviewer. treatment, how to deal with loved ones, how to manage your emotions, and what help and support is available to you.
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: 10/2019 2 www.leukaemiacare.org.uk Review date: 10/2021 In this booklet
Introduction 2
In this booklet 3
About Leukaemia Care 4
What is AML? 6
What is a relapse? 8
Diagnosis 10
Treatment 12
Seeing your doctor 14
Telling your family 16
Managing your emotions 18
Survivorship 22
Palliative care 24
End of Life Care 26
Glossary 30
Useful contacts and further support 31
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 quarterly 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 What is AML?
All blood cells are made from blood stem cells in the bone marrow. Myeloid stem cells are derived from blood stem cells, and develop into healthy white blood cells, red blood cells and platelets.
New immature white blood cells more common in people over 75, are called myeloblast cells, and but can affect people at any age, can’t perform the functions including children. that mature cells can. Normally, these blood cells are made in How is AML treated? a controlled way in the bone Your treatment for AML depends marrow. When this process goes on the type of AML you have, out of control, many immature your age, medical fitness, risk of and abnormal cells (leukaemia relapse, and length of remission. cells) are produced. These cells overcrowd the bone marrow and You may have already received prevent healthy mature blood either intensive or non-intensive cells from being made. Some of treatment: the leukaemia cells flow into the 1. Intensive therapy involves two blood and circulate through the phases of chemotherapy, called bloodstream around the body. remission induction therapy These leukaemia cells don’t and consolidation therapy, function like healthy white blood which may or may not involve a cells, which leads to an increased stem cell transplant. risk of infection. 2. Non-intensive treatment, Myeloid leukaemia becomes given to patients who can’t acute when the cells progress tolerate invasive treatment, quickly. involves gentler chemotherapy, How common is AML? given either in hospital or at home to give patients an AML is diagnosed in around 3,100 excellent quality of life for as people annually in the UK. AML is long as possible.
6 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 7 What is a relapse?
You may have successfully completed treatment for AML. However, as can happen sometimes, the leukaemia has returned. When the levels of leukaemic cells have risen beyond those considered remission (when all tests show absence of leukaemia), this is called a relapse or recurrence of leukaemia.
AML relapse affects about 50% can only detect one leukaemia of all patients who achieved cell in every 100 cells. However, remission after initial treatment, using specialist techniques and can occur several months such as flow cytometry (which to several years after treatment. involves detecting the cells However, every patient carries the using antibodies) or molecular risk of relapse, and the majority of techniques (which involve relapses occur within two to three detecting DNA/RNA) means years of initial treatment. that they are able to detect very low levels of leukaemia (one Your AML may have relapsed for a leukaemia cell in every 100,000 variety of reasons: cells) called minimal residual ••It could be that your AML disease (MRD). The lower the level was resistant to your initial of MRD, the better the prognosis. treatment Experiencing relapse after ••The treatment may not have treatment will be very removed all leukaemic cells disappointing and upsetting. ••The leukaemic cells have spread Your leukaemia specialist will to other parts of the body and advise you on how best to have were initially too small for it treated, and map out the most detection beneficial approach for you, in terms of treatment, quality of life, When looking down the and support. microscope, haematologists
8 www.leukaemiacare.org.uk Signs and symptoms of You might also experience fewer common symptoms, such as a relapse swollen lymph nodes showing You may be experiencing some of up as lumps and bumps on your the same symptoms as you did at neck, armpit and groin. your initial AML diagnosis. Between 2% and 9% of AML Your symptoms may include: patients also develop chloromas, which are a collection of Anaemia •• leukaemia cells, which appear ••Bruising as a solid lump or nodule. This can be in the skin or within other ••Infections areas of the body including lymph ••Aching bones nodes and solid organs such as the brain or testes. ••Swollen glands ••Feeling tired and run down ••Fever and sweats ••Headaches ••Blurred vision ••Breathlessness
Helpline freephone 08088 010 444 9 Diagnosis
How AML relapse is involved, as well as give some indication as to how easy it will diagnosed be to treat. These will help your In the same way that you were healthcare team decide on the initially diagnosed with AML, you best treatment for you. will undergo the same tests to confirm an AML relapse. ••Lumbar puncture – where a small sample of the fluid that At the hospital surrounds your brain and spinal cord is taken to check for Your haematologist will take leukaemia cells. you through general questions about your health, ask you about ••Chest X-ray - to see if there are any illnesses and symptoms any swollen lymph nodes in consistent with relapsed AML and your chest. check you for enlarged lymph nodes, spleen or liver. They will ••Immunophenotyping - also arrange for you to have some several laboratory tests are more tests, including: done on your blood and bone marrow samples, which ••Blood tests - to look at the are then analysed under a numbers of normal cells (red microscope, and subjected cells, white cells and platelets) to immunophenotyping. as well as the number of This counts the number of circulating leukaemia cells. leukaemia cells and determines whether these cells are myeloid Bone marrow test – where •• or lymphoid leukaemia cells. samples are taken from AML will be confirmed if the your bone marrow to count cells are myeloid. the numbers of leukaemia cells. These samples will ••Cytogenetics - chromosomes, be sent for cytogenetic and of which we have 46, carry your immunophenotyping testing. genetic information in the form These tests help to tell what of genes consisting of your sort of leukaemia cells are DNA. Under a microscope, your
10 www.leukaemiacare.org.uk chromosomes are checked for genetic abnormalities such as breaks and rearrangements that may be, in part, responsible for the development of your leukaemia. Not all the genetic errors can be detected this way. ••Further tests - once the results of your diagnostic tests have been received back from the laboratory, you and your healthcare team will have much more information about your AML, which will help with future treatment decisions.
Helpline freephone 08088 010 444 11 Treatment
Treatment plan Clinical trials Before deciding on the next course You may have the opportunity to of treatment, you will discuss your take part in a clinical trial. Clinical options with your healthcare team trials can involve chemotherapy to work out the best treatment plan drugs, drug combinations, and for you. Many factors will influence different delivery schedules. your team of specialists on the best There can be many advantages to way forward for your treatment, taking part for you personally, as such as taking a closer look at your well as for the wider community leukaemia cells, your age, medical by contributing to cutting edge fitness, risk of relapse and length of medical research. You will be remission. carefully monitored during and after the study. More treatment It is important to remember that After having gone through not all new treatments work as treatment already, your next main effectively as existing treatments, decision will be like before, in that or may lead to side effects that you and your healthcare team will outweigh the benefits. If you decide have to decide if you want to opt for not to take part in a clinical trial, a) intensive treatment, which aims your decision will be respected, and to achieve remission, or b) non- you will not have to provide any intensive treatment, which aims to reasons for your decision. give you the best quality of life for as long as possible. However, do speak to healthcare staff, and share any concerns you Relapse treatment might involve may have so that they can provide more intensive chemotherapy you with the best advice moving with different drugs, or a stem cell forward. If you decide not to take transplant. Achieving a remission part in a clinical trial, you will not be can be more difficult at relapse treated any differently by hospital but is more common if your first staff, and you will be offered the remission lasted a while (several standard available treatment for years), if you are medically fit, and your stage of your AML. can have a stem cell transplant.
12 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 13 Seeing your doctor
Your symptoms Examples of questions to ask the doctor: Whatever symptoms you have, make sure you know all of them ••How would I know if I had AML and make a list that you can again? share with your doctor. ••What tests will I need to have? Your appointment ••What will the tests show? Arranging an appointment with How long will it take to get the your GP will be one of the first •• results back? things you will need to do when you start to notice symptoms. ••How common is it to have a Pick a time convenient for you relapse? that you know you will be able to attend. If there is a chance ••What sort of treatment will I that you might be experiencing need? a relapse, you will be referred to ••How long will my treatment the hospital who will be able to last? confirm this through tests. ••Will my treatment work this Your preparation time? It is important to know exactly ••What will the side effects be? what you would like to ask your doctor. Think of all the questions ••Are there any foods or you would like to ask. Make a list medications that I need to of questions and leave spaces avoid? for the answers so you can write ••Will I be able to go back to work? them down when you see the doctor. This way you can go into ••Where can I get help with the meeting ready and prepared. claiming benefits and grants?
14 www.leukaemiacare.org.uk ••Where can I get help dealing are both on the same page and with my feelings? that nothing has been missed or forgotten. Talking to your doctor Be honest with your doctor, they The next steps have seen and heard everything Always ensure that you leave the before, so there is no need to feel GP surgery or the hospital having embarrassed about anything. If shared everything you know you saw your healthcare team about your condition, with all of before seeing your doctor, be your questions answered, and sure to share with your doctor knowing exactly what the next everything your healthcare team steps are, whether it is more tests, told you about your relapse, the further treatment or palliative blood tests you had performed, care. You can ask for a summary and the next steps in your AML letter of the consultation to journey. Ask also if there will be have everything in writing. more intensive treatment or if you Furthermore, be sure to access will move on to palliative care. all of the support available to you as this may be able to help you Your support with your feelings towards your If it helps, take a family member diagnosis and treatment. or friend in with you for support. Some people take a pen and paper in to make notes, and repeat back to their doctor everything they have been told to ensure that they
Helpline freephone 08088 010 444 15 Telling your family
Planning who to tell physically and emotionally. Be sure to speak to people in an Telling your family and friends environment where both of you that you have suffered a relapse can hear each other clearly and can be difficult, especially since where there are likely to be no you already went through it with interruptions. your initial AML diagnosis. One positive aspect to this is that How to say it you already have your team in Using a conciliatory tone will place, so once they know what the help keep both yourself and the situation is, they can help and other person calm. Deliver what support you like they did before. you have to say slowly, calmly, You may want to create a list of concisely, and sentence by people you want to tell, starting sentence to allow the other person with close family and friends, and to take in the information. Be then extending it beyond, from sincere, and hold their hands if your colleagues at work to friends you need to. in your neighbourhood. You can use the following Planning what to say sentences to help you articulate It is important to know what you what you need to say: want to say and equally knowing "This is going to be difficult, but exactly how much you want •• I need to tell you something." people to know. Being clear in your mind about that before speaking ••"I’ve had some bad news but to anyone will make this a much there’s a good chance that smoother experience. Know your everything will be okay after I’ve story that you want to tell, the had treatment." diagnosis, the prognosis, the next treatment steps, and what ••"You know I’ve been feeling you expect to be going through unwell for a while. I’ve had some
16 www.leukaemiacare.org.uk tests and they’ve found out If your loved ones offer to help, tell what’s wrong." them that you will get in touch when you need them. How to respond Repeating yourself to different You may receive similar people can become burdensome. responses to when you told Your network of family and friends people about your initial AML can help you out, by telling those diagnosis. Naturally they will feel beyond them about your current sad, and concerned about you. situation. You can receive help Everyone deals with such news from us on how to deal with in their own way, from shock and telling your family and friends silence, to questions and support. about your relapse. You can visit Overwhelmingly, people respond www.leukaemiacare.org.uk, or positively, which in turn will mean call 08088 010 444, to find out you will respond back positively. more. Accepting help Sometimes people feel guilty for their cancer relapsing, that they weren’t strong enough, and that they will be a burden on those around them. This is where your loved ones come in, so make sure you do ask for and accept offers to help and support you in the next stages of your AML journey. Do not try to cope with this on your own.
Helpline freephone 08088 010 444 17 Managing your emotions
Being told that your cancer has returned may be difficult for you to deal with, especially after all your time and effort during treatment and remission.
Indeed, you may have a positive your symptoms following relapse demeanour, which will obviously and carrying on with your life will be helpful to you during the next help ease any anxieties you feel. steps in the management of your Help, care, kindness and support AML, and life beyond. However, will be available to you from your you may experience a range of healthcare team, and you will emotions, including uncertainty, have access to counsellors and isolation, and anxiety, anger, therapists as needed. sadness, and depression. Understanding each emotion and Isolation developing ways that help you If you have received a diagnosis of deal with them will help you move relapse, and the next steps don’t forward with your life. involve intensive treatment, you may feel a break in routine. You Uncertainty may feel alone because you will You may think "what happens no longer enjoy regular meetings next?" and be unsure about with your healthcare team who your health and what the future provide you with information holds for you. You may or may and reassurance, or fellow not have had meetings with your patients who can provide you healthcare team to discuss the with empathy and compassion. next steps following your relapse. Alternatively, you may feel the Once you have a clear path set out break in routine from your normal in front of you, you will be able to life in remission allows you to be develop a clearer picture of where around those closest to you. you are headed. Being around those closest to you, Gaining a sensible balance such as your family and friends, between being vigilant about can be positive and negative.
18 www.leukaemiacare.org.uk However, being clear with them therapy (CBT) can help bring your about what you do and don’t want, thoughts of worry under control. how you do and don’t wish to be treated, and what you do and Anger don’t feel comfortable talking Feeling angry after a relapse is about, will help create the kind of natural and normal. You may positive, supportive, and caring be angry with yourself, the environment that will help as you healthcare team or with family move forward with your life. and friends. You may display your anger through impatience, Anxiety irritability and frustration with Feeling fear of the unknown, people and things around you that especially when we are feeling would not normally bother you. threatened, is natural. You may experience increased heart rate, Understanding exactly what rapid breathing, and muscle is making you angry will help tension. These things help us to you deal with those feelings face a danger or run away and effectively. In addition, setting this response is known as ‘fight or achievable goals that stretch you flight’. Any feeling of discomfort, will help reduce the anger and pain or even another appointment impatience you feel, especially with your healthcare team may with each passing success. elicit such responses, and give Physical exercise is a great you sleepless nights or feelings of way to release your anger and worry. frustrations and channel those energies positively without Such reflexes and responses negatively impacting your body. will ease over time with the Talking about your feelings and building of daily routines and letting them out will also help to planning things for the future, curb you lashing out at people which will help you to move and help calm you. forward with your life. You may find that relaxation exercises can help with the physical effects of anxiety, and cognitive behavioural
Helpline freephone 08088 010 444 19 Managing your emotions (cont.)
Sadness and Self-confidence depression Being forced to readjust from your Relapsing will bring back some, daily routine during remission if not all, of the feelings you felt back into one involving multiple upon your initial AML diagnosis. visits to the hospital for further You may be feeling a sense of loss treatment, or moving into for the person you used to be and palliative care, can take its toll. how safe you felt. You may feel This interruption of your life, that your illness is a heavy burden along with your lack of energy on those around you. You might be because of your AML and the feeling low, which is part of your effects of your treatment, can illness, treatment and recovery. impact on how you feel about your However, if this low mood persists appearance and feel emotionally. for several weeks, and you feel In turn, this can knock your self- hopeless, and lose interest and confidence and self-esteem and pleasure with things in life, then your feelings of relief, hope and you may have depression. optimism are replaced with their polar opposites. Your first steps should be to contact your GP and speak to You can gradually build your self- your loved ones around you about confidence and self-esteem back your mood and state of mind. up by engaging in the activities You may lift the way you feel by you did before your diagnosis, and engaging in activities that you socialising with family, friends, were enjoying before your relapse and fellow patients. This will help and initial diagnosis, as much create a supportive atmosphere as you can, to connect back with to rehabilitate you back to your your life. Again, talking about your old self. thoughts and feelings can lighten your burden and help bring things Mindfulness and into perspective and help you deal relaxation better with your situation. Using simple techniques from mindfulness along with relaxation
20 www.leukaemiacare.org.uk Leukaemia Care offers nationwide support groups for people affected by a diagnosis of a blood cancer. Visit www.leukaemiacare.org.uk, or call 08088 010 444, to find out more and to find a group near you.
and simple exercises can help 4. Visualise that you are inhaling calm the mind, release tension positivity and exhaling and ease any pain in your negativity. muscles. By taking some time out of your 1. Put yourself in a relaxing day to do these exercises, you can environment, sitting or lying help quieten your mind to calm down comfortably. and relax you and to de-stress you from coming to terms with your 2. Loosen your clothing so you can diagnosis. move more freely. 3. Calmly breathe in through your nose, and out through your mouth, developing a steady natural rhythm, focusing on your chest and abdomen as you do so.
Helpline freephone 08088 010 444 21 Survivorship
Someone who is living with or on your health and life with cancer beyond a cancer diagnosis can be after the end of treatment until considered a cancer survivor. the end of life. At this point, your routine of meeting frequently with Survivorship can be defined as: your healthcare professionals also "...cover[ing] the physical, ends so you may feel a mixture psychosocial and economic of emotions from relief, to fear, issues of cancer, from diagnosis anxiety and uncertainty about the until end of life. It focuses on the future. You may wonder how you health and life of a person with will slot back into your life after cancer beyond the diagnosis and coming through treatment. treatment phases. Survivorship Your survivorship pathway began includes issues related to the at the point when you were ability to get health care and diagnosed with AML. By this point, follow-up treatment, late effects you will have been starting to of treatment, second cancer and receive support for work, finance, quality of life. Family members, and personal relationships friends and caregivers are through to managing pain, fatigue also part of the survivorship and making positive lifestyle experience." changes, such as starting a When living with cancer, healthy diet and physical activity. especially relapsing after Your individual needs as a patient remission, you will face new will be identified and addressed, challenges to cope with various including: needs from the physical through to the psychological and social. ••Dealing with the emotional impact of receiving a diagnosis Survivorship aims to provide of relapse, which may have personalised care based on your created feelings of uncertainty, need to improve your health, fears of recurrence and wellbeing, quality of life, and your difficulty planning for the confidence and motivation to help future. These will be discussed you manage your own health and with you to develop an wellbeing. Survivorship focuses
22 www.leukaemiacare.org.uk individualised care plan with ••Preparing you fully for support from social care staff the impact of relapse and and therapists, as required. treatment, about the physical and physiological side Improving your quality of life •• effects of treatments and the from efficient and co-ordinated psychological impact of AML care during your treatment, relapse in general, by being with effective communication provided with physical aids within the treatment team, and and being taught about various a positive attitude. coping strategies to adopt to ••Taking care of any comorbidities your new situation. – that is, other medical ••Supporting you with advice conditions and diseases for social and financial – and offering you cancer difficulties, including caring rehabilitation based on your responsibilities, inability to clinical needs as assessed by participate in social activities, informed professionals, and debt and financial worries due ensuring compliance with the to not being able to work for a National Cancer Rehabilitation long time, and perhaps needing Pathways and Rehabilitation to return before you feel ready. Peer Review requirements. ••Receiving health and nutrition Providing you with a treatment •• advice from your nutritionist summary from diagnosis of about following a healthy and your relapse to the end of your balanced diet to help improve treatment. This would include your general health and any ongoing medication and wellbeing. The World Cancer noting possible symptoms that Research Fund published a may occur in the future. You report for cancer survivors would also be provided details which suggests that even small of who to contact in addition to dietary and lifestyle changes your GP for any concerns you can produce large health may have. benefits.
Helpline freephone 08088 010 444 23 Palliative care
Palliative care in and counsellors, social care staff, physiotherapists, occupational relapsed AML therapists, complementary Palliative care, also known as therapists and religious leaders, if supportive care, involves a holistic you would like this. Your palliative or "whole person" approach, which care services may be provided by includes the management of your the NHS, local council or a charity. pain and symptoms as well as You may receive day-to-day care psychological, social and spiritual at your home and at the hospital. support for you and your loved ones. What is the clinical
Palliative care aims to reduce course? your symptoms, control your AML, You will have experienced a cycle extend your survival, and give of relapses and remissions, and you and your loved ones the best be prone to frequent infections quality of life. Your doctor will because of the disease and your discuss the options with you in treatments. Your chemotherapy detail before you decide the next may continue because of steps. potential remission and/or useful palliation. Who provides palliative You may experience various pains care? and other clinical complications Your palliative care will be such as: provided by a team of health and social care professionals ••Bone pain: Radiotherapy trained in palliative medicine who and/or oral steroids, and will coordinate your care. These sometimes non-steroidal anti- professionals can include your inflammatory drugs may be GP, hospital doctors and nurses, included, although these are community nurses, hospice staff used with caution because they
24 www.leukaemiacare.org.uk can interfere with your immune ••Spinal cord compression: system and kidney function. Immediate high single daily- dose oral steroids are required. ••Bone marrow failure: Blood and platelet transfusions ••Back pain from wedge and are provided to prevent and crush fractures of the spinal fight recurrent infections and column: Treatment can include bleeding episodes. analgesics, anti-depressants and/or anticonvulsant Oral problems: Analgesic •• medication used in tandem mouth washes and topical with opioids. ointments may help with ulceration. Chewing gum, and ••Hypercalcaemia: Treatment mouth washes, have been is usually with intravenous shown to help with dry mouth, hydration and intravenous tooth decay and oral thrush. bisphosphonates. ••Night sweats and fever: These ••Loss of appetite: Low-dose can also place a heavy burden steroids may temporarily on carers because of so many boost the appetite, while small, changes of night clothes and frequent and appetising meals bedding. and supplement drinks will also help. ••Pathological fractures: Orthopaedic intervention and subsequent radiotherapy, with consideration given to prophylactic pinning of long bones and/or radiotherapy to prevent fracture and reduce the likelihood of complex pain syndromes developing.
Helpline freephone 08088 010 444 25 End of Life Care
When does end of life Who provides end of care begin? life care? If you have relapsed and are going A team of health and social care through palliative care, you may professionals may be involved be offered end of life care. End of in your end of life care, including life care begins when you need it hospital doctors and nurses, your and may last a few days, months GP, community nurses, hospice or years. staff and counsellors, social care staff, physiotherapists, What does end of life occupational therapists, care involve? complementary therapists and religious leaders, if you would End of life care is support for like this. Your GP will have overall people who are in the last few responsibility for your care if you months or years of their life. The are being cared for at home or aim is to help you enjoy a good in a care home, and community quality of life until you die, and to nurses, along with family and die with dignity. The professionals friends, will be involved in your looking after you will ask care. you about your wishes and preferences on how to be cared What choices do I have for and put these into action. They will also provide support to your in terms of end of life family, carers and loved ones. You care? will be able to decide where you Deciding where you want to die will receive end of life care, be it at can be a difficult choice to make. home or in a care home, hospice Working out what you and your or hospital. The same will be true loved ones want and seeing what of where you would like to die. services are available to you can Wherever you are, you will receive help to make the decision a little high quality end of life care.
26 www.leukaemiacare.org.uk easier. These can be private or run by a charity or the local council so Staying at home – a place of •• be sure to check if there are any familiarity, surrounded by your fees. loved ones, may be something that you will find reassuring. ••Hospitals – although you may External care professionals will be used to staying in a hospital be able to visit you at home to ward, the care routine cannot make sure your symptoms are always be tailored specifically looked after. to you as it is often busy. Pressures on the NHS mean that Hospices – specialised in •• your stay will only be as long looking after those with life- as strictly required. As soon as limiting illnesses and those the condition requiring hospital who are coming to the end of admission has been resolved, their life, hospices are staffed you will need to go back to your with care professionals who home or nursing home. However, are able to keep an eye on you, a number of specialists will make sure that your symptoms be available to help look after are controlled and offer you a specific problems, and a number of services to make number of hospitals also have a your stay as comfortable as designated palliative care team possible. For more information for patients who require them. on the care that they can provide, go to www.hospiceuk. Whatever your choice, speak org to your GP or healthcare team who will able to help you put Residential care/nursing •• everything into place. homes – if you think that your stay may be a few months or so, then a nursing home may be more suitable than a hospice.
Helpline freephone 08088 010 444 27 End of Life Care (cont.)
Where can I seek support about end of If you think that life care? counselling might be Coming to terms with end of life beneficial for you, your care can take some time and GP or medical team you may feel like you need some may be able to put you support with this. There are a in touch with a suitable number of external organisations that can help you. therapist. To find one local to your area, go to Marie Curie www.bcap.co.uk Marie Curie offer care and support for anyone with a terminal or life- threatening illness as well as their families. They are able to offer you information as well as being able Where can my loved to provide expert nursing care in ones seek support? the home or through one of their As well as yourself, you may hospices. find that your loved ones may www.mariecurie.org.uk need some help coping with you starting end of life care. Charities Tel: 0800 090 2309 are available that can provide support specifically for the people who care for you.
28 www.leukaemiacare.org.uk Carers UK Carers UK is available to provide If you or your loved expert advice for carers all around ones need any more the UK. They offer support in local communities and help to information or support, campaign for changes to policies contact the National and services that affect carers Council for Palliative and the loved ones they care for. Care – responsible www.carersuk.org for the Dying Matters coalition – on Tel: 0808 808 7777 020 7697 1520 or go to Email: [email protected] www.ncpc.org.uk Carers Trust Carers Trust work to directly impact on the lives of unpaid carers through the support, services and advice that is available to them. They also offer tailored help to suit whatever circumstances you may be in to try and makes things a little easier to cope with through activities and replacement care to offer respite. www.carers.org
Tel: 0844 800 4361
Email: [email protected]
Helpline freephone 08088 010 444 29 Glossary
Acute Myeloid Leukaemia (AML) Palliative care A rapid and aggressive cancer Also known as supportive care, of the myeloid cells in the bone this is a type of care that focusses marrow. on improving the quality of life for a patient with a life-threatening Chloromas illness and their loved ones. Tumours of myeloid leukaemic cells occurring outside of the Relapse bone marrow, usually associated A relapse occurs when a patient with acute or chronic myeloid initially responds to treatment, leukaemia. Chloromas can occur but after six months or more, anywhere in the body. the response stops. This is also sometimes called a recurrence. Cytogenetics A test to check the chromosomes Remission in your DNA for abnormalities. When all tests indicate the absence of an illness. Immunophenotyping A process that uses antibodies to Stem cell transplant identify cells based on the types A transplant of stem cells derived of antigens or markers on the from part of the same individual surface of the cells. This process or a donor. is used to diagnose specific types of leukaemia and lymphoma Survivorship by comparing the cancer cells A focus on the life of someone to normal cells of the immune with cancer after diagnosis and system. treatment.
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30 www.leukaemiacare.org.uk Useful contacts and further support
There are a number of helpful Bloodwise sources to support you during Bloodwise is the leading charity your diagnosis, treatment and into the research of blood cancers. beyond, including: They offer support to patients, ••Your haematologist and their family and friends through healthcare team patient services. ••Your family and friends 020 7504 2200 ••Your psychologist (ask your www.bloodwise.org.uk haematologist or CNS for a Cancer Research UK referral) Cancer Research UK is a leading Reliable online sources, •• charity dedicated to cancer such as Leukaemia Care research. Charitable organisations •• 0808 800 4040 There are a number of www.cancerresearchuk.org organisations, including ourselves, who provide expert Macmillan advice and information. Macmillan provides free practical, Leukaemia Care medical and financial support for people facing cancer. We are a charity dedicated to 0808 808 0000 supporting anyone affected by www.macmillan.org.uk the diagnosis of any blood cancer. We provide emotional support Maggie’s Centres through a range of support Maggie’s offers free practical, services including a helpline, emotional and social support patient and carer conferences, to people with cancer and their support group, informative families and friends. website, one-to-one buddy service and high-quality patient 0300 123 1801 information. We also have a nurse www.maggiescentres.org on our help line for any medical Citizens Advice Bureau (CAB) queries relating to your diagnosis. Offers advice on benefits and Helpline: 08088 010 444 financial assistance. www.leukaemiacare.org.uk [email protected] 08444 111 444 www.adviceguide.org.uk
Helpline freephone 08088 010 444 31 Leukaemia Care is a national charity dedicated to providing information, advice and support to anyone affected by a blood cancer.
Around 34,000 new cases of blood cancer are diagnosed in the UK each year. We are here to support you, whether you’re a patient, carer or family member.
Want to talk?
Helpline: 08088 010 444 (free from landlines and all major mobile networks) Office Line: 01905 755977 www.leukaemiacare.org.uk [email protected]
Leukaemia Care, One Birch Court, Blackpole East, Worcester, WR3 8SG Registered charity 259483 and SC039207