Myelodysplastic Syndromes (MDS) A Guide for Patients Introduction Being diagnosed with a myelodysplastic syndrome (MDS) can be a shock, particularly when you may never have heard of it. This booklet has been written to help you understand more about MDS. It describes what the various forms are, how they are diagnosed and treated and also the expected outcome (prognosis). It will also provide information on coping with the emotional impact of an MDS diagnosis. For more information, your Bowen, Honorary Professor of haematologist or clinical nurse Myeloid Leukaemia Studies and specialist will be able to provide Consultant Haematologist at St advice that is specific to your James’s Institute of Oncology. The diagnosis. booklet has also been reviewed by patients and we are grateful This booklet has been to Chris Dugmore and Claudia written by Dr Sally Killick, Richards for their valuable Consultant Haematologist; Dr contribution. Dominic Culligan, Consultant Haematologist; Philip Alexander, Throughout this booklet you will Counsellor and Cognitive see a number of quotations. These Behaviour Psychotherapist; are the real experiences of MDS Geke Ong and Janet Hayden, patients and will hopefully help Clinical Nurse Specialists; and you to understand your situation peer reviewed by Professor David a bit better. 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: 11/2018 2 www.leukaemiacare.org.uk Review date: 10/2021 In this booklet Introduction 2 In this booklet 3 Acknowledgements 4 About Leukaemia Care 6 MDS at a glance 10 Who gets MDS and why? 12 Signs and symptoms 13 Diagnosis 14 What are the types of MDS? 17 What is the prognosis of MDS? 19 Treatment of MDS 22 The psychological impact of MDS 33 Living with MDS 44 MDS specialist centres and 53 other useful organisations Glossary 58 Appendix 60 Helpline freephone 08088 010 444 3 Acknowledgements This booklet has been compiled assistance and advice to by MDS UK Patient Support Group, patients and families affected Leukaemia Care and Bloodwise by myelodysplastic syndromes. in a joint collaboration. Although We offer a helpline, newsletter, you are reading the version website, chat forum and meeting supplied by Leukaemia Care, groups nationwide to facilitate all of the wording is the same contact with other MDS patients in each organisation’s booklet. and their families. Based at King’s This booklet does not endorse College Hospital, MDS UK is the any specific product or brand only national support group solely – any names mentioned are for dedicated to MDS. information only. About Leukaemia Care Acknowledgements and further Leukaemia Care is dedicated to thanks to The Irish Cancer Society providing information, support for their permission to use and advice to blood cancer information and images from patients, their carers and loved their MDS booklet. ones. This booklet has been endorsed Whether they need a listening ear by the Leukaemia & Lymphoma NI from our Patient Advocacy team, charity. a buddy to chat to who has been Leukaemia & Lymphoma NI funds in a similar position, a visit to research into the causes and one of our support groups or good cures of leukaemia, lymphoma quality, trusted information about and myeloma in Northern Ireland. a diagnosis, treatment or side effects, we are here for them all. Contributing charities About Bloodwise About MDS UK We’re the UK’s leading blood MDS UK Patient Support cancer research charity. We fund Group provides information, research to improve treatment 4 www.leukaemiacare.org.uk and care for people living with all types of blood cancer, and we provide anyone affected with information and support. Helpline freephone 08088 010 444 5 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 found on our website at www. leukaemiacare.org.uk/support- Helpline and-information/help-and- Our helpline is available 9.00am - resources/information-booklets/ 10.00pm on weekdays and Support Groups 9.00am - 12.30pm on Saturdays. If you need someone to talk to, Our nationwide support groups call 08088 010 444 are a chance to meet and talk to other people who are going Nurse service through a similar experience. We have two trained nurses on For more information about a hand to answer your questions support group local to your area, and offer advice and support, go to www.leukaemiacare.org. whether it be through emailing uk/support-and-information/ [email protected], support-for-you/find-a-support- over the phone on 08088 010 444 group/ or via LiveChat. 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 has been affected by a blood way. You can speak to someone cancer. A full list of titles – both who knows what you are going disease specific and general through. For more information information titles – can be on how to get a buddy call 6 www.leukaemiacare.org.uk 08088 010 444 or email service, LiveChat (9am-5pm [email protected] weekdays). Online Forum Campaigning and Advocacy Our online forum, Leukaemia Care is involved in www.healthunlocked.com/ campaigning for patient well- leukaemia-care, is a place being, NHS funding and drug for people to ask questions and treatment availability. If you anonymously or to join in the would like an update on any of discussion with other people in a the work we are currently doing or similar situation. want to know how to get involved, email advocacy@leukaemiacare. Patient and carer conferences org.uk Our nationwide conferences provide an opportunity to Patient magazine ask questions and listen to Our quarterly magazine patient speakers and medical includes inspirational patient professionals who can provide and carer stories as well as valuable information and support. informative articles by medical professionals. To subscribe go Website to www.leukaemiacare.org.uk/ You can access up-to-date communication-preferences/ information on our website, www.leukaemiacare.org.uk, as well as speak to one of our care advisers on our online support Helpline freephone 08088 010 444 7 Your details: Date of diagnosis My diagnosis/type of MDS Cytogenic results Date Details and Good, normal or poor chromosome affected 8 www.leukaemiacare.org.uk Name Contact details Consultant haematologist Specialist nurse GP Haematology day care unit Haematology inpatient ward Emergency contact number Helpline freephone 08088 010 444 9 Myelodysplastic syndromes at a glance What are This results in the number of blood cells in the bloodstream myelodysplastic being reduced. This is referred to syndromes? as a ‘cytopenia’. Some patients The myelodysplastic syndromes, have just one type of blood cell or MDS for short, are a group of that is low (such as red blood diseases in which the production cells), however, sometimes MDS of blood cells by the bone marrow can cause a reduction in all the is faulty. It is a type of cancer and types of blood cells. When this sometimes may be referred to as occurs, it is called ‘pancytopenia’. bone marrow failure. The bone marrow is located inside some of Can MDS lead to any your bones and it is the factory other conditions? where blood cells are made. It is In addition to low blood counts, here where the problem lies. the myelodysplastic syndromes The bone marrow makes three share a common tendency to main types of blood cells: develop into acute myeloid leukaemia (AML) over time. In 1. Red blood cells that carry MDS, the bone marrow has a oxygen around the body number of immature abnormal cells called blasts. In some 2. White blood cells that fight patients with MDS the number infections of blasts increases with time. 3. Platelets that prevent bleeding Leukaemia (AML) is defined as having more than 20% blast cells. What causes MDS? The risk of AML occurring depends In MDS, the bone marrow is on the type of MDS, but some usually more active than normal, patients may never progress to yet the blood cells it produces AML. are not healthy (we refer to that as ‘dysplastic’); do not work as You can find out more about well as they should and many AML in factsheets and booklets die either before they reach the available from Bloodwise and bloodstream or shortly afterwards. Leukaemia Care. 10 www.leukaemiacare.org.uk Is MDS a cancer? You do not need to MDS is a form of bone marrow learn everything about cancer, although its progression into leukaemia does not always MDS at once. You can occur. It is included in the World keep this booklet and Health Organisation Classification refer back to it, reading of Haematopoietic (blood and different sections as bone marrow) Tumours. and when you’re ready. Helpline freephone 08088 010 444 11 Who gets MDS and why? MDS is a rare disease. It may be previous chemotherapy or diagnosed at any age but it is very radiotherapy. rare in children and young adults. Inherited disorders – very This booklet deals with MDS • rarely, MDS can be inherited or occurring in adults. may develop from another rare The typical age for patients to blood disorder. For this reason, develop MDS is around 75 years young patients may be tested old. About 9 out of 10 patients for any diseases that are linked are over 50 years at the time to MDS. However, for the vast of diagnosis. Men are slightly majority of patients, MDS will more likely than women to be not be passed down to children diagnosed with MDS.