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Home , Cytarabine, Hydroxycarbamide

Low-dose for Acute Myeloid Leukaemia (AML)

A Guide for Patients Introduction

Cytarabine (also called arabinoside or Ara-C) is a treatment for leukaemia, particularly acute myeloid leukaemia (AML). It can be administered at different doses, generally referred to as ‘high’, ‘intermediate’ and ‘low’. High and intermediate dose cytarabine are generally used as part of the intensive treatment of AML. Low-dose cytarabine generally refers to the doses of cytarabine commonly used in the non-intensive treatment of AML, either alone or in combination with other drugs.

This booklet was compiled by Amanda Menage, Claire Shepherd Saloua Najjam, PhD and peer and Tracy Richardson for their reviewed by one of our medical valuable contributions. professionals who is specialised in leukaemia , Dr Steve Knapper, University Hospital of Wales, Cardiff. The booklet has then been updated by our Patient Information Writer, Isabelle Leach. We are also grateful to leukaemia patients Julie Quigley,

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: 03/2020 2 www.leukaemiacare.org.uk Review date: 03/2022 In this booklet

Introduction 2

In this booklet 3

About Leukaemia Care 4

What is low-dose cytarabine? 6

Who receives low-dose cytarabine? 7

How is low-dose cytarabine administered? 8

What are the side effects of low-dose cytarabine? 10

What happens if low-dose cytarabine doesn’t work for me? 11

Glossary 12

Useful contacts and further support 15

Helpline freephone 08088 010 444 3 About Leukaemia Care

Leukaemia Care is a national charity dedicated to ensuring that people affected by blood 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 What is low-dose cytarabine?

Cytarabine (also called cytosine However, a lot of patients with arabinidose or Ara-C) is an AML are older than 60 years, and a chemotherapy large proportion of these patients drug that has been used for cannot tolerate the high- and the treatment of AML for over intermediate-dose cytarabine 40 years. Antimetabolite drugs because of interfere with the synthesis of their age, other illnesses and the DNA, and therefore prevent the likelihood of early death. the growth or reproduction of the Therefore, these patients are given leukaemia cells. low-dose cytarabine which can provide temporary control of the The doses of cytarabine given disease without excessive side to patients may be determined effects. according to their body surface area, which takes into account the Low-dose cytarabine (20mg) patient’s height and weight. Three is available to be diluted into dose regimens of cytarabine are solutions containing the generally described: appropriate dose prescribed. These solutions are suitable for High-dose cytarabine: 2000 to • subcutaneous (injection under 3000mg per square meter (mg/ the skin) and intravenous use m2) of body surface area, twice (injection or infusion into the daily over three days. vein). • Intermediate-dose cytarabine: Around 5000mg/m2 in total (given as 1000mg/m2 daily), going up to six doses of 1500mg/m2 given over five days (usually two doses on days one, three and five). • Low-dose cytarabine: 20mg given twice daily for 10 days.

6 www.leukaemiacare.org.uk Who receives low-dose cytarabine?

Low-dose cytarabine is mainly given to patients with AML who If you wish to have are older than 60 years or who further information on cannot withstand intensive AML please view our chemotherapy. collection of patient information booklets Low-dose cytarabine is that are available on sometimes used in combination our website at www. with other chemotherapies. leukaemiacare.org.uk Combinations of low-dose cytarabine with chemotherapy drugs such as and in recent clinical trials have shown possible improvements in remission rates with manageable side effects, but neither of these combinations has yet been approved for standard use in the UK.

Helpline freephone 08088 010 444 7 How is low-dose cytarabine administered?

Your doctor will see you before days, every four to six weeks. It the cytarabine is administered is sometimes given as a dose and the following clinical of 20mg/m2 once daily for 10 assessments will be carried out: days every four to six weeks. Sometimes it may be possible for Full blood count • these injections to be given in the • function tests patient’s home by a district nurse or family member, or even the • / levels as a patient themselves. measure of kidney function Generally the low-dose cytarabine These tests will be performed courses will be repeated while any before each treatment cycle. clinical benefit of the drug is seen, You will then need to read and provided the patient continues sign a consent form summarising to tolerate the treatment well. the receipt of verbal and written Sometimes patients may go on information in relation to your to receive more than 10 cycles of disease, treatment and potential treatment. It may be possible to side effects. introduce a greater time interval between cycles in the event of a Low-dose cytarabine solution sustained response. can be administered to patients as a . A subcutenous injection is given into the fatty tissue under the skin. Schedules for low-dose cytarabine Classical low-dose cytarabine for unfit patients with AML is cytarabine of 20mg given twice- daily subcutaneously for 10

8 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 9 What are the side effects of low-dose cytarabine?

Everyone will experience different • Sore mouth side effects with low-dose Muscle or joint pain cytarabine. The most common • side effects are shown below. It is • Feeling tired important to report side effects to your doctor or nurse so that • Hair thinning (or loss) they can be managed and treated • Eye problems, including redness effectively. or soreness, or increased Side effects from cytarabine are sensitivity to light dose-dependent. Therefore, they are relatively mild with low-dose Uncommon side effects cytarabine. • or pneumonia Common side effects • • , and abdominal pain (for which anti- • Inflammation of the skin at the emetics can be prescribed to injection site (as a result, the help with sickness) injection site may be changed) • Loss of appetite • Skin ulceration, itching and burning pain of palms and soles • Anaemia due to low red blood cell levels • Mild due to low platelet levels • Increased levels • Changes in renal function or urinary retention • Reversible changes to liver enzyme levels

10 www.leukaemiacare.org.uk What happens if low-dose cytarabine doesn’t work?

If after a few weeks of treatment Other than cytarabine, there are your results are not promising, a number of approved drugs your consultant will consider that could be considered as alternatives. One of them will be non-intensive chemotherapies to find similar drugs that have for treating your AML including the same effect as low-dose , cytarabine on leukaemia cells and . There may also be without any strong side effects. clinical trials available. Your doctor will discuss in more Overall, following the outcome detail how the similar drug works, of your treatment with low-dose the way of having it administered cytarabine, your consultant is the and its side effects. best person to discuss with and decide on the next step to take.

Leukaemia Care offers nationwide support groups for people affected by a diagnosis of a blood or lymphatic cancer. Visit www.leukaemiacare.org.uk, or call 08088 010 444, to find out more and to find a group near you.

Helpline freephone 08088 010 444 11 Glossary

Acute Myeloid Leukaemia (AML) and contains fat, immature and mature blood cells, including A rapid and aggressive cancer white blood cells, red blood cells of the myeloid cells in the bone and platelets. marrow. Chemotherapy Acute Lymphoblastic Leukaemia (ALL) Drugs that work in different ways to stop the growth of cancer cells, A leukaemia in which either by killing the cells or by lymphocytes start multiplying stopping them from dividing. uncontrollably in the bone marrow resulting in high numbers of abnormal, immature lymphocytes Salts and minerals in the blood called blasts. Lymphocytes are a that help conduct electrical type of white blood cell involved in impulses in the body. They include the immune response. sodium, potassium, chloride and Anaemia bicarbonate among others. A condition where the number of Full Blood Count red blood cells are reduced. Red A full blood count is performed on blood cells contain haemoglobin a blood sample using automated and transport oxygen to body equipment to provide the cells. This may be due to a lack concentration of haemoglobin in of iron, leukaemia, or sickle cell the blood, measures of the red cell disease. components, the white cell count, Antimetabolite including the different types of white cells, and the platelet count. A drug that interferes with the enzymes necessary for Induction DNA synthesis, and therefore Treatment intended to kill the preventing growth or reproduction majority of the leukaemia cells of cells. in the blood and bone marrow Bone Marrow and to restore normal blood cell production. The soft blood-forming tissue that fills the cavities of bones

12 www.leukaemiacare.org.uk Leukaemia supply oxygen to the body’s tissues, white blood cells which A group of that are fight infection and platelets which usually in the bone marrow help blood clot. and result in high numbers of abnormal white blood cells. These Platelets white blood cells are not fully A small blood cell that helps the developed and are called blasts body form clots to stop bleeding. or leukaemia cells. Depending on the type of white blood cell Red Blood Cells involved, the leukaemia will have A small blood cell that contains varying characteristics, such as haemoglobin and carries oxygen being acute (develops quickly) or to all tissues of the body. chronic (develops slowly). Remission Myeloid Cell Remission is said to have A cell originating in the bone occurred when the blood cell marrow which will eventually counts have returned to normal become the following white and there are less than 5% of blood cells: neutrophils, abnormal, immature leukaemia monocytes (present in the cells still present in the bone blood), macrophages (present in marrow. Complete remission is different tissues), basophils, and said to have occurred when there eosinophils. Myeloid cells can are no leukaemia cells anywhere also become red blood cells and else in the body. platelets. Urea Myelodysplastic Syndromes Urea is one of the main products Also called myelodysplasia, these of the breakdown of body proteins myelodysplastic disorders occur and is excreted by the kidneys when the bone marrow does not into the urine. Raised urea levels make enough normal blood cells. are associated with kidney failure. The blood cells made are not fully developed and not able to work normally. These blood cells include red blood cells which

Helpline freephone 08088 010 444 13 Glossary (cont.)

Uric Acid antibodies) and monocytes (clears infection products from A product of the metabolic the body). breakdown of purine which are the chemical building blocks of DNA. Uric acid is a normal component of urine. White Blood Cell (or Leukocytes) White blood cells are one of the types of cells found in the blood and bone marrow, along with red blood cells and platelets. The main role of white blood cells is creating an immune response against both infectious disease and foreign invaders. There are several different types of white blood cells, and each has a different role. The granulocytes, so called because they contain small granules in their cells, include the neutrophils (protects against bacterial infections and inflammation), eosinophils (protects against parasites and allergens) and basophils (creates the inflammatory reactions during an immune response). The other group of white blood cells do not have any granules in their cells, and includes lymphocytes (recognise bacteria, viruses and toxins, to which they produce

14 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 15 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

Leukaemia Care is registered as a charity in England and Wales (no.1183890) and Scotland (no. SCO49802). Company number: 11911752 (England and Wales). Registered office address: One Birch Court, Blackpole East, Worcester, WR3 8SG