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Home , Azacitidine, Busulfan, Daunorubicin, Etoposide, Hydroxycarbamide

Hydroxycarbamide for Acute Myeloid Leukaemia (AML)

A Guide for Patients Introduction

Hydroxycarbamide (also sometimes called hydroxyurea) is a drug which is used in patients with acute myeloid leukaemia (AML), chronic myeloid leukaemia (CML) and myeloproliferative neoplasms (MPNs) to reduce the high numbers of certain cell types in the blood. In acute leukaemia it is mainly used to control the numbers of immature cells called ‘blasts’ in the blood.

This patient information booklet This booklet was compiled is for patients, their family by Saloua Najjam and peer members, friends and carers reviewed by one of our medical who would like to know more professionals specialised in about this drug. So, we will try leukaemia, Nurse Advisor Fiona and answer some questions like Heath. We are also grateful for what is hydroxycarbamide, who the contribution of our patient receives it, how it is administered, reviewer, Stuart Johnson. This what are the side effects and what booklet was then updated by other possible treatments are out our Patient Information Writer, there if hydroxycarbamide does Isabelle Leach. not work.

If you would like any information on the sources used for this booklet, please email [email protected] for a list of references.

Version 4 Printed: 01/2020 2 www.leukaemiacare.org.uk Review date: 01/2022 In this booklet

Introduction 2 In this booklet 3 About Leukaemia Care 4 What is hydroxycarbamide? 6 Who receives hydroxycarbamide? 8 How is hydroxycarbamide administered? 10 What are the side effects of hydroxycarbamide? 12 What happens if hydroxycarbamide doesn’t work? 14 Glossary 16 Useful contacts and further support 19

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 hydroxycarbamide?

Hydroxycarbamide is a of blood cells: red blood cells, chemotherapy drug known as an white blood cells and . and is used mainly Depending on which types of for the treatment of myeloid blood blood cells are over-multiplying . Antimetabolite drugs in the , patients will interfere with the synthesis of have different myeloproliferative DNA, and therefore prevent the neoplasms such as: growth or reproduction of cells. ••Polycythaemia vera primarily As an antimetabolite, involving over-production of red hydroxycarbamide prevents the blood cells excessive production of the blood Essential thrombocythaemia cells in proliferative diseases. It •• primarily involving over- is also useful in AML to reduce production of platelets the high numbers of leukaemic white blood cells, and has also ••Myelofibrosis involving demonstrated an antileukaemic fibrosis and inflammation effect when used in combination within the bone marrow. with other drugs. Some patients have increased numbers of white blood cells Acute myeloid leukaemia (AML) is or platelets which might a blood cancer which affects the need to be controlled using myeloid cells, which include red hydroxycarbamide cells, platelets and some white blood cells. When you have AML, Some myeloproliferative diseases it stops your body producing progress slowly and need little enough of these cells and it treatment, while others develop overproduces tumour cells in the more rapidly and transform into bone marrow which replace the AML. normal cells. Hydroxycarbamide is also used as Myeloproliferative neoplasms supportive treatment for patients are disorders of the bone marrow with chronic myeloid leukaemia which contains three major types (CML), although it does not alter

6 www.leukaemiacare.org.uk the course of their CML. In CML this is often for a temporary basis at the time of initial diagnosis to help reduce a high white cell count while patients are started on more definitive treatment agents such as tyrosine kinase inhibitors (like , nilotinib or dasatinib). Supportive treatment is treatment given to prevent, control or relieve complications and side effects, and to improve the patient’s comfort and quality of life.

Helpline freephone 08088 010 444 7 Who receives hydroxycarbamide?

Hydroxycarbamide can be given to polycythaemia vera or essential the following patients: thrombocythaemia).

Patients with AML as part of Because of its antimetabolite combination chemotherapy or properties which slow down or as supportive treatment: stop the growth of cells in your body, hydroxycarbamide can also At the time of initial diagnosis •• be used for: to control a high white blood count while the patient is ••Certain types of head and neck assessed and commenced on cancers and definitive treatment •• ••In the palliative setting where (hydroxycarbamide helps to it is being used as supportive prevent the formation of the care to control the white sickle-shaped red blood cells) blood count and reduce the risk of complications such If you wish to have further as (thrombosis, information on AML, CML strokes, respiratory distress or myeloproliferative etc). Many of these patients are disorders, please view ‘end of life’ and have exhausted our patient information active treatment options by this booklets that are available stage on our website at www. Patients diagnosed with CML as leukaemiacare.org.uk supportive treatment, alone or with radiation , in the chronic or accelerated phase of the disease.

Patients with a myeloproliferative disorder (myelofibrosis,

8 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 9 How is hydroxycarbamide administered?

Hydroxycarbamide is of hydroxycarbamide may be administered orally, usually as reduced when there is evidence capsules. It is also available as an of low levels of red blood cells, oral solution and as tablets. It is neutrophil white blood cells or normally taken as an outpatient. platelets. Tablets and capsules must be swallowed whole with plenty Regular monitoring of water. It is usually taken on Because of the effect of a daily basis and the dose will hydroxycarbamide on the sometimes need to be adjusted bone marrow, patients taking by your doctor quite regularly in hydroxycarbamide should have response to changes in your full regular monitoring before and blood count. during treatment.

In the palliative treatment setting, Blood samples for monitoring the if a good clinical response is full blood count, renal function, seen and the hydroxycarbamide and levels, uric is able to control the high white acid level and enzyme levels blood cell count, then it may be will be taken regularly. Patients continued indefinitely while the receiving long-term therapy for response is maintained. AML and CML should be monitored The dose of hydroxycarbamide for secondary malignancies. will depend on several factors, , lactation including your height and weight, your general health, the type of and fertility cancer or condition being treated Hydroxycarbamide should not and your count. be taken by women who are, Your doctor will determine your or may be, pregnant as it can dose and schedule. harm the baby. Drugs which affect DNA synthesis such as The length of treatment will vary hydroxycarbamide, may be according to your disease and capable of introducing a genetic response to treatment. The dose

10 www.leukaemiacare.org.uk mutation. For the same reason, men who are contemplating conception should not take hydroxycarbamide. Male and female patients should be advised to use adequate contraception before and during treatment with hydroxycarbamide. Fertility in males might be affected by treatment with hydroxycarbamide and they should be advised about sperm storage before they start treatment with hydroxycarbamide.

Hydroxycarbamide is excreted in human breast milk and should not be taken by women who are breast feeding.

Helpline freephone 08088 010 444 11 What are the side effects of hydroxycarbamide?

Everyone will experience ••Tiredness – Tiredness is often different side effects with worse towards the end of your hydroxycarbamide. The most treatment and for some time common side effects are shown after it has finished. Try to pace below. It is important to report yourself and get as much rest side effects to your doctor as you need. Regular and gentle or nurse so that they can be exercise can also help. managed and treated effectively. ••Diarrhoea – Make sure you Common side effects drink at least two litres of fluid a day. Your doctor can prescribe ••Risk of – drugs to control your diarrhoea. Hydroxycarbamide may reduce the number of white cells in •• – Try to drink at your blood which might make least two litres of fluid a day. Try you more likely to get an to eat more foods that contain infection. high levels of fibre such as fruit, vegetables and wholemeal ••Bruising and – bread. Hydroxycarbamide can reduce the number of platelets in your ••Sore mouth – Your mouth may blood. Platelets are cells that become sore and you may help your blood to clot. Tell develop mouth ulcers. Frequent your doctor if you experience mouth care is very important. any unexplained bruising or – Your hair may thin, bleeding. •• but you are unlikely to lose all ••Anaemia – Your red blood cells the hair from your head. It is may be reduced. These cells almost always temporary and carry oxygen around the body, your hair will grow back after so if your count is the treatment ends. low then you may feel tired and Increased – As the breathless. If you do feel like •• hydroxycarbamide breaks down this, contact your doctor as you the cancer cells, uric acid is may need a . released. Too much uric acid can

12 www.leukaemiacare.org.uk cause swelling and pain in the ••Effects on the lungs – joints, which is called gout. Hydroxycarbamide can cause damage to the lungs. Always Tumour lysis syndrome - A •• tell your doctor if you develop serious side effect that may a cough, , wheezing or occur if the white blood breathlessness as this may be cells are destroyed rapidly an indication of this. is tumour lysis syndrome. The greatly increased blood ••Skin damage – The use of uric acid levels may cause prolonged hydroxycarbamide damage to the kidneys, heart can cause skin ulceration. Also, or liver. Patients can be given the risk of skin cancer is also allopurinol and fluids to treat increased. or prevent the symptoms of tumour lysis syndrome which For more information include renal problems, heart about the common side rate disturbances, , effects of treatment, you and due to multi-organ can order our booklet failure. Allopurinol is a drug to via our website www. reduce the production of uric leukaemiacare.org.uk or acid in the body and is used for the treatment of gout, by calling the helpline on stones and certain patients 08088 010 444. with cancer. Uncommon side effects ••Nervous system disorders – , , drowsiness and convulsions. ••Skin and subcutaneous tissue disorders – , discoloured nails and partial or complete body hair loss (alopecia).

Helpline freephone 08088 010 444 13 What happens if hydroxycarbamide doesn’t work?

Hydroxycarbamide is •• and may administered to patients with be oral alternatives for MPNs AML as supportive treatment to and can be possible options for reduce the number of leukaemic palliative AML. white blood cells. Cytotoxic (cell destroying) If patients with AML respond to chemotherapy is one of the best first-line treatment of ways to reduce high leukaemic and , the need for white blood cell counts. Low-dose hydroxycarbamide to reduce chemotherapy such as cytarabine high numbers of leukaemic or has been used cells is uncommon. Similarly, in AML patients to achieve a the introduction of the tyrosine gradual decrease of the number of kinase inhibitors has transformed leukaemic white blood cells. the treatment of CML. Therefore, Another option is leukapheresis hydroxycarbamide is mainly used which removes large numbers of in patients who are not fit enough white blood cells from the blood. for intensive chemotherapy, This process involves collecting which includes elderly patients blood from a vein in one arm, and those with other illnesses, or passing it through a machine to patients who are resistant to first- remove the excess of white blood line treatment. cells, and then re-inserting the Other drugs like blood back through a vein in the hydroxycarbamide include: other arm. ••Interferon alpha for MPNs, and occasionally CML. •• for essential thrombocythaemia, and sometimes myelofibrosis, as it is useful in reducing the number of platelets.

14 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 15 Glossary

Acute Myeloid Leukaemia (AML) stopping them from dividing. A rapid and aggressive cancer of the myeloid cells in the bone Salts and minerals in the blood marrow. that help conduct electrical Anaemia impulses in the body. They include sodium, potassium, chloride and A condition where the number of bicarbonate among others. red blood cells are reduced. Red blood cells contain haemoglobin Essential Thrombocythaemia and transport oxygen to body A myeloproliferative disease cells. This may be due to a lack characterised by an increased of iron, leukaemia, or sickle cell number of platelets which leads disease. to frequent blood clotting and/or Antimetabolite bleeding. A drug that interferes with Full Blood Count the enzymes necessary for A full blood count is performed on DNA synthesis, and therefore a blood sample using automated preventing growth or reproduction equipment to provide the of cells. concentration of haemoglobin in Bone Marrow the blood, measures of red cell components, the white cell count, The soft blood-forming tissue including the different types of that fills the cavities of bone white cells, and the count. and contains fat, immature and mature blood cells, including the Leukaemia white blood cells, red blood cells A group of cancers that usually and platelets. begin in the bone marrow Chemotherapy and result in high numbers of abnormal white blood cells. These Drugs that work in different ways white blood cells are not fully to stop the growth of cancer cells, developed and are called blasts either by killing the cells or by

16 www.leukaemiacare.org.uk or leukaemia cells. Depending Sickle Cell Disease on the type of white blood cell An inherited blood disorder involved, the leukaemia will have where abnormal sickle-shaped varying characteristics, such as red blood cells are formed in the being acute (develops quickly) or bone marrow and break down chronic (develops slowly). prematurely, leading to anaemia and crises as small blood vessels become blocked. A myeloproliferative disease, involving the red blood cells and Tyrosine Kinase Inhibitors granulocyte white blood cells, in A drug that inhibits the tyrosine which the normal bone marrow kinase enzymes which activate tissue is gradually replaced with a many of the proteins for cell fibrous scar-like material. growth. Inhibiting or blocking Polycythaemia Vera tyrosine kinases can prevent cancer cell growth. A myeloproliferative disease where an excess of red blood cells White Blood Cell (or are produced as a result of an Leukocytes) abnormality of the bone marrow. White blood cells are one of the The high number of red cells types of cells found in the blood increases the blood’s thickness and bone marrow, along with (viscosity). red blood cells and platelets. The Platelet main role of white blood cells is creating an immune response A small blood cell that helps the against both infectious disease body form clots to stop bleeding. and foreign invaders. There are Red Blood Cell several different types of white blood cells, and each has a A small blood cell that contains different role. The granulocytes, haemoglobin and carries oxygen so called because they contain to all tissues of the body. small granules in their cells, include the neutrophils (protects

Helpline freephone 08088 010 444 17 Glossary (cont.)

against bacterial 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, which do not have granules in their cells, include the lymphocytes (recognises bacteria, viruses and toxins, to which they produce antibodies) and monocytes (clears infection products from the body).

18 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 19 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