Understanding

Acute Leukaemia
A guide for people with cancer,
their families and friends

Cancer
information

www.cancercouncil.com.au
Understanding Acute Leukaemia
A guide for people with cancer, their families and friends

First published June 1997. This edition September 2014.

© Cancer Council NSW 2014. ISBN 978-1-925136-39-5

Understanding Acute Leukaemia is reviewed approximately every two years. Check the publication
date above to ensure this copy is up to date.

Acknowledgements
We thank the reviewers of this booklet: Dr Sundra Ramanathan, Staff Specialist, Haematology
Department, St George and Sutherland Hospitals; Louisa Brown, Bone Marrow Transplant
Coordinator and Clinical Nurse Consultant, Calvary Mater Newcastle Hospital; Joy Contemplacion,
Clinical Nurse Educator, Haematology Oncology Ambulatory Care, St Vincent’s Health Network;
Robert Mullen, Consumer; Fiona Pearce, Cancer Information Consultant, Cancer Council NSW;
Diane Prettyman, Consumer; Christopher Rusnak, Consumer.

We would also like to thank the health professionals and consumers who have worked on previous
editions of this title.

Editor: Kerry Eyles. Designer: Eleonora Pelosi. Printer: SOS Print + Media Group.

Note to reader
Always consult your doctor about matters that affect your health. This booklet is intended as a general
introduction to the topic and should not be seen as a substitute for medical, legal or financial advice.
You should obtain appropriate independent professional advice relevant to your specific situation and
you may wish to discuss issues raised in this book with them.

All care is taken to ensure that the information in this booklet is accurate at the time of publication.
Please note that information on cancer, including the diagnosis, treatment and prevention of cancer,
is constantly being updated and revised by medical professionals and the research community.
Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred
by use of or reliance on the information provided in this booklet.

Cancer Council NSW

Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight
against cancer through undertaking high-quality research, advocating on cancer issues, providing
information and services to the public and people with cancer, and raising funds for cancer programs.
This booklet is funded through the generosity of the people of NSW. To make a donation to help
defeat cancer, visit Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113.

Cancer Council NSW

153 Dowling Street, Woolloomooloo NSW 2011
Cancer Council Helpline 13 11 20
Telephone 02 9334 1900 Facsimile 02 9334 1741
Email [email protected] Website www.cancercouncil.com.au
ABN 51 116 463 846
Introduction
This booklet has been prepared to help you understand more
about acute leukaemia. It was developed with help from a range
of health professionals and people affected by acute leukaemia.

Many people feel shocked and upset when told they have acute
leukaemia. We hope this booklet will help you, your family and
friends understand how this disease is diagnosed and treated.
We also include information about support services.

We cannot give advice about the best treatment for you. You
need to discuss this with your doctors. However, we hope this
information will answer some of your questions and help you
think about other questions to ask your treatment team.

This booklet does not need to be read from cover to cover – just
read the parts that are useful to you. Some medical terms that may
be unfamiliar are explained in the glossary. You may also like to
pass this booklet to your family and friends for their information.

If you’re reading this book for someone who doesn’t understand

English, let them know that Cancer Council Helpline 13 11 20 can
arrange telephone support in different languages. They can also call
the Translating and Interpreting Service (TIS National) on 13 14 50.
Contents
What is cancer?................................................................. 4

The blood........................................................................... 6

Key questions.................................................................... 8
What is acute leukaemia?..................................................................... 8
What types are there?........................................................................... 8
Are there other types of leukaemia? .................................................... 9
What are the risk factors?................................................................... 10
How common is it?............................................................................. 10
What are the symptoms?.................................................................... 11

Diagnosis.......................................................................... 13
Bone marrow biopsy........................................................................... 13
Chest x-ray and other imaging tests................................................... 14
Lumbar puncture................................................................................. 14
Prognosis............................................................................................ 15
Which health professionals will I see?................................................. 16
Key points........................................................................................... 17

Making treatment decisions........................................... 18

Talking with doctors............................................................................ 18
A second opinion................................................................................ 19
Taking part in a clinical trial................................................................. 19

Treatment......................................................................... 20
Chemotherapy..................................................................................... 20
Radiotherapy....................................................................................... 26
Steroid therapy.................................................................................... 27
Peripheral blood stem cell or bone marrow transplantation............... 28
Allogeneic transplant........................................................................... 29
Ongoing check-ups............................................................................. 33
Palliative treatment.............................................................................. 33
Key points........................................................................................... 34

Looking after yourself..................................................... 35

Relationships with others.................................................................... 36
Life after treatment.............................................................................. 37
What if the leukaemia returns?............................................................ 39

Seeking support .............................................................. 40

Practical and financial help................................................................. 40
Talk to someone who’s been there...................................................... 40

Caring for someone with cancer................................... 42

Children with acute leukaemia............................................................ 42
Bone marrow and blood donations..................................................... 46

Useful websites............................................................... 47
Question checklist........................................................... 48
Glossary............................................................................ 49
How you can help............................................................ 52
 What is cancer?
Cancer is a disease of the cells, which are the body’s basic building
blocks. The body constantly makes new cells to help us grow,
replace worn-out tissue and heal injuries. Normally, cells multiply
and die in an orderly way.

Sometimes cells don’t grow, divide and die in the usual way. This
may cause blood or lymph fluid in the body to become abnormal, or
form a lump called a tumour. A tumour can be benign or malignant.

Benign tumour – Cells are confined to one area and are not able
to spread to other parts of the body. This is not cancer.

Malignant tumour – This is made up of cancerous cells, which

have the ability to spread by travelling through the bloodstream or
lymphatic system (lymph fluid).

How cancer starts

Normal cells Abnormal Angiogenesis

cells

Boundary
Lymph vessel
Blood vessel

Normal cells Abnormal cells Abnormal cells Malignant or

multiply invasive cancer

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A malignant tumour that has not spread to other parts of the body
is called localised cancer. If cancerous cells grow and form another
tumour at a new site, it is called secondary cancer or metastases.

Acute leukaemia doesn’t follow the same process of spreading as

other cancers because it is a blood cancer and starts in the bone
marrow (the spongy part in the centre of the bone where blood
cells are produced). It affects the growth of certain types of white
blood cells.

With cancers that affect the blood and bone marrow, cells grow
abnormally and multiply in such a way that they crowd the bone
marrow. This reduces the bone marrow’s ability to produce
normal levels of other blood cells, which can impact on the way
the rest of the body functions.

How cancer spreads

Primary cancer

Local invasion

Angiogenesis –
tumours grow their
own blood vessels

Lymph vessel

Metastasis –
cells invade other
parts of the body via
blood vessels and
lymph vessels

What is cancer? 5
 The blood
To understand acute leukaemia, it is useful to know what blood
does in the body and where it is made.

Blood is pumped around your body to provide oxygen and

nutrients to your tissues and to remove waste products. It is made
up of three main types of blood cells, which are carried along in a
clear fluid called plasma:

2
w

Red blood cells White blood cells Platelets

carry oxygen fight infection help the blood
around the body to clot

These different types of blood cells are made in the bone marrow.
The bone marrow produces two types of immature blood cells:
• myeloid stem cells – develop into red blood cells, most white
blood cells or platelets
• lymphoid stem cells – develop into other types of white blood
cells called T-lymphocytes and B-lymphocytes.

Myeloid and lymphoid stem cells develop into blast cells (precursor
cells). These immature cells continue to mature and are released
into the bloodstream as mature blood cells. They carry out a range
of functions depending on what type of blood cell they are. If blast
cells do not mature normally, or if there are too many in the blood,
it can cause health problems such as leukaemia.

6 Cancer Council
Blood cell production
In acute leukaemia, blast cells never develop into mature white blood
cells. These abnormal blast cells are also called leukaemia cells.

Stem
cells in
bone
marrow
Myeloid Lymphoid
stem Stem cells divide into stem
cells cells
two families...

then become immature cells.

If cells are normal,

Myeloblast they mature... Lymphoblast
cells cells

Normal
white blood
cells

...but sometimes cells are

abnormal and never mature.

Leukaemia
cells

The blood 7
 Key questions
Q: What is acute leukaemia?
A: Acute leukaemia occurs when immature white blood cells
(blast cells) grow out of control and continue to divide but
never mature into normal cells. It develops suddenly and
progresses quickly.

The abnormal blast cells are known as leukaemia cells.

Because they are immature and abnormal, the leukaemia
cells do not carry out the usual function of white blood cells.
They also crowd out the normal white blood cells, preventing
them from working properly, which leads to an increased
risk of infections.

When the bone marrow fills with leukaemia cells, there is

little room for healthy red cells and platelets to be produced.
This causes a variety of health problems.

Q: What types are there?

A: There are two main types of acute leukaemia, depending on
what type of white blood cell is involved:

• acute myeloid leukaemia (AML) – a leukaemia involving

myeloid blast cells, also called myeloblasts.

• acute lymphoblastic leukaemia (ALL) – a leukaemia

involving lymphoid blast cells, which are known as
lymphoblasts. ALL is also sometimes called acute
lymphatic leukaemia.

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Q: Are there other types of leukaemia?
A: There are several different types of leukaemia. All leukaemias
start in the bone marrow and affect white blood cell
production. They are grouped depending on how quickly
the disease develops and which type of white blood cell is
affected (lymphoid or myeloid).

All leukaemia types have their own subgroups and

characteristics, and are treated differently.

Type Description

• affects immature blood cells

• occurs suddenly
• develops quickly
Acute leukaemia
• includes acute myeloid leukaemia
(AML) and acute lymphoblastic
leukaemia (ALL)

• usually affects more mature cells

• appears gradually
• develops slowly over months to
Chronic leukaemia years
• includes chronic lymphocytic
leukaemia (CLL) and chronic myeloid
leukaemia (CML)

For information about chronic leukaemia, contact the

Leukaemia Foundation on 1800 620 420 or www.leukaemia.
org.au or call Cancer Council Helpline 13 11 20.

Key questions 9
 Q: What are the risk factors?
A: The definite causes of acute leukaemia are not known, but
some factors may increase the chance of developing the
illness, including:
• exposure to high levels of radiation (such as an atomic
bomb explosion)
• previous treatment with chemotherapy or radiotherapy
• exposure to some chemicals, such as benzene, petroleum
products, paints, certain pesticides and heavy metals, over
a long period of time
• having certain genetic disorders such as Down syndrome
• viral infections
• cigarette smoking.

Q: How common is it?

A: Each year in Australia about 3200 people are diagnosed with
a form of leukaemia. Almost half of those cases are acute
leukaemia. Acute leukaemia accounts for about 1.1% of all
cancer cases in Australia.

Leukaemia is the most common type of cancer diagnosed in

people under 15.

• Acute myeloid leukaemia (AML) – More common

than ALL with about 900 people diagnosed annually, and it
is more frequently diagnosed in men. It is more prevalent
in adults than in children and becomes more common
with age.

10 Cancer Council
 • Acute lymphoblastic leukaemia (ALL) – Over 300
people are diagnosed each year. It is the most common
type of childhood cancer and usually occurs in children
1–4 years old.

Children with acute leukaemia

Children with acute leukaemia have the same types of tests and
treatments as adults. Many of the side effects and emotional issues
surrounding body image will be similar. This information booklet
applies to children, but as no two cases of acute leukaemia are the
same, you will need to discuss your child’s case in detail with their
doctors. For more information, see pages 42–45.

Q: What are the symptoms?

A: The main symptoms of acute leukaemia are caused by
continually increasing numbers of blast cells in the bone
marrow, which reduce the number of normal blood cells.
These symptoms include:

• Anaemia – Lack of red blood cells can cause a pale

complexion, weakness, tiredness and breathlessness.
These are all signs of a condition called anaemia.

• Repeated or persistent infections – Lack of normal

white blood cells can cause mouth sores, sore throats,
fevers, sweats, coughing, boils, infected cuts or scratches,
and frequent and painful passing of urine.

Key questions 11
 • Increased bruising and bleeding – Lack of platelets
can cause bruising without a bump or fall (spontaneous
bruising), nose bleeds, bleeding gums, heavy periods in
women, and small red or purple spots on the skin or
mouth (petechiae).

You may also have pain or discomfort in your abdominal or

back area from an enlarged spleen (an organ that filters and
stores blood cells).

Symptoms may appear quickly over a few weeks.

Occasionally, a person will have none of these symptoms or

vague symptoms such as an ongoing cold, and the leukaemia
is discovered during a routine blood test.

Less common symptoms

• bone or joint pain • vision problems
• swollen, tender gums • vomiting
• skin rashes • enlarged lymph glands
• headaches • chest pains
• weight loss

Within days of noticing odd bruising and cuts that

wouldn’t heal, I was having three-hour afternoon sleeps.
Judy

12 Cancer Council
 Diagnosis
An initial blood test will show if leukaemia cells are present in the
blood or if the levels of blood cells are different to what would be
expected in a healthy person.

Other tests are needed to confirm the diagnosis and determine the
type of leukaemia you have.

Bone marrow biopsy

This test is usually done to confirm the presence of leukaemia cells
and to work out the type of leukaemia. The bone marrow sample
may also be examined for chromosome and molecular changes, as
leukaemia cells are different to normal cells. The results of this test
may influence the type of treatment your doctor recommends.

When you have a bone marrow biopsy, a small amount of bone

marrow is removed from your hip bone (pelvic bone) using a long
needle. This can be uncomfortable and, at times, painful. A local
anaesthetic will be used to numb the area. You may also be given
some pain-killers and a drug to relax you. Children often have a
general anaesthetic for this procedure.

Although it can take up to 30 minutes to prepare you for the bone

marrow biopsy, the actual procedure only lasts a few minutes.

Pain relief medication may make you feel drowsy. Ask a family
member or a friend to drive you home after the biopsy.

Diagnosis 13
 Chest x-ray and other imaging tests
A chest x-ray is taken to check the heart and lungs, and to see
whether there are enlarged lymph nodes in the chest. This is
sometimes seen in certain types of ALL.

The following imaging tests may also be done to check the health
and function of your body before treatment:

• Magnetic resonance imaging (MRI) scan – Uses magnetism

and radio waves to create a detailed cross-section of pictures.

• Computerised tomography (CT) scan – Uses x-rays to take

multiple scans of the inside of your body.

• Gated heart pool scan – A small amount of your blood is

taken, mixed with some radioactive material and reinjected into
you to assess your heart’s pumping ability.

Lumbar puncture
Once you have been diagnosed with leukaemia, you may have
a lumbar puncture. This test shows if any leukaemia cells have
travelled to the fluid around your spine. The fluid is called
cerebrospinal fluid (CSF).

Everyone with ALL has a lumbar puncture, but only some people
with AML have one.

14 Cancer Council
Fluid is removed with a thin needle from a space between the
bones in the lower back. This takes a few minutes, but as it can be
uncomfortable, your doctor will use a local anaesthetic to numb
the area. In some people, this test can cause the back of the legs
to tingle when the needle goes in. This feeling is harmless and
doesn’t last long.

After the lumbar puncture, you will need to lie flat for a few hours
to reduce the chance of developing a headache. If you do get a
headache, let your doctor know so they can give you pain-killers.

If your doctor thinks the lumbar puncture may be difficult, or if

the bones in your spine have degenerated, it can be performed
under x-ray guidance.

Prognosis
Prognosis means the expected outcome of a disease. You will need
to discuss your prognosis with your doctor, but it is not possible
for any doctor to predict the exact course of your disease.

Test results, the rate and extent of leukaemia cell growth, how well
you respond to treatment, and other factors such as age, fitness and
medical history are all important factors in assessing your prognosis.

For many people, treatment can control leukaemia for years. This
is known as remission. Most children and many adults who go into
remission have a good chance of being cured with chemotherapy
and a peripheral blood stem cell or bone marrow transplant.

Diagnosis 15
 Which health professionals will I see?
Often your general practitioner (GP) will arrange the first tests
to assess your symptoms. If these tests do not rule out cancer,
you will usually be referred to a haematologist who will arrange
further tests and advise you about treatment options.

You will be cared for by a range of health professionals

who specialise in different aspects of your treatment. This
multidisciplinary team will probably include:

Health professional Role

specialises in diagnosing and treating
haematologist diseases of the blood, the lymphatic system
and bone marrow

prescribes and coordinates the course of

radiation oncologist
radiotherapy

help administer chemotherapy and provide

nurses care, information and support throughout
your treatment

cancer care supports patients and families throughout

coordinator treatment and liaises with other staff

recommends an eating plan to follow while

dietitian
you are in treatment and recovery

social worker,
physiotherapist, link you to support services and help you
clinical psychologist with any emotional, physical or practical
and occupational problems
therapist

16 Cancer Council
Key points

• There are several different radioactive material then

types of tests to diagnose reinjected into your body to
acute leukaemia. test your heart function.

• Diagnostic tests will • If you have ALL, your doctor

show what type of acute will remove some fluid from
leukaemia you have - acute your lower spine (lumbar
lymphoblastic leukaemia puncture). Only some people
(ALL) or acute myeloid with AML have a lumbar
leukaemia (AML), and puncture.
help your medical team
recommend a treatment plan. • Your doctor may talk to you
about your prognosis. This
• You will have a blood test is the expected outcome of
that will show if leukaemia what may happen to you. No
cells are in your blood. one can predict the exact
course of your disease.
• Some people have a bone
marrow biopsy. This means a • You will probably see many
small amount of bone marrow health professionals who
is removed from your hip will work together as a
bone with a needle. multidisciplinary team to
diagnose and treat you.
• You may have further tests. A haematologist, who
X-rays, MRI and CT scans specialises in treating
are painless scans that take people with blood diseases,
pictures of the inside of your will be part of the team.
body. A gated heart pool
scan means that some blood
is taken, mixed with some

Diagnosis 17
 Making treatment
decisions
Sometimes it is difficult to decide on the type of treatment to
have. You may feel that everything is happening too fast, because
acute leukaemia treatments usually start as soon as you have been
diagnosed. Check with your doctor when your treatment should
start, and take as much time as you can before making a decision.

Understanding the disease, the available treatments and possible

side effects can help you weigh up the pros and cons of different
treatments and make a well-informed decision that’s based on
your personal values. You may also want to discuss the options
with your doctor, friends and family.

You have the right to accept or refuse any treatment offered. Some
people with more advanced cancer choose treatment even if it
only offers a small benefit for a short period of time. Others want
to make sure the benefits outweigh the side effects so that they
have the best possible quality of life.

Talking with doctors

When your doctor first tells you that you have acute leukaemia, you
may not remember the details about what you are told. Taking notes
or recording the discussion may help. Many people like to have a
family member or friend with them to take part in the discussion,
take notes or simply listen.

If you are confused or want clarification, you can ask questions.

See page 48 for a list of suggested questions. If you have several
questions, ask the staff about a longer appointment.

18 Cancer Council
A second opinion
You may want to get a second opinion from another specialist to
confirm or clarify your doctor’s recommendations or reassure you
that you have explored all of your options. Specialists are used to
people doing this.

Your doctor can refer you to another specialist and send your
initial results to that person. You can get a second opinion even if
you have started treatment or still want to be treated by your first
doctor. You might decide you would prefer to be treated by the
specialist who provided the second opinion.

Taking part in a clinical trial

Your doctor or nurse may suggest you take part in a clinical trial.
Doctors run clinical trials to test new or modified treatments and
ways of diagnosing disease to see if they are better than current
methods. For example, if you join a randomised trial for a new
treatment, you will be chosen at random to receive either the best
existing treatment or the modified new treatment.

Over the years, trials have improved treatments and led to better
outcomes for people diagnosed with cancer.

It may be helpful to talk to your specialist or clinical trials nurse,

or get a second opinion. If you decide to take part, you can
withdraw at any time. For more information, call the Helpline for
a free copy of Understanding Clinical Trials and Research or visit
www.australiancancertrials.gov.au.

Making treatment decisions 19

 Treatment
Treatment usually begins as soon as a diagnosis has been made and
will depend on what type of acute leukaemia you have. You will
probably have chemotherapy and you may have radiotherapy. Other
treatments including steroid therapy, or a peripheral blood stem cell
or bone marrow transplant, may be recommended depending on
the type of leukaemia you have and your response to chemotherapy.

Chemotherapy
Chemotherapy treats cancer with anti-cancer drugs called
cytotoxics. The aim of chemotherapy is to kill cancer cells while
doing the least possible damage to healthy cells.

Chemotherapy is usually given intravenously (injected into your

veins). It is often administered via a central venous catheter (see
page 21) placed under the skin on your chest prior to treatment.
Sometimes it is given in tablet form or as an injection into the
spine during a lumbar puncture.

The drugs will mainly kill fast-growing cells, such as leukaemia

cells. However, other fast-growing cells, such as hair, mouth and
digestive tract cells, can also be affected. This can cause side
effects such as hair loss, mouth ulcers, constipation or diarrhoea.
See pages 23–24 for more information.

Treatment for acute leukaemia is given in 2–3 stages: induction,

consolidation and maintenance. Maintenance treatment is used for
ALL or a rare type of AML called acute promyelocytic leukaemia
(APML). It is not given to everyone with acute leukaemia.

20 Cancer Council
Induction chemotherapy
Induction treatment is an intensive course of chemotherapy that
usually lasts about a week with a 4–6 week recovery break. It aims
to kill as many leukaemia cells as possible to make the signs and
symptoms of leukaemia disappear (remission). The chemotherapy
is usually a combination of 3–4 drugs given intravenously.

A device called a central venous catheter can be inserted into a

vein in your chest or arm to make having regular injections more
comfortable. It can also be used to take blood samples for testing.
The catheter is inserted under a general or local anaesthetic and
usually remains in place throughout your treatment. Your nurses
will care for the catheter to prevent infections or blockages.

The chemotherapy is given as several cycles of treatment in hospital,

followed by a recovery period. Many patients stay in hospital for
2–4 weeks until their levels of blood cells (blood counts) recover.

You may also have a tablet called allopurinol and IV fluids to help
protect the kidneys against damage caused by the increase in uric
acid, a waste chemical produced as leukaemia cells are destroyed.

You will have a bone marrow biopsy to see if this treatment is

working. If it is successful, no leukaemia cells will be visible. This
means your leukaemia is in remission. However, there is a risk of
it returning without further treatment, as a very small number
of undetected leukaemia cells may survive in your body. To stop
the leukaemia coming back you will usually have the next stage of
treatment, consolidation chemotherapy.

Treatment 21
 Consolidation chemotherapy
If your leukaemia is in remission, you may be given several
more courses of chemotherapy to kill any cells that may have
survived the first treatment. This treatment is called consolidation
chemotherapy. It will be milder than induction chemotherapy and
will cause fewer side effects.

The chemotherapy can be a combination of intravenous drugs or

tablets. Depending on the types of drugs used, you will either visit
the hospital for treatment as an outpatient or stay in hospital for one
or more nights.

Maintenance chemotherapy
If you have ALL or APML, you may have a final stage of less
intensive maintenance chemotherapy. This is usually given
to prolong remission. It is given over two years, as tablets or
intravenously. You will need regular hospital visits so your doctor
can check that the drugs are working properly.

Intrathecal chemotherapy
Some people with ALL, and tablets cannot get into the fluid
less commonly AML, have around the spine, so the drugs
leukaemia cells in their spine need to be injected directly
at the time of diagnosis. In into the spinal area using a
other people, the leukaemia lumbar puncture. This is called
cells spread to the spine after intrathecal chemotherapy.
remission. Chemotherapy See page 14 for information
drugs given intravenously or as about a lumbar puncture.

22 Cancer Council
Side effects of chemotherapy
Chemotherapy drugs affect both cancerous cells and healthy
fast-dividing cells in your body. This can cause side effects such as
digestive problems, nausea, mouth ulcers, headaches, hair loss and
fatigue. Side effects vary depending on the types of drugs given, but
most are temporary and there are ways to prevent or reduce them.

Check with your doctor before using aspirin, ibuprofen, other

pain-killers or any other medicines, including herbal medicines.
These can potentially affect how chemotherapy works in your body
and may sometimes make side effects worse.

Before treatment, discuss potential side effects and how to manage

them with your haematologist. Tell your doctor or nurse about your
side effects or anything unusual you experience. They may change
or prescribe a break in your treatment, or give you medication to
relieve these side effects. The following side effects are common in
people who are having treatment for acute leukaemia:

Easy bruising or heavy bleeding from cuts or scrapes –

Chemotherapy can lower the number of platelets in your blood,
which means you will bruise and bleed more easily from cuts
and scrapes. Women who are menstruating will be given drugs
to stop monthly periods and prevent any unnecessary blood loss
while platelet counts are low. Your doctor may recommend you
have a platelet transfusion during treatment to help elevate your
platelet count.

Treatment 23
 Increased risk of infections – Chemotherapy drugs lower your
normal white blood cell count. See opposite page.

Changed bowel habits – The passing of hard, dry bowel

movements (constipation) can be caused by chemotherapy and
other types of medications prescribed during treatment. Speak to
your doctor if you are constipated, as it is important to act early
to prevent any potential complications. They may suggest you eat
more fibre or prescribe some laxatives.

Fatigue – The level of your red blood cells may drop, causing you
to feel tired and breathless (anaemia). You may be given blood
transfusions for this. Some people feel tired for weeks or months.

Dental problems – Lowered immunity can cause tooth or

gum problems. Have regular dental check-ups, but talk to your
haematologist before you have any major dental work.

Hair loss - Hair loss is a common side effect of chemotherapy and

is usually temporary. Some people find it better to cut their hair
short when it starts to fall out. Wear some form of head covering to
avoid being cold and to protect your head from direct sunlight.

Look Good... Feel Better runs free programs for men and women
on how to manage the appearance related side-effects of cancer
treatments. Call 1800 650 960 or visit www.lgfb.org.au to book into
a workshop.

24 Cancer Council
Taking care with infections
When you have chemotherapy, acute leukaemia need urgent
colds and flu may be easier to attention. Contact your doctor
catch and harder to shake off, or hospital immediately if you
and scratches and cuts may experience:
get infected easily. • a fever over 38°C (keep a
thermometer handy to check
During chemotherapy your temperature)
treatment, it is best to avoid
• chills or constant shivering
contact with people who may
have an infection. You may • sweating, especially at night
want to ask people close to • burning or stinging when
you to have a flu shot, if they urinating
are able and willing to do so.
• a new cough or sore throat
You should also ask family and
friends with a cold or the flu to • vomiting that lasts more than
a few hours
wait until they are well before
visiting. This is not practical for • constipation, diarrhoea or
people you live with, so use abdominal pain
your commonsense and try to
• unusual bleeding or bruising,
avoid close contact. such as nosebleeds, blood
in your urine or black bowel
You can reduce your risk of motions
infections by washing your
hands often, particularly before • prolonged faintness and a
rapid heartbeat
preparing food and after
touching animals. Try to avoid • breathlessness
injury, as even small cuts or • any sudden deterioration in
tears in the skin could be a your health.
possible site for infection.
Infections in people with

Treatment 25
 Infertility – Some women’s periods become irregular during
treatment but return to normal when it finishes. For other women,
chemotherapy may cause periods to stop permanently (menopause).
Menopausal women can no longer conceive a child naturally. Early
menopause may also cause bones to become weaker and break more
easily. This is called osteoporosis. In men, chemotherapy may lower
the number of sperm produced and reduce their ability to move.
This can cause infertility, which may be temporary or permanent.
Talk to your doctor about these issues before treatment starts. For
information on sexuality and intimacy, see page 36.

For more information on fertility and cancer call 13 11 20 for a copy of

Fertility and Cancer, or download from www.cancercouncil.com.au.

For more detailed information about chemotherapy and managing

other side effects such as nausea, mouth sores and hearing
changes, see Cancer Council’s Understanding Chemotherapy and
Food and Cancer booklets, at www.cancercouncil.com.au.

Radiotherapy
Radiotherapy uses x-rays to destroy cancer cells or injure them
so they cannot multiply. Radiotherapy is part of treatment for
people with ALL and, less commonly, AML. It is usually directed
at the brain and also the spine, and may sometimes be given to the
whole body in preparation for a transplant. See page 28.

26 Cancer Council
Radiotherapy treatment is painless, but it may cause some side
effects. Your radiation oncologist and haematologist will discuss
this with you and talk to you about the type of radiotherapy and
the number of treatments you will need.

Side effects
Most side effects of radiotherapy are temporary and there are ways
to reduce discomfort. The most common side effects are tiredness,
dry or itchy skin, and hair loss from your body and head.

For more information about radiotherapy, its side effects and how
to manage them, call Cancer Council Helpline 13 11 20 for a free
copy of Understanding Radiotherapy, or to access an online version
visit www.cancercouncil.com.au.

Steroid therapy
Steroids are made naturally in the body and can also be produced
artificially. Steroid therapy is often given with chemotherapy to
help destroy leukaemia cells, particularly for the treatment of
ALL. Steroid tablets are usually taken for a few weeks. However,
sometimes steroids can be given for several months.

Side effects
Side effects will vary depending on how long you have to take
steroids. Most are temporary and will gradually disappear when
you stop taking the drugs. Your medical team will monitor your
progress, but if you are concerned about particular side effects talk
to your doctor or medical team.

Treatment 27
 Steroids prescribed for a short time cause few side effects.
However, you might find your appetite increases, and you might
feel more energetic or have trouble getting to sleep. Some people
have mood swings.

Steroids taken for several months may cause fluid retention, weight
gain and high blood pressure. This can make your eyelids, face,
hands, fingers and feet puffy. The fluid retention may blur your
vision and you will be more likely to get infections. Discuss any
concerns with your medical team, so that they can help you.

Peripheral blood stem cell or bone

marrow transplantation
Stem cells can be collected from the blood stream (peripheral
blood stem cell transplant) or directly from the bone marrow (bone
marrow transplant). A transplantation may be offered to some
people with certain types of acute leukaemia to try to improve the
outcome achieved with chemotherapy alone. Your doctor will tell
you if a transplant may be helpful for your type of leukaemia.

Transplants are not done at every hospital, so you may have to

travel for treatment.

For detailed information about transplants for acute leukaemia, call

the Leukaemia Foundation on 1800 620 420 or visit the Australian
Bone Marrow Donor Registry website, www.abmdr.org.au.

28 Cancer Council
Transplant types
There are two types of transplants:
• autologous – cells are collected from your own body
• allogeneic – cells are collected from another person (donor)

The type of transplant recommended for you will depend on a

number of factors including:
• the type of leukaemia you have
• your age and general health
• the condition of your bone marrow
• the availability of a suitable donor.

Autologous transplants are rarely used as a treatment for acute

leukaemia. In 2012 only nine autologous transplants were
performed for the treatment of acute leukaemia in Australia.

Allogeneic transplants are used more often for acute leukaemia,

but are not suitable for many patients because of the risks involved
and the difficulty finding a compatible donor.

Allogeneic transplant
The allogeneic transplant process is detailed here, but your health
care team will explain the process for your individual transplant
because it can vary from person to person. An allogeneic stem cell
transplant will only be offered if the benefits outway the risks.

There are several stages of treatment and the entire procedure,

including recovery, may take many months.

Treatment 29
 Collecting stem cells
Allogeneic transplants require blood-forming stem cells
(immature cells) to be collected from another person’s blood
or bone marrow. This could be a matched family member or a
suitably matched unrelated donor initiated via the Australian
Bone Marrow Donor Registry (ABMDR).

If stem cells are collected from the blood, the donor may be given a
drug called granulocyte-colony stimulating factor (G-CSF) to help
the stem cells multiply quickly and move out of the bone marrow
and into the circulating blood. When enough stem cells have been
produced, they are collected from a vein. A drip is put into each of
the donor’s arms.The donor’s blood is passed through a machine
that separates the blood and collects the excess stem cells. This is a
continuous process that can take 2–4 hours. Only about 250 mls of
the donor’s blood is outside their body at any one time.

Umbilical cord blood

In pregnant women, an however, this tissue is rich in
umbilical cord connects the stem cells. The stem cells can
mother’s body to her baby. be collected, frozen and stored
The cord is attached to the in tissue banks for later use.
mother’s placenta, which is the
structure in the womb (uterus) Stem cells from umbilical
that links the blood supplies cord blood are mostly used in
of the mother and baby. The children but may sometimes be
cord and placenta are usually used in small adults if a suitable
discarded after the birth, donor cannot be found.

30 Cancer Council
If bone marrow is collected, the donor is given a general
anaesthetic and a needle is inserted into their pelvic bone to
remove the marrow.

Storing the stem cells

Allogeneic stem cells are usually given to you on the day they
are collected from the donor. If they are imported from another
country or collected at another hospital, they are transported
at a set temperature to keep them alive and in a good condition
suitable for transplant (viable).

Having chemotherapy or radiotherapy

You will return to hospital when you’re ready to begin
chemotherapy or whole-body radiotherapy, which aims to destroy
any remaining cancer cells in your body, in preparation for the
transplant. These treatments will also kill off the blood-forming
cells in your bone marrow, making room for new cells to grow.

You will probably experience side effects from the treatments,

such as nausea, mouth sores or hair loss. Your blood counts will
also be low, making you more at risk of infections.

Transplanting the stem cells

The stem cells are returned to you (infused) through an
intravenous drip – similar to a blood transfusion, shortly after
they are collected from the donor. This happens a day or so after
completing your chemotherapy or whole-body radiotherapy, and
depending on the amount of cells collected, can take about an
hour to infuse.

Treatment 31
 Side effects
After the transplant your blood count will be low and you may
continue to have side effects. Short-term side effects include an
increased risk of infections, bruising and bleeding more easily,
and tiredness. You may also develop mouth ulcers, feel like
vomiting or have diarrhoea. These side effects are temporary
and can be treated.

You’ll be monitored carefully for any signs of graft-versus-host

disease (GVHD). In GVHD, the donor’s cells in the transplanted
tissue (the graft) attack your own body tissue (the host), which
can cause problems in many of your organs. After the transplant,
your doctor will give you drugs to reduce the risk of GVHD and
treat the problem if it occurs.

For more information about recovering from a transplant, call the

Leukaemia Foundation on 1800 620 420 or Cancer Council Helpline
13 11 20.

Recovery
The time it takes to recover varies depending on your situation.
You can go home from hospital when your white blood count
has risen and becomes stable and your general health has
improved. If you have had an allogeneic transplant, your GVHD
must be controlled.

32 Cancer Council
Ongoing check-ups
After your treatment is over you will have regular outpatient
follow-up appointments with your doctor. Your doctor will do
blood tests to check your health.

Regular check-ups can help find a recurrence early and this gives
you the best chance of getting the disease under control.
Check-ups will continue for several years, but will become less
frequent if you have no further problems. Between check-ups, let
your doctor know immediately of any health problems.

Palliative treatment
Palliative treatment aims to improve people’s quality of life by
alleviating symptoms of cancer without trying to cure the disease.
It is particularly important for people with advanced cancer.
However, it is not just for end-of-life care and it can be used at
different stages of cancer.

Often treatment is concerned with symptom control and stopping

the spread of cancer by using chemotherapy and/or radiotherapy,
but it can also involve the management of other physical and
emotional symptoms.

For more information, call the Helpline for free printed material
on palliative care and advanced cancer, or view them online at
www.cancercouncil.com.au.

Treatment 33
 Key points

• Treatment will depend on • Steroid therapy is sometimes

what type of acute leukaemia given with chemotherapy
you have. The goal of to help kill leukaemia cells.
treatment is to achieve Side effects may include an
complete remission – this increased appetite, mood
means no detectable swings or trouble sleeping.
leukaemia in your blood or
bone marrow. • Radiotherapy treats cancer
using x-ray beams to kill
• You will have treatment with cancer cells. It is painless but
chemotherapy, which is usually it may cause tiredness, dry or
given intravenously. If the itchy skin, and hair loss.
cancer is in your spine, drugs
will be injected into this area. • Some people have a stem cell
transplant. If the stem cells
• Chemotherapy can be given are collected from your own
as an intensive treatment body, it is called an autologous
(induction chemotherapy), to transplant. If the cells are from
kill any leftover cancer cells a donor, it is an allogeneic
after treatment (consolidation transplant. Autologous
chemotherapy) and in low transplants are rarely used to
doses to prolong remission treat acute leukaemia.
(maintenance chemotherapy).
• Not everyone is suitable for a
• Side effects of chemotherapy stem cell transplant.
depend on the drugs you are
given. They may include an • Palliative care is treatment
increased risk of infections, that helps improve a person’s
fatigue and changed bowel quality of life without trying to
habits. cure the cancer.

34 Cancer Council
 Looking after yourself
Cancer can cause physical and emotional strain. It’s important to
try to look after your wellbeing as much as possible.

Nutrition – Eating healthy food can help you cope with treatment
and side effects. A dietitian can help you manage special dietary
needs or eating problems, and choose the best foods for your
situation. Call Cancer Council Helpline 13 11 20 for a free copy
of the Nutrition and Cancer booklet.

Staying active – Physical activity may help to reduce tiredness,

improve circulation and elevate mood. The amount and type of
exercise you do depends on what you are used to, how you feel,
and your doctor’s advice. Cancer Council’s Exercise for People
Living with Cancer booklet provides more information about the
benefits of exercise, and outlines simple exercises that you may
want to try.

Complementary therapies – These therapies are used with

conventional medical treatments. You may have therapies such
as massage, relaxation and acupuncture to increase your sense of
control, decrease stress and anxiety, and improve your mood. Let
your doctor know about any therapies you are using or thinking
about trying, as some may not be safe or evidence-based.

Alternative therapies are sometimes used instead of conventional

medical treatments. These therapies, such as coffee enemas and
magnet therapy, can be harmful. For more information, call
13 11 20 for a free copy of the Understanding Complementary
Therapies booklet or visit your local Cancer Council website.

Looking after yourself 35

 Relationships with others
Having cancer can affect your relationships with family, friends
and colleagues. This may be because cancer is stressful, tiring and
upsetting, or as a result of more positive changes to your values,
priorities, or outlook on life.

Give yourself time to adjust to what’s happening, and do the same

for others. People may deal with the cancer in different ways, for
example by being overly positive, playing down fears, or keeping a
distance. It may be helpful to discuss your feelings with each other.

Sexuality, intimacy and fertility

Cancer can affect your sexuality in physical and emotional ways.
The impact of these changes depends on many factors, such as
treatment and side effects, your self-confidence, and if you have a
partner. Although sexual intercourse may not always be possible,
closeness and sharing can still be part of your relationship.

If you are able to have sex, you may be advised to use certain types
of contraception to protect your partner or avoid pregnancy for
a certain period of time. Your doctor will talk to you about the
precautions to take. They will also tell you if treatment will affect
your fertility permanently or temporarily. If having children is
important to you, talk to your doctor before starting treatment.

Call 13 11 20 for free copies of Sexuality, Intimacy and Cancer and

Emotions and Cancer, or download the booklets from the website.

36 Cancer Council
Life after treatment
For most people, the cancer experience doesn’t end on the last
day of treatment. Life after cancer treatment can present its own
challenges. You may have mixed feelings when treatment ends, and
worry if every ache and pain means the cancer is coming back.

Some people say that they feel pressure to return to ‘normal life’,
but they don’t want life to return to how it was before cancer. Take
some time to adjust to the physical and emotional changes, and
re-establish a new daily routine at your own pace.

Cancer Council Helpline 13 11 20 can help you connect with other

people who have had cancer, and provide you with information
about the emotional and practical aspects of living well after cancer.

Dealing with feelings of sadness

If you have continued feelings people are able to get a
of sadness, have trouble Medicare rebate for sessions
getting up in the morning or with a psychologist. Ask your
have lost motivation to do doctor if you are eligible. Your
things that previously gave local Cancer Council may also
you pleasure, you may be run a counselling program.
experiencing depression.
This is quite common among The organisation beyondblue
people who have had cancer. has information about coping
with depression and anxiety.
Talk to your GP, as counselling Go to www.beyondblue.org.au
or medication – even for a or call 1300 224 636 to order a
short time – may help. Some fact sheet.

Looking after yourself 37

 Follow-up after treatment
After your treatment, you will need regular check-ups to confirm
that the leukaemia hasn’t come back. At first check-ups will be
every few weeks. They will become less frequent if you have no
further problems.

Between follow-up appointments, let your doctor know

immediately if you are worried or notice any new symptoms.

At your check-ups the doctor will examine you and samples of

blood will be taken to check your general health and blood cell
count. Sometimes a bone marrow test will be done to check
whether there are any cancer cells in your bone marrow.

Living Well After Cancer program

Living Well After Cancer is Participants can:
a free community education • discuss changes, challenges
program run by Cancer and opportunities they
Council NSW and trained may face after completing
cancer survivors. It is held treatment
throughout NSW.
• connect with others
The program includes • share tips and ideas.
practical information and open
discussion for people who are Call 1300 200 558 or email
cancer survivors, their carers, livingwellaftercancer@
family, friends and work nswcc.org.au for more
colleagues. information.

38 Cancer Council
What if the leukaemia returns?
For some people, leukaemia does come back after treatment.
This is known as a relapse.

Leukaemia may be found in the bone marrow again, or for those

with acute lymphoblastic leukaemia (ALL), in the fluid around the
brain and the spinal cord. For men, leukaemia cells may also be
found in their testicles. It is important to have regular check-ups
because tests done during a check-up may detect a relapse before
there are symptoms. Early detection of a relapse offers the best
chance for successful treatment.

If you have a relapse, further treatment can be given – usually

using a different combination of chemotherapy drugs to those you
were given before. This may lead to a second remission. If you did
not have a bone marrow or stem cell transplant before, and you
meet the criteria, your doctors may recommend a transplant.

Everyone deals with the uncertainty of relapse in his

or her own way. Some people find that keeping busy and
setting goals for themselves helps. Fun and laughter can
be a good way to lighten your spirits - even a good cry
can help sometimes too. It is important however to find
someone you feel you can honestly talk to. Jerome

Looking after yourself 39

 Seeking support
Cancer may cause you to experience a range of emotions, such
as fear, sadness, anxiety, anger or frustration. It can also cause
practical and financial problems.

Practical and financial help

There are many services that can help you deal with practical or
financial problems caused by the cancer. Benefits, pensions and
programs can help pay for prescription medicines, transport costs
or utility bills. Home care services, aids and appliances can also be
arranged to help make life easier.

Ask the hospital social worker which services are available in your
local area and if you are eligible to receive them.

If you need legal or financial advice, you should talk to a qualified

professional about your situation. Cancer Council offers free legal
and financial services in some states and territories for people who
can’t afford to pay – call 13 11 20 to ask if you are eligible.

Talk to someone who’s been there

Coming into contact with other people who have had similar
experiences to you can be beneficial. You may feel supported
and relieved to know that others understand what you are going
through and that you are not alone.

People often feel they can speak openly and share tips with others
who have gone through a similar experience.

40 Cancer Council
You may find that you are comfortable talking about your
diagnosis and treatment, relationships with friends and family,
and hopes and fears for the future. Some people say they can be
even more open and honest in these support settings because they
aren’t trying to protect their loved ones.

Types of support
There are many ways to connect with others for mutual support
and to share information. These include:

• face-to-face support groups – often held in community

centres or hospitals
• telephone support groups – facilitated by trained counsellors
• peer support programs – match you with someone who has
had a similar cancer experience, e.g. Cancer Connect
• online forums – such as www.cancerconnections.com.au.

Talk to your nurse, social worker or Cancer Council Helpline

about what is available in your area.

My family members don’t really understand what it’s

like to have cancer thrown at you, but in my support group,
I don’t feel like I have to explain. Sam

Seeking support 41
 Caring for someone
with cancer
You may be reading this booklet because you are caring for an
adult or a child with cancer. Being a carer can be stressful and
cause you anxiety. Try to look after yourself – give yourself some
time out and share your worries and concerns with somebody
neutral such as a counsellor or your doctor.

Many cancer support groups and cancer education programs

are open to carers, as well as people with cancer. Groups and
programs can offer valuable opportunities to share experiences
and ways of coping.

Support services such as Home Help, Meals on Wheels or visiting

nurses can help you in your caring role. There are also many
groups and organisations that can provide you with information
and support, such as Carers Australia, the national body
representing carers in Australia. Carers Australia works with the
Carers Associations in each of the states and territories. Phone
1800 242 636 or visit www.carersaustralia.com.au.

You can also call Cancer Council Helpline 13 11 20 to find out

more about carers’ services and get a free copy of the Caring for
Someone with Cancer booklet.

Children with acute leukaemia

If your child has been diagnosed with acute leukaemia, the
following sections may help you, your child and other family
members communicate with each other and cope during this
difficult time.

42 Cancer Council
Further information on issues surrounding a child’s diagnosis
of cancer can be found in the Leukaemia Foundation’s booklet
Coping with Childhood Leukaemia and Cancer Council’s book
Cancer in the School Community. Both available free of charge.
Call the Leukaemia Foundation or the Cancer Council Helpline.

Should I tell my child?

It is natural to want to protect your child from the news of the
diagnosis, but children often pick up that something is wrong.
Your child may not be feeling well or may be seeing the doctor
frequently. Talking openly and honestly about the leukaemia will
help your child be less anxious and feel a little more in control of
the situation. What you tell your child can depend on how old
they are and how much they understand.

Newborns, infants and toddlers

Children this young do not • Create a familiar

understand illness but will environment that can travel
react to being separated from with the child, such as their
you and to changes in routine. travel cot and favourite
They may not be able to talk blanket and toys.
about it but they often pick • Be honest about hospital
up on physical and emotional trips and explain tests that
changes. Toddlers like to have may hurt.
control over their environment.
• Give your toddler choices
where possible, e.g. “Would
you like to wear the red or
blue t-shirt to hospital?”

Caring for someone with cancer 43

 Preschool children, 3–5 years

Children in this age • Assure your child they have

group are beginning to not caused the illness by
understand the difference their behaviour or thoughts.
between being well and
• Explain tests and treatments
being sick. They often
might hurt, but reassure
believe their actions can
them that you will be there.
make things happen.

School-age children, 6–12 years

By this age, some children • Be open and truthful so they

know about cancer, but don’t fill in the gaps with
do not know its causes. their own interpretations.
They may fill in the gaps
• Tell the school about your
with their own theories.
child’s cancer, and work
They can understand
with the school to maintain
what cancer cells are.
school work when possible.

Teenagers, 13–18 years

Many teenagers have an • Encourage teenagers to

adult understanding of talk about their feelings but
cancer and often want realise they may find it easier
detailed information. They to confide in friends, teachers
are starting to separate or other trusted people.
from the family. This is a
• Provide some support and
vulnerable time, as they
information resources.
don’t want to appear
different from their peers.

44 Cancer Council
Try to keep things normal
One of your child’s main needs will be for as many things as
possible to stay consistent. It is important to continue to show
your love and support. It may help to keep rules and discipline as
normal as possible. Although you may be tempted to spoil your
child or relax your usual discipline, this can lead to confusion in
the long run.

A cancer diagnosis can also be difficult for other children in the

family. They may feel left out, as parents are constantly caring for
the sick child. Their home routines are disturbed. Try to make
time to talk to all your children about how they are feeling.

For more information, call Cancer Council Helpline 13 11 20 for a

free copy of Talking to Kids About Cancer.

Who is available to help?

There are many resources that may be useful:

• Hospital staff may specialise in working with children

(paediatrics) and can offer valuable advice and support.
• Some hospitals and treatment centres employ play therapists,
music therapists or art therapists who work with children.
• Several organisations and parents’ support groups, i.e. CanTeen,
Camp Quality, Redkite and the Leukaemia Foundation offer
practical and emotional support for families and children, camps
for children and other services. See page 47 for website details.

Caring for someone with cancer 45

 Bone marrow and blood donations
One way people can offer indirect support to someone with acute
leukaemia is by becoming a bone marrow donor or a blood donor.

Bone marrow and blood stem cell donations

Because of the difficulty of finding a match between donors and
recipients, allogeneic bone marrow or blood stem cell transplants
from unrelated people are rare. Each year only about one in 1500
potential donors in Australia is asked to donate their bone marrow
or stem cells.

However, the more donors who are on the registry, the better the
chance that a patient will have the opportunity to receive a bone
marrow or blood stem cell transplant. As a donor, you cannot
choose who your bone marrow is given to.

Siblings are the ideal bone marrow or stem cell donors, but only one
patient in three will find a matched donor within their family. Two
out of three will rely on a search of a bone marrow registry to find
a suitable donor.

For more information see the Australian Bone Marrow Donor

Registry website, www.abmdr.org.au.

Blood donations
Many people are able to donate blood throughout the year at the
Australian Red Cross Blood Service. Donated blood helps people
with cancer who need blood transfusions. To find out more call
13 14 95 or visit www.donateblood.com.au.

46 Cancer Council
 Useful websites
The internet has many useful resources, although not all websites
are reliable. The websites below are good sources of support and
relevant information.

Australian
Australian Bone Marrow Donor Registry �����������������www.abmdr.org.au
Cancer Council NSW................................www.cancercouncil.com.au
Cancer Australia......................................http://canceraustralia.gov.au
Department of Health ����������������������������������������������www.health.gov.au
healthdirect Australia......................................www.healthdirect.gov.au
beyondblue......................................................www.beyondblue.org.au
Cancer Connections......................... www.cancerconnections.com.au
Carers Australia....................................... www.carersaustralia.com.au
Leukaemia Foundation ������������������������������������� www.leukaemia.org.au
CanTeen................................................................www.canteen.org.au
Camp Quality..................................................www.campquality.org.au
Redkite....................................................................www.redkite.org.au
Arrow Bone Marrow Transplant Foundation �������������www.arrow.org.au

International
Leukemia & Lymphoma Society (US) ���������������������������������� www.lls.org
Macmillan Cancer Support................................www.macmillan.org.uk
Cancer Research UK................................www.cancerresearch.org.uk
American Cancer Society �������������������������������������������� www.cancer.org
National Cancer Institute (US) �������������������������������������www.cancer.gov

Useful websites 47
 Question checklist
You may find this checklist helpful when thinking about the
questions you want to ask your doctor about your disease and
treatment. If your doctor gives you answers that you don’t
understand, ask for clarification.

• What type of acute leukaemia do I have?

• What tests do I need?
• What treatment do you recommend and why?
• Are there other treatment choices for me? If not, why not?
• What are the risks and possible side effects of each treatment?
• How long will treatment take? Will I have to stay in hospital?
• Will I have a lot of pain with the treatment? What will be done
about this?
• How long will treatment take? How much will it affect what I
can do?
• What happens if I do nothing?
• Will the treatment affect my fertility?
• Will the treatment affect my sex life?
• What happens if the leukaemia comes back?
• How frequently will I need check-ups after treatment?
• Are there any clinical trials or research studies I could join?
• Are there any complementary therapies that might help me?
• How much will treatment cost? How can the cost be reduced?

48 Cancer Council
 Glossary
acute leukaemia tissue from the body, for examination
A fast-growing cancer that causes under a microscope, to help diagnose
large numbers of white blood cells, a disease.
known as blast cells, to be produced blast cells
and enter the bloodstream. Immature white blood cells belonging
acute lymphoblastic leukaemia to two families: myeloid and lymphoid.
(ALL) Blast cells are called myeloblasts in
A fast-growing leukaemia in which the myeloid family and lymphoblasts
too many immature white blood cells in the lymphoid family.
from the lymphoid family (called bone marrow
lymphoblasts) are in the blood and The soft, spongy material inside
bone marrow. Also called acute bones. Bone marrow contains stem
lymphatic leukaemia. cells that produce red blood cells,
acute myeloid leukaemia (AML) white blood cells and platelets.
A fast-growing leukaemia in which too bone marrow biopsy
many immature white blood cells from The removal of a small amount of bone
the myeloid family (called myeloblasts) marrow with a needle for examination
are in the blood and bone marrow. under a microscope.
acute promyelocytic leukaemia bone marrow transplantation
(APML) A procedure to replace bone
A type of AML accounting for about marrow destroyed by high doses of
10% of all acute myeloid leukaemias. chemotherapy treatment with healthy
APML is treated differently to other bone marrow.
types of AML and generally has the
best prognosis. cells
allogeneic transplant The basic building blocks of the
A transplant where stem cells or bone body. A human is made of billions of
marrow are taken from one person and cells that are adapted for different
given to another. functions.
anaemia central venous access device
Deficiency in the number or quality of (CVAD)
red blood cells in the body. A thin plastic device inserted into a
autologous transplant vein. The CVAD gives access to a vein
A transplant where healthy stem cells so blood or chemotherapy can be
are taken from a person’s body and given and blood can be taken.
reimplanted into their body. chemotherapy
The use of cytotoxic drugs to treat
biopsy cancer by killing cancer cells or
The removal of a small sample of slowing the rate of their growth.

Glossary 49
 graft-versus-host disease (GVHD) lymphatic system
A possible complication of allogeneic A network of tissues, capillaries,
bone marrow transplant. The immune vessels, ducts and nodes that removes
system in the person receiving the excess fluid from tissues, absorbs fatty
tissue (the graft) attacks the cells in the acids and transports fat, and produces
recipient’s body (the host). immune cells.
granulocyte-colony stimulating lymphocyte
factor (G-CSF) A type of white blood cell that helps
A protein that helps increase the fight infection.
number and function of certain white lymphoid
blood cells called neutrophils, which One of the two groups of white
help fight infection in the bone marrow. blood cells. The lymphoid family only
produces white blood cells.
haematologist
A doctor who specialises in studying myeloid
and treating diseases of the blood, One of the two groups of white blood
bone marrow and lymphatic system. cells. The myeloid family produces
some white blood cells, red blood cells
intrathecal chemotherapy and platelets.
Chemotherapy drugs that are injected
into the fluid-filled space around the palliative treatment
spinal cord. Symptom management for people with
intravenous (IV) advanced cancer to help them manage
Within a vein. Intravenous medications physical and emotional aspects of
are administered directly into the vein cancer.
using a central venous access device. petechiae
Small red or purple spots on the skin or
leukaemia mouth, a symptom of leukaemia.
A cancer of blood-forming cells, plasma
usually causing large numbers of white The clear fluid part of the blood that
blood cells to be made. carries blood cells.
lumbar puncture platelets
A test in which a needle is inserted into One of three types of cells found in
the base of the spine to collect fluid for the blood. These help the blood to
testing or to inject drugs for treatment. clot and stop bleeding. Also called
lymph nodes thrombocytes.
Small, bean-shaped structures that prognosis
form part of the lymphatic system. The likely outcome of a person’s
Also called lymph glands. disease.

50 Cancer Council
radiation oncologist stem cells
A doctor who specialises in treating Early-stage cells from which mature
cancer with radiotherapy. cells develop. Stem cells are found in
radiotherapy the bone marrow.
The use of radiation, usually x-rays or
gamma rays, to kill cancer cells or injure tissue
them so they cannot grow and multiply. A collection of cells that make up a
recurrent cancer part of the body.
A cancer that grows from cells of the
primary cancer that have resisted white blood cells
treatment, or cancer that has spread One of three types of cells found in
to another part of the body. the blood. They help fight infection.
red blood cells Types of white blood cells include
One of three types of cells found in the neutrophils, lymphocytes and
blood. They carry oxygen around the monocytes. Also called leucocytes.
body. Also called erythrocytes.
relapse
The return of a disease after a period
of remission.
remission
When the symptoms and signs of the
cancer reduce or disappear. A partial
remission is when there has been a
significant improvement in the cancer.
A complete remission is when there
is no evidence of active disease. This
does not necessarily mean that the
cancer is cured.

side effect
Unintended effect of a drug or
treatment.
spleen
An organ in the lymphatic system
Can’t find what you’re looking for?
located on the left side of the
abdomen under the ribs. The spleen For more cancer-related words, visit
produces lymphocytes, filters the www.cancercouncil.com.au/words or
blood, stores blood cells, and destroys www.cancervic.org.au/glossary.
old blood cells.

Glossary 51
 How you can help
At Cancer Council we’re dedicated to improving cancer control.
As well as funding millions of dollars in cancer research every
year, we advocate for the highest quality care for cancer
patients and their families. We create cancer-smart communities
by educating people about cancer, its prevention and early
detection. We offer a range of practical and support services for
people and families affected by cancer. All these programs would
not be possible without community support, great and small.

Join a Cancer Council event: Join one of our community

fundraising events such as Daffodil Day, Australia’s Biggest
Morning Tea, Relay For Life, Girls Night In and Pink Ribbon Day,
or hold your own fundraiser or become a volunteer.

Make a donation: Any gift, large or small, makes a meaningful

contribution to our work in supporting people with cancer and
their families now and in the future.

Buy Cancer Council sun protection products: Every purchase

helps you prevent cancer and contribute financially to our goals.

Help us speak out for a cancer-smart community: We are a

leading advocate for cancer prevention and improved patient
services. You can help us speak out on important cancer issues
and help us improve cancer awareness by living and promoting a
cancer-smart lifestyle.

Join a research study: Cancer Council funds and carries out

research investigating the causes, management, outcomes and
impacts of different cancers. You may be able to join a study.

To find out more about how you, your family and friends can
help, please call your local Cancer Council.

52 Cancer Council
 Cancer Council
Helpline 13 11 20
Cancer Council Helpline is a telephone information service
provided by Cancer Council NSW for people affected by cancer.

For the cost of a local call (except from mobiles), you can
talk confidentially with oncology health professionals about
any concerns. Helpline consultants can send you information
and put you in touch with services in your area. If you need
information in a language other than English, an interpreting
service is available.

You can call the Helpline, Monday to Friday, 9am to 5pm.

If you have difficulty communicating over the phone, contact

the National Relay Service (www.relayservice.com.au) to help
you communicate with a Cancer Council Helpline consultant.

For more information, go to www.cancercouncil.com.au.

Regional offices
Metro Sydney Hunter Central Northern Southern
Woolloomooloo Coast Byron Bay North Wollongong
02 9334 1600 Charlestown 02 6639 1300 02 4223 0200
02 4923 0700
Crows Nest Tamworth Bega
02 9334 1600 Erina 02 6763 0900 02 6492 1805
02 4336 4500
Greater Western Coffs Harbour Western
Sydney Singleton 02 6659 8400 Wagga Wagga
Parramatta 02 6571 2899 02 6937 2600
02 9354 2000 Lismore
02 6629 4396 Orange
Casula 02 6392 0800
02 9354 2000
Penrith
9354 2000
 UNDERSTANDING ACUTE LEUKAEMIA

For support and

information on cancer
and cancer-related
issues, call Cancer
Council Helpline. This
is a confidential service.
SEP 2014 CAN720

For further information and details please

visit our website: www.cancercouncil.com.au