A guide for patients, families & whānau
Leukaemia & Blood Cancer New Zealand
Bone marrow, stem cells and blood cell formation
The lymphatic system
What is leukaemia?
What is acute lymphoblastic leukaemia (ALL)?
How common is ALL and who gets it?
What causes ALL?
What are the symptoms of ALL?
How is ALL diagnosed?
Which type of ALL do I have?
How is ALL treated?
Types of treatment
Phases of treatment
Common side effects
Body image, sexuality & sexual activity
Making treatment decisions
Social and emotional effects
Useful internet addresses
Glossary of terms
There is a separate information booklet called ‘Acute Lymphoblastic Leukaemia in Children – a guide for parents, families and whānau'
Leukaemia & Blood Cancer New Zealand is grateful to the
available from Leukaemia & Blood Cancer New Zealand.
Newmarket Rotary Charitable Foundation for sponsoring this booklet
Leukaemia & Blood Cancer New Zealand
This booklet has been written to help you and your family or whānau
Leukaemia & Blood Cancer New Zealand (LBC) is the only organisation in
understand more about acute lymphoblastic leukaemia (ALL) in adults.
New Zealand dedicated to supporting patients and their families living with
leukaemia, lymphoma, myeloma and related blood conditions.
eukaemia & B
If you or someone you care for has been diagnosed with ALL, you may be feeling anxious or a little overwhelmed. This is normal. Perhaps you have
Since 1977, our work has been made possible through our fundraising events
already started treatment or you are discussing different treatment options
and the generous support we receive from individuals, companies, trusts and
with your doctor and your family. Whatever point you are at, we hope that
grants. We do not receive government funding.
the information contained in this booklet is useful in answering some of your
questions. It may raise other questions, which you should discuss with your
LBC manages the New Zealand Bone Marrow Donor Registry, which works
doctor or specialist nurse.
towards finding matched volunteer donors from New Zealand or overseas
for New Zealand patients who need a bone marrow or stem cell transplant
You may not feel like reading this booklet from cover to cover. It might be
and who do not have a family donor. The registry maintains information on
more useful to look at the list of contents and read the parts that you think
New Zealand donors and has access to a worldwide database of over 18
will be of most use at a particular point in time.
We have used some medical words and terms that you may not be familiar
with. Their meaning is either explained in the text, in the glossary of terms at
the back of this booklet, or in the ‘Dictionary of Terms' booklet.
Leukaemia & Blood Cancer New Zealand's Support Services provide
Some people may require more information than is contained in this booklet.
personalised support programmes
We have included some internet addresses that you might find useful. In
for patients and their families. This
addition, many of you will receive written information from the doctors and
can include regular visits, phone or
nurses at your treatment centre.
email contact, as well as face to face
education and support programmes
It is not the intention of this booklet to recommend any particular form of
and an online information forum. We
treatment to you. You need to discuss your circumstances at all times with
also provide a toll free number for
your doctor and treatment team.
advice, empathy and support.
We hope that you find this booklet useful. There is a feedback form in the back of this booklet, please feel free to fill this in and return it to us to assist in
the production of future editions.
Research plays a critical role in
building a greater understanding of blood cancers and conditions. LBC
Leukaemia & Blood Cancer New Zealand acknowledges the support of the
supports and funds investigation
Leukaemia Foundation of Australia for granting us permission to use material
into these conditions. Improved
within this booklet.
treatments for patients can lead to increased survival rates.
Leukaemia & Blood Cancer New Zealand also gratefully acknowledges Dr Richard Doocey (Auckland City Hospital) and Dr Liam Fernyhough
(Christchurch Hospital) for their assistance with the development of this booklet.
We provide vital information to patients, families, health professionals and the community to improve understanding about blood cancers and conditions.
Bone marrow, stem cells
We work to increase public knowledge of blood cancers and conditions. This
& blood cell formation
is achieved through specifically focused campaigns for the public, health
professionals and health agencies.
Bone marrow is the spongy tissue that fills the cavities inside your bones. All of your blood cells are made in your bone marrow. The process by
We represent the needs of patients and their families to the government,
which blood cells are made is called haemopoiesis. There are three
related agencies and other relevant organisations.
main types of blood cells: red cells, white cells and platelets.
As an infant, haemopoiesis takes place at the centre of all bones.
As an adult, fewer new cells are needed – the marrow space
Leukaemia & Blood Cancer New Zealand provides services and support
in the arms and legs is replaced by fat,
throughout New Zealand. Every person's experience of living with a blood
and active marrow is limited to the
cancer or condition is different. Living with leukaemia, lymphoma, myeloma
hips, ribs and breastbone (sternum).
or a related blood condition is not easy, but you don't have to do it alone.
Some of you may have had a bone
marrow biopsy taken from the bone at
Call 0800 15 10 15 to speak
the back of your hip (the iliac crest) or
to a local Support Services
Coordinator or to find out more about the services
You might like to think of the bone marrow as the blood cell factory. The
main workers at the factory are the blood stem cells. They are relatively few in
Blood Cancer New Zealand.
number but are able, when stimulated, not only to replicate themselves, but
Alternatively, contact us via
also to grow and divide into slightly more mature stem cells called myeloid
email by sending a message to
stem cells and lymphoid stem cells. These can multiply and mature further to
email@example.com or by
produce all the circulating blood cells.
We welcome visitors to our
Myeloid (‘my-loid") stem cells develop into red cells, white cells
offices in Auckland, Wellington
(neutropils, eosinophils, basophils and monocytes) and platelets.
and Christchurch. Please phone
Lymphoid (‘lim-foid') stem cells develop into two other types of white
for an appointment.
Leukaemia & B
cells called T-lymphocytes and B-lymphocytes.
BLOOD STEM CELLS
Blood consists of blood cells and plasma.
White cells, also known as leucocytes, fight infection. There are different
Plasma is the straw coloured fluid part of
types of white cells which fight infection together and in different ways.
the blood, which blood cells use to travel
around your body.
kill bacteria and fungi
Blood Cells 45%
Red cells and haemoglobin
work with neutrophils to fight infection
Red cells contain haemoglobin (Hb), which transports oxygen from the lungs
to all parts of the body. Haemoglobin also carries carbon dioxide to the lungs
T-lymphocytes kill viruses, parasites and cancer cells; produce cytokines
where it can be breathed out.
B-lymphocytes make antibodies which target microorganisms
The normal haemoglobin range for a man is between 130 - 170 g/L
work with neutrophils and lymphocytes to fight
The normal haemoglobin range for a woman is between 120 - 160 g/L
infection; they also help with antibody production and
Red cells are by far the most numerous blood cell and the proportion of
act as scavengers to remove dead tissue. These cells are known as monocytes when they are found in the blood
the blood that is occupied by red cells is called the haematocrit. A low haematocrit suggests that the number of red cells in the blood is lower than
and macrophages when they migrate into body tissues
to help fight infection
The normal range of the haematocrit for a man is between 40 - 52%
If your white cell count drops below normal you are at risk of infection.
The normal range of the haematocrit for a woman is between 36 - 46%
The normal adult white cell count is between 4.0 – 11.0 x 109/L
Anaemia is a condition caused by a reduction in the number of red cells, which
Neutropenia is the term given to describe a lower than normal neutrophil
in turn results in a low haemoglobin. Measuring either the haematocrit or the
count. If you have a neutrophil count of less than 1.0 (1.0 x109/L) you are considered to be neutropenic and at risk of developing frequent and
haemoglobin will provide information regarding the degree of anaemia.
sometimes severe infections.
If you are anaemic you will feel run down and weak. You may be pale and short of breath or you may tire easily because your body is not getting enough
The normal adult neutrophil count is between 2.0 – 7.5 x 109/L
oxygen. In this situation a red cell transfusion may be given to restore the red cell numbers and therefore the haemoglobin to normal levels.
Platelets are disc-shaped cellular fragments that circulate in the blood and
play an important role in clot formation. They help to prevent bleeding. If a
blood vessel is damaged (for example by a cut), the platelets gather at the site of the injury, stick together and form a plug to help stop the bleeding.
The normal adult platelet count is between 150 - 400 x 109/L
Thrombocytopenia is the term used to describe a reduction in the normal platelet count. If your platelet count is low, you are at higher risk of bleeding, and tend to bruise easily. Platelet transfusions are sometimes given to bring the platelet count back to a higher level. In certain situations, especially when patients are receiving some chemotherapy treatments platelets may be transfused if the blood level falls below 10 x 109/L.
The normal blood counts provided here may differ slightly from the ones used at your treatment centre. You can ask for a copy of your blood results, which should include the normal values for each blood type.
Growth factors and cytokines
All normal blood cells have a limited survival in the circulation and need to be replaced on a continual basis. This means that the bone marrow remains a
very active tissue throughout your life. Natural chemicals in your blood called
growth factors or cytokines control the process of blood cell formation.
Different growth factors stimulate the blood stem cells in the bone marrow
to produce different types of blood cells.
Many growth factors can be made in the laboratory (synthesised) and are
available for use in people with blood disorders. For example, granulocyte-colony stimulating factor (G-CSF) stimulates the production of white cells
called neutrophils, while erythropoietin (EPO) stimulates the production of red cells. Unfortunately, drugs to stimulate platelet production have been less successful, but research is continuing in this area.
The lymphatic system
The spleen (an organ on the left side of the abdomen), thymus (a gland
The lymphatic system is made up of a vast network of vessels, similar to blood vessels, that branch out into all the tissues of the body. These vessels
found behind the breast bone), tonsils and adenoids (glands in the throat)
contain lymph, a colourless watery fluid that carries lymphocytes, specialised
and bone marrow (spongy material inside bones) all contain lymphatic
white blood cells that fight infection. There are two types of lymphocytes,
tissue and are therefore considered to be part of the lymphatic system.
B-lymphocytes and T-lymphocytes (called B-cells and T-cells). These cells
Lymphatic tissue is also found in other parts of the body.
protect us by making antibodies and destroying harmful microorganisms like bacteria and viruses. As such, the lymphatic system forms part of the immune system, which protects our bodies against disease and infection.
What is leukaemia?
Clusters of small bean-shaped organs called lymph nodes (also known as lymph glands) are found at various points throughout the lymphatic system.
Leukaemia is the general name given to a group of cancers that develop
The lymph nodes, which are filled with lymphocytes, act as important filtering
in the bone marrow. Under normal conditions the bone marrow contains
stations, cleaning the lymph fluid as it passes through them. Here bacteria,
a small number of healthy immature blood cells, sometimes called blast
viruses and other harmful substances are removed and destroyed. When you
cells. These immature blood cells mature and develop into red cells, white
have an infection, for example a sore throat, you may notice that the lymph
cells and platelets, which are eventually released into the blood stream.
nodes under your jawbone become swollen and tender. This is because
Leukaemia originates in developing blood cells, which have undergone a
the lymphocytes become activated and multiply in response to the virus or
malignant (cancerous) change. Instead of maturing properly these cells grow
bacteria causing the infection.
and multiply in an uncontrolled fashion and interfere with normal blood cell production in the bone marrow. Most cases of leukaemia originate in developing white cells. In a small number of cases leukaemia develops in other blood-forming cells, for example in developing red cells or developing platelets.
Types of leukaemia
What is acute lymphoblastic
There are several different types, and subtypes of leukaemia.
Acute lymphoblastic leukaemia (ALL) is a type of cancer that affects immature lymphocytes developing in the bone marrow. Under normal condition these
Leukaemia can be either acute or chronic. The terms ‘acute' and ‘chronic'
cells grow and mature into specialised white cells called B-lymphocytes
refer to how quickly the disease develops and progresses.
(B-cells) and T-lymphocytes (T-cells). In ALL, they multiply in an uncontrolled
Acute leukaemia develops and progresses quickly and therefore needs to
way, quickly crowding the bone marrow, and interfering with normal blood
be treated as soon as it is diagnosed. It affects very immature blood cells,
cell production. Because the bone marrow is unable to make adequate
preventing them from maturing properly.
numbers of red cells, normal white cells and platelets, people with ALL become more susceptible to anaemia, recurrent infections and to bruising and bleeding easily.
In chronic leukaemia there is an accumulation of more mature but abnormal
white cells. It can occur at any age, but is more common in older adults and
Excessive numbers of these abnormal lymphocytes, known as lymphoblasts,
is rarely seen in children.
leukaemic blasts or leukaemic cells, spill out of the bone marrow and circulate
around the body in the bloodstream. From here they can accumulate in various organs including the lymph nodes (glands), spleen, liver and central
Leukaemia can also be either myeloid or lymphoid. The terms myeloid
nervous system (brain and spinal cord).
and lymphoid refer to the types of cell lineage in which the leukaemia first started.
How common is ALL and who gets it?
When leukaemia starts somewhere in the myeloid cell line, it is called myeloid (myelocytic, myelogenous or granulocytic) leukaemia.
Each year in New Zealand around around 600 adults and 40 children are diagnosed with leukaemia. ALL is the most common type of childhood leukaemia, while in adults acute myeloid leukaemia (AML) is more commonly
When leukaemia starts somewhere in the lymphoid cell line it is called lymphoblastic, lymphocytic, or lymphatic leukaemia. (See diagram of stem
diagnosed. The percentage of all acute leukaemias due to ALL falls with age;
cell lines on page 5).
ALL is more common in males than in females.
Therefore, there are four main types of leukaemia:
Overall, chronic leukaemia is more common in adults than acute leukaemia.
Acute myeloid leukaemia (AML)
The characteristics of ALL differ greatly between children and adults. Current treatment regimes mean that the majority of children with ALL successfully
Acute lymphoblastic leukaemia (ALL)
treated. In adults, cure rates are more variable.
Chronic myeloid leukaemia (CML)
What causes ALL?
Chronic lymphocytic leukaemia (CLL)
Many people who are diagnosed with ALL ask the question "why me?"
Both adults and children can develop leukaemia but certain types are more
Naturally, they want to know what has happened or what they might have
common in different age groups.
done to cause their disease. In most cases the cause of ALL remains unknown. We do know that it is not contagious, that is, you cannot ‘catch' ALL by being
There are separate booklets about the different types of leukaemia available
in contact with someone who has it.
from Leukaemia & Blood Cancer New Zealand.
Like other types of leukaemia, ALL is thought to arise from an acquired mutation (or change) in one or more of the special proteins, called genes that normally control the growth and development of blood cells. This change (or changes) will result in abnormal growth. The original mutation is preserved when the affected stem cell divides and produces a ‘clone'; that is a group of identical cells all with the same defect. Why gene mutations occur in the first place remains largely unknown. There are likely to be a number of, as yet, unidentified factors involved.
In rare cases, exposure to very large doses of radiation, or certain drugs used
Some of the symptoms described above may also be seen in other illnesses, including viral infections. Most people with these symptoms don't have
to treat other forms of cancer may increase the risk of ALL. Certain types of viral infections may play a role in the development of some types of ALL.
leukaemia. However, it is important to see your doctor if you have any unusual
symptoms, or symptoms that don‘t go away so that you can be examined
What are the symptoms of ALL?
and treated appropriately.
w is ALL diagnosed?
Because ALL develops quickly, people are usually only unwell for only a
short period of time before they are diagnosed (days or weeks). The most common symptoms of ALL are caused by a shortage of normal blood cells in
If your GP suspects that you might have
the circulating blood. These include:
leukaemia you will be referred on to another specialist doctor called a haematologist for
further tests and treatment. A haematologist specialises in the care of people with diseases of
A low haemoglobin level in the blood can cause symptoms of anaemia. These
the blood, bone marrow and immune system.
include lack of energy, persistent tiredness and fatigue, weakness, dizziness or feeling unusually short of breath when physically active. In addition, people with anaemia often have a pale complexion.
How is ALL diagnosed?
Increased bleeding or bruising
ALL is diagnosed by examining samples of your blood and bone marrow.
e the symp
A very low platelet count can cause bruising for no apparent reason, or
excessive or prolonged bleeding following minor cuts or injury. Some people
notice frequent or severe nose bleeds or bleeding gums and some women
The first step in diagnosing ALL requires a simple blood test called a full blood count (FBC) or complete blood count (CBC). This involves taking a sample
may have unusually heavy menstrual periods. Red or purple flat pinhead sized purple spots may appear on the skin, especially on the legs. These are called
of your blood, usually from a vein in your hand or arm, and sending it to the
petechiae (‘pe-tee-kee-i') and they are caused by tiny bleeds under the skin.
laboratory for examination under the microscope. The number of red cells, white cells and platelets, and their size and shape, is noted as these can all be
Frequent or repeated infections
abnormal in ALL.
People with ALL don't have enough normal white blood cells, particularly
Many people with ALL have a low red cell count, a low haemoglobin level
neutrophils, so they are more likely to develop frequent or repeated infections.
(anaemia) and a low platelet count. Most will also have a high white cell
These may present as minor skin infections, slow healing of minor cuts and
count with large numbers of abnormal leukaemic blast cells (lymphoblasts)
grazes, a sore throat, sore mouth, coughing, urinary tract infections (frequent
in the circulating blood The presence of leukaemic cells in the bloodstream
passing of urine with a sensation of burning) and often fevers.
suggests that you have leukaemia. A small percentage of patients may not have lymphoblasts detected in their blood at diagnosis. In all cases, the
diagnosis will need to be confirmed by examining the cells in your bone marrow.
Pain in the bones and joints is common and results from the marrow being
Your full blood count will be checked regularly both during and after treatment
crowded with leukaemic cells.
to see how well your disease is responding.
Other symptoms of ALL may include swollen lymph nodes (glands), chest pain and abdominal discomfort due to a swollen spleen or liver. Some
Bone marrow examination
people, particularly those with T-cell ALL may experience chest pain and shortness of breath due to swollen lymph nodes in the chest. This is known
A bone marrow examination (or biopsy) involves taking a sample of bone
as a mediastinal mass. Occasionally, leukaemic cells can accumulate in the
marrow, usually from the back of the iliac crest (hip bone) and sending it to
skin causing a rash.
the laboratory for examination under the microscope. A diagnosis of ALL is confirmed by the presence of an excessive number of blast cells in the bone marrow. Under normal circumstances the bone marrow contains a small proportion of normal or healthy blast cells, usually less than 5 per cent. This proportion can increase to between 20% and 95% in people with ALL.
The bone marrow examination may be done in the hospital or outpatient
Cytogenetic (‘cy-to-gen-etic') and molecular
clinic under local anaesthesia or, in selected cases, under sedation. A
mild pain-killer is given beforehand and the skin is numbed using a local anaesthetic; this is given as an injection under the skin. The injection takes
Cytogenetic tests provide information about the genetic make-up of the
a minute or two, and you should feel only a mild stinging sensation.
leukaemic cells, in other words, the structure and number of chromosomes
present. Chromosomes are the structures that carry genes. Genes are
w is ALL diagnosed?
After allowing time for the local anaesthetic to work, a long thin needle is
collections of DNA, our body's blueprint for life. Standard cytogenetic tests
inserted through the skin and outer layer of bone into the bone marrow
involve examining the chromosomes under the microscope.
cavity. A syringe is attached to the end of the needle and a small sample of bone marrow fluid is drawn out - this is called a ‘bone marrow aspirate'.
Then a slightly larger needle is used to obtain a small core of bone marrow which will provide more detailed information about the structure of the
Certain cytogenetic changes, such as missing, extra or abnormal
bone marrow and bone - this is known as a ‘bone marrow trephine'.
chromosomes help to confirm the specific sub-type of ALL you have, and which treatment is likely to be most effective. These chromosomal changes
If a sedative is used you might feel a bit drowsy afterwards, and it is advised
are only found in the leukaemic cells. They are not usually passed down from
you take a family member or friend along who can take you home. A
parent to child (inherited). Instead, they tend to be acquired over time. An
small dressing or plaster over the biopsy site can be removed the next day.
example of this is the Philadelphia (Ph) chromosome, found in some leukaemic
w is ALL diagnosed?
There may be some mild bruising or discomfort, which usually is managed
cells. This abnormal chromosome is formed when part of chromosome 9 (the
effectively by paracetamol. More serious complications such as bleeding
ABL gene) breaks off and attaches itself to part of chromosome 22 (the BCR
or infection are very rare.
gene) in a process known as translocation. This translocation t(9;22) produces
Once a diagnosis of ALL is made, blood and bone marrow cells are examined
the new fusion gene BCR-ABL which in turn releases excess amounts of an
further using special laboratory tests. These include immunophenotyping,
enzyme called tyrosine kinase. Tyrosine kinase continually signals the bone
cytogenetic and molecular tests.
marrow to make too many abnormal blood cells.
These tests provide more information about the exact type of disease, the
The Ph chromosome is the most common chromosomal abnormality seen
likely course of the disease and the best way to treat it.
in adults with ALL (B cell), occurring in 25 to 30 per cent of all adult patients. Its frequency increases with age and is as high as 50 per cent in people over
the age of 50 years. Ph chromosome positive (Ph+) ALL tended to respond poorly to conventional chemotherapy but newer oral drugs called tyrosine
Immunophenotyping looks at special markers called antigens found on
kinase inhibitors (for example imatinib mesylate or dasatinib) are now used
the surface of blast cells to determine the exact subtype of leukaemia and
in combination with chemotherapy and have substantially improved the
therefore the best way to treat it. This test is done on a machine called a flow
response rate. In suitable patients, an allogeneic (donor) stem cell transplant
cytometer and the test is often called flow cytometry. Specific patterns of
may be considered at an earlier stage.
antigens on leukaemia cells can be used to follow the leukaemia and check how well it is responding.
Molecular genetic tests (for example polymerase chain reaction or PCR tests and fluorescent in situ hybridization or FISH) are more sophisticated genetic
Antigens, commonly referred to as ‘cluster of differentiation' or CD antigens
tests which may be used to assess how well your disease has responded to
followed by a number, act like flags identifying the type and origin of a cell and
treatment. These tests are capable of measuring minute traces of leftover
distinguishing it from other cells in a given sample. Recognition of particular
(residual) leukaemic cells not normally visible under the microscope.
CD antigens is useful in distinguishing between normal and leukaemic
The presence of left over disease gives the doctor some indication of the
cells and determining the type of cell in which the leukaemia originated
likelihood of future relapse (return of the original disease). Using this highly
(B-lymphocyte – B-cell ALL or T-lymphocyte – T-cell ALL), and the point at
sensitive technology, subtle changes in your disease can be detected earlier
which this cell stopped developing properly in the bone marrow.
and where necessary treated earlier.
Together, immunophenotyping, cytogenetic and molecular tests provide more information about the exact type of disease you have, it's likely response to treatment and the best way to treat it.
Other tests provide information on your general health and how well
B-cell ALL arises in more mature developing lymphocytes. This type of ALL is
your kidneys, liver and other vital organs are functioning. These include a
less common accounting for around 3 to 5 per cent of all adult cases.
combination of blood tests and x-rays. Blood tests may include kidney
function tests, liver function tests and coagulation tests, to see if your blood
Here leukaemic cells tend to spread to areas outside the blood and bone
is clotting properly.
marrow and collections of lymphoblasts can be found in areas such as the abdomen, head and neck regions. Involvement of the central nervous system
A lumbar puncture is a procedure where a small sample of the cerebro-spinal
fluid (CSF) that surrounds your brain and spinal cord is collected via a needle in the lower back. This fluid is tested in the laboratory to check for the presence
B-cell ALL sometimes resembles another disease called Burkitts lymphoma,
of leukaemic cells within the central nervous system.
a rare aggressive type of lymphoma. People diagnosed with B-cell ALL are commonly treated with drugs similar to those used to treat this lymphoma.
These tests are important because they provide a baseline set of results regarding organs that might
be affected by disease, and your general health. The results may be important in selecting the
In around 20 to 25 per cent of cases ALL arises in developing T-cells. This
best treatment for you. The results can also be
type of ALL can be further classified as early, mid or late thymocyte T-cell ALL,
w is ALL diagnosed?
compared with later results to assess how well you
depending on the maturity of the affected cell. T-cell ALL commonly presents
with a high white blood cell count and may involve the central nervous system
at diagnosis. In many cases, leukaemia has spread to the chest where swollen
Waiting around for tests can be both stressful and boring. Remember to
lymph nodes produce a collection known as a mediastinal mass.
ask beforehand how long the test will take and what to expect afterwards. You might like to bring a book, some music, or a friend for company and
Prognosis and treatment differ between adults and children. There is a
separate information booklet called ‘Acute Lymphoblastic Leukaemia in Children – a guide for parents, families and whānau' available from
Which type of ALL do I have?
Leukaemia & Blood Cancer New Zealand.
ALL is not a single disease. It is the name given to a group of leukaemias that
develop in the lymphoid cell line in the bone marrow. Depending on the type of abnormal lymphocyte present, ALL can be broadly classified into two main
A prognosis is an estimate of the likely course of a disease and whether it is
likely to relapse in the future. It provides some guide regarding the chances of curing the disease or controlling the disease for a given time.
• ALL that arises in developing B-lymphocytes (B-cells)
Your doctor is the best person to give you an accurate prognosis regarding
• ALL that arises in developing T-lymphocytes (T-cells)
your leukaemia as he or she has all the necessary information to make this assessment.
The current World Health Organization's (WHO) classification system for ALL uses additional information, obtained from more specialised laboratory
Certain factors (known as prognostic factors) give some patients a better
techniques, like immunophenotyping and cytogenetic tests (see above), to
chance of being cured of their disease with treatment than others. At the start
classify ALL precisely. The diagnosis of different subtypes of ALL depends on
these include your age, the exact type of disease you have and your white
the presence or absence of distinct cell surface markers (CD antigens; see
cell count at diagnosis. The genetic make-up of the leukaemic cells is an
important factor in predicting prognosis and the likelihood of cure in ALL. For example, certain cytogenetic changes are associated with a less favourable,
prognosis than others. The presence of Ph+ disease, or leukaemic cells with less than the normal number of chromosomes present (hypodiploidy), have
Between 75 to 80 per cent of adult ALL arises in B-lymphocytes in the early
historically been associated with a poorer prognosis using standard therapy
stages of development in the bone marrow. In these cases the affected cells
(although, as mentioned, this may no longer apply to Ph+ ALL).
share several characteristics with normal immature B-cells. The disease is therefore called precursor B-cell ALL or Pre-B-cell ALL.
Another important prognostic factor is how well your disease responds to
How is ALL treated?
initial treatment, that is, how quickly you achieve a remission and how much disease is left over in your body after this initial treatment.
The treatment chosen for your disease depends on a number of factors including the exact type of leukaemia you have, your age, other prognostic
Taking these and other factors into consideration, you will be categorised as
factors, and your general health.
having ‘standard-risk' or ‘high-risk' ALL. This ensures that the most appropriate
w is ALL tr
and effective ‘risk-based' therapy can be chosen for you. For example, more
Information gathered from hundreds of other people around the world who
intensive therapy may be more beneficial than standard therapy for some
have had the same disease helps to guide the doctor in recommending the
people who are in the high-risk group. Intensive therapy may help to reduce
best treatment for you.
your risk of future relapse and therefore increase your overall chances of
Remember that no two people are the same. In helping you to make the
best treatment decision, your doctor will consider all the information
It is important to realise that although the majority of people treated for
available including the details of your particular situation.
ALL will achieve a remission, a significant proportion will relapse over time.
It is currently estimated that, with chemotherapy treatment alone, overall
between 20 to 40 per cent of adults can be cured of ALL.
Standard therapy refers to a type of treatment which is commonly used in
Commonly used prognostic terms
particular types and stages of disease. It has been tried and tested (in clinical trials) and has proven to be safe and effective in a given situation.
The following terms may be used to describe how well your disease has responded to treatment.
- This means that there is no evidence of leukaemia and no sign of it
Your specialist doctor may ask you to consider taking part in a clinical trial
re-appearing, even after many years.
(also called a research study). Clinical trials test new treatments, or existing
Complete remission (CR)
- This means that the treatment has been
treatments given in new ways to see if they work better. Clinical trials are
successful and that so much of the leukaemia has been destroyed that it
important because they provide vital information about how to improve
can no longer be detected under the microscope. The proportion of blast
treatment by achieving better results with fewer side effects.
cells in the marrow has been reduced to less than 5 per cent. There are no
Participation in a trial may also involve giving blood or bone marrow samples
blast cells present in the circulating blood, the blood count has returned
in order to contribute to a better understanding of the disease. Clinical trials
to normal, and no cytogenetic abnormalities can be detected. The term
often give people access to new therapies not yet funded by governments.
commonly used for these tests is measuring the level of ‘minimal residual disease' or MRD.
Taking part in a clinical trial is entirely voluntary and you are under no obligation to participate. If you are considering taking part in a clinical trial,
The length of time that a remission lasts may vary from person to person,
make sure that you understand the reasons for the trial and what it involves
and the leukaemia may well reappear (relapse) over time.
for you. You should always take time to consider all the implications of a trial
- The leukaemia is not responding to
and discuss this thoroughly with your specialist doctor and other support
people before giving your informed consent. Your specialist doctor can guide you in making the best decision for you.
- The leukaemia has reappeared.
There is a separate booklet called ‘Clinical Trials' available from Leukaemia & Blood Cancer New Zealand.
Central nervous system (CNS) treatment and
Giving your informed consent means that you understand and accept the
risks and benefits of a proposed procedure or treatment. It means that you
Leukaemic cells are sometimes found in the CNS (brain and spinal cord) at
feel you have adequate information to make such a decision.
the time of diagnosis. In other cases ALL reappears or relapses within this
area at a later stage. Because the blood supply to the CNS is different from
Your informed consent is also required if you agree to take part in a clinical
the blood supply to other parts of the body, this area can act as a ‘sanctuary
trial, or if information is being collected about you or some aspect of your
site' or hiding spot for leukaemic cells. Here the cells can grow and multiply
care (data collection).
beyond the reach of standard chemotherapy drugs which normally travel
If you have any doubts or questions regarding any proposed procedure or
throughout the rest of the body in the blood stream.
treatment, please do not hesitate to talk to the doctor or nurse again.
CNS treatment and prophylaxis (protection) will be given at various stages
throughout your treatment. This usually involves injections of methotrexate
Types of treatment
and / or other chemotherapy drugs directly into the spinal fluid (intrathecal injection), through a lumbar puncture. Some types of intravenous
chemotherapy and cortico-steroid therapy also provide valuable protection
for the CNS. On rare occasions, radiation therapy to the head (cranial
Chemotherapy literally means therapy with chemicals. Many chemotherapy
irradiation) is also used.
drugs are also called cytotoxics (cell toxic) because they kill cells, especially ones that multiply quickly like cancer cells.
New treatments for ALL
Chemotherapy is the main form of treatment given for ALL. The dose, timing
There are several new and promising approaches under development for the
and types of the drugs used will vary depending on the particular disease
treatment of ALL. These include new chemotherapy drugs such as clofarabine
involved, your age and general health, and the treatment protocol (plan of
and nelarabine and existing chemotherapy drugs such as vincristine and
treatment) you are following.
daunorubicin which have been encapsulated in a liposomal (fat) solution. Liposomal preparations may allow higher total doses of chemotherapy to be
Chemotherapy is usually given as a combination of drugs (combination
given without causing an increase in toxicity to normal cells.
chemotherapy). These drugs act together and in different ways to destroy the leukaemic cells. Chemotherapy is usually given in several cycles (or courses)
Newer targeted therapies are also being developed including second-
with rest periods in between. This is to allow your body time to recover from
generation tyrosine kinase inhibitors (eg dasatinib or a similar drug called
nilotinib) for Ph+ disease and monoclonal antibodies (rituximab and alemtuzumab). Monoclonal antibodies are specifically engineered to lock
Chemotherapy is given in many different ways in the treatment of ALL.
on to different proteins, called antigens, found on the surface of abnormal
Some drugs are given in tablet form (orally) but most are injected into a
cells like leukaemic cells. Rituximab binds to CD20 antigens and studies from
vein (intravenously or IV). IV drugs are usually given through a special line
overseas have shown that giving rituximab improves the outcome for patients
called a central venous catheter (or central line). This is a special line inserted
whose ALL has the CD20 antigen on the surface of the leukaemia cells. In
through the skin, into a large vein in your arm, neck or chest. Once in place,
contrast, alemtuzumab binds to a CD52 antigen. This helps the patient's own
chemotherapy and other drugs can be given through the line. There are
immune system to recognise these cells as foreign and kill them. Because
several different kinds of central lines used; some are intended for short-term
this type of therapy specifically targets the leukaemic cells, they tend not
use while others can remain in place for months or even years.
to affect other healthy cells, which may explain why they are usually well tolerated with few side effects.
Most of these new treatments for ALL are not freely available but maybe
Cortico-steroids are hormones produced naturally by the body. They can
available as part of a clinical trial in some centres or may be available under a
also be made in the laboratory. These drugs play an important role in the
compassionate access scheme. Your doctor will be able to discuss with you
management of leukaemia. Prednisone and dexamethasone are examples
all of the treatment options suitable for you.
of cortico-steroids commonly used in the treatment of ALL. These drugs work by directly killing leukaemic cells as well as enhancing the effects of chemotherapy.
ALL in adolescents and young adults
does not normalise or flow cytometry or molecular tests suggest there is significant residual leukaemia) and you may be said to have resistant
Recent studies suggest that adolescents and young adults may have better
or refractory disease. In these cases the doctor may recommend a more
outcomes using paediatric treatment protocols which traditionally have been
intensive form of therapy to treat your disease more effectively.
more intensive than adult protocols. Trials are currently under consideration
to determine if these dose-intensive protocols could also improve outcomes
People with Ph+ disease may also be treated with a drug called imatinib
for adults aged between 18-35 years.
mesylate (imatinib), a tyrosine kinase inhibitor, during the induction and
post-remission phases of their treatment. Imatinib is a relatively new drug that works by targeting the bcr-abl protein thereby blocking the
Phases of treatment
leukaemia-causing effects of tyrosine kinase. Higher remission rates have been reported using a combination of imatinib and chemotherapy
Treatment for ALL can be divided into three phases:
although the effects on long-term survival are as yet unclear. Newer research protocols are using an alternate tyrosine kinase inhibitor called
dasatinib instead of imatinib.
Soon after remission induction therapy finishes, more treatment is required
to destroy any left over disease as just one cycle of chemotherapy is rarely sufficient to get rid of all the leukaemia cells, even in those patients who
Soon after you are diagnosed you will start an intensive course of treatment
achieve remission. This is important because it helps to prevent the disease
to bring about, or induce, a remission. The goal of this treatment is to destroy
from reappearing (relapsing) or spreading to the central nervous system
any detectable leukaemic cells in your blood and bone marrow and allow
(brain and spinal cord) in the future. This second phase of treatment is
your bone marrow to function normally again. You will need to be admitted
called consolidation, post remission therapy, or intensification. The type
to hospital for this first phase of treatment.
of consolidation therapy chosen for you will depend on your estimated risk of relapse in the future, in other words the ‘risk group' to which you
Commonly used chemotherapy drugs in this phase of treatment include:
belong (see below). Consolidation therapy usually involves ‘blocks' of
vincristine, cyclophosphamide and an anthracycline drug (daunorubicin,
treatment over several months. This often includes several courses of
adriamycin). Other drugs like cortico-steroids (prednisone) are also used. CNS
more intensive chemotherapy (intensification) to eradicate residual
therapy also may begin at this stage. Another important drug in ALL treatment
both in induction and later on is asparaginase which through enzyme activity leads to leukaemia cell death.
Because of the high risk that ALL will relapse in the future, some people may be offered even more intensive treatment followed by a stem cell
While you are having induction therapy you may also be given a drug called
transplant, to more effectively treat their disease.
allopurinol, which is not a chemotherapy drug. It is used to help prevent a build-up of breakdown products of the destroyed leukaemic cells and to
help the kidneys excrete these products safely. High volumes of fluid are also given intravenously to help flush through the kidneys. In patients where there
Maintenance therapy is designed to help keep your disease in remission
is a high risk of this complication (such as very high leukaemia cell count) a
and prevent it from reappearing (relapsing) in the future. Common
drug called rasburicase may be used to protect the kidneys.
maintenance protocols involve chemotherapy tablets, some taken daily, others weekly, and possibly blocks of injections of chemotherapy with
Usually the administration of induction chemotherapy and the recovery
courses of cortico-steroids.
of the bone marrow from this treatment takes about 4 weeks. At the end of this time you will undergo another bone marrow biopsy and testing to
This phase of treatment usually lasts from several months to up to 2
assess whether you are in remission or not. The tests include microscopic
years during which time you will be treated as an outpatient. However,
examination, cytogenetics and, in some patients where applicable, flow
depending on the type of chemotherapy being given or your general
cytometry and molecular tests
health, you may need to be admitted to hospital.
The majority of patients (around 80 per cent) will achieve an initial remission following induction therapy. In a small number however the disease does not respond to treatment as expected (e.g. the blasts cell count in your marrow
Stem cell transplant
Finding out that your leukaemia has relapsed can be devastating, but there are usually ways of getting it back under control. The treatment of relapsed
Younger patients who have a suitably matched donor may be offered an
disease depends on a number of factors including the duration of the
allogeneic (donor) stem cell transplant when they have achieved their first
remission and the site at which the disease has reappeared. Other factors are
remission from ALL. This involves the use of very high doses of chemotherapy,
also considered including your age and the genetic make-up of the relapsed
with or without radiotherapy, which kills the normal marrow cells (as well as,
hopefully, any ALL cells that have survived thus far). The term used for this intense treatment is ‘myeloablative'. This is then followed by infusion of blood
Similar drugs to those used to initially treat leukaemia or in some cases
stem cells, which have been donated by a suitably matched donor, usually
different drugs may be used to treat relapsed disease. You may also be invited
a sibling or sometimes an unrelated donor from worldwide donor registries.
to take part in a clinical trial to test new and experimental treatments for ALL.
Patients who respond to chemotherapy for relapse may be considered for a
This form of treatment may reduce the chance of relapse in both standard and high-risk ALL and improve the overall chance of cure. Whether you will
transplant in some circumstances.
be offered a transplant will depend on a number of factors, predominantly the risk of relapse if treated with chemotherapy alone together with how
you tolerate the chemotherapy you will receive. This risk will vary between
different patients so the advice from your doctor will be very specific to your
If a decision is made not to continue with anti-cancer treatment
circumstances. Due to the potential toxicities of this type of treatment it is not
(chemotherapy and radiotherapy) for your leukaemia there are still many
generally suitable for older patients (e.g over 50 - 60 years).
things that can be done to help people to stay as healthy and comfortable as possible.
A newer approach involves using lower and therefore less toxic doses of chemotherapy and radiotherapy. This is called a reduced intensity, non-
Palliative care is aimed at relieving any symptoms or pain a person might be
myeloablative, or mini-allogeneic (mini-allo) stem cell transplant. This may
experiencing as a result of their disease or its treatment, rather than trying to
be suitable for selected older patients and those with certain health problems
cure or control it.
who would benefit from, but might not be able to tolerate a conventional donor transplant. Using this approach less intensive doses of chemotherapy are used to treat disease in the bone marrow and suppress the patient's immune system sufficiently for it to accept the new, donated healthy stem cells. Meanwhile it is hoped that the donor's immune system will attack and destroy any leftover disease.
Another option involves collecting your own stem cells, usually from your blood stream, storing them and then giving them back after you have received high doses of chemotherapy. This type of treatment is called an autologous stem cell transplant. This is commonly used for various forms of lymphoma and myeloma but is very rarely used for ALL as studies have not shown it to be effective.
A stem cell transplant is usually only offered if your doctor feels that it will be of benefit to you. You will be able to discuss with your doctor if a transplant is a suitable treatment option in your case.
There are separate booklets about stem cell transplants available from Leukaemia & Blood Cancer New Zealand.
Common side effects
- Your platelet count may also be affected by your disease and by
the chemotherapy you are receiving and you may become thrombocytopenic
The type of side effects and their severity varies from person to person,
(a reduction in the number of platelets circulating in the blood). When your
depending on the type of chemotherapy used and how an individual responds
platelet count is very low you can bruise and bleed more easily. During this
to it. There is no doubt that side effects can be very unpleasant at times, but
time it is helpful to avoid sharp objects in your mouth such as toothpicks as
ommon side eff
these can cut your gums. Using a soft toothbrush also helps to protect your
it's good to remember that most of them are temporary and reversible.
gums. In many cases a transfusion of platelets is given to reduce the risk of
It is important that you report any side effects you are experiencing to your
bleeding until the platelet count recovers.
nurse or doctor because many of them can be treated successfully, reducing any unnecessary discomfort for you.
- If your red blood cell count and haemoglobin levels drop you will
probably become anaemic. When you are anaemic you feel more tired and
It is important that you contact your doctor or the hospital for advice
lethargic than usual. If your haemoglobin level is very low, your doctor may
immediately (at any time of the day or night) if you are feeling very unwell,
prescribe a blood transfusion.
or if you experience any of the following:
- The point at which your white blood cell count is at its lowest
• a temperature of 38oC or over and / or an episode of shivering
is called the nadir. This is usually expected 10 to 14 days after having your chemotherapy. During this time you will be at a higher risk of developing an
ommon side eff
• bleeding or bruising, for example blood in your urine, faeces, sputum,
infection. At this stage you will also be neutropenic, which means that your
bleeding gums or a persistent nose bleed
neutrophil count is low. Neutrophils are important white blood cells that help us to fight infection.
• nausea or vomiting that prevents you from eating or drinking or taking
your normal medications
While your white blood cell count is low you should take sensible precautions to help prevent infection. These include avoiding crowds, avoiding close
• diarrhoea, stomach cramps or constipation
contact with people with infections that are contagious (for example colds, flu, chicken pox) and only eating food that has been properly prepared and
• coughing or shortness of breath
• the presence of a new rash, reddening of the skin, itching
Your doctor and nurse will advise you on how to reduce your risk of infection
• a persistent headache
while your white cell count is low.
• a new pain or soreness anywhere
If you do develop an infection you may experience a fever which may or may not be accompanied by an episode of shivering, where you shake
• if you cut or otherwise injure yourself
uncontrollably. Infections while you are neutropenic can be quite serious and need to be treated with antibiotics as soon as possible.
• if you notice pain, swelling, redness or pus anywhere on your body
It is important you do not use any drugs to bring your temperature down
Side effects of chemotherapy
(i.e. paracetamol) until you are reviewed by your doctor. This could mask an infection which could lead to serious life threatening complications. Do not
Chemotherapy kills cells that multiply quickly, such as leukaemic cells. It also
take aspirin or ibuprofen in any form as this can increase the risk of bleeding
causes damage to fast-growing normal cells, including hair cells, and cells
if your platelets are low. Always check with you doctor first.
that make up the tissues in your mouth, gut and bone marrow. The side-effects of chemotherapy occur as a result of this damage.
Sometimes your doctor may decide to use a growth factor such as G-CSF to help the recovery of your neutrophil count. This drug works by stimulating
Effects on the bone marrow
the bone marrow to increase the production of neutrophils. G-CSF is given as an injection under the skin (subcutaneous). This is quite a simple procedure
ALL prevents your bone marrow from functioning properly and producing
and the nurse will teach you or a family member (or friend) to do this at
adequate numbers of red cells, white cells and platelets. Chemotherapy also
home. Major side effects are uncommon, but occasionally aching bones may
affects the bone marrow's ability to produce these cells. As a result, your blood
count (the number of blood cells circulating in your blood) will generally fall within a week of treatment, increasing their risk of infection and bleeding.
Nausea and vomiting
Nausea and vomiting are often associated with chemotherapy and some
Chemotherapy and radiotherapy can cause some damage to the lining of
forms of radiotherapy. However, thanks to significant improvements in anti-
your bowel wall. This can lead to cramping, wind, abdominal swelling and
sickness (antiemetic) drugs, nausea and vomiting are generally very well
diarrhoea. Be sure to tell the nurses and doctors if you experience any of
ommon side eff
controlled. You will be given anti-sickness drugs before and for a few days
these symptoms. If you develop diarrhoea, a specimen will be required from
after your chemotherapy treatment. Be sure to tell the nurses and doctors
you to ensure that the diarrhoea is not the result of an infection. After this
if you think that the antiemetics are not working for you and you still feel
you will be given some medication to help stop the diarrhoea and/or the
sick. There are many different types of antiemetics that can be tried. A mild
discomfort you may be feeling.
sedative may also be used to help stop you feeling sick. This will help you to relax but it might make you a little sleepy.
It is also important to tell the nurse or doctor if you are constipated or if you are feeling any discomfort or tenderness around your bottom (anus) when
Some people find that eating smaller meals more frequently during the day,
you are trying to move your bowels. You may need a gentle laxative to help
rather than a few large meals, helps to reduce nausea and vomiting. Many find
soften your stool.
that eating cool or cold food is more palatable, for example jelly or custard. Drinking ginger ale or soda water and eating dry toast may also help if you
are feeling sick. Getting plenty of fresh air, avoiding strong or offensive smells and taking the prescribed anti-sickness drugs as recommended by the nurse
For most of us, the thought of losing our hair is very frightening. Hair loss is
ommon side eff
and doctor should also help.
unfortunately a very common side effect of chemotherapy and some forms
of radiotherapy. It is, however, usually only temporary. The hair starts to fall
Changes in taste and smell
out within a couple of weeks of treatment and tends to grow back three to six months later. In the meantime there are lots of things that you can do to
Both chemotherapy and radiation therapy can cause changes to your sense
make yourself feel more comfortable.
of taste and smell. This is usually temporary but in some cases it lasts up to several months. During this time you may not be able to enjoy the foods and
Avoiding the use of heat or chemicals and only using a soft hairbrush and
drinks that you used to love and this can be very disappointing. Some people
a mild baby shampoo can help reduce the itchiness and scalp tenderness
find that adding a little more sugar to sweet foods and salt to savoury foods
which can occur while you are losing your hair. When drying your hair,
can help. Talk to your dietician for advice.
pat it gently rather than rubbing it with a towel. Some people find it more comfortable to simply have a short hair cut when they notice that their hair
is starting to fall out.
Mucositis, or inflammation of the lining of the mouth and throat, is a
You need to avoid direct sunlight on your exposed
common and uncomfortable side effect of chemotherapy and some forms
head (wear a hat) because chemotherapy and
of radiotherapy. It usually starts about a week after the treatment has finished
radiotherapy makes your skin even more vulnerable
and goes away once your blood count recovers, usually a couple of weeks
to the damaging effects of the sun (i.e. sunburn and
later. During this time your mouth and throat could get quite sore. Soluble
skin cancers). Remember that without your hair,
paracetamol and other topical drugs (ones which can be applied to the sore
your head can get quite cold, so a beanie might be
area) can help. If the pain becomes more severe, stronger pain killers might
useful, especially if you are in an air-conditioned
environment like a hospital. Hair can also be lost from your eyebrows, eyelashes, arms and legs.
Always check your temperature before taking paracetamol as this drug can ‘mask' signs of infection (a raised temperature).
‘Look Good, Feel Better' is a free community service that runs programs on how to manage
It is important to keep your mouth as clean as possible while you are having
the appearance-related side effects of cancer
treatment to help prevent infection. It is particularly important to do your
treatments. The beauty therapists who run these
mouth care regularly while your mouth is sore. Your nurse will show you
programs give useful advice and demonstrations
how to care for your mouth during this time. This may include using a soft
on how to manage hair loss including the use
toothbrush and mild toothpaste. Avoid commercial mouthwashes, like the
of hats, wigs, scarves or turbans. You might
ones you can buy at the supermarket. These are often too strong, or they
like to find out more or register for a workshop,
may contain alcohol which will hurt your mouth.
call 0800 865 432.
Most people experience some degree of tiredness in the days and weeks
following chemotherapy and radiotherapy. Having plenty of rest and a little
light exercise each day may help to make you feel better during this time.
Fertility is the ability to produce a child. In males, fertility means having
Getting out into the fresh air and doing some gentle exercise is important for
enough healthy sperm to get a female pregnant. In females, fertility is the
your general feeling of wellbeing and it also may help to reduce your fatigue.
ability to become pregnant.
It is also important to listen to your body and rest when you are tired.
Some types of chemotherapy and radiotherapy may cause a temporary or
Side effects of cortico-steroids
permanent reduction in your fertility. It is very important that you discuss any questions or concerns you might have regarding your future fertility with
The types of side effects seen with cortico-steroids depend largely on how
your doctor if possible before you commence treatment.
long they are used for, and the dose given. If you are using them for a short
time you may notice that your appetite increases or you may feel more restless
In women, some types of chemotherapy and radiotherapy can cause varying
than usual. Some people find it more difficult to get to sleep at night and
degrees of damage to the normal functioning of the ovaries. In some cases
sleeping tablets or other natural therapies are sometimes recommended.
this leads to menopause (change of life) earlier than expected. In men sperm production can be impaired for a while but the production of new sperm may
Cortico-steroids can cause a rise in the blood sugar. Diabetics may find they
become normal again in the future.
ommon side eff
need more of their diabetes medication while they are taking these drugs
and some people who are not normally diabetic may require treatment to
There are some options for preserving your fertility, if necessary, while you
keep their blood sugar at acceptable levels. It is important to keep a check
are having treatment. These are described below.
on the blood sugar and keep a diary of the levels and the amount of diabetic medication being taken. Diabetics will already know how to do this. People
Protecting your fertility - Men
whose blood sugar only goes up when they are on cortico-steroids may be given information on diet and taught how to measure their blood sugar and
Sperm banking is a relatively simple procedure whereby the man donates
adjust their medication. Blood sugar levels usually return to normal once the
semen, which is then stored at a very low temperature (cryopreserved), with
steroids are finished.
the intention of using it to achieve a pregnancy in the future. You should discuss sperm banking with your doctor before starting any treatment that
Many of the side effects of cortico-steroids are temporary and should pass
might impact on your fertility. In some cases, however, people are not
once you finish taking them. Long-term use of cortico-steroids may cause
suitable for sperm banking when they are first diagnosed because they
some other effects such as fluid retention and an increased susceptibility to
are too unwell and therefore unable to produce the sperm in sufficient
infections. Aching joints such as the knees and hips have also been reported.
quantity or quality.
These effects are not common however as most people with ALL do not require prolonged steroid therapy.
If possible, semen should be donated on more than one occasion. It is important to realise that there are many factors that can affect the quality
Remember to tell your doctor and nurses about any side effects you are
and quantity of sperm collected in a semen donation and its viability after it
having as they can usually suggest ways to help you.
is thawed out. There is no guarantee that you and your partner will be able to achieve a pregnancy and healthy newborn in the future. You should raise any concerns you have with your doctor who can best advise you on your fertility options.
The use of donor sperm might be another option for you and your partner. The sperm is donated from another male to achieve a pregnancy.
Protecting your fertility - Women
It is important that you discuss any changes to your periods with your doctor or nurse. He or she may be able to advise you or refer you to a specialist
There are several approaches that may be used to protect a woman's fertility.
doctor (a gynaecologist) or clinic that can suggest appropriate steps to take
These are outlined below.
to reduce your symptoms.
ody image, se
Embryo storage - this involves collecting your eggs, usually after taking
drugs to stimulate your ovaries to produce a number of eggs, so that more than one egg can be collected. This process takes at least several weeks and
Cancer treatment can also affect your periods; you may find your periods stop
this can be a problem if your treatment needs to start immediately. Once
or become irregular. You may be prescribed a birth control pill to stop your
the eggs are collected they are then fertilised with your partner's sperm and
periods. This prevents heavy bleeding and blood loss when your platelets
stored to be used at a later date. Your unfertilised eggs can also be collected
are low. If you are having chemotherapy, it is best to use pads instead of
and stored in a similar manner (egg storage).
tampons if you are menstruating as this will reduce the risk of infections. Always let your doctor know if you are having your period.
Ovarian tissue storage
- this is still a fairly new approach to protecting your
fertility and to date there is very little experience with this technique in New
Zealand. It involves the removal and storage at a very low temperature of
Body image, sexuality and sexual activity
uality and se
some ovarian tissue (cryopreservation). It is hoped that at a later date the
eggs contained in this tissue can be matured, fertilised and used to achieve
It is likely that the diagnosis and treatment
of leukaemia will have some impact on how you feel about yourself as a man or a
To date, these first two approaches have unfortunately shown little success
woman and as a ‘sexual being'. Hair loss, skin
in cancer patients.
changes and fatigue can all interfere with feeling attractive.
The use of donor eggs might be another option for you and your partner. These eggs could be fertilised using your partner's sperm and used in an
During treatment you may experience a
attempt to achieve a pregnancy in the future.
decrease in libido, which is your body's
sexual urge or desire, sometimes without
It is important to understand that these methods are still quite experimental
there being any obvious reason. It may take
and for many reasons achieving a pregnancy and subsequently a baby is not
some time for things to return to ‘normal'.
guaranteed by using any of them. In addition, some are time consuming and
It is perfectly reasonable and safe to have
costly while others may simply not be acceptable to you or your partner.
sex while you are on treatment or shortly
afterwards, but there are some precautions
Because of the need to start treatment without delay and the problems
you need to take. It is usually recommended
associated with the leukaemia itself, it is often not possible to collect eggs
that you or your partner do not become
or ovarian tissue prior to the first cycle of chemotherapy.
pregnant as some of the treatments given
might harm the developing baby. As such, you need to ensure that you or your partner uses a suitable form of
Some cancer treatments can affect the normal functioning of the ovaries.
contraception. Condoms (with a spermicidal gel) offer good contraceptive
This can sometimes lead to infertility and an earlier than expected onset of
protection as well as protection against infection or irritation. Your partner
menopause, even at a young age. The onset of menopause in these
may be worried that sex might in some way harm you. This is not likely as
circumstances can be sudden and, understandably, very distressing.
long as your partner is free from any infections and the sex is relatively gentle. Finally, if you are experiencing vaginal dryness, a lubricant can be helpful. This
Hormone changes can lead to many of the classic symptoms of menopause
will help prevent irritation. Using a condom is also important to protect your
including menstrual changes, hot flushes, sweating, dry skin, vaginal dryness
partner from chemotherapy drugs that can be excreted in body fluids in the
and itchiness, headache and other aches and pains. Some women experience
first few days after they are administered.
decreased sexual drive, anxiety and even depressive symptoms during this time.
If you have any questions or concerns regarding sexual activity and contraception don't hesitate to discuss these with your doctor or nurse, or ask for a referral to a doctor or health professional who specialises in sexual issues.
Making treatment decisions
Supportive care plays an important role in the treatment of many people
Many people feel overwhelmed when they
living with leukaemia. This involves making every effort to improve your
are diagnosed with ALL. In addition to this,
quality of life, by relieving any symptoms you might have and by preventing
waiting for test results and then having to
and treating any side effects that arise from your disease or treatment. Blood
make decisions about proceeding with
transfusions, antibiotics, and for some people, complementary therapies, are
the recommended treatment can be very
all important elements of supportive care.
stressful. Some people do not feel that they have enough information to make such
decisions while others feel overwhelmed by the amount of information they are given. It
Complementary therapies are therapies which are not considered standard
is important that you feel you have enough
medical therapies. Many people find that they are helpful in coping with
information about your illness and all of
their treatment and recovery from disease. There are many different types of
the treatment options available, so that you
complementary therapies. These include yoga, exercise, meditation, prayer,
can make your own decisions about which
acupuncture, relaxation and herbal and vitamin supplements.
treatment to have.
Complementary therapies should ‘complement' or assist with recommended
Before going to see your specialist doctor
medical treatment. They are not recommended as an alternative to medical
(haematologist) make a list of the questions
treatment. It is important to realise that no complementary or alternative
you want to ask. It may be useful to keep a
treatment alone has proven to be effective against ALL.
notebook or some paper and a pen by your bedside as many questions are thought of in
It is also important to let your doctor or nurse know if you are using any
the early hours of the morning.
complementary or alternative therapies in case they interfere with the effectiveness of chemotherapy or other treatments you may be having.
Sometimes it is hard to remember everything the doctor has said. It may help to bring a family member or a friend along who can write down the answers
to your questions or prompt you to ask others, be an extra set of ears or simply be there to support you.
A healthy and nutritious diet is important in helping your body to cope with the
Your doctor will spend time with you and your family discussing what he
condition you've been diagnosed with, and
or she feels is the best option for you. Feel free to ask as many questions as
its treatment. Talk to your doctor or nurse
you need to, at any stage. You are involved in making important decisions
if you have any questions about your diet
regarding your wellbeing. You should feel that you have enough information
or if you are considering making any radical
to do this and that the decisions made are in your best interests. Remember,
changes to the way you eat. You may wish
you can always request a second opinion if you feel this is necessary.
to see a nutritionist or dietician who can advise you on planning a balanced and
The Haematology Patient Diary, available from Leukaemia & Blood Cancer
New Zealand, may be useful for recording details of treatment and making notes from clinic appointments.
If you are thinking about using herbs or vitamins it is very important to talk
this over with your doctor first. Some of these substances can interfere with the
New Zealand's Health and Disability Code states that everyone has the right
effectiveness of chemotherapy or other
to have an interpreter present during a medical consultation. Family or friends
treatment you are having.
may assist if you and your doctor do not speak the same language, but you can also ask your doctor to provide a trained interpreter if using a family member is not appropriate.
Social and emotional effects
Finishing treatment – Looking to the future
People cope with a diagnosis of leukaemia in different ways, and there is no
Once treatment has finished most people are followed up on a regular basis
right or wrong or standard reaction. For some people, the diagnosis can trigger
by their haematologist and are advised to see their general practitioner (GP)
any number of emotional responses ranging from denial to devastation. It is
for any necessary medical care. This can make some people nervous because
ocial and emo
they may fear that their GP may not be aware of the latest developments in
not uncommon to feel angry, helpless and confused. Naturally people fear for their own lives or that of a loved one.
leukaemia. It is important to remember that your treating specialist will send information to your GP to keep him or her informed regarding your progress
It is worth remembering that information can often help to take away the fear
and what needs to be followed up, on a regular basis, for example blood
of the unknown. It is a good idea for you and your family to speak directly to
your doctor regarding any questions you might have about your disease or treatment. It can also be helpful to talk to other health professionals including
Even though you have been treated successfully for leukaemia it is normal to
social workers or nurses who have been specially educated to take care of
continue to experience feelings of vulnerability, uncertainty about the future
people with haematological diseases. Some people find it useful to talk
and fear that your illness could return. The fear of a recurrence or relapse of
with other patients and family members who understand the complexity of
leukaemia may cause some people to become overprotective or cautious.
feelings and the kinds of issues that come up for people living with blood
Being more aware of any physical signs and symptoms than previously, for
cancers and conditions.
example a bruise, sustained in normal activity, may cause great anxiety and fear of relapse. Follow-up appointments after treatment has finished are
In some areas there may be patient group meetings, and there is also an
often times of great anxiety as people wait for an 'all clear' from their doctor.
online support and information forum run by Leukaemia & Blood Cancer
As time passes and as more distance is allowed between appointments
New Zealand – LifeBloodLIVE. This is available at www.lifebloodlive.org.nz.
anxiety reduces. Everyone gradually becomes more and more engaged in
the activities of daily living rather than concentrating most of their attention
Many people are concerned about the social and financial impact of the
on the experience of illness.
Social and emo
diagnosis and treatment on their families. Normal family routines are often disrupted and other members of the family may suddenly have to fulfil roles
Looking after yourself
they are not familiar with, for example, cooking, cleaning, and taking care of children. The social worker attached to your treatment centre is available for
Focusing on the things you can do to help yourself recover both physically
you to talk through and discuss these issues with you and your family.
and emotionally is important. Enjoying simple pleasures every day, looking to better times in the future, making plans and having hope are all important in
If you have a psychological or psychiatric condition, please inform your
maintaining a sense of control in a time of uncertainty.
doctor and don't hesitate to request additional support from a mental health professional.
Maintain a healthy lifestyle by:
There is a variety of assistance available to help ease the emotional and
financial strain created by a diagnosis of a blood cancer or condition. Support Services staff at Leukaemia & Blood Cancer New Zealand are available to
Eating a healthy diet
provide you and your family with information and support to help you cope during this time. Contact details for Leukaemia & Blood Cancer New Zealand
Taking regular exercise
are provided on the back of this booklet.
Drinking alcohol in moderation
Maintaining a healthy weight
Wearing appropriate sun protection
Useful internet addresses
Glossary of terms
The value of the internet is widely recognised; however, not all the information
available may be accurate and up to date. For this reason, we have selected
Hair loss. This is a side-effect of some kinds of chemotherapy and radiotherapy.
some of the key sites that people with leukaemia might find useful.
It is usually temporary.
With the exception of our own website, Leukaemia & Blood Cancer New Zealand do not maintain these listed sites. We have only suggested sites
A reduction in the haemoglobin level in the blood. Haemoglobin normally
we believe may offer credible and responsible information, but we cannot
carries oxygen to all the body's tissues. Anaemia causes tiredness, paleness
guarantee the information on them is correct, up to date or evidence based
and sometimes shortness of breath.
Naturally produced substances in the blood, made by white blood cells called
Leukaemia & Blood Cancer New Zealand
B-lymphocytes or B-cells. Antibodies target antigens on foreign or abnormal
substances such as bacteria, viruses and some cancer cells and cause their
Cancer Society of New Zealand
A drug which prevents or reduces feelings of sickness (nausea) and vomiting
Leukaemia Foundation of Australia
A substance, usually on the surface of a foreign body such as a virus or bacteria that stimulates the cells of the body's immune system to react against it by
American Cancer Society
Immature blood cells normally found in the bone marrow.
MacMillan Cancer Support (A UK cancer information site)
A type of white cell normally involved in the production of antibodies to
Leukemia & Lymphoma Society of America
The tissue found at the centre of many flat or big bones of the body. The
Leukaemia & Lymphoma Research Fund (UK)
bone marrow contains stem cells from which all blood cells are made.
National Cancer Institute (USA)
A routine blood test that measures the number and type of cells circulating
A disease characterised by uncontrolled production, accumulation and
maturation of cells; often called malignant disease or neoplasm. Cancer cells grow and multiply, eventually causing a mass of cancer cells known as a tumour.
A plastic tube which can be inserted into a vein to allow fluid to enter the
Central venous catheter (CVC)
A doctor who specialises in the diagnosis and treatment of diseases of the
A line tube passed through the large veins of the arm, neck, chest or groin and into the central blood circulation. It may be used for taking samples of blood,
blood, bone marrow and immune system.
giving intravenous fluids, blood, chemotherapy and other drugs without the
need for repeated needles.
A type of central venous catheter sometimes used for patients undergoing
intensive treatment including bone marrow or peripheral blood cell
Treatment using anti-cancer drugs. Single drugs or combinations of drugs
transplantation. It may have a single, double or triple tube or lumen.
may be used to kill and prevent the growth of cancer cells. Although aimed
at cancer cells, chemotherapy can also affect rapidly dividing normal cells and therefore causes some common side-effects including hair loss, nausea
The use of higher than normal doses of chemotherapy to kill off resistant and
and vomiting, and mucositis. The side-effects of chemotherapy are usually
left over cancer cells.
temporary and reversible.
The use of drugs to reduce the function of the immune system.
Anti-cancer treatment has been successful and so much of the disease has
been destroyed that it can no longer be detected using current technology. In
When the function of the immune system is reduced.
people with leukaemia this means that proportion of blast cells in the marrow has been reduced to less than five per cent. There are no blast cells present in
the circulating blood and the blood count has returned to normal.
Specialised laboratory test used to detect markers on the surface of cells. These markers identify the origin of the cell.
This means that there is no evidence of disease and no sign of the disease
reappearing, even many years later.
Where parts of a chromosome turn upside down or when two parts of a chromosome reverse their positions.
The study of the structure of chromosomes. Cytogenetic tests are carried out
on samples of blood and bone marrow to detect chromosomal abnormalities
Cancer of the blood and bone marrow characterised by the widespread,
associated with disease. This information helps in the diagnosis and selection
uncontrolled production of large numbers of abnormal and / or immature
of the most appropriate treatment.
blood cells. These cells crowd the bone marrow and spill out into the bloodstream.
This means that the disease is getting worse despite treatment.
Abnormal blast cells which multiple in an uncontrolled manner, crowding
out the bone marrow and preventing it from producing normal blood cells.
A special ultrasound scan of the heart.
These abnormal cells also spill out into the blood stream and can accumulate
in other organs.
Electrical trace of the heart.
Disease that is confined to a small area or areas.
A complex family of proteins produced by the body to control the production
Lymph nodes or glands
and maturation of blood cells by the bone marrow. Some are now available
Structures found throughout the body, for example in the neck, groin, armpit,
as drugs as a result of genetic engineering and may be used to stimulate
chest and abdomen, which contain both mature and immature lymphocytes.
normal blood cell production following chemotherapy or bone marrow or
There are millions of very small lymph glands in all organs of the body.
peripheral blood cell transplantation. For example G-CSF (granulocyte colony stimulating factor).
Term used to describe a pathway of maturation of blood cells in the bone
Haemopoiesis (also called haematopoiesis)
marrow. White blood cells (B-lymphocytes and T-lymphocytes) are derived
The formation of blood cells.
from the lymphoid stem cell line.
Resistant or refractory disease
This means that the disease is not responding to treatment.
Specialised white cells involved in defending the body against disease and infection. There are two types of lymphocytes: B-lymphocytes and T-lymphocytes. They are also called B-cells and T-cells.
An organ that accumulates lymphocytes, acts as a reservoir for red blood
cells for emergencies, and destroys red blood cells, white blood cells and
A term applied to tumours characterised by uncontrolled growth and division
platelets at the end of their lifespan. The spleen is found high in the abdomen
of cells (see cancer).
on the left-hand side. It is often enlarged in diseases of the blood or bone marrow.
An inflammation of the lining of the mouth, throat or gut.
Enlargement of the spleen.
Term used to describe a pathway of maturation of blood cells in the bone
marrow. Red blood cells, white blood cells (neutrophils, eosinophils, basophils
Stem cells are primitive blood cells that can give rise to more than one cell
and monocytes) and platelets are derived from the myeloid stem cell line.
type. There are many different types of stem cell in the body. Bone marrow (blood) stem cells have the ability to grow and produce all the different blood
cells including red cells, white cells and platelets.
A reduction in the number of circulating neutrophils, an important type of white blood cell. Neutropenia is associated with an increased risk of
Stem cell transplant (haemopoeitic or blood stem cell transplant)
General name given to bone marrow and peripheral blood stem cell transplants. These transplants are used to support the use of high-dose
chemotherapy and/or radiotherapy in the treatment of a wide range of
Neutrophils are the most common type of white blood cell. They are needed
cancers including leukaemia, lymphoma, myeloma and other diseases.
to mount an effective fight against infection.
The most effective and safest therapy currently being used.
General term used for a specialist doctor who treats cancer by different means, for example medical, radiation, surgical oncologist.
A type of white cell involved in controlling immune reactions.
The tumour shrinks to less than half its original size after treatment. In people
with leukaemia, this means that the proportion of blast cells in the marrow
When a chromosome or part of a chromosome migrates onto another
has been reduced, following treatment but not necessarily below five per
cent. There are still some leukaemic cells present.
An abnormal mass of cells which may be non-malignant (benign) or malignant
A doctor who specialises in the laboratory diagnosis of disease and how
disease is affecting the organs of the body.
Pictures of the body's internal organs built up from the interpretation of
Peripherally inserted central venous catheter (see central venous catheter).
reflected sound waves.
It is inserted in the middle of the forearm. PICCs are sometimes used for people having chemotherapy.
Specialised cells of the immune system that protect the body against infection.
There are five main types of white blood cells: neutrophils, eosinophils,
An estimate of the likely course of a disease.
basophils, monocytes and lymphocytes.
Radiotherapy (radiation therapy)
The use of high energy x-rays to kill cancer cells and shrink tumours.
Please refer to the ‘Dictionary of Terms' booklet for further definitions.
The return of the original disease.
Please send me a copy of the following
patient information booklets:
Dictionary of Terms
Acute Lymphoblastic Leukaemia in Adults
Haematology Patient Diary
Acute Lymphoblastic Leukaemia in Children
Acute Myeloid Leukaemia
Autologous Stem Cell Transplants Chronic Lymphocytic Leukaemia
Allogeneic Stem Cell Transplants
Chronic Myeloid Leukaemia
My Guide to Blood Cancer - for adolescents and young adults
Or information on:
Leukaemia & Blood Cancer New Zealand's Support Services
How to make a bequest to Leukaemia & Blood Cancer New Zealand
Leukaemia & Blood Cancer New Zealand
PO Box 99182, Newmarket, Auckland 1149
Phone: 09 638 3556 or 0800 15 10 15
Leukaemia & Blood Cancer New Zealand will record your details to facilitate services and keep you informed about leukaemia and related blood disorders. We value your privacy and take all the necessary steps to protect it. You can access, change or delete this information by contacting us at firstname.lastname@example.org
Acute Lymphoblastic Leukaemia in Adults
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