ACUTE MYELOID LEUKAEMIA (AML): CHILDREN PATIENT INFORMATION 08/2013

PATIENT INFORMATION
08/2013
ACUTE MYELOID LEUKAEMIA
(AML): CHILDREN
If you, or someone close to you, has been diagnosed with a blood cancer or
related condition, we understand that this can be a time of great uncertainty
and confusion.
Having access to reliable and clear information at this time is an important
step towards under-standing your child’s condition and we hope that this
booklet will answer many of the questions you may have.
This booklet is one in a series of booklets we produce, which are written in line
with national guidelines where possible.
We would like to acknowledge the contributions of our patient review group.
MY DETAILS
Name/hospital no. /
Diagnosis
Consultant
Contacts
 Key contact
 Haematology ward
 Haematology clinic
Our booklets provide general information about the topics they describe.
In many cases the treatment of individual patients will differ from that
described in the booklets. Patients should always rely on the advice of their
specialist who is the only person with full information about their diagnosis
and medical history.
Notes
For further information, please contact the Patient Information team on
020 7504 2200.
The information contained in this booklet is correct at the time of going to
press (August 2013). Planned review date is August 2015
Leukaemia & Lymphoma Research, 39–40 Eagle Street, London WC1R 4TH
T: 020 7504 2200 E: [email protected] W: beatingbloodcancers.org.uk
© All rights reserved. No part of this publication can be reproduced or transmitted
without permission in writing from Leukaemia & Lymphoma Research.
Registered charity 216032 (England & Wales) SC037529 (Scotland)
ISBN 978-0-9573064-2-4
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INTRODUCTION
CONTENTS
We hope that you find this booklet helpful. It is one in a series that
we have written for people affected by a blood cancer, or related
condition. The full range of our booklets is listed on the back cover.
My details
Introduction
Hearing that your child has just been diagnosed with a blood cancer or
related condition will be a great shock, and very distressing. You may
feel overwhelmed and confused and there may be many questions
that you want to ask: Why my child? What types of treatment are
there? What is right for them? What are the side effects? What will I
be able to do? What does the future hold? How and where can I get
the help I may need? Where can I go for more information? In our
booklets we try to provide you with some of the answers and also let
you know about other organisations you may like to contact.
Around 30,000 people of all ages are diagnosed in the UK with blood
cancers every year. Leukaemia & Lymphoma Research, is the only UK
charity solely dedicated to improving the lives of all those affected by
blood cancers, including leukaemia, lymphoma and myeloma. Each
year, we invest over £20million in improving the lives of patients and
bringing us closer to our vision of beating blood cancers.
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Introduction to childhood AML
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Coping with your child’s illness
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Normal blood cells
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The immune system
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More about the disease
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Signs and symptoms
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Tests and scans
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Treatment31
Outlook46
Help and support
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Questions you may like to ask
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Feedback form
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Please do get in touch if you would like more information about us
or if you would like to speak to someone in our Patient Information
team.
We would welcome your feedback on our information booklets as we
want to ensure that they are as helpful as possible.
Please use the form on the back page of this booklet, or go to
beatingbloodcancers.org.uk/bookletsurvey
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INTRODUCTION TO CHILDHOOD AML
Acute myeloid leukaemia (AML) is a form of cancer which affects
blood producing cells in the bone marrow. The word ‘acute’ means
developing quickly, while ‘myeloid’ refers to the type of white blood
cell affected by the condition.
This booklet describes the treatment which will be given to most
children with AML; the main exceptions are a specific type of AML
called acute promyelocytic leukaemia (APL) and AML affecting a
child who has Down syndrome. If your child has APL this condition
will be treated using different drugs to those used for most AML;
APL treatment is very similar for children and adults and there is a
separate Leukaemia & Lymphoma Research booklet on this condition.
There is no current UK trial for children with AML. Childhood
leukaemia experts are working to develop a new trial for children
with AML. If there is a trial available when your child is diagnosed
you will be given information about the trial. Treatment of AML
is very similar in children and in adults. The information in this
booklet is based on national guidelines which have been produced
to bridge the period between the end of the previous trial and the
opening of a new trial.
There has been a steady improvement in treatment outcomes for
childhood AML and more than six out of ten children are now cured.
If your child has APL, or has Down syndrome and has been diagnosed
with AML, their specialist will provide detailed information about
treatment and outlook.
AML is most common in later life; beyond 50 years old, but can affect people
of any age. The condition is a little more common in boys than in girls.
It is unusual for there to be a long delay before diagnosis, although,
due to its rarity, a family doctor may not immediately consider AML as
a possibility. In most cases the diagnosis is clear once the child has a
sample sent for a routine blood test.
Children with AML usually start treatment within days of being
diagnosed. Treatment is given in hospital, and usually lasts about four
to five months, as a series of four courses of treatment, each lasting
about four to five weeks. There is a break between courses, during
which your child will often be able to go home. Depending on the age
and condition of your child and the exact chemotherapy given, it is
usually possible for your child to go home earlier after courses three
and four than after the first two courses. This is because the first two
courses of treatment are more intensive and your child often takes a
little longer to recover normal blood cell production.
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COPING WITH YOUR ILLNESS
Being told that your child has cancer can be very upsetting and may
bring with it many different emotions. There are some important things
to think about, and we hope that this section of the booklet will help
you to cope and to understand the information you are being given.
Being clear about your child’s diagnosis
It is important that you are clear about your child’s diagnosis. It is
usually a good idea to ask your child’s consultant to write it down so
that you can refer to it or can show it to the people you may contact
for help and information, so that there is no confusion. Knowing your
child’s diagnosis will help them to offer you the best possible support.
It is very rare that there is any doubt about the diagnosis of childhood
AML. There are different types of childhood AML and it may be a few
days before all the necessary tests are completed. The most significant
subtype in this respect is one called acute promyelocytic leukaemia
(APL) which is treated in a very different way to other types. Before
your child starts treatment, tests will be done to find out whether
the diagnosis is APL or another form of AML; this will not delay your
child’s treatment. Your child’s specialist will tell you if your child has
APL and will explain how this will affect treatment and the outlook.
The healthcare team
Your hospital should give you contact names and details for your
child’s consultant, clinical nurse specialist and other members of their
healthcare team.
Any family whose child has a diagnosis of any form of cancer is normally
given a key worker, usually a clinical nurse specialist. That person will act
as your point of contact with the rest of the healthcare team.
Children with cancer, including leukaemia, are always treated in a
specialist centre. A child with leukaemia will be treated by a paediatric
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haematologist - a doctor who specialises in treating children with
blood diseases, such as leukaemia.
It is usual, when a patient is diagnosed with a serious illness, for their
condition to be discussed at a multidisciplinary team (MDT) meeting.
A MDT brings together doctors, nurses, pharmacists, physiotherapists,
dietitians and any other specialist staff who will be directly involved
in your child’s care. All members of the MDT looking after your
child will be specialists in treating children. The MDT may also
include non-clinical staff such as play specialists, social workers and
teachers. MDTs meet regularly and review all patients being cared
for by that team. The meeting is usually led by a senior consultant
and it will allow the team looking after your child to be aware of any
development in their condition and how they can be treated in the
best way.
Later you may want to ask the consultant or key worker if it is
possible for you to talk with another parent whose child has had
the same diagnosis and treatment as your child. If you choose to
do this, it is important to remember that each patient is different
and your child may have a very different experience to others with
an apparently similar diagnosis. An example is side effects from
treatment. Some children will have very unpleasant side effects from
a drug which another child can tolerate very easily.
If your child is being treated by any other doctor or healthcare
worker, you should tell them about the AML diagnosis. This may
affect their diagnosis of your child’s condition, or what treatment is
recommended.
Finding out about your child’s condition
People feel differently about how much information they want and
when they want it. You may not want a lot of information at the
beginning; you may want it bit by bit or you may want to have as
much information as possible. It is important to let the consultant
and clinical nurse specialist know how much information you want.
Almost all children with leukaemia start treatment within a few days
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of being diagnosed. It is very likely that you will be asked about your
child being treated in a clinical trial, which will mean making an early
treatment decision. Your child’s healthcare team understands that this
can be very difficult and they will explain what this will involve.
given. It is very common now for parents to be given copies of letters
from the hospital to the GP. If you receive a copy and you are worried
or puzzled about anything in the letter, you should let the hospital or
GP know. Often an explanation can help to reassure you.
You can always ask for more information at any time. Even if you
decide at the beginning that you do not want detailed information, it
is always possible to ask more questions or for more information later
on. If you have questions about your child’s condition, it is a good
idea to write them down and have them to hand when you see their
consultant or key worker. If they are not the best person to ask, they
can tell you who you should speak to. You can find some suggestions
of questions you might want to ask at the end of this booklet.
Emotional impact
Most children’s cancer units will have at least one clinical nurse
specialist and it may be possible to arrange time with them to
discuss your child’s condition. Some people prefer this to asking the
consultant. You should decide what is right for you.
It is usually possible for you to take someone into the room with you
on visits to the consultant. This person need not be a family member
– you can choose who you want to be there. It may be more difficult
to arrange for someone to be there with you when you speak to the
consultant if your child is staying in hospital, but you should always
ask, if this is what you would like.
Often it is difficult to decide how much to tell people about your
child’s diagnosis and treatment and then for them to know if they
are expected to keep this confidential. If you work, or are at college,
you may find support from colleagues or through a human resources
department. It is likely that you will need to tell at least a few people
at work or college as it can be difficult to ask for time off at short
notice if no-one knows about your child’s illness.
It can be very stressful to have to discuss your child’s condition lots
of times. You may find it easier to ask someone you trust to pass on
details on your behalf.Your GP will always be kept informed about
your child’s condition and about what treatment your child is being
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For most parents, the initial news that their child has a serious
condition is a great shock. Usually, friends and family will rally round
and offer support but it may be harder for them to understand the
long-term emotional impact of dealing with your child’s illness.
There are many organisations which will support family and friends as
well as patients. The Children’s Cancer and Leukaemia Group brings
together healthcare specialists who care for children with cancer and
also offers support and information to parents.
Your child’s healthcare team should assess the family’s emotional,
as well as physical, needs – this is called a holistic needs assessment.
This is repeated at stages during your child’s illness, as treatment can
take a long time and you may experience many different emotions at
different stages. Making contact with one of the organisations listed
towards the back of this booklet and speaking to others in a similar
situation can be very helpful. These organisations can offer support
both for you and for other family members.
Brothers and sisters of a child with leukaemia may have some
difficulty in coping with the changes to family routine. They may
resent the extra attention given to the affected child and may feel
guilty about this resentment. You can get advice on dealing with
this from the healthcare team. If there are brothers or sisters
who are at school or playgroup, it is very important to let their
teachers, childcare minders or anyone else caring for them know
that they are under stress at home. It is also important to keep the
school or play group informed so that the family can be warned if
a brother or sister has been in contact with any infection.
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The future
You may find it particularly difficult to ask about or to discuss your
child’s future. (You may know this is called a ‘prognosis’.) Your child’s
hospital is not allowed to give detailed information to anyone, not
even other family members, unless you give your permission. You
need to decide who you want to know about your child’s condition
and treatment and to make sure that your child’s healthcare team and
the hospital know what your wishes are. (You can change your mind at
any time.)
You should remember that the outlook may change, for example
based on how well your child’s condition responds to treatment. If
there is a change in their condition, or if they have completed all or
part of their treatment, it may be a good idea to ask whether this
affects the prognosis.
What you may need to do
Work and domestic arrangements
If you work or are studying, you may need to contact your employer,
school or college or have someone do this for you. Most employers or
places of study will do all they can to help.
You may make a short-term arrangement with an employer or college
at the time of your child’s diagnosis for time off to take your child to
hospital. If you have to stay in hospital with your child during their
treatment, you will probably need to make a more formal agreement.
It may be necessary to have a letter from the hospital or other written
proof of your child’s diagnosis from your key worker or clinical nurse
specialist and the effects of this on your ability to work or study.
People with cancer, or any other serious disease, are covered by a
law called the Equality Act – for the purposes of the Act, cancer is
considered a disability. The Equality Act provides rights for people
not to be directly discriminated against or harassed because they
have an association with a ‘protected person’. This can apply to a
carer or parent of a child with cancer. This means that employers and
places of study are required by law to make reasonable arrangements
for ‘people with disabilities’ or for their parent or carer, and cannot
discriminate against you. An example would be if you need time to
attend hospital for your child to receive treatment. Your employer has
to make this possible and is not allowed to ‘dock’ your pay or to make
you take the time as unpaid leave.
Getting to hospital
Children with AML usually stay in hospital part of the time they are
being treated. If your child is staying at home in between treatment
times you may need to take your child to the hospital for check-ups
or if they become ill. This may also be necessary for follow-up checks
after your child has finished treatment. If this is difficult because of
transport or for other reasons, you can ask your child’s consultant
if any check-ups can be given near to where you live. This may not
always be possible but often it can be arranged. It will depend on the
facilities which are available closer to your home.
If it is necessary for you to go to the hospital, they may be able to
arrange hospital transport. If you can arrange transport, but not at
clinic times, it may be possible for the consultant to see your child at a
different time. Sometimes, consultants hold clinics at other hospitals
in the area to make it easier for people who cannot easily travel.
Financial support
If you have other children or you have someone who is dependent on
you, you may need help in carrying out this role during your child’s
treatment, this may require making alternative care arrangements for
the people you look after. Your child may have unplanned stays in
hospital because of infection or other acute problems and it is helpful
to have plans in place just in case this happens.
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It is very difficult to think about financial arrangements when your
child has just had a diagnosis of a serious health condition, but there
are many sources of help and advice. It is very common for parents of
a child with leukaemia to need a great deal of time off work to care for
their child. You may decide that one parent should give up work and
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this may affect family finances. If you are a single parent, it may be
difficult to combine work with caring for your child.
Your hospital will normally have medical social workers or welfare
rights (benefits) advisors who can give expert advice on benefits you
may be able to receive. They can also advise on your rights under the
Equality Act. You should ask to speak with one as soon as possible
after your child’s diagnosis. Alternatively the hospital may be able to
arrange a visit by an advisor from a local office or cancer information
centre.
If you are on a low income, or unemployed, there may be additional
benefits which will help you to cope with extra costs, such as getting
to hospital to visit your child or for treatment or check-ups.
You will not need to pay for prescriptions for your child. When your
child has left school or is over the age of 18 they will no longer be
entitled to free prescriptions, but if they are still being treated for
any condition related to their leukaemia (including late effects of
cancer treatment), they can apply for a medical exemption certificate.
This would mean that they would not have to pay charges on any
prescriptions. Application forms are available from a GP surgery or
some hospital clinics.
Changes in your condition
If you notice any change in your child’s general health, or if there are
any symptoms which are worrying you, you should not hesitate to
contact your child’s key worker who can arrange, if necessary, for an
earlier check-up visit.
There is information on some symptoms that you need to be aware of
later on in this booklet on page 22.
NORMAL BLOOD CELLS
In order to understand your child’s condition, it may be helpful to
understand a little about the normal functions of blood and bone marrow.
The blood
This section provides information about: the blood and blood cells;
the bone marrow, which is where blood cells are produced; and the
immune system.
The blood functions as a transport system to carry food and oxygen
to the tissues and to carry waste chemicals away to the kidneys and
lungs to be passed out of the body. It also carries proteins and other
‘building blocks’ around the body to where they are needed to form
new tissues.
It acts as:
a defence system, as white cells carried in the blood are part of the
immune system and travel where they are needed to fight infection
a communication system, as organs in the body release hormones
into the blood which act as chemical messengers
a repair system; like a self-sealing tyre, it contains cells and
chemicals which can automatically seal off damaged blood vessels
and control blood loss.
The blood contains three types of cells: red cells, white cells and
platelets.
Red blood cells (erythrocytes)
These contain a pigment called haemoglobin, which can pick up
oxygen and carry it from your lungs to the tissues. Muscles and
other tissues need oxygen to produce energy from your food.
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White blood cells (leukocytes) – neutrophils and monocytes,
eosinophils and basophils and lymphocytes
Different types of white cells either ‘swallow up’ bacteria or fungi,
destroy parasites, or produce antibodies to fight infection.
 Platelets (thrombocytes)
These stick together at the site of any tissue damage to stop
bleeding. They also release substances that trigger the forming
of a firm clot, a scar and healing.
The numbers of each type of blood cell vary from person to person
but they are quite stable for people who are healthy.
Blood cell production
All types of blood cell are produced by stem cells in the bone marrow,
which is a spongy tissue in the middle of bones. About one in every
10,000 bone marrow cells is a stem cell. Stem cells are blood cells
at the earliest stage of development. When a stem cell divides, it
produces either replacement stem cells or cells which form blood –
these are known as progenitor cells.
Progenitor cells divide a number of times and each time they divide
they mature, which means they become more like a fully formed
blood cell. Mature blood cells do not divide. Leukaemia, and related
conditions, all arise in the progenitor cells or stem cells.
The bone marrow produces a very large number of cells every second
– about three million red cells and about 120,000 white cells. All blood
cells grow old and die when they are no longer needed. The growth
and production of blood cells in the bone marrow is carefully balanced
to make sure that you have the exact numbers you need of each type
of cell to keep your body healthy. Too many or too few of any type of
blood cell can cause you to become unwell. With leukaemia, most of
the symptoms are not caused by the large number of abnormal cells
present but because the bone marrow is unable to produce normal
cells fast enough.
You can find out more about normal blood and bone marrow and other
topics covered in this booklet on the Leukaemia & Lymphoma Research
website beatingbloodcancers.org.uk/chamllinks
Blood cell production
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THE IMMUNE SYSTEM
The immune system is a network of cells, tissues and organs which
defend the body against infection by bacteria, parasites, fungi or
viruses. The immune system can also detect and destroy cancer cells
but this does not always work effectively. Some types of cancer are more
likely to affect you if your immune system is not working properly.
The most important organs of the immune system are the spleen
and the thymus. The spleen may become swollen in some types of
leukaemia, although this is less common in AML than leukaemia of
lymphocytes. Its main functions are to filter the blood for bacteria
or other infections, and to remove worn out blood cells. The thymus
is an organ in the upper chest which plays a very important role in
the development of the immune system. The thymus is quite large in
young children but shrinks to a very small size by adulthood.
All blood cells except lymphocytes are known as myeloid cells. This
includes most types of white blood cells, red blood cells and platelets.
AML can affect any type of myeloid cell, including those which
produce red cells and platelets.
Because AML affects cells of the immune system, it very often affects
the body’s defences. This means that your child may be more likely to
develop infections and these may be more severe and last longer. This
happens because your child’s body is less able to defend itself against
infection by bacteria or viruses. The healthcare team can suggest
ways in which the risk of infection can be reduced.
You can find out more about the immune system and other topics
covered in this booklet on the Leukaemia & Lymphoma Research
website beatingbloodcancers.org.uk/chamllinks
Immune system
MORE ABOUT THE DISEASE
Incidence
AML is most common in adults, particularly in later life. AML makes
up about 15 in every 100 of all cases of childhood leukaemia. After
childhood, the condition remains unusual until the age of about 40
years after which it becomes progressively more common.
Boys are affected slightly more often than girls.
Causes
In almost all cases there is no apparent cause. AML is not typically an
‘inherited’ disease; in other words, it is not passed on from parent to
child. Very occasionally, there have been families in which more than
one generation has been affected.
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There are some things which are known to increase the risk that a
child will develop AML. One of the clearest of these is exposure to
very high radiation levels. Very few, if any, children in the Western
world are exposed to levels of radiation high enough to increase
the risk of leukaemia. In particular, there have been no reports of
increased numbers of cases of childhood AML near nuclear facilities.
People who have received anti-cancer drugs to treat other forms of
cancer show a raised incidence of acute myeloid leukaemia (AML).
This is often referred to as therapy-related AML, and usually happens
between one and ten years after exposure depending on the drug.
Children who have an inherited condition called Down syndrome are
more likely to develop leukaemia than other children. AML associated
with Down syndrome is often a particular type known as FAB M7 or
acute megakaryocytic leukaemia.
Classification of AML
One of the most important tests in deciding on treatment of AML
is called cytogenetics. This means examining the affected cells to
see what changes are present in the chromosomes. Chromosomes
are found in almost all cells in the body and they carry the genetic
blueprint for producing new cells. In any form of cancer, including
leukaemia, there are abnormalities of the genes.
Cytogenetic tests are usually done on a bone marrow sample. The
most common type of change is called a translocation and involves
swapping-over of parts of two chromosomes. These changes are
particularly important in planning treatment of AML. The World
Health Organisation (WHO) classification system is mainly based on
the cytogenetic changes seen in the leukaemia cells.
There are four main groups within the WHO classification; most cases
of childhood AML fall into a group called AML with recurrent genetic
abnormalities. In this group, the leukaemia cells have characteristic
chromosomal abnormalities (typically exchanges of genetic material
called translocations). These abnormalities tend to predict how the
disease will respond to treatment.
Before starting treatment your child will be classified as good risk,
high risk or standard risk, on the basis of their cytogenetic results.
It is very important to understand that good, standard and high risk
refer to the chances of a good response to standard treatment. Your
child may respond well to treatment even if classified as high risk, and
being standard or good risk does not guarantee a good response.
FAB system
The FAB system is no longer commonly used but you may still hear
your child’s doctors or nurses using these descriptions. This older
system recognises eight subtypes called M0 to M7. The numbers in
the FAB system have nothing to do with the seriousness of the illness.
If your child has M0 AML this does not imply that the condition will
have a better or a worse outlook than M7 AML.
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SIGNS AND SYMPTOMS
There are many different ways in which a child with AML may first be
diagnosed. The most common signs and symptoms are: tiredness and
breathlessness due to anaemia; frequent infections because of low
white cell counts; and bruising or bleeding due to low platelet levels.
Children may also complain of bone pain. It is important, once your
child starts treatment, to be aware of signs and symptoms which show
a need to take your child to the hospital.
You can find out more about signs and symptoms related to AML and
other topics covered in this booklet on the Leukaemia & Lymphoma
Research website beatingbloodcancers.org.uk/chamllinks
Less often symptoms may be caused by leukaemia cells entering into
other tissues. Examples include:
 enlarged lymph nodes (glands)
 enlarged liver or spleen
 chloromas (which are masses of leukaemic cells, often within the skin).
Some signs are mainly seen in specific subtypes. Acute promyelocytic
leukaemia can sometimes be associated with severe bleeding. Other
subtypes may lead to swollen gums or to enlargement of the liver,
spleen or lymph nodes. They are also more likely to have leukaemia in
the central nervous system and a condition called leucostasis in which
blood flow is slowed and even locally blocked. Leucostasis happens
when there are very large numbers of leukaemia cells in the blood.
Because of your child’s condition, there is an increased risk they will
develop an infection, but they may not have obvious symptoms.
If they develop any of the following symptoms, you must contact the
hospital team without delay:
 a raised temperature, cough or sore throat
 confusion or agitated behaviour, especially if this comes on suddenly
 rapidly becoming more ill
 fast heart beat and breathing
 difficulty in passing urine or not producing urine
 abruptly increasing pain.
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TESTS AND SCANS
Laboratory tests
How AML is diagnosed
There is a website, supported in part by the Department of Health,
which provides detailed in-formation on laboratory tests. The web
address is labtestsonline.org.uk.
The diagnosis of AML is made on the basis of laboratory tests.
Throughout your child’s illness there will be many tests and x-rays
or scans carried out. These are needed to see how the condition is
responding to treatment, to look for any complications caused by
the illness or its treatment, and to check for other problems such as
infection.
The most important tests for a child with AML are the full blood count
and bone marrow samples. The full blood count will show if there
are any leukaemia cells in your child’s blood. The bone marrow is the
place where blood cells are made and there may be leukaemia cells
here, even when the blood is normal.
Your child will also need to have samples taken of the fluid which
surrounds the brain and the spinal cord (cerebrospinal fluid – CSF).
This is done by placing a needle into the space around the spinal cord,
a procedure called a lumbar puncture. When your child is having a
bone marrow sample taken or a lumbar puncture, they will usually
be given a general anaesthetic so that they will sleep through the
procedure. An older child may be given a sedative instead.
A test called a cytogenetic analysis may influence which initial
treatment your child will receive. You can ask, at any time, for an
explanation of why a particular test is being done and what the results
mean. A special test called minimal residual disease (MRD) may be
used to guide the medical team in making treatment choices. (This is
explained on page 30.)
Full blood count
This is a blood test that measures the numbers of each type of cell
in the blood: red cells, white cells and platelets. It will also allow the
doctors to look for the presence of plasma cells in the blood. Most
patients with myeloma do not have plasma cells in the blood but, if
they appear, this may change the diagnosis to plasma cell leukaemia.
If this happens your specialist will explain the significance to you.
You will probably have this test quite often and you should be aware
of the results of your blood counts as they can affect your everyday
life. The treatment you have can affect the ability of the bone marrow
to produce new blood cells.
You may like to keep track of your blood counts. If you want to do
this, your consultant or specialist nurse will be willing to explain
the significance. It is particularly valuable to keep a record of results
if you are receiving care for other medical conditions, possibly at
different hospitals. This will make sure that whichever hospital you
attend you will always have the most important test results available.
Liver function test
This is a blood test to check if the liver is working normally. It is
very important if your child is on chemotherapy, as many drugs are
broken down in the liver. If the liver is not working normally, it may be
necessary to adjust the doses which are given.
Urea and electrolytes
This is a blood test to check how well the kidneys are working. It will
help the doctors to calculate the doses of drugs needed and it will also
show any damage that may have been caused either by the cancer or
its treatment. It can also show if your child has become dehydrated.
24
GLOSSARY
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25
Cytogenetics
All forms of cancer, including blood cancer, involve changes in genes in
the affected cells. (This is not the same as an inherited genetic cause.)
Information about the exact changes present in the cells can help
doctors to diagnose your child’s illness, to decide how likely it is
that the condition will respond to standard treatment, and to help
monitor response to treatment. The study of these changes is called
cytogenetics. Cytogenetic analysis can be done on cells from the
blood or from bone marrow. It is not always possible to show the
abnormalities but they are always present. Normal cytogenetic results
do not mean that the cells are normal, just that the changes are too
small to detect.
The results of cytogenetic tests are very important in making
treatment choices during the first phase of your child’s treatment. At
later phases of treatment, results from other tests are used to guide
treatment decisions.
Biopsy
Biopsy means taking a sample of a tissue or organ to be examined in
the laboratory. The only type of biopsy sample commonly taken for a
child with AML is a sample of bone marrow.
Bone marrow sample
Bone marrow aspirate
This is a procedure to assess any abnormalities in the bone marrow.
A small amount of bone marrow is taken, using a needle, from the
hip bone. This can be done as an outpatient with the use of local
anaesthetic alone or with some mild sedation but is usually done
under general anaesthetic in children. The actual procedure is usually
quite quick but is likely to be uncomfortable for the short time
the sample is being taken from the marrow. Once the sample has
been obtained, the doctors will look at the bone marrow under the
microscope and assess it and any disease that may be present.
26
Taking a bone marrow sample at the time your child is diagnosed
is important to establish the exact type of leukaemia they have
developed. Further samples will be needed to allow the doctors to
check how well the condition is responding to treatment.
Bone marrow trephine
At the same time as a bone marrow aspirate, your child may also
have a trephine biopsy. This is the removal of a ‘core’ of bone
marrow from the hip bone under local anaesthetic. This sample
provides information about the structure of the bone marrow and
the number and distribution of the different blood cell types and
cancer cells if present.
X-rays and scans (imaging)
Most hospitals are now able to do far more than just plain x-rays.
They also use CT scans and MRI scans, which show up soft tissues
(non-bony parts) much more clearly than x-rays. Ultra-sound gives a
less detailed picture than CT or MRI scans but it can be very useful,
for example, in measuring the size of the spleen. Great care will be
taken to make sure that your child is not exposed to radiation unless
absolutely necessary.
During a CT scan or MRI scan it is not usually possible for you to
be in the room with your child but they will usually be able to see
you through a window and you can normally talk to them over an
intercom.
X-ray
X-rays provide very good images of the denser tissues in the body,
such as bone. They may be used at the time of your child’s diagnosis
to check for infection or other chest problems; and during treatment
to check for chest infections if your child’s white cell count is low.
GLOSSARY
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27
Magnetic resonance imaging (MRI)
This scan uses radio waves rather than x-rays and produces images
that can be analysed on a computer. Your child will be asked to lie
on a table and the table will move them through the scanner. It is not
painful but it can take up to an hour to perform. Because the machine
is very noisy, your child may be given headphones to listen to music
during the procedure. They may need to have some fluid injected into
a vein to help the computer form a better image. If necessary, your
child will be given a sedative. For very young children the whole scan
may be done under a general anaesthetic.
Chest x-ray
CT or CAT scan
This is a form of x-ray that produces a detailed picture of internal
organs. It is a painless procedure where your child will need to lie on a
table that moves into a cylindrical tunnel while the pictures are taken.
Their body is not completely enclosed at any time and they will be
able to talk to the radiographer during the procedure. The results can
take some time to reach your team, so do not worry if you do not hear
about them straight away.
CT Scan
Your child may need to have some fluid dye injected into a vein to
help the computer form a better image. For very young children the
whole procedure may be done under a general anaesthetic.
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29
Special tests
Treatment
Minimal residual disease (MRD)
AML is a fast-growing disease and it is very important to receive
effective treatment soon after diagnosis. Most children respond very
well to initial treatment and no leukaemia cells can be found in their
blood or bone marrow at the end of this stage – a remission. With
modern treatment protocols the cure rate has improved significantly.
Minimal residual disease is the small number of leukaemia cells that
are still present, even when a patient is responding well to treatment.
By looking at blood cells through a microscope the lowest number of
leukaemia cells that can be detected is about one leukaemia cell in 100
normal cells. It is now possible to detect leukaemia cells at levels as
low as one leukaemia cell in 100,000 to 1 million normal cells.
There is not yet enough information for doctors to use MRD results
routinely to help plan treatment. Your child may have these tests done
and if so, the specialist will discuss the relevance of the tests and their
results.
Treatment normally begins within a few days of diagnosis. Although
there is a degree of urgency, it is better to wait until all the necessary
information is available because this allows doctors to offer the
appropriate treatment to each individual patient. In particular it is
necessary to take time to check whether a child has APL as this form
must be treated differently. Virtually all children diagnosed with
leukaemia in the UK are treated at specialist paediatric referral centres.
Lumbar puncture (spinal tap)
A lumbar puncture, often called a spinal tap, is a common medical test
that involves taking a small sample of cerebrospinal fluid (CSF) for
examination. The needle is very carefully inserted between the bones
of the lower spine (backbone).
Your child will also receive some chemotherapy injections directly
into the CSF. The number of chemotherapy injections will depend on
whether any leukaemia cells are found in the CSF at the time you child
is diagnosed. This is discussed in detail in the treatment section.
30
Risk groups
During this course of treatment all children will be classified into one
of three risk groups. This is done initially on the basis of cytogenetic
results and may change depending on the response to initial
treatment.
The risk groups are good risk, standard risk and high risk. Your
child’s doctor will explain to you about risk groups and how this may
affect your child’s treatment. It is important to understand that these
risk groups mean that most children in good or standard risk will do
better than high risk if given the same treatment. Children with high
risk disease are given different treatment and may do very well. In the
same way it is important to understand that, although most good and
standard risk children do well, this is not always the case.
GLOSSARY
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31
Chemotherapy
The use of drugs in treatment is called chemotherapy.
All children with AML receive treatment to prevent the leukaemia cells
“hiding” in the cerebro-spinal fluid (CSF), which is the fluid which
surrounds the brain and spinal cord. This is given as injections into
the CSF which are called intrathecal injections.
Drugs used during treatment
The following drugs are used in various combinations in the treatment
of childhood AML:
The ways that chemotherapy can be given are:
Orally
As a tablet/capsule
Intramuscular injection
Into a large muscle – usually the buttock
Intravenous injection
Into a large vein in the arm or through a central line
Subcutaneous injection
Under the skin surface
Intrathecal injection
Into the fluid around the spinal cord
Intravenous drip
• Daunorubicin
There will also be a need for antibiotics to prevent bacterial infections
and antifungals to prevent fungal infections. When cytarabine is given
in high doses your child will need two hourly predniso-lone eye-drops
to prevent conjunctivitis. The eye drops must be continued for five
days after the last dose of cytarabine.
Daunorubicin and idarubicin are both examples of a type of drug
called anthracyclines. This is important because anthracyclines can
damage the heart, and the risk depends on the total dose of this
type of drug. This may affect the choice of drugs for consolidation
treatment. Special tests to assess heart function will be done before
each course of treatment which includes daunorubicin or idarubicin,
and again at the end of treatment, and then every five years.
You can find out more detailed information on how these drugs are
given and on their side effects on the website: medicines.org.uk/guides
• Etoposide
• Fludarabine
• G-CSF
• Idarubicin
• Cytarabine
Intrathecal injection
• Methotrexate
• Hydrocortisone
• Cytarabine
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33
Stem cell transplantation
Stem cell transplant is the term now used in preference to bone
marrow transplant. This is because now stem cells are often collected
from circulating blood or, for treatment of children, from cord blood
(blood from the umbilical cord of donors).
Most children with AML will respond very well to chemotherapy
and will not require a stem cell transplant. The place of stem cell
transplantation is restricted to consolidation (see below) for children
with high risk disease and those children who have experienced a
relapse early in their treatment or who have suffered more than
one relapse. In the unlikely event that your child needs a stem cell
transplant, the consultant will give you detailed advice on what is
involved and the risks and benefits.
Stem cell transplants are not given for children with good or standard
risk disease but may be recommended as consolidation for children
with high risk AML. Practice varies between different treatment
centres and according to parents' wishes. If your child is considered
for a stem cell transplant you will be given information and
opportunities to think about this and to ask questions before you are
asked to decide. Stem cell transplant is only an option if there is a well
matched donor available. The ideal donor is a tissue-matched brother
or sister but improvements in transplant techniques mean that a well
matched unrelated donor is almost as good an option.
34
Phases of treatment
Treatment of AML is based on a series of short intensive blocks of
treatment given over a total period of about 4–5 months. There are
gaps of a week between blocks of therapy, during which your child
will probably be able to go home. The necessary level of supportive
care can only be provided in hospital. It may include barrier-nursing
to protect your child against infection and intensive treatment with
intravenous antibiotics or antifungal drugs if infection occurs. Your
child will need red blood cell and platelet transfusions.
Phase 1 – Induction (or remission induction)
This is the first five weeks of treatment and it uses intensive
treatment to destroy as many leukaemia cells as possible. The first
course of treatment is the same for all children – it is called ADE and
uses the drugs cytosine arabinoside, daunorubicin and etoposide. The
chemotherapy is given over a period of ten days. Typically, the normal
blood cells will recover 2–4 weeks later.
If your child is classed as good or standard risk then induction will
be completed by a second course of ADE chemotherapy. If your
child is classed as high risk then the second block of induction will
be a different combination of drugs called FLAG-Ida. FLAG-Ida uses
fludarabine, G-CSF and idarubicin. G-CSF is a substance which the
body produces naturally to tell the bone marrow to release more
neutrophils into the blood. G-CSF is given with chemotherapy to make
leukaemia cells more vulnerable to being destroyed by chemotherapy
drugs. The evidence for use of G-CSF is very weak and some centres
do not include this in their version of FLAG-Ida.
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35
If your child is standard or good risk then consolidation will consist
of two courses of treatment called high-dose Ara-C. Ara-C is another
name for cytarabine and this treatment uses just cytara-bine given in
high doses. This can cause irritation of the eye (conjunctivitis) and, to
prevent this, your child will have two hourly prednisolone eye drops.
The eye drops must be continued for at least five days after the last
cytarabine dose.
For high-risk children, the choice of consolidation will depend
on whether a stem cell transplant is an option. As mentioned, in
some centres this is not routine practice for high-risk children. It
is also possible that, after discussing the options with your child’s
specialist you may decide against a stem cell transplant. If a highrisk child is not receiving a transplant then consolidation will be
two further blocks of chemotherapy. One of these blocks will be
FLAG-Ida, as given during high-risk induction, and the other will
be FLAG. This is based on the need to restrict the total amount
of anthracycline given. If your child is going to have a stem cell
transplant this may be the only treatment given as consolidation.
If there is a delay for any reason before giving the transplant, your
child may be given FLAG-Ida or FLAG chemotherapy and then a
transplant. This is because it is important that your child is in still
in complete remission at the time of the transplant.
Phase 2 – Consolidation
Most children will be in remission at the end of the induction phase
of treatment – this means that there is no evidence of disease in the
blood or bone marrow. If treatment is stopped at this stage there is
a very high risk that the disease will return (relapse). The purpose of
consolidation is to prevent relapse.
If your child is high risk then this will not change but if your child is
standard or good risk this may change to high risk if their condition
has not responded well to initial treatment. A standard-risk child
who is not in complete remission at the end of the first block of
treatment will be re-classified as high risk and a good-risk child will be
reclassified as high risk if not in complete re-mission after the second
block of treatment.
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37
Central nervous system (CNS) directed therapy
Treatment of relapse
Your child will have had a lumbar puncture at the time of diagnosis.
This is to check whether there are any leukaemia cells in the CSF
(the fluid around the brain and spine). If there are leukaemia cells
present this is known as CNS disease. Drugs given in the normal way
do not enter the CSF, so any leukaemia cells here will not be killed by
standard treatment.
If your child has a good initial response to treatment, with no
leukaemia cells detectable, this is called complete remission. Sometimes
the condition will return and this is called relapse. Relapse is more
difficult to treat, especially if it happens early during treatment. One
reason for this is that relapse often occurs because the leukaemia cells
have become resistant to drug treatment. Drug resistance may not be
specific to a particular drug – it may affect all, or virtually all, antileukaemia drugs. This is known as multidrug resistance (MDR).
All children, regardless of whether the lumbar puncture shows
leukaemia cells present, will have CNS directed therapy. If there are
leukaemia cells in the first lumbar puncture then extra CNS therapy
will be given. Whether your child has good, standard or poor risk
disease, this does not affect the options for CNS therapy.
No CNS disease at diagnosis
If your child’s test at diagnosis is negative, two courses of CNS therapy
will be given. This will be given at the end of each of the first two
courses of chemotherapy and will consist of injection into the CSF of
three drugs: methotrexate, cytarabine and hydroxycortisone. This is
known as triple intrathecal therapy.
CNS disease at diagnosis
If there are leukaemia cells in the CNS at diagnosis, then your child
will have two courses of triple therapy each week until the CNS is
clear, followed by two more courses to “make sure”. At least six
courses will be given in the three weeks following diagnosis.
Your child will then have one course of triple therapy after each course
of chemotherapy until all the main treatment is complete. There will
then be two more courses of triple therapy at monthly intervals.
Although a high proportion of children with AML will achieve a
remission, a significant proportion (20-25%) will eventually relapse.
Relapse is most likely in children in the poor risk group.
Around 70% of children with AML have standard risk disease which
means that most relapses will occur in this group of patients. Children
who relapse a long time after treatment has finished have a better
chance of responding to re-treatment and tend to have a higher
incidence and duration of second remissions. During this period they
will be considered for a stem cell transplant.
If your child does experience a relapse, their specialist will discuss
treatment options and outlook in detail and will answer any questions
you may have.
Although the chance of relapse progressively reduces with time,
particularly once all treatment has been completed, late relapses do
occur and typically appear to result, not from development of drug
resistance, but because not all leukaemia cells have been killed by the
initial therapy. When late relapses do happen, this may respond well
to a repeat of the original treatment. Again, your child’s specialist will
discuss treatment options and outlook with you.
It is very uncommon for a child to still have CNS disease after
completing triple intrathecal therapy. If this does happen, they may be
given radiotherapy to the head area to kill any remaining leukaemia
cells. If this affects your child you will have a chance to discuss this
with the specialist.
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39
Supportive care
As well as the specific phases of treatment described, your child will
need care to prevent and treat infections and to deal with side effects
of treatment. Advances in supportive care have been very important in
improving the chances of a cure for children with AML.
Supportive care includes specialised nursing care to protect your child
from infection and intensive treatment with intravenous antibiotics
or antifungal drugs if infection occurs. Your child will be given
antibiotics to reduce the risk of infection. During outpatient treatment
it is very important to watch out for signs of infection. Your child’s
specialist nurse will advise you on the warning signs and on what to
do if your child becomes ill. It is particularly important to be careful
about exposure to measles or chickenpox. You will be given detailed
advice and, if appropriate, a letter will be sent to your child’s school or
playgroup to explain the situation.
The drugs which are given to treat your child’s illness will also reduce
the ability of their bone marrow to produce normal blood cells. This is
why your child will almost certainly require red blood cell transfusions
and is likely to need platelet transfusions.
Your child will usually have a tube, known as a central line, inserted
into a large blood vessel to allow drugs to be given effectively and
without repeated needle-pricks. There are various types of central lines
used and medical or nursing staff will tell you what needs to be done
to care for the central line. Some types of central line come out onto
the surface of the chest. Other types are linked to a reservoir under
the skin, instead of coming through the skin. This type still requires a
needle to be put through the skin but has less infection risk.
40
Central line
Sometimes a child may find it difficult to eat or drink because of
the side effects of chemotherapy. If this is particularly difficult,
your child may need to be fed through a tube going directly into the
stomach. In this case, you will be shown how to give feeds and how
to care for the tube.
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41
Play specialists and educational support in hospital
For younger children it may be difficult to explain some aspects of
their treatment and they may be distressed at being in a strange place.
One important way to help your child cope is through guided play.
All children’s hospitals now employ play specialists on the ward. The
play specialist is recognised as a key member of the team looking
after your child. They help younger children to understand how their
treatment will be given and how it might make them feel. They can
also help your child to find an outlet for frustration or anger. The play
specialist can work with brothers or sisters who may be affected by
disruption to family routines.
Supporting learning for older children at college is a high priority.
Children’s hospitals have educational staff and schools to provide
teaching while your child is an inpatient. The hospital teaching staff
will work very closely with your child’s school to make sure your
child keeps up-to-date. They will also encourage your child to keep in
contact with their classmates, although they will not be able to arrange
visits for them. This is because hospital policy usually limits visits
from non-family members to minimise the risk of infection.
There is information about education for children with health
problems on the Directgov website. You can find a link on the
Leukaemia & Lymphoma Research website beatingbloodcancers.org.
uk/chamllinks
Fatigue (excessive tiredness)
Even if your child is not anaemic (with a low haemoglobin level), they
may feel exhausted much of the time. This is known as ‘fatigue’ and
is caused by the illness or its treatment. It is not the same as ordinary
tiredness which improves with rest or sleep.
You may wonder how best to deal with fatigue – whether it is better
for your child to rest more than usual or whether they should remain
active. Fortunately, there is clear advice on this: it has been shown that
doing nothing tends to make fatigue worse, while staying as active as
your child can manage will tend to make it less of a problem. Being
active will not make fatigue go away completely, but it will make it
less severe.
If you think your child is being affected by fatigue, you should ask
the consultant or specialist nurse for advice on how to deal with this.
Attending a hospital school will give your child a chance to mix
with other children. The healthcare team works very closely with
the teaching staff to make sure that your child is not at risk from
infection. This may mean that there are times when your child may
not be able to join in with other children.
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43
Diet and exercise
Complementary therapies
There is no evidence that any special diet or exercise program will
improve your child’s health or how your child responds to treatment.
You are likely to find that your child will feel fitter and healthier if you
follow the general advice on good diet and healthy eating and living
from your hospital or GP. A healthy diet and lifestyle will reduce the
risk of infection and help your child to cope with the effects of the
condition and its treatment. You will usually have a chance to speak
to a dietitian about any specific diet recommendations for your child.
You may be considering the use of complementary therapies. There
is an important difference between alternative therapies, which are
offered in place of medical treatment, and complementary therapies,
which are used alongside standard treatment.
Leukaemia & Lymphoma Research recommends that you should not use
any alternative therapies in place of proven medical care.
Many complementary therapies are said to stimulate the immune
system. You should bear in mind that in AML, it is cells of the immune
system which have become abnormal. If a treatment is described as
stimulating the immune system, there is at least a possibility that such
treatment could make the condition worse.
Also, remedies such as herbal preparations may be safe for a healthy
person but, if a child is on treatment, they may be dangerous when
combined with chemotherapy.
If you are considering acupuncture, it is advisable to discuss this
with your child’s consultant and then to seek a medically qualified
acupuncturist who is likely to follow safe practices to avoid infection.
Always make sure that the healthcare team is aware of any
complementary treatments your child may be receiving or which
you are considering. They may advise you to avoid certain forms of
therapy, as there may be specific risks because of the illness or the
treatment being given. In other cases they may say that a therapy is
alright as long as you take specific precautions.
One important change which you should make is to take greater care
against infection, including from food. Because of your child’s illness
and treatment, their body is less able to destroy germs and to resist
infection than previously. This means that you should be particularly
careful about food ‘use by’ dates for example and about things like
keeping cooked and raw meat separate in the fridge.
44
Leukaemia & Lymphoma Research produces a separate booklet on
complementary and alternative therapies.
GLOSSARY
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45
OUTLOOK
The chance of long-term survival for children with AML has improved
greatly. You should discuss your child’s outlook with their consultant,
as this is the only person with detailed knowledge of their illness and
their treatment and response to treatment.
received during childhood. A number of large studies in Britain and
abroad have confirmed that there is no increased risk of cancer or
of an abnormality in children whose parents received treatment for
cancer during childhood.
Your child will have a chance to discuss all of these considerations
with the healthcare team as they reach puberty.
Long-term effects of treatment
Unfortunately, there are, in some cases, long-term adverse (unwanted
or negative) effects from certain aspects of treatment. The long-term
effects of chemotherapy depend on the drugs used, the intensity of
treatment and on the total amount of the drug received. It is more
difficult to establish which drugs are responsible for which long-term
effects in situations like childhood AML where high doses of drugs are
given over a relatively short period of time. There are known longterm problems which result from the use of certain drugs. Your child’s
consultant or specialist nurse will offer you detailed advice before
your child begins treatment.
One common concern of parents and of older children is the effect
on fertility and you will be given information on this at the time of
treatment. The majority of women who were treated in childhood for
AML using standard treatments will not have difficulty in becoming
pregnant. The minority of girls who receive radiotherapy may have
problems in sexual development or in fertility.
Boys who have received radiotherapy may later have difficulty with
their fertility. This varies between patients and it is difficult to predict
exactly how your child may be affected. Fortunately, most boys will
have normal sexual development. It is very important that men who
were treated with chemotherapy as children are aware that fertility
may return unexpectedly. Because of this, it would be unwise for
a sexually active man who has been sterile as a consequence of
chemotherapy to assume that this will always continue to be the case.
An important consideration for both boys and girls is whether there
is a risk of adverse effects on their own children from treatment they
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47
Follow-up
HELP AND SUPPORT
The main reason for follow-up checks on children treated for AML is
early recognition of relapse. During the first year after chemotherapy is
completed, your child will normally be seen every two to three months.
Checks will then gradually become less frequent and are given annually
at five years and beyond. All paediatric specialist referral centres should
have a programme in place to make sure that follow-up is carried out. All
children with AML receive anthracyclines as part of their treatment and it
is important that their follow-up should include tests of heart function.
We have listed a number of organisations with a brief description
of just some of the services they offer. Please contact them directly
for further information.
There is also a page on the Leukaemia & Lymphoma Research website
which contains up-to-date details of organisations which can offer
help and support: beatingbloodcancers.org.uk/helpandsupport
 Cancer Research UK
Offers patient information and a 24-hour helpline
020 7242 0200 (General enquiries) 0808 800 4040 (Helpline)
[email protected] | cancerresearchuk.org
• Children’s Cancer and Leukaemia Group (CCLG)
Offers family support and written information.
0116 249 4460 | cclg.org.uk
• CLIC Sargent
Offers a range of services for children affected by cancer and their families,
including a telephone helpline for emotional support and practical advice.
0300 3300 0803 | [email protected] | clicsargent.org.uk
If your child becomes ill later in life, it is important to make sure that
the doctors looking after them are aware of their past medical history.
The hospital will provide a ‘treatment diary’, with a full record of your
child’s diagnosis, what types of treatment were given and the total
amount of treatment which was given.
48
• Leukaemia Care
Offers patient information, a 24-hour care line and support groups for
people affected by leukaemia, lymphoma, myeloma, myelodysplastic
syndromes, myeloproliferative neoplasms and aplastic anaemia.
01905 755 977 (General enquiries) 08088 010 444 (Care Line)
[email protected] | leukaemiacare.org.uk
49
• Leukaemia & Lymphoma Research
Offers patient information and telephone/email advice on blood cancers
and related diseases.
020 7504 2200 (Patient Information team) | [email protected]
beatingbloodcancers.org.uk | beatingbloodcancers.org.uk
• Macmillan Cancer Support
Offers practical, medical, financial and emotional support.
0808 808 0000 | [email protected] | macmillan.org.uk
• Myeloma UK
Offers patient information, a telephone advice and information line,
an online discussion forum and support groups.
0800 980 3332 | [email protected] | myeloma.org.uk
• Teenage Cancer Trust
A charity devoted to improving the lives of teenagers and young adults with
cancer.
020 7612 0370 | Use form on web site | teenagecancertrust.org
Financial advice
• Citizens Advice Bureau (CAB)
Offers advice on benefits and provides help with filling out benefits forms.
Details of local CAB offices can be found in the Yellow Pages or a local
telephone directory.
0844 411 1444 (England) 0844 477 2020 (Wales) | adviceguide.org.uk
• Department for Work & Pensions (DWP)
Runs a Benefit Enquiry Line (BEL), offering information and help with filling
out claim forms over the phone.
0800 882 200 0800 243 355 (Textphone)
[email protected] | dwp.gov.uk
General financial advice is available from CancerHelp UK, Macmillan Cancer
Support and Leukaemia Care. (See above for contact details.)
Travel insurance
When contacting organisations about insurance you will need
to disclose full details of your medical condition.
You will be asked questions about your condition that you may find
intrusive and possibly upsetting, but these are necessary to make
sure that you are adequately covered.
• Association of British Insurers (ABI)
Provides information about obtaining travel insurance and contact details
for specialist travel companies.
020 7600 3333 | abi.org.uk
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51
• British Insurance Broker’s Association (BIBA)
Offers advice on finding an appropriate BIBA-registered insurance broker.
0870 950 1790 | [email protected] | biba.org.uk
• Macmillan Cancer Support
Provides information about what to consider when looking for travel
insurance. It also has a list of insurance companies which have been
recommended by people affected by cancer.
0808 808 0000 | [email protected] | macmillan.org.uk
Questions you may like to ask
Tests

What tests will I be having?

What might they show?

Where will my child have them done?

Are there any risks associated with the tests?

Are any of the tests likely to be painful?

Do I need to know anything about preparing my child for the tests,
for example not eating beforehand?

Will I get written instructions about the tests?

How long will it take to get the test results?

Who will explain the results?
The aim of my treatment
What is the expected effect of my child’s treatment?
Treatment general

What type of chemotherapy will my child have?

How much time will my child have to spend in hospital and how
often will my child need to attend as an outpatient?

Will my child’s treatment be given by mouth, injection or drip
(into a vein)?

Will my child’s treatment be continuous or in blocks of treatment
(with a break in between)?

How long will my child’s treatment last?

What side effects should be expected from my child’s
chemotherapy?
 Can they be treated or prevented?
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 Will they affect my child all the time or only while taking certain
drugs?

Will my child be able to carry on going to playgroup or school?
YOUR FEEDBACK

Will I need to take special precautions, for example to protect my
child against infection?
We'd love to hear from you
Choosing the right treatment for your child
If you are asked to choose between treatments for your child, for each
treatment you may like to ask your consultant:
Please complete our survey online at
beatingbloodcancers.org.uk/bookletsurvey

What is the best outcome possible for my child?

What is the worst that could happen, eg could the treatment affect
my child’s quality of life?
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OUR BOOKLETS
You can download or order these booklets from our website
beatingbloodcancers.org.uk or call us on 020 7504 2200 for more information.
Leukaemia
 Acute Lymphoblastic Leukaemia
(ALL): Children, Teenagers and Young
Adults (to 25 Years): UKALL 2011 trial
 Acute Promyelocytic Leukaemia (APL)
 Adult Acute Lymphoblastic
Leukaemia (ALL)
 Adult Acute Myeloid Leukaemia (AML)
 Childhood Acute Myeloid Leukaemia
(AML)
 Chronic Lymphocytic Leukaemia (CLL)
 Chronic Myeloid Leukaemia (CML)
 Chemotherapy – What Do I Need
Lymphoma
 Hodgkin Lymphoma (HL)
 Low-grade Non-Hodgkin Lymphoma
(NHL)
 High-grade NHL
 Extranodal NHL
General
 Complementary and Alternative
Medicine
 Dietary Advice for Patients with
Neutropenia
 Newly Diagnosed with a Blood
Cancer
 Supportive Care
 Watch and Wait
Multiple myeloma
M
ultiple Myeloma (MM)
to Know?
 Clinical Trials
 Donating Stem Cells – What’s
Involved?
 Donor Lymphocyte Infusion
– What’s Involved?
 The Seven Steps – Blood & Bone
Marrow Transplantation
 Treatment Decisions
 Undergoing High Dose Therapy and
Autologous Stem Cell Transplant
Booklets for children and young
Related conditions
adults
 Myelodysplastic Syndromes (MDS)
 Myeloproliferative Neoplasms (MPN)  J ack’s Diary
W
iggly’s World
 Y
oung Adults with a Blood Cancer
Treatment
–
What Do I Need to Know?
 Bone Marrow and Stem Cell
Transplantation – for Children
and Adults
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