A practical guide to
understanding cancer
Understanding
chronic
myeloid
leukaemia
Contents 1
Contents
About this booklet
3
1 The blood and chronic myeloid leukaemia
5
2 Diagnosing chronic myeloid leukaemia
19
3 Treating chronic myeloid leukaemia
27
4 Living with chronic myeloid leukaemia
59
5 Work and financial support
75
6 Further information
81
2 Understanding chronic myeloid leukaemia
About this booklet 3
About this booklet
This booklet is about chronic myeloid
leukaemia (CML). It is also known as
chronic myelogenous leukaemia or
chronic granulocytic leukaemia.
We hope it answers some of your questions and helps you deal with
some of the feelings you may have. We’ve also listed other sources
of support and information, which we hope you’ll find useful.
We can’t advise you about your own situation. This can only
come from your healthcare team, who are familiar with your
medical history.
In this booklet we’ve included quotes from people affected by
CML, which you might find helpful. These are taken from the
website healthtalkonline.org
Turn to pages 87–92 for some useful addresses and websites,
and to page 93 to write down questions for your doctor or nurse.
If you’d like to discuss this information, call the Macmillan
Support Line free on 0808 808 00 00, Monday–Friday,
9am–8pm. If you’re hard of hearing, you can use textphone
0808 808 0121, or Text Relay. For non-English speakers,
interpreters are available. Alternatively, visit macmillan.org.uk
If you find this booklet helpful, you could pass it on to your
family and friends. They may also want information to help them
support you.
4 Understanding chronic myeloid leukaemia
1
The blood and chronic myeloid leukaemia 5
The blood and
chronic myeloid
leukaemia
What is leukaemia?
6
The blood
7
About chronic myeloid leukaemia
10
Risk factors and causes
15
Symptoms
16
6 Understanding chronic myeloid leukaemia
What is leukaemia?
Leukaemia is a cancer of the white blood cells. People with
leukaemia usually have more white blood cells than normal.
These leukaemia cells behave differently from healthy white
blood cells.
The four main types of leukaemia are:
•• acute lymphoblastic (ALL)
•• acute myeloid (AML)
•• chronic myeloid (CML)
•• chronic lymphocytic (CLL).
Each type of leukaemia has its own characteristics and treatment.
We have separate information about these different leukaemias,
which we can send you.
The blood and chronic myeloid leukaemia 7
The blood
To help you understand CML and its treatment, it is useful to
know a bit about your blood, how it’s made and what it does.
Blood is made up of blood cells, which move around in a
liquid called plasma. Blood cells are made in the bone
marrow. This is a spongy material in the middle of our bones
– particularly in our pelvis, backbone (spine) and breast bone
(sternum). Normally, millions of new blood cells are made
every day to replace old and worn-out blood cells.
All blood cells are made from cells called blood stem cells.
There are two types of blood stem cell:
•• lymphoid stem cells, which make a type of white blood cell
called lymphocytes
•• myeloid stem cells, which make all the other types of blood
cell: red blood cells, platelets, and white blood cells.
Blood stem cells in the bone marrow divide and grow to make
new blood cells. The new, developing blood cells are called blast
cells. They don’t look like fully developed cells and they can’t do
the jobs that fully developed cells do. Usually, blast cells stay in
the bone marrow until they have developed into red blood cells,
platelets or white blood cells.
8 Understanding chronic myeloid leukaemia
Stem cell
Lymphoid
stem cell
Myeloid
stem cell
Red
blood cell
Platelets
Neutrophil
B-lymphocyte
T-lymphocyte
White blood cells
How blood cells divide
The developed cells are then released into your blood to carry out
different functions:
•• Red blood cells contain haemoglobin (Hb), which carries
oxygen from your lungs to all the cells in your body.
•• Platelets are very small cells that help your blood clot and
prevent bleeding and bruising.
The blood and chronic myeloid leukaemia 9
•• White blood cells fight and prevent infection. There are
several types of white blood cell. The two most important
types are neutrophils and lymphocytes. Neutrophils are a
type of granulocyte.
The levels of these cells in your blood are measured in a blood
test called a full blood count (FBC). The figures below are a guide
to the levels usually found in a healthy person.
Type of blood cell
Levels found in a healthy person
Red blood cells (Hb)
130–180g/l (men);
115–165g/l (women)
Platelets
150–400 x 109/l
White blood cells (WBC) 4.0–11.0 x 109/l
Neutrophils
2.0–7.5 x 109/l
Lymphocytes
1.5–4.5 x 109/l
These figures can vary from hospital to hospital. Your doctor or
nurse will be able to tell you which levels they use. The levels can
also vary slightly between people from different ethnic groups.
The figures might look complicated when they’re written
down, but in practice they’re used in a straightforward way.
For example, you’ll hear doctors or nurses saying things like,
‘Your haemoglobin is 140,’ or, ‘Your neutrophils are 4’.
Most people with CML soon get used to these figures and what
they mean. But remember, you can always ask your medical team
to explain more if you need to.
10 Understanding chronic myeloid leukaemia
Chronic myeloid leukaemia
CML is a rare cancer. About 700 people in the UK are diagnosed
with CML each year. It can occur at any age but is more common
in middle-aged and older people.
CML usually develops very slowly, which is why it’s described as a
chronic leukaemia.
People with CML make too many granulocytes. These are a type
of white blood cell (see pages 7–9). This is why CML is sometimes
called chronic granulocytic leukaemia (CGL). In a person with
CML, when the granulocytes are looked at under a microscope,
they are immature (not fully developed). The granulocytes fill the
bone marrow and stop it making enough normal white blood
cells, red blood cells and platelets.
Over time, these abnormal white blood cells collect in the spleen,
making it enlarge. The spleen is an organ on the left side of the
tummy, underneath the ribs. The spleen:
•• produces small numbers of lymphocytes
•• stores blood cells
•• destroys older, damaged blood cells.
The spleen is part of the lymphatic system (see the diagram
opposite). The bone marrow and the lymph nodes (glands)
are also part of the lymphatic system.
The blood and chronic myeloid leukaemia 11
Neck (cervical)
lymph nodes
Thymus
Armpit
(axillary)
lymph nodes
Spleen
Groin
(inguinal)
lymph nodes
The lymphatic system
12 Understanding chronic myeloid leukaemia
How CML develops
All cells have a set of instructions that tell them what to do and
when to do it. These instructions are stored inside the cells as genes.
Each gene has its own distinct set of instructions. These control
how the cell behaves. For example, some genes tell a cell to rest,
others tell it to grow, and others tell it to develop into a mature
cell so it can perform its functions in the body. The genes are
organised into structures called chromosomes. Most cells in the
body contain 23 pairs of chromosomes.
CML develops when a cell is dividing and, by mistake, a gene
gets moved from one chromosome to another. This means two
genes that are normally completely separate join together and
create a new gene. This new, abnormal fusion gene stops the
bone marrow stem cell from developing into a normal blood cell
(see pages 7–8). These abnormal cells are the leukaemia cells
(blast cells – see page 7).
When doctors look at the leukaemia cells under a microscope,
they can often see a chromosome that looks different. This new
chromosome is caused by two genes joining together. It is called
the Philadelphia chromosome.
The Philadelphia (Ph) chromosome
Most people with CML (more than 95% or 95 out of 100)
have the Philadelphia chromosome in all their leukaemia
cells. This is called Philadelphia chromosome-positive CML,
or Ph+ CML.
The Philadelphia chromosome isn’t inherited, so it is not something
you were born with and it can’t be passed on to your children.
The blood and chronic myeloid leukaemia 13
How the Philadelphia chromosome develops
There are 23 pairs of chromosomes in a cell. 22 of them are
numbered from 1–22. The 23rd pair is responsible for our gender
– it is called XX in women and XY in men. The Philadelphia
chromosome is made when a gene on chromosome 9 (the ABL
gene) wrongly attaches to a gene on chromosome 22 (the BCR
gene). This creates a new gene called BCR-ABL.
Chromosome 9
Chromosome 22
Philadelphia
chromosome
BCR
gene
ABL
gene
Fusion gene
(BCR and ABL
combined)
How the Philadelphia chromosome develops
The BCR-ABL gene makes a substance called tyrosine kinase. Too
much tyrosine kinase makes cells develop and behave abnormally.
14 Understanding chronic myeloid leukaemia
The blood and chronic myeloid leukaemia 15
Risk factors and causes
The cause of CML is unknown, but research is going on to find
out more.
There are a number of factors that might increase your risk
of developing CML but, for most people, it isn’t clear why it
develops. The known risk factors are listed below.
Age
The risk of developing CML increases slightly with age.
Radiation exposure
Exposure to very high radiation levels is known to increase the
risk of developing CML. For example, accidental exposure can
happen after a nuclear accident like Chernobyl. Nobody in the
UK is exposed to radiation levels high enough to increase their
risk of developing CML. For most people with CML, there’s no
obvious link to radiation exposure. Sometimes there is publicity about an increase in leukaemia in
people who live near nuclear power plants. Research is still going
on to see whether there is a definite link, but at the moment there
is no evidence of this. Research has also found no links between
the risk of adults developing CML and:
•• exposure to electromagnetic fields
•• living near high-voltage electricity cables
•• household radon.
Like other cancers, CML is not infectious and cannot be passed
on to other people.
16 Understanding chronic myeloid leukaemia
Symptoms
CML develops slowly and many people don’t have symptoms in
the early stages. It is often discovered by chance when a blood
test is done for another reason, for example before an operation
or as part of a routine health check.
If there are symptoms in the early stages of CML, they develop
gradually and are usually mild. The symptoms are usually vague
and can easily be confused with the symptoms of more common
illnesses, such as flu.
If you do have symptoms, they may include the following.
Common symptoms
•• Feeling generally tired or unwell.
•• Having a poor appetite and losing weight.
•• Feeling full or tender on the left side of your tummy (abdomen).
This is caused by an enlarged spleen (see pages 10–11).
•• Sweating or a high temperature at night.
Rarer symptoms
•• Having various infections one after the other. This is caused by
a lack of healthy blood cells.
•• Unusual bleeding or bruising. This may include bruising without
any obvious cause, bleeding gums, frequent nosebleeds and
heavy periods in women. This is caused by a lack of platelets
in the blood.
The blood and chronic myeloid leukaemia 17
•• Looking pale and feeling tired or breathless. This is caused by
a lack of red blood cells in the blood (anaemia).
•• Aching joints and bones. This happens because there are too
many white blood cells collecting in the bone marrow.
•• Enlarged lymph nodes. This happens because leukaemia
cells are collecting in the lymph nodes (see pages 10–11)
and making them swell. It is usually painless.
•• Small bumps in the skin.
•• Itching.
•• Visual disturbances and headaches. This happens because
the tiny blood vessels in the eyes and brain get clogged up
with too many white blood cells. Sometimes an optician will
notice changes to the blood vessels in the eye before there
are any symptoms.
If you have any of these symptoms, it is important to see your
doctor. But remember that these can be symptoms of many
illnesses other than CML.
‘I was having all sorts of different symptoms –
aching limbs, tiredness, night sweats, headaches.
As it went on, it didn’t seem quite right.’
Mark
18 Understanding chronic myeloid leukaemia
2
How CML is diagnosed 19
Diagnosing
chronic myeloid
leukaemia
How CML is diagnosed
20
Phases of CML
24
20 Understanding chronic myeloid leukaemia
How CML is diagnosed
There are few, if any, symptoms in the early stages of CML.
So it’s common for people with CML to be diagnosed by
chance when they have a blood test for another reason.
There’s a photo of someone having a blood test on page 18.
If your GP suspects you have CML, they will refer you to a
haematologist for further tests. A haematologist is a doctor
who specialises in diagnosing and treating blood problems.
At the hospital
The haematologist will ask you about any illnesses or health
problems you’ve had. They will also examine you to check
whether your lymph nodes, spleen or liver are enlarged. You will
also have more blood tests to check the number of different cells
in your blood (a full blood count – see pages 8–9) and to look for
leukaemia cells.
If the blood test shows there are leukaemia cells in your blood,
the haematologist will arrange further tests to find out which type
of leukaemia you have and its extent. The results of these tests will
help them plan your treatment.
Diagnosing chronic myeloid leukaemia 21
Tests
Bone marrow sample
A doctor or nurse takes a small sample of bone marrow from
the back of the hip bone (pelvis), or occasionally the breast bone
(sternum). The sample is sent to a laboratory to be checked for
abnormal white blood cells. A haematologist can tell which type of
leukaemia you have by identifying the type of abnormal white cell.
A sample of bone marrow being taken from the back of the hip bone
The procedure can be done on the ward or in the outpatients
department. It takes about 20–30 minutes in total, but taking
the bone marrow sample only takes a few minutes.
Before the bone marrow sample is taken, you’ll be given a local
anaesthetic injection to numb the area.
22 Understanding chronic myeloid leukaemia
The doctor or nurse passes a needle through the skin into the
bone. They then draw a small sample of liquid from inside
the bone marrow into a syringe. This is called a bone marrow
aspirate. It can feel uncomfortable for a few seconds when the
liquid marrow is drawn into the syringe.
You may also have small core of marrow taken (a trephine
biopsy). The doctor or nurse passes a thicker needle through
the skin into the bone marrow. When they take the needle out,
it contains a small core of bone marrow.
You may feel bruised after having a sample of bone marrow
taken, and have an ache for a few days. You can ease this by
taking mild painkillers.
Cytogenetic tests
These are tests that look at chromosomes through a microscope:
Philadelphia chromosome test
The blood and bone marrow sample will be analysed to look for
the Philadelphia chromosome (see pages 12–13). This will help
doctors decide on the best treatment for you.
Polymerase chain reaction (PCR) test
This is a blood test that detects the BCR-ABL gene (see page 13),
which is usually present in CML. It’s a very sensitive test and can
detect tiny amounts of leukaemia that can be missed by other
tests. Doctors use the PCR test to see how you are responding
to treatment.
Diagnosing chronic myeloid leukaemia 23
Further tests
You may have additional tests, including the following:
Chest x-ray
This uses x-rays to take a picture of your chest, to check your
lungs and heart (see the photo below).
Ultrasound scan
An ultrasound scan may be done to see whether your liver
and spleen are enlarged (see pages 10–11). Ultrasound scans
use sound waves to build up a picture of the inside of the body.
This is a painless test and only takes a few minutes.
24 Understanding chronic myeloid leukaemia
Phases of CML
CML develops slowly. There are three phases of CML:
•• the chronic phase
•• the accelerated phase
•• the blast phase.
Your phase depends on the number of immature cells
(blast cells) in your blood and bone marrow (see page 7),
and your symptoms. Most people are diagnosed when CML
is in the chronic phase.
Chronic phase
CML develops very slowly in the chronic phase and is often
stable for a long time. The chronic phase is sometimes called
the stable phase. There may be no symptoms and most people
lead a normal life.
People in this phase rarely need to go into hospital. They can
have treatment as an outpatient and it doesn’t usually cause
many side effects. They will have regular blood tests to check
how well they are responding to treatment.
Most people who have treatment in the chronic phase have their
leukaemia well-controlled and won’t have any symptoms. If they
keep taking their treatment, their leukaemia may be kept under
control for many years and potentially for the rest of their life.
Diagnosing chronic myeloid leukaemia 25
Accelerated phase
In some people, CML does not respond as well to treatment. In a
small number of people, the leukaemia may progress from the
chronic phase to the accelerated phase. Occasionally people may
be diagnosed with CML in the accelerated phase.
In this phase, there are more blast cells in the blood and bone
marrow. You may also develop symptoms such as tiredness,
weight loss, bone pain, sweating and a high temperature at night.
If you feel unwell or develop new symptoms, let your doctor know.
The treatment for the accelerated phase (see page 29) may be more
intensive than for the chronic phase, and you may need to spend
some time in hospital. Your specialist can tell you more about this.
Blast phase
After some time in the accelerated phase, the leukaemia may
transform into the blast phase. Occasionally people may be
diagnosed in the blast phase or progress straight to this from
the chronic phase.
The blast phase is like an acute leukaemia. In this phase, there are
even more blast cells. This phase is sometimes called blast crisis.
Remission
Remission (a complete response) means the blood and bone
marrow go back to normal following treatment. There are
different levels of response (see pages 41–43).
Relapse
Relapse means the leukaemia cells have come back after a time
in remission.
26 Understanding chronic myeloid leukaemia
3
Phases of CML 27
Treating
chronic myeloid
leukaemia
Treatment overview
28
Targeted therapies
34
Chemotherapy 46
Stem cell transplants
53
Interferon alpha
54
Research – clinical trials
56
28 Understanding chronic myeloid leukaemia
Treatment overview
How CML is treated depends on:
•• the phase of the illness
•• your general health
•• how fit you are.
Your doctor will discuss the possible treatment options with you,
and their advantages and disadvantages.
Chronic phase
In the chronic phase, the aim of treatment is for your blood
count (see pages 8–9) to return to normal, and for you to
keep feeling well. This may be for many years – possibly for
your normal lifespan.
You will usually be treated with a tablet called imatinib. This is a
type of targeted therapy called a tyrosine kinase (TK) inhibitor
(see pages 34–44). TK inhibitors have greatly improved the outlook
for people with CML. Many people have been taking imatinib for
10 years or longer without any problems from their leukaemia.
If imatinib doesn’t work or if you can’t take it because you have
side effects, other TK inhibitors can be used. These include
nilotinib and dasatinib.
If you have CML that hasn’t responded to TK inhibitor treatment,
stem cell transplants (sometimes called bone marrow transplants)
may be used (see page 53).
Treating chronic myeloid leukaemia 29
Accelerated phase
If imatinib or another TK inhibitor hasn’t been used in the chronic
phase, it can be used in the accelerated phase.
If you don’t have a TK inhibitor, you’ll usually be treated with a
combination of chemotherapy drugs (see pages 46–51). These
are given by injection into a vein (intravenously). Some people may
have a stem cell transplant if they are fit enough (see page 53).
Blast phase
In the blast phase, the aim of treatment is to reduce symptoms
and to try to put your leukaemia back into a second chronic
phase. If you’ve not had TK inhibitors before, you may be given
them. Blast-phase CML is like an acute leukaemia, so you will
usually be treated with combinations of chemotherapy drugs used
to treat acute leukaemia. If your leukaemia responds well to either
TK inhibitors or chemotherapy and you are fit enough, your doctors
may recommend a stem cell transplant (see page 53).
Supportive treatments
Some people have a very high number of white blood cells in
their blood when they’re diagnosed with CML. The cells can clog
up blood vessels and cause physical problems. Doctors may treat
this by removing the excess cells from the blood using a machine
called a cell separator. This process is called leukapheresis.
You lie on a bed or reclining chair with a plastic tube (cannula)
in each arm. Each cannula is connected by a tube to the cell
separator. Your blood is removed through one tube and circulated
through the cell separator. This removes the white blood cells.
The rest of your blood is then returned to your body through the
cannula in your other arm. The whole procedure takes a few
hours and is not painful.
30 Understanding chronic myeloid leukaemia
How your treatment is planned
Haematologists follow national and international guidelines for
treating CML. Your treatment will be based on these guidelines
but tailored to your particular situation. In most hospitals, a team of specialists decide on the treatment
that’s best for you.
This multidisciplinary team (MDT) may include:
•• one or more medical doctors who specialise in diseases of the
blood (haematologists)
•• specialist nurses who give information and support.
It may also include other healthcare professionals, such as a
dietitian, physiotherapist, occupational therapist, psychologist
or counsellor.
The MDT will take a number of factors into account when
advising you on the best course of action, including the phase
of your leukaemia and your general health.
You may be invited to take part in a clinical trial of a new
treatment for CML (see pages 56–57).
Treating chronic myeloid leukaemia 31
Giving your consent
Before you have any treatment, your doctor will explain its
aims. They will usually ask you to sign a form saying that you
give permission (consent) for the hospital staff to give you the
treatment. No medical treatment can be given without your
consent, and before you are asked to sign the form you should
be given full information about:
•• the type and extent of the treatment
•• its advantages and disadvantages
•• any significant risks or side effects
•• any other treatments that may be available.
If you don’t understand what you’ve been told, let the staff
know straight away, so they can explain again. Some leukaemia
treatments are complex, so it’s not unusual to need repeated
explanations. It’s a good idea to have a relative or friend with
you when the treatment is explained, to help you remember the
discussion. You may also find it useful to write a list of questions
before your appointment.
People sometimes feel that hospital staff are too busy to answer
their questions, but it’s important for you to know how the
treatment is likely to affect you. The staff should be willing to
make time for your questions.
You can always ask for more time if you feel that you can’t make
a decision when your treatment is first explained to you.
You are also free to choose not to have the treatment. The staff
can explain what may happen if you don’t have it. It’s essential
32 Understanding chronic myeloid leukaemia
to tell a doctor or the nurse in charge, so they can record your
decision in your medical notes. You don’t have to give a reason
for not wanting treatment, but it can help to let the staff know
your concerns so they can give you the best advice.
Second opinion
Your multidisciplinary team (MDT) uses national treatment
guidelines to decide the most suitable treatment for you.
Even so, you may want another medical opinion. If you feel
it will be helpful, you can ask either your specialist or GP to
refer you to another specialist for a second opinion. Getting a
second opinion may delay the start of your treatment, so you
and your doctor need to be confident that it will give you useful
information. If you do go for a second opinion, it may be a
good idea to take a relative or friend with you, and have a list
of questions ready, so that you can make sure your concerns
are covered during the discussion.
Treating chronic myeloid leukaemia 33
The benefits and disadvantages of treatment
Many people are frightened at the idea of having leukaemia
treatments, particularly because of the side effects that can occur.
However, these can usually be controlled with medicines.
Treatment can be given for different reasons and the potential
benefits will vary depending on your individual situation.
If you have been offered treatment in the chronic phase, it will
aim to control the leukaemia for a long time and have few side
effects. In this case, deciding whether or not to have treatment
may not be difficult.
However, if you are in the blast phase and have been offered
more intensive treatment, it may cause more side effects and
have a lower chance of controlling the leukaemia. In this case,
it may be more difficult to decide whether or not to go ahead. Making decisions about treatment in these circumstances is
always difficult, and you may need to talk to your doctor in detail
about whether or not you want to have treatment. If you choose
not to have treatment, you can have supportive (palliative) care,
with medicines to control any symptoms.
If you want to stop your treatment, it’s important to tell a doctor or
specialist nurse. They can discuss your decision with you and offer
you advice. They will also make a record of your decision in your
medical notes.
34 Understanding chronic myeloid leukaemia
Targeted therapies
The main treatment for CML uses drugs known as targeted
therapies. These work by ‘targeting’ specific proteins in the
leukaemia cells.
There are different types of targeted therapy drug. The type used
in CML is called a tyrosine kinase (TK) inhibitor. These switch
off (inhibit) the effects of the abnormal gene BCR-ABL (see page
13). This means that the leukaemia cells (blast cells) will mature
correctly and die.
The three TK inhibitor drugs currently used are imatinib, dasatinib
and nilotinib. Some newer drugs are also being used.
Imatinib (Glivec®)
Imatinib is the most common targeted therapy used to treat CML.
It can be used in the chronic phase and may also be used in the
accelerated or blast phase if it hasn’t been used before.
Imatinib is a tablet. You take it every day for as long as it is
working to control the leukaemia.
We can send you more detailed information
about imatinib.
Treating chronic myeloid leukaemia 35
Nilotinib (Tasigna®) and dasatinib (Sprycel®)
Nilotinib and dasatinib are also TK inhibitors. They are used to
treat newly diagnosed CML in the chronic or accelerated phase.
Dasatinib is also used in the blast phase. You may be prescribed
nilotinib or dasatinib if you can’t take imatinib because of severe
side effects or because it isn’t working to control your CML.
Nilotinib and dasatinib are tablets. They are taken for as long as
they are effective.
The National Institute for Health and Care Excellence
(NICE) gives guidance to doctors in England and Wales.
It has recommended nilotinib as a treatment for CML in the
chronic or accelerated phase if imatinib isn’t working or has to
be discontinued because of side effects. The Scottish Medicines
Consortium (SMC) has made the same recommendation for
Scotland. Neither NICE or the SMC has recommended dasatinib
for the treatment of CML. If you live in Northern Ireland, you can
find out from your leukaemia specialist whether nilotinib or
dasatinib is available.
Your specialist may apply to your health board for individual
funding for dasatinib. Or, if you live in England, it may be
available through the Cancer Drugs Fund. Your specialist will
discuss this with you if they think dasatinib is suitable for you.
We can send you more information about dasatinib
and nilotinib.
36 Understanding chronic myeloid leukaemia
Bosutinib (Bosulif®)
Bosutinib is a newer TK inhibitor, which may be used if other TK
inhibitors have stopped working.
Neither NICE or the SMC has recommended bosutinib for
the treatment of CML, so it may not be widely available.
If you live in Northern Ireland, you can find out from your
leukaemia specialist whether bosutinib is available.
Ponatinib (Iclusig®)
Ponatinib is a newer TK inhibitor. It is only suitable for people with
CML who have a particular gene change (mutation) in their CML
cells called T315I. Only a few people with CML have this gene
change. Ponatinib may not be widely available on the NHS.
Your specialist may apply to your health board
for individual funding for bosutinib or ponatinib.
Or, if you live in England, they may be available through
the Cancer Drugs Fund. Your specialist will discuss this
with you if they think either of these drugs is suitable for
you. We can send you information about what you can
do if a treatment isn’t available, and about the Cancer
Drugs Fund.
Targeted therapies 37
38 Understanding chronic myeloid leukaemia
Side effects of TK inhibitors
The side effects of TK inhibitors are usually mild and treatable.
They are often more noticeable in the first four weeks of treatment
and begin to settle after this.
Side effects generally disappear when treatment is stopped.
If you have severe side effects, your doctor may ask you to stop
taking the drug for a few days. After a short break, you may be
able to start taking it again without having the same problems.
Occasionally people need to stop treatment because their side
effects are too severe.
Always let your doctor know if you notice any new side effects or
your side effects get worse.
We have listed the possible side effects of TK inhibitors over the
next few pages.
Feeling sick (nausea)
This is usually mild. Your doctor may prescribe anti-sickness
(anti-emetic) drugs to prevent or reduce this. Let them know
if you still feel sick, as they can prescribe another anti-sickness
drug that may work better for you.
Diarrhoea
This can usually be controlled with anti-diarrhoea medicine,
but tell your doctor if it’s severe or continues. It’s important
to drink plenty of fluids if you have diarrhoea.
Loss of appetite
A dietitian or specialist nurse can give you advice and tips
on boosting your appetite, coping with eating difficulties and
maintaining your weight.
Treating chronic myeloid leukaemia 39
Headaches
Let your doctor know if you have headaches. They can advise you
on which painkillers to take.
Muscle, bone and joint pain
You may have muscle, joint or bone pain while having your
treatment. Your doctor can prescribe painkillers to ease this.
Fluid retention
This can affect different parts of your body. Your ankles may
swell, or you may get swelling around the eyes. Fluid retention
often settles without treatment. But if it doesn’t, drugs that make
you pass more urine (diuretics) can help get rid of some of the
fluid. A short course of steroids may also help.
Skin changes
Your skin may become dry and itchy, or you may develop a
mild skin rash. Making sure you drink enough fluids can help.
Your doctor can also prescribe medicine or creams to help
with this.
Tiredness and feeling weak
This is common, but it’s usually mild. It is important to give
yourself plenty of time to rest.
Constipation
Drinking plenty of fluids, eating a high-fibre diet and doing
gentle exercise usually helps relieve constipation. Sometimes
you may need to take medicines (laxatives) to stimulate your
bowel. Your doctor can prescribe these.
Risk of infection
TK inhibitors can reduce the number of healthy white blood
cells produced by the bone marrow, making you more prone
to infection.
40 Understanding chronic myeloid leukaemia
Contact your doctor straight away if:
•• you develop a high temperature, which may be over 37.5˚C
(99.5˚F) or over 38˚C (100.4˚F) depending on the hospital’s
policy – follow the advice you have been given by your
chemotherapy team
•• you suddenly feel unwell, even with a normal temperature.
Bruising or bleeding
TK inhibitors can reduce the production of platelets, which help
the blood to clot. Tell your doctor if you have any unexplained
bruising or bleeding. This may include nosebleeds, bleeding
gums, blood spots or rashes on the skin. They will advise you
about this and explain any precautions you should take.
Anaemia (low number of red blood cells)
You may become anaemic. This can make you feel tired and
breathless. Tell your doctor or nurse if you have these symptoms.
If the number of red blood cells becomes too low, you may need
to have a blood transfusion.
Your blood count will be monitored regularly while you’re having
treatment. If your blood cell numbers fall too much, your doctor
may stop your treatment for a few days to let them recover.
Or you may be prescribed injections of substances called growth
factors. The growth factor G-CSF can stimulate your bone marrow
to produce more healthy white blood cells, and erythropoietin
can help with the production of red blood cells.
We can send you more information about G-CSF
and erythropoietin.
Treating chronic myeloid leukaemia 41
Contraception and fertility
TK inhibitors are a newer type of drug, so there isn’t a lot of
information about women becoming pregnant or men fathering
children while taking them. If you are taking a TK inhibitor,
there is a slightly increased risk of damage to a developing
baby, so it’s strongly recommended that you use contraception
while being treated with a TK inhibitor.
If you think you may want to have children in the future, talk to
your doctor before starting treatment with a TK inhibitor.
Monitoring response to treatment
When you first start treatment with a TK inhibitor, you will need
to go to the clinic every week or so. This is so your doctors can
closely monitor how you’re responding to treatment, and so they
can check for any side effects.
As time goes on, you won’t need to go to the clinic as often.
Eventually you may only need a check-up every 2–3 months.
At these check-ups, your doctor will ask about your general health
and whether you have had any new symptoms or side effects
from treatment. You will usually have blood taken to check the
numbers of blood cells (a full blood count) and for a PCR test
(see page 22). Sometimes you may also have a bone marrow
sample taken (see pages 21–22). Your doctor can tell you how
often this might be needed.
The results of these tests help your doctors know how well your
leukaemia is responding to treatment, so they can make any
changes if needed.
42 Understanding chronic myeloid leukaemia
Levels of response
The aim of treatment is to put your CML into remission. Remission
means there are no signs of CML in your blood. There are different
levels of response, which we’ve listed over the next pages.
Haematological response
The white blood cell count in the blood is usually high when you
first develop CML. If there is a haematological response, it means
your full blood count has returned to normal and no leukaemia
cells can be seen. If your spleen was larger than normal when
you were first diagnosed, this should also have gone back to its
normal size.
Most people get a haematological response within three months
of starting imatinib.
Cytogenetic response This is the next level of response. It refers to the amount of
Philadelphia chromosome in the blood and bone marrow (see pages
12–13). As treatment begins to work, the number of Philadelphia
chromosome-positive (Ph+) cells in the blood and bone marrow
goes down.
To check for a cytogenetic response, you will have a bone marrow
sample taken (see pages 21–22). Your doctors will usually examine
at least 20 cells from the sample to see whether there has been
a cytogenetic response. There are different levels of cytogenetic
response – the level depends on the amount of Ph+ cells in the
bone marrow.
It takes longer to get a cytogenetic response than a haematological
response. It sometimes takes many months.
About 80% of (8 out of 10) people taking imatinib for CML in the
chronic phase get a complete cytogenetic response. This means
there are no Ph+ cells in the bone marrow.
Treating chronic myeloid leukaemia 43
Molecular response
Even after you have a cytogenetic response, there can still be
leukaemia cells in your blood. Because there may only be one
leukaemia cell among thousands of normal blood cells, a very
sensitive test is needed to detect the leukaemia cells.
The PCR test can detect one leukaemia cell in up to 10,000
normal blood cells. It does this by measuring a substance made
by the BCR-ABL gene in the leukaemia cells (see page 13).
When you’re first diagnosed with CML, you’ll have blood taken
for PCR testing (see page 22). After diagnosis, you’ll have this
done around every three months. Because it’s so sensitive, the PCR
test may keep showing signs of leukaemia for many months after
your treatment starts, even though you’re feeling well.
There are two different levels of molecular response:
•• A major molecular response is when there are tiny amounts
of the BCR-ABL gene in the blood.
•• Molecularly undetectable leukaemia means the PCR test
cannot detect any of the BCR-ABL gene in your blood.
44 Understanding chronic myeloid leukaemia
Continuing to take treatment
You’ll usually keep taking the TK inhibitor for as long as it’s
controlling your leukaemia. This is important even if your PCR
tests don’t show any signs of leukaemia.
If you find it difficult to remember to take your tablets every day,
you may find the following ideas helpful:
•• Take your tablets at the same time you usually do something
else, for example when you eat your lunch or dinner.
•• Put your tablets in a place where you’ll see them every day.
•• Mark off each dose you take on a calendar, or use a seven-day
pill container.
•• Keep a supply of tablets with you when you travel and take your
medicine in your carry-on luggage when you fly.
Your prescriptions will be organised through the hospital, so you
may have to go there to collect the tablets each time you need
more. Tell your doctor, nurse or pharmacist if it is difficult for you
to get to the hospital.
‘There’s a possibility that my tablets could
give a lifetime’s control. But I do try to
keep in mind that there might come a
day when I have to seek other options.’
Chanelle
Chemotherapy 45
46 Understanding chronic myeloid leukaemia
Chemotherapy
Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy
or damage leukaemia cells. It works by disrupting the way
leukaemia cells grow and divide. As the drugs circulate in
the blood, they can reach leukaemia cells all over the body.
Chemotherapy for CML
Although imatinib is usually the standard treatment for CML,
chemotherapy is occasionally used. It‘s most likely to be used
if imatinib or other TK inhibitors aren’t effective or cause severe
side effects.
You may be given chemotherapy when your CML is first
diagnosed – usually with a tablet. This may be when your
doctors are waiting to confirm whether the CML is a type that’s
likely to respond to a TK inhibitor. In this situation, treatment is
usually changed to imatinib once the test results are available.
Occasionally you may need more intensive chemotherapy,
involving having a combination of drugs into a vein (intravenously).
This is usually used for the blast phase (see pages 25 and 29).
People who are treated with a stem cell transplant (see page
53) usually have intensive chemotherapy as preparation for
the transplant.
Treating chronic myeloid leukaemia 47
Chemotherapy tablets
Chemotherapy tablets are usually used to treat CML in the chronic
phase. The most commonly used drug is hydroxycarbamide.
The doctor, nurse or pharmacist will tell you how many tablets
to take. You need to be sure you are taking the right dose.
You will usually take the tablets every day for as long as they’re
working, or until test results confirm your CML is likely to respond
to a TK inhibitor. The dose of the tablets may be changed
depending on the results of regular blood tests.
Your treatment may be stopped for a while if your number of
white blood cells falls below a certain level.
We have more information about hydroxycarbamide.
Combination chemotherapy
If your CML starts to behave more like an acute leukaemia,
or if you are going to have high-dose treatment with a stem
cell transplant (see page 53), you will be given more intensive
chemotherapy. This generally means a combination of three or
four drugs given by injection into a vein (intravenously).
Your doctor or specialist nurse will tell you about the drugs and
their possible side effects.
To make it easier for you to have intravenous chemotherapy, and
so you don’t need frequent injections, you may have a plastic tube
called a central line put into a vein in your chest. Sometimes a
PICC (peripherally inserted central venous catheter) line or an
implantable port may be used instead of a central line.
We can send you more information about central
lines, PICC lines and implantable ports.
48 Understanding chronic myeloid leukaemia
Side effects of chemotherapy
If you are taking a single chemotherapy tablet, any side effects
you have will usually be mild. Treatment with a combination of
two or more chemotherapy drugs may cause more troublesome
side effects.
Risk of infection
Chemotherapy can reduce the number of white blood cells,
which help fight infection. If the number of your white blood
cells is low you’ll be more prone to infections. A low white
blood cell count is called neutropenia.
Always contact the hospital immediately on the 24-hour contact
number you’ve been given and speak to a nurse or doctor if:
•• you develop a high temperature, which may be over 37.5˚C
(99.5˚F) or over 38˚C (100.4˚F) depending on the hospital’s
policy – follow the advice you have been given by your
chemotherapy team
•• you suddenly feel unwell, even with a normal temperature
•• you feel shivery and shaky
•• you have any symptoms of an infection, such as a cold,
sore throat, cough, passing urine frequently (urine infection),
or diarrhoea.
If necessary, you’ll be given antibiotics to treat any infection.
You’ll have a blood test before each cycle of chemotherapy to
make sure your white blood cells have recovered. Occasionally
your treatment may need to be delayed if the number of your
white blood cells is still low.
Treating chronic myeloid leukaemia 49
Anaemia (reduced number of red blood cells)
Chemotherapy may reduce the number of red blood cells
(haemoglobin) in your blood. A low level of red blood cells is
called anaemia, which can make you feel very tired and lethargic.
You may also become breathless. Let your doctor know if you get
these effects.
Increased bruising and bleeding
Chemotherapy can reduce the number of platelets in your
blood. Platelets are cells that help the blood to clot. If you
develop any unexplained bruising or bleeding, such as
nosebleeds, bleeding gums, blood spots or rashes on the
skin, contact your doctor or the hospital straight away.
Feeling sick
Some chemotherapy drugs can make you feel sick (nauseated)
or possibly be sick (vomit). Your leukaemia specialist will prescribe
anti-sickness (anti-emetic) drugs to prevent this. Let your doctor
or nurse know if your anti-sickness drugs are not helping, as there
are several different types you can take. We have a fact sheet
about nausea and vomiting.
Sore mouth
Your mouth may become sore (or dry), or you may notice small
ulcers during treatment. Some people find that sucking on ice
may be soothing. Drinking plenty of fluids, and cleaning your
teeth regularly and gently with a soft toothbrush, can help to
reduce the risk of this happening. Tell your nurse or doctor if you
have any of these problems, as they can prescribe mouthwashes
and medicine to prevent or clear mouth infections.
50 Understanding chronic myeloid leukaemia
Tiredness (fatigue)
You’re likely to become tired and have to take things slowly.
Try to pace yourself and save your energy for things that you
want to do or that need doing. Balance rest with some physical
activity – even going for short walks will help increase your energy
levels. Our booklet Coping with fatigue has more helpful tips.
Hair loss
Some chemotherapy drugs may cause hair loss. Some people
may have complete hair loss including eyelashes and eyebrows.
Others may only experience partial hair loss or thinning.
It depends on what chemotherapy drugs you are having
(your doctor or nurse can tell you more about what to expect).
If you do experience hair loss your hair should start to grow
back within about 3–6 months of the end of treatment. It may
grow back straighter, curlier, finer, or a slightly different colour
than it was before. Your nurse can give you advice about coping
with hair loss and how to look after your scalp.
Contraception
It is not advisable to become pregnant or father a child while
having any of the chemotherapy drugs used to treat CML,
as they may harm the developing baby. It is important to use
effective contraception during your treatment and for up to
a year afterwards. You can discuss this with your doctor or
specialist nurse.
Condoms should be used during sex within the first 48 hours
after chemotherapy, to protect your partner from any of the drug
that may be present in semen or vaginal fluid. You can discuss
this with your doctor.
Treating chronic myeloid leukaemia 51
Fertility
Some chemotherapy treatments may cause infertility (the inability
to become pregnant or to father a child). This may be temporary
or permanent, depending on the drugs you have.
If you think that you may want to have children in the future,
talk to your doctors about this before starting chemotherapy
treatment. They will be able to tell you whether your fertility is
likely to be affected. You can then make an informed decision
about your options.
If you have a partner, it’s a good idea for both of you to be there
during these discussions. Don’t be afraid to ask your doctor or
specialist nurse any questions.
We can send you more information about cancer
and fertility.
52 Understanding chronic myeloid leukaemia
Treating chronic myeloid leukaemia 53
Stem cell transplants
A stem cell transplant is mainly used to treat people who haven’t
responded to treatment with TK inhibitors (see pages 34–44).
At least two TK inhibitors are usually used first. If your doctor
thinks a stem cell transplant is appropriate for you, they will
discuss it with you in more detail.
Stem cell transplants are only carried out in specialist cancer
treatment centres.
A stem cell transplant allows you to have much higher doses
of chemotherapy than usual. You may also have radiotherapy
(high-energy rays) to the whole body. This can help improve the
chances of curing the leukaemia or make a remission last longer.
Stem cells are found inside our bone marrow. They make all
the red blood cells, white blood cells and platelets in the blood
(see page 7–8).
There are two types of stem cell transplant:
•• Allogeneic transplants – when you are given stem cells from
someone else (a donor).
•• Autologous transplants (also known as high-dose treatment
with stem cell support) – when you are given back your own
stem cells.
People with CML are almost always treated using stem cells from
a donor.
We can send you more information about donor
stem cell (allogeneic) transplants.
54 Understanding chronic myeloid leukaemia
Interferon alpha
Interferon alpha is a protein normally made by the body during
viral infections, such as flu. It can also be made outside the body.
If other treatments haven’t worked, some people are occasionally
given interferon alpha in the chronic phase of CML. Doctors may
also use it for women who need treatment and are pregnant or
want to become pregnant.
You have interferon alpha as an injection under the skin
(subcutaneously) using a very fine needle. The injections are
slightly uncomfortable. You or a relative or friend can be taught
how to give these injections so you can have them at home.
‘I learned to inject myself properly
without hurting myself. It did take me
a little while to get the knack of it.’
Chanelle
Treating chronic myeloid leukaemia 55
Side effects
Interferon alpha can cause various side effects. Some are similar
to the symptoms of flu. They include:
•• chills
•• fever
•• depression
•• weight loss
•• headaches
•• aching in the back, joints and muscles
•• tiredness.
Some of these side effects can be reduced by taking a mild
painkiller, such as paracetamol, before the injection and before
you go to bed. Your doctor can give you further advice.
The side effects are most noticeable with the first one or two
injections, and usually wear off after that. However, the tiredness
may continue.
We have more information about interferon alpha.
56 Understanding chronic myeloid leukaemia
Research – clinical trials
Leukaemia research trials are carried out to try to find new and
better treatments for leukaemia. Trials that are carried out on
patients are known as clinical trials. These may be carried out to:
•• test new treatments, such as new chemotherapy drugs or
targeted therapies
•• look at new combinations of existing treatments, or change
the way they are given to make them more effective or reduce
side effects
•• compare the effectiveness of drugs used to control symptoms
•• find out how leukaemia treatments work
•• find out which treatments are the most cost-effective.
Trials are the only reliable way to find out if a different type of
surgery, chemotherapy, hormone therapy, radiotherapy, or other
treatment is better than what is already available.
Taking part in a trial
You may be asked to take part in a treatment research trial.
There can be many benefits in doing this. Trials help to improve
knowledge about leukaemia and develop new treatments.
You will be carefully monitored during and after the study.
Usually, several hospitals around the country take part in these
trials. It’s important to bear in mind that some treatments that look
promising at first are often later found not to be as good as existing
treatments or to have side effects that outweigh the benefits.
Treating chronic myeloid leukaemia 57
If you decide not to take part in a trial, your decision will be
respected and you don’t have to give a reason. However, it can
help to let the staff know your concerns so that they can give you
the best advice. There will be no change in the way that you’re
treated by the hospital staff, and you’ll be offered the standard
treatment for your situation.
Our booklet Understanding cancer research trials
(clinical trials) describes clinical trials in more detail.
We can send you a free copy.
Blood and tumour samples
Blood and tumour samples may be taken to help make the right
diagnosis. You may be asked for your permission to use some
of your samples for research into leukaemia. If you take part in
a trial you may also give other samples, which may be frozen
and stored for future use when new research techniques become
available. Your name will be removed from the samples so you
can’t be identified.
The research may be carried out at the hospital where you
are treated, or at another one. This type of research takes a
long time, and results may not be available for many years.
The samples will be used to increase knowledge about the
causes of leukaemia and its treatment, which will hopefully
improve the outlook for future patients.
58 Understanding chronic myeloid leukaemia
‘The CML has had some
impact on work and on family,
but overall I would say I’ve
been lucky with the way things
have turned out for me.’
Saffiyah
4
Living with CML 59
Living with
chronic myeloid
leukaemia
Living with CML
60
Your feelings
66
Talking to children
71
Who can help?
72
If you are a relative or friend
73
60 Understanding chronic myeloid leukaemia
Living with CML
You can live with CML for a long time – often for your normal
lifespan. To help you stay as well as possible, you may want to
make changes to your lifestyle and find out more about healthy
living. Even if you had a healthy lifestyle before your diagnosis,
you may want to focus more on making the most of your health.
You might choose to make just a few changes, or completely
change the way you live. Adopting a healthy lifestyle is about
making small, achievable changes to the way you live. This will
improve your health and sense of well-being, and lower your risk
of getting other illnesses and some cancers.
A healthy lifestyle includes having a well-balanced diet,
being physically active, reducing stress, and being involved in
your healthcare. We’ve listed some tips over the next few pages.
When planning changes, you will need to take any side effects
of treatment into account. Try not to do too much, too soon.
Adopting a healthy lifestyle doesn’t have to be difficult or
expensive. It may feel like it’s a lot of hard work and you’re
denying yourself life’s pleasures. But there are many benefits.
It’s important to do what’s right for you.
‘I’ve always been sporty. And I eat lots of fruit,
veg and fresh food.’
Aude
Living with chronic myeloid leukaemia 61
Eat well and keep to a healthy weight
A well-balanced diet should include:
•• plenty of fresh fruit and vegetables – aim to eat at least five
portions a day
•• foods high in fibre, such as beans and cereals
•• plenty of water or other non-alcoholic drinks.
You should also try to reduce your intake of:
•• red meat and animal fats
•• alcohol
•• salted, pickled and smoked foods.
Our booklet Healthy eating and cancer has more
information. We can send you a free copy.
Stop smoking
If you smoke, speak to your doctor or call a stop-smoking
helpline for further advice. They can tell you where your local
stop-smoking service is.
Our booklet Giving up smoking has more
information and tips to help you succeed.
62 Understanding chronic myeloid leukaemia
Reduce stress
There are different ways of reducing stress, and they will vary
from person to person. Some people find it relaxing to meditate
or pray, or you might decide to take up a new hobby. Or you
could try a complementary therapy, such as aromatherapy
or reflexology.
We can send you more information about cancer
and complementary therapies.
Some people find it helpful to talk about their feelings or have
contact with other people who have been through a similar
experience (see page 64). Others find it helpful to write a
journal or online blog.
‘I have tried aromatherapy, reflexology and
hypnotherapy. I found them all to be of some
benefit in different ways. And the consultant
asked a patient who had CML if they would
give me a call. That was the biggest benefit
of all – actually talking to somebody who
knew exactly how you felt. It was a great
comfort talking to somebody who knew what
I was going through. And in turn, I’ve now
done that for quite a lot of other people.’
Mark
Living with chronic myeloid leukaemia 63
Get physically active
Physical activity can improve your sense of well-being and
help build up your energy levels. It reduces the risk of heart
disease, strokes, diabetes and bone thinning (osteoporosis).
Physical activity doesn’t have to be very strenuous. You can
start gently and build up the amount you do.
You can read more about exercise and its benefits in
our booklet Physical activity and cancer treatment.
‘I focus on my diet and my exercise, primarily because
it helps me control side effects.’
Chanelle
Get involved in your healthcare
This includes taking your medicines as prescribed and always
going to your hospital appointments. If you have any problems or
notice any new symptoms between your appointments that don’t
go away within a couple of weeks, let your doctor know as soon
as possible.
Understanding more about CML and its treatment can also
help you cope. It means you can discuss treatment, tests and
check-ups with your doctors and nurses, and be involved in
making decisions. This can make you feel more confident and
give you back a feeling of control.
64 Understanding chronic myeloid leukaemia
Self-help and support groups
Talking about your feelings can help reduce stress, anxiety and
isolation. There are lots of different ways to communicate,
and they can all help people feel less alone. We’ve suggested
some of them below.
Self-help or support groups offer a chance to talk to other people
who may be in a similar situation and facing the same challenges
as you. Joining a group can be helpful if you live alone or don’t
feel able to talk about your feelings with the people around you.
Not everyone finds it easy to talk in a group, so it might not be
for you. Try going along to see what the group is like before
you decide.
For information about leukaemia support groups
across the UK, visit macmillan.org.uk/supportgroups
or call us on 0808 808 00 00.
Online support
Many people now get support on the internet. There are online
support groups, social networking sites, forums, chat rooms and
blogs for people affected by leukaemia. You can use these to ask
questions and share your experience.
Our online community is a social networking site where you can talk
to people in our chat rooms, blog about your journey, make friends
and join support groups. Visit macmillan.org.uk/community
Living with CML 65
66 Understanding chronic myeloid leukaemia
Your feelings
It’s common to feel overwhelmed by different feelings when
you’re told that you have leukaemia. We talk about some of
these here. Partners, family and friends may also have some
of the same feelings.
You might have different reactions to the ones we describe here.
There is no right or wrong way to feel. You’ll cope with things
in your own way. Talking to people close to you or other people
affected by leukaemia can often help.
Shock and disbelief
You may find it hard to believe it when your doctor tells you
that you have leukaemia. It’s common to feel shocked and numb.
You may not be able to take in much information and find that
you keep asking the same questions again and again. At first,
you might find it hard to talk to family and friends about the
leukaemia. This usually gets easier as the shock wears off and it
becomes more real to you. You may find you can’t think or talk
about anything but the leukaemia. This is because your mind is
trying to process what you’re going through.
Fear and anxiety
People can be very anxious or frightened about whether treatment
will work and what will happen in the future. This uncertainty can
be one of the hardest things to cope with. It can help to try to
focus on what you can control. You may want to find out more
about the leukaemia, its treatment and how to manage side
effects. It can also help to talk about your feelings and to take
time to do things that are important to you and that you enjoy.
Living with chronic myeloid leukaemia 67
Doctors often know roughly how many people can benefit from
a type of treatment. But they can’t be sure what will happen to an
individual person. Although they may not be able to answer your
questions fully, they can usually talk through any problems with
you and give you some guidance.
Avoidance
Some people cope by not wanting to know very much about the
leukaemia and by not talking about it. If you feel like this, let your
family and friends know that you don’t want to talk about it right
now. You can also tell your doctor if there are things you don’t
want to know or talk about yet.
Occasionally, this avoidance can be extreme. Some people
may not believe that they have leukaemia. This is sometimes
called being in denial. It may stop them making decisions about
treatment. If this happens, it’s very important for them to get
help from their doctor.
Sometimes, avoidance is the other way around. Family and
friends may seem to avoid you and the fact that you have
leukaemia. They may not want to talk about it or they might
change the subject. This is usually because they are also finding
the leukaemia difficult to cope with, and they may need support
too. Try to let them know how this makes you feel and that talking
openly with them about your illness will help you.
68 Understanding chronic myeloid leukaemia
Anger
You may feel angry about your illness and sometimes resent
other people for being well. These are normal reactions,
especially when you feel frightened, stressed, out of control
or unwell. You may get angry with the people close to you.
Let them know that you are angry at your illness and not at
them. Finding ways to help you relax and reduce stress can
help with anger. This can include talking about or writing down
how you feel, gentle exercise, breathing or relaxation therapy,
yoga or meditation.
Guilt and blame
Some people feel guilty or blame themselves or others for the
leukaemia. You may try to find reasons for why it has happened
to you. Most of the time, it’s impossible to know exactly what
has caused a person’s leukaemia. Over time, several different
factors may act together to cause a leukaemia. Doctors don’t fully
understand all of these factors yet. Instead, try to focus on looking
after yourself and getting the help and support you need.
Living with chronic myeloid leukaemia 69
Feeling alone
Some people feel alone because they don’t have enough
support. Family and friends may live far away, have other
commitments or feel uncomfortable because of their own fears
about leukaemia. Try to let your family and friends know how
you feel and how they could support you more.
If you need more support, you can call the Macmillan Support
Line free on 0808 808 00 00 and talk to one of our cancer
support specialists. Our website can help you find out about
local support groups – visit macmillan.org.uk/supportgroups
You can also talk to other people going through the same thing
on our Online Community at macmillan.org.uk/community
It’s normal to have times when you want to be left alone to sort
out your feelings. But if you find you’re avoiding people a lot of
the time, then try to talk to your doctor or nurse.
If you need more help
These feelings can be very difficult to cope with and sometimes
people need more help. This happens to lots of people and
doesn’t mean you’re not coping.
If you feel anxious, panicky or sad a lot of the time, or think you
may be depressed, talk to your doctor or nurse. They can refer you
to a doctor or counsellor who can help. They may also prescribe
medicine to help with anxiety or an antidepressant drug.
Our booklet How are you feeling? The emotional
effects of cancer discusses the feelings you may have
in more detail, and has suggestions for coping with them.
70 Understanding chronic myeloid leukaemia
Living with chronic myeloid leukaemia 71
Talking to children
Deciding what to tell your children or grandchildren about your
leukaemia is difficult. An open, honest approach is usually best.
Even very young children can sense when something is wrong,
and their fears can sometimes be worse than the reality.
How much you tell your children will depend on their age and
how mature they are. It may be best to start by giving only small
amounts of information and gradually tell them more to build up
a picture of your illness.
Teenagers
Teenagers can have an especially hard time. At a stage when
they want more freedom, they may be asked to take on new
responsibilities and they may feel over-burdened. It’s important
that they can go on with their normal lives as much as possible
and still get the support they need.
If they find it hard to talk to you, you could encourage them
to talk to someone close who can support and listen to them,
such as a grandparent, family friend, teacher or counsellor.
They may also find it useful to visit the website riprap.org.uk
It has been developed especially for teenagers who have a
parent with cancer.
Our booklet Talking to children and teenagers
when an adult has cancer includes discussion about
sensitive topics. There’s also a video on our website that
may help, at macmillan.org.uk/talkingtochildren
72 Understanding chronic myeloid leukaemia
Who can help?
Many people are available to help you and your family.
District nurses work closely with GPs and make regular visits to
patients and their families at home if needed.
The hospital social worker can give you information about social
services and benefits you may be able to claim, such as meals
on wheels, a home helper or hospital fares. The social worker
may also be able to arrange childcare for you during and after
treatment.
In many areas of the country, there are also specialist nurses
called palliative care nurses. They are experienced in assessing
and treating symptoms of advanced leukaemia. Palliative care
nurses are sometimes known as Macmillan nurses. However,
many Macmillan professionals are nurses who have specialist
knowledge in a particular type of cancer or leukaemia. You may
meet them when you’re at a clinic or in hospital.
Marie Curie nurses help care for people approaching the end
of their lives in their own homes. Your GP or hospital specialist
nurse can usually arrange a visit by a palliative care or Marie
Curie nurse.
There’s also specialist help available to help you cope with the
emotional impact of leukaemia and its treatment. You can ask
your hospital doctor or GP to refer you to a doctor or counsellor
who specialises in supporting people with leukaemia and their
families. Our cancer support specialists on 0808 808 00 00
can tell you more about counselling and can let you know about
services in your area.
Living with chronic myeloid leukaemia 73
If you are a relative or friend
Some people find it hard to talk about leukaemia or share their
feelings. You might think it’s best to pretend everything is fine,
and carry on as normal. You might not want to worry the person
with leukaemia, or you might feel you’re letting them down if you
admit to being afraid. Unfortunately, denying strong emotions
can make it even harder to talk, and may lead to the person with
leukaemia feeling very isolated.
Partners, relatives and friends can help by listening carefully to
what the person with leukaemia wants to say. It may be best not
to rush into talking about the illness. Often it’s enough just to
listen and let the person with leukaemia talk when they are ready.
You may find some of the courses on our Learn Zone website
helpful. There are courses to help with listening and talking,
to help friends and family support their loved ones affected by
cancer. Visit macmillan.org.uk/learnzone to find out more.
Our booklet Lost for words – how to talk to someone with
cancer has more suggestions if you have a friend or relative
with leukaemia.
If you’re looking after a family member or friend with leukaemia,
you may find our booklet Looking after someone with cancer
helpful. It’s based on carers’ experiences and has lots of practical
tips and information.
We have more information about supporting someone with
leukaemia at macmillan.org.uk/carers
74 Understanding chronic myeloid leukaemia
5
If you are a relative or friend 75
Work and
financial
support
Financial help and benefits
76
Work
79
76 Understanding chronic myeloid leukaemia
Financial help and benefits
If you are struggling to cope with the financial effects of
leukaemia, help is available.
If you cannot work because you are ill, you may be able to get
Statutory Sick Pay. Your employer will pay this for up to 28 weeks
of sickness. If you qualify for it, they cannot pay you less.
Before your Statutory Sick Pay ends, or if you do not qualify for it,
check whether you can get Employment and Support Allowance
(ESA). This benefit is for people who cannot work because they
are ill or disabled.
There are two different types of ESA:
•• contributory – you can get this if you have made enough
national insurance contributions
•• income-related – you can get this if your income and savings
are below a certain level.
Since October 2013, a new benefit called Universal Credit has
started replacing income-related ESA in England, Scotland and
Wales. This benefit is for people who are looking for work or on
a low income. Personal Independence Payment (PIP) is a new
benefit for people under 65 who find it difficult to walk or look
after themselves (or both). You must have had these difficulties for
at least three months, and they should be expected to last for the
next nine months. Since April 2013, PIP has started to replace a
similar older benefit called Disability Living Allowance in England,
Scotland and Wales. Attendance Allowance (AA) is for people
aged 65 or over who find it difficult to look after themselves.
You may qualify if you need help with things like getting out of
Work and financial support 77
bed, having a bath or dressing yourself. You don’t need to have a
carer, but you must have needed care for at least six months.
If you are terminally ill, you can apply for PIP, DLA or AA under
the ‘special rules’. This means your claim will be dealt with quickly
and you will get the benefit you applied for at the highest rate.
Help for carers
Carers Allowance is a weekly benefit that helps people who look
after someone with a lot of care needs. If you don’t qualify for
it, you can apply for Carer’s Credit. This helps you to build up
qualifying years for a State Pension.
More information
The benefits system can be hard to understand, so it’s a good
idea to talk to an experienced welfare rights adviser. You can
speak to one by calling the Macmillan Support Line on 0808 808
00 00. We’ve just listed some benefits here, but there may be
others you can get.
You can find out about state benefits and apply for them online
at gov.uk (England, Wales and Scotland) and nidirect.gov.uk
(Northern Ireland). These websites have information about
financial support, your rights, employment and independent
living. You can also get information about these issues from
the relevant Department for Work and Pensions helplines
(see page 91) or Citizens Advice (see page 91). In Northern
Ireland, you can call the Benefit Enquiry Line Northern Ireland
on 0800 220 674.
Our booklet Help with the cost of cancer has more
detailed information. You might also find our video
at macmillan.org.uk/gettingfinancialhelp useful.
78 Understanding chronic myeloid leukaemia
Insurance
People who have, or have had, leukaemia may find it hard to
get certain types of insurance, including life and travel insurance.
A financial adviser can help you look at your needs and find the
best deal for you. You can find a financial adviser by contacting
one of the organisations on page 92.
You may find our booklets Insurance and
Getting travel insurance helpful.
Work and financial support 79
Work
You may need to take time off work during your treatment. It can
be hard to judge the best time to go back to work, and this will
depend mainly on the type of work you do, what side effects you
have and how much your income is affected. It’s important to do
what’s right for you.
Getting back into your normal routine can be very helpful, and
you may want to go back to work as soon as possible. It can be
helpful to talk to your employer about the situation – it may be
possible for you to work part-time or job share.
On the other hand, it may be many months before you
feel ready to return to work. It’s important not to take on too
much, too soon. Your consultant, GP or specialist nurse can
help you decide when and if you should go back to work.
Employment rights
The Equality Act 2010 protects anyone who has, or has had,
leukaemia. Even if a person who had leukaemia in the past
has been successfully treated and is now cured, they are
still covered by the act. This means their employer must not
discriminate against them for any reason, including their past
leukaemia. The Disability Discrimination Act protects people
in Northern Ireland.
Our booklets Work and cancer, Self-employment and
cancer and Working while caring for someone with
cancer have more information that may be helpful. There’s
also lots more information at macmillan.org.uk/work
80 Understanding chronic myeloid leukaemia
6
Work 81
Further
information
About our information
82
Other ways we can help you
84
Other useful organisations
87
Your notes and questions
93
82 Understanding chronic myeloid leukaemia
About our information
We provide expert, up-to-date information
about cancer. And all our information is free
for everyone.
Order what you need
Other formats
You may want to order more
leaflets or booklets like this one.
Visit be.macmillan.org.uk or
call us on 0808 808 00 00.
We have booklets on different
cancer types, treatments and
side effects. We also have
information about work,
financial issues, diet, life after
cancer and information for
carers, family and friends.
We also provide information
in different languages and
formats, including:
All of our information is also
available online at macmillan.
org.uk/cancerinformation
There you’ll also find videos
featuring real-life stories
from people affected by
cancer, and information
from health and social
care professionals.
•• large print
•• audiobooks
•• Braille
•• British Sign Language
•• Easy Read booklets
•• translations.
Find out more at macmillan.
org.uk/otherformats
If you’d like us to produce
information in a different
format for you, email us at
cancerinformationteam@
macmillan.org.uk or call
us on 0808 808 00 00.
Further information 83
Help us improve
our information
We know that the people
who use our information are
the real experts. That’s why
we always involve them in
our work. If you’ve been
affected by leukaemia, you can
help us improve our information.
We give you the chance to
comment on a variety of
information including booklets,
leaflets and fact sheets.
If you’d like to hear more
about becoming a reviewer,
email reviewing@macmillan.
org.uk You can get involved
from home whenever you like,
and we don’t ask for any
special skills – just an interest
in our cancer information.
84 Understanding chronic myeloid leukaemia
Other ways we can help you
At Macmillan, we know how a cancer
diagnosis can affect everything, and we’re
here to support you. No one should face
cancer alone.
Talk to us
Call us on 0808 808 00 00
or email us via our website,
macmillan.org.uk/talktous
If you or someone you know is
affected by leukaemia, talking
about how you feel and sharing Information centres
your concerns can really help.
Our information and support
centres are based in hospitals,
Macmillan Support Line
libraries and mobile centres.
Our free, confidential phone
There, you can speak with
line is open Monday–Friday,
someone face to face.
9am–8pm. Our cancer support
specialists can:
Visit one to get the information
you need, or if you’d like a
•• help with any medical
private chat, most centres
questions you have about
have a room where you can
your leukaemia or treatment
speak with someone alone
and in confidence.
•• help you access benefits and
give you financial advice
Find your nearest centre
at macmillan.org.uk/
•• be there to listen if you need
informationcentres or call
someone to talk to
us on 0808 808 00 00.
•• tell you about services that
can help you in your area.
Further information 85
Talk to others
Online community
Thousands of people use our
No one knows more about
online community to make
the impact leukaemia can
friends, blog about their
have on your life than those
experiences and join groups
who have been through it
to meet other people going
themselves. That’s why we help through the same things.
to bring people together in their You can access it any time
communities and online.
of day or night. Share your
experiences, ask questions,
Support groups
or just read through people’s
Whether you are someone
posts at macmillan.org.uk/
living with leukaemia or a
community
carer, we can help you find
The Macmillan
support in your local area,
healthcare team
so you can speak face to face
with people who understand.
Our nurses, doctors and
Find out about support groups
other health and social care
in your area by calling us or
by visiting macmillan.org.uk/ professionals give expert care
and support to individuals and
selfhelpandsupport
their families. Call us or ask
your GP, consultant, district
nurse or hospital ward sister
if there are any Macmillan
professionals near you.
‘Everyone is so supportive on the online community,
they know exactly what you’re going through. It can
be fun too. It’s not all just chats about cancer.’
Mal
86 Understanding chronic myeloid leukaemia
Help with money worries
Having leukaemia can bring
extra costs such as hospital
parking, travel fares and
higher heating bills. If you’ve
been affected in this way,
we can help.
Financial advice
Our financial guidance
team can give you advice
on mortgages, pensions,
insurance, borrowing
and savings.
Help accessing benefits
Our benefits advisers can
offer advice and information
on benefits, tax credits, grants
and loans. They can help you
work out what financial help you
could be entitled to. They can
also help you complete your
forms and apply for benefits.
Macmillan Grants
Macmillan offers one-off
payments to people with
cancer. A grant can be
for anything from heating
bills or extra clothing to a
much-needed break.
Call us on 0808 808 00 00
to speak to a financial guide or
benefits adviser, or to find out
more about Macmillan Grants.
We can also tell you about
benefits advisers in your area.
Visit macmillan.org.uk/
financialsupport to find out
more about how we can help
you with your finances.
Help with work and cancer
Whether you’re an employee,
a carer, an employer or are
self-employed, we can provide
support and information to help
you manage leukaemia at work.
Visit macmillan.org.uk/work
Further information 87
Other useful organisations
There are lots of other organisations that
can give you information or support.
Anthony Nolan Bone
Marrow Trust
Unit 2 Heathgate Place,
75–87 Agincourt Road,
London NW3 2NU
Tel 0303 303 0303
Email [email protected]
www.anthonynolan.org
Runs the UK’s largest register
of fully tissue-typed volunteer
donors. Accepts new bone
marrow donors.
British Bone Marrow
Donor Registry
Tel 0300 123 23 23
www.nhsbt.nhs.uk/
bonemarrow
A national register of donors.
Also provides information
about transplants and donating
blood and stem cells.
Leukaemia &
Lymphoma Research
39–40 Eagle Street,
London WC1R 4TH
Tel 020 7405 0101
(Mon–Fri, 9am–5pm)
Email info@
beatingbloodcancers.org.uk
www.leukaemialymphoma
research.org.uk
Supports research into the
causes, treatment and cure of
leukaemia, lymphoma and
myeloma. Provides information
and booklets about the
diseases and their treatments.
Leukaemia CARE
1 Birch Court, Blackpole East,
Worcester WR3 8SG
Tel 0808 8010 444 (24/7)
www.leukaemiacare.org.uk
Provides care and support to
The CML Support Group
people affected by leukaemia,
www.cmlsupport.org.uk
lymphoma and the allied blood
Online support group for CML
disorders. Offers a holiday
patients, their families and carers. programme, financial help,
Has a forum and information
friendship and support,
about current CML therapies.
and regional support groups.
88 Understanding chronic myeloid leukaemia
General cancer
information and support
Cancer Black Care
79 Acton Lane,
London NW10 8UT
Tel 020 8961 4151
Email
[email protected]
www.cancerblackcare.org.uk
Offers information and support
for people with cancer from
ethnic communities, their
friends, carers and families.
Cancer Focus
Northern Ireland
40–44 Eglantine Avenue,
Belfast BT9 6DX
Tel 0800 783 3339
(Mon–Fri, 9am–1pm)
Email [email protected]
www.cancerfocusni.org
Offers a variety of services to
people affected by cancer,
including a free helpline,
counselling and links to
local support groups.
Cancer Research UK
www.cancerhelp.org.uk
Has patient information on
all types of cancer and has
a clinical trials database.
Cancer Support Scotland
Calman Cancer Support
Centre, 75 Shelley Road,
Glasgow G12 0ZE
Tel 0800 652 4531
Email info@
cancersupportscotland.org
www.cancersupport
scotland.org
Runs cancer support
groups throughout Scotland.
Also offers free complementary
therapies and counselling to
anyone affected by cancer.
Maggie’s Centres
1st Floor, One Waterloo Street,
Glasgow G2 6AY
Tel 0300 123 1801
Email enquiries@
maggiescentres.org
www.maggiescentres.org
Provide information about
cancer, benefits advice,
and emotional or
psychological support.
Further information 89
Penny Brohn Cancer Care
Chapel Pill Lane,
Pill, Bristol BS20 0HH
Tel 0845 123 2310
(Mon–Fri, 9.30am–5pm)
Email
[email protected]
www.pennybrohn
cancercare.org
Offers physical, emotional
and spiritual support, using
complementary therapies
and self-help techniques.
Riprap
www.riprap.org.uk
Website developed especially
for teenagers who have a
parent with cancer.
Tenovus
Head Office,
Gleider House, Ty Glas Road,
Cardiff CF14 5BD
Tel 0808 808 1010
(Mon–Sun, 8am–8pm)
www.tenovus.org.uk
Aims to help everyone
get equal access to cancer
treatment and support.
Funds research and provides
support such as mobile
cancer support units, a free
helpline, an ‘Ask the nurse’
service on the website and
benefits advice.
General health
information
Health and Social Care
in Northern Ireland
www.hscni.net
Provides information about
health and social care services
in Northern Ireland.
Healthtalkonline
www.healthtalkonline.org
www.youthhealthtalk.org
(site for young people)
Has information about cancer,
and videos and audio clips
of people’s experiences.
National Cancer
Institute –National Institute
of Health – USA
www.cancer.gov
Gives information on cancer
and treatments.
NHS Choices
www.nhs.uk
The UK’s biggest health
information website.
Also has service information
for England.
NHS Direct Wales
www.nhsdirect.wales.nhs.uk
NHS health information
site for Wales.
90 Understanding chronic myeloid leukaemia
NHS Inform
www.nhsinform.co.uk
NHS health information
site for Scotland.
Patient UK
www.patient.co.uk
Provides people in the UK with
information about health and
disease. Includes evidencebased information leaflets on a
wide variety of medical and
health topics. Also reviews and
links to many health- and
illness-related websites.
Counselling and
emotional support
British Association
for Counselling and
Psychotherapy (BACP)
BACP House,
15 St John’s Business Park,
Lutterworth LE17 4HB
Tel 01455 883 300
Email [email protected]
www.bacp.co.uk
Promotes awareness of
counselling and signposts
people to appropriate services.
You can search for a qualified
counsellor at itsgoodtotalk.
org.uk
Samaritans
Freepost RSRB-KKBY-CYJK,
Chris, PO Box 9090,
Stirling FK8 2SA
Tel 08457 90 90 90
Email [email protected]
www.samaritans.org
Provides confidential and non-judgemental emotional
support, 24 hours a day,
365 days a year, for people
experiencing feelings of
distress or despair.
UK Council for
Psychotherapy (UKCP)
2nd Floor, Edward House,
2 Wakley Street,
London EC1V 7LT
Tel 020 7014 9955
Email [email protected]
www.psychotherapy.org.uk
Holds the national register of
psychotherapists and
psychotherapeutic counsellors,
listing practitioners who
meet exacting standards
and training requirements. Further information 91
Financial and
legal information
Benefit Enquiry Line
Northern Ireland
Tel 0800 220 674
(Mon–Wed and Fri, 9am–5pm,
Thu, 10am–5pm)
Textphone 0800 243 787
www.nidirect.gov.uk/
money-tax-and-benefits
Provides information
and advice about disability
benefits and carers’ benefits.
Community Legal Advice
Tel 0845 345 43 45
(Mon–Fri, 9am–8pm,
Sat, 9am–12.30pm)
Minicom 0845 609 6677
www.gov.uk/
community-legal-advice
Has a list of legal advice
centres in England and Wales
and solicitors that take legal aid
cases. Offers a free translation
service if English isn’t your first
language.
Department for Work
Citizens Advice
and Pensions (DWP)
Provides advice on financial,
Disability Benefits Helpline
legal, housing and employment 08457 123 456
issues. Find details for your local Textphone 0845 722 4433
office in the phone book or on
Personal Independence
one of the following websites:
Payment Helpline
0845 850 3322
England and Wales
Textphone 0845 601 6677
www.citizensadvice.org.uk Carer’s Allowance Unit
0845 608 4321
Scotland
Textphone 0845 604 5312
www.cas.org.uk
www.gov.uk/browse/
benefits
Northern Ireland
Manages state benefits in
www.citizensadvice.co.uk England, Scotland and Wales.
You can apply for benefits
You can also find advice
and find information online
online in a range of languages or through its helplines.
at adviceguide.org.uk
92 Understanding chronic myeloid leukaemia
GOV.UK
www.gov.uk
Has comprehensive information
about social security benefits
and public services.
The Money Advice Service
Tel 0300 500 5000
(Mon–Fri, 8am–8pm,
Sat, 9am–1pm)
Typetalk
18001 0300 500 5000
www.moneyadvice
service.org.uk
Runs a free financial
health check service and
gives advice about
all types of financial matters.
Has an online chat service
for instant money advice.
Money Advice Scotland
Tel 0141 572 0237
www.moneyadvicescotland.
org.uk
National Debtline (England,
Scotland and Wales)
Tricorn House,
51–53 Hagley Road,
Birmingham B16 8TP
Tel 0808 808 4000
(Mon–Fri, 9am–9pm,
Sat, 9.30am–1pm)
www.nationaldebtline.co.uk
A national helpline for
people with debt problems.
The service is free, confidential
and independent.
Personal Finance Society –
‘Find an Adviser’ service
www.findanadviser.org
Use the website to find qualified
financial advisers in your area.
Unbiased.co.uk
Email [email protected]
www.unbiased.co.uk
On the website you can
search for qualified advisers
who specialise in giving
financial advice, mortgage,
accounting or legal advice.
You can search for more organisations on our
website at macmillan.org.uk/organisations,
or call us on 0808 808 00 00.
Your notes
and questions
questions
94 Understanding chronic myeloid leukaemia
Disclaimer
We make every effort to ensure that the information we provide is accurate and up
to date, but it should not be relied upon as a substitute for specialist professional
advice tailored to your situation. So far as is permitted by law, Macmillan does not
accept liability in relation to the use of any information contained in this publication,
or third-party information or websites included or referred to in it.
Thanks
This booklet has been written, revised and edited by Macmillan Cancer Support’s
Cancer Information Development team. It has been approved by our Chief Medical
Editor, Dr Tim Iveson, Macmillan Consultant Medical Oncologist, and by Dr Anne
Parker, Consultant Haemotologist, The Beatson, West of Scotland Cancer Centre.
With thanks to: Professor Richard Clark, Professor of Haematology, University of
Liverpool; Dr Brian Huntly, Senior Clinical Lecturer, Department of Haematology,
Cambridge Institute for Medical Research; Dr Susan Rhodes, Clinical Research Fellow,
University of Glasgow; and the people affected by cancer who reviewed this edition.
Sources
European Leukemia Net. Recommendations for the management of chronic myeloid
leukemia. 2013.
Hoffman et al. Haematology basic principles and practice. 6th edition. 2013.
National Institute for Health and Care Excellence. Leukaemia (chronic myeloid) –
dastatinib, nilotinib and standard dose imatinib for the first-line treatment of chronic
myeloid leukaemia (part review of technology appraisal guidance 70). April 2012.
National Institute for Health and Care Excellence. Technology appraisal guidance.
251/241/299.
Provan D. ABC of clinical haematology. 3rd edition. 2007.
Up To Date. Overview of the treatment of chronic myeloid leukaemia.
www.uptodate.com (accessed March 2014).
Can you do something to help?
We hope this booklet has been useful to you. It’s just one of our
many publications that are available free to anyone affected by
cancer. They’re produced by our cancer information specialists
who, along with our nurses, benefits advisers, campaigners and
volunteers, are part of the Macmillan team. When people are
facing the toughest fight of their lives, we’re there to support
them every step of the way.
We want to make sure no one has to go through cancer alone,
so we need more people to help us. When the time is right for you,
here are some ways in which you can become a part of our team.
5 ways
you can someone
hElP with
cAncer
Share your cancer experience
Support people living with cancer by telling your story,
online, in the media or face to face.
Campaign for change
We need your help to make sure everyone gets the right support.
Take an action, big or small, for better cancer care.
Help someone in your community
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Or just a cup of tea and a chat. Could you lend a hand?
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Macmillan Cancer Support and our trading
companies would like to hold your details in
order to contact you about our fundraising,
campaigning and services for people affected
by cancer. If you would prefer us not to use your
details in this way please tick this box.
In order to carry out our work we may need to
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If you’d rather donate online go to macmillan.org.uk/donate
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Please cut out this form and return it in an envelope (no stamp required) to:
Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851,
89 Albert Embankment, London SE1 7UQ 27530
Cancer is the toughest fight most of us
will ever face. If you or a loved one has
been diagnosed, you need a team of
people in your corner, supporting you
every step of the way. That’s who we are.
We are the nurses and therapists helping you through
treatment. The experts on the end of the phone.
The advisers telling you which benefits you’re entitled to.
The volunteers giving you a hand with the everyday
things. The campaigners improving cancer care.
The community supporting you online, any time.
The fundraisers who make it all possible.
You don’t have to face cancer alone.
We can give you the strength to get through it.
We are Macmillan Cancer Support.
For cancer support every step of the way,
call Macmillan on 0808 808 00 00
(Mon–Fri, 9am–8pm) or visit macmillan.org.uk
Hard of hearing? Use textphone
0808 808 0121, or Text Relay.
Non-English speaker? Interpreters available.
Braille and large print versions on request.
© Macmillan Cancer Support, July 2014. 11th edition. MAC11621.
Next planned review 2017. Macmillan Cancer Support, registered charity
in England and Wales (261017), Scotland (SC039907) and the Isle of
Man (604). Printed using sustainable material. Please recycle.