Pain and myeloma

Transcription

Pain and myeloma

Pain and
myeloma
Myeloma
Infoguide
Series
Pain Infoguide Nov 2015 final.indd 1
Symptoms
and
complications
23/11/2015 14:42:24
This Infoguide has been made possible thanks to the generosity
of Myeloma UK supporters.
To find out how you can support our vital work call 0131 557 3332
or email [email protected]
Myeloma Infoline: 0800 980 3332 or
1800 937 773 from Ireland
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23/11/2015 14:42:24
Contents
4 Introduction
40Living with pain
6 What is myeloma?
42Future directions
9 T
reatment for myeloma
- the basics
43 Medical terms explained
10 What is pain?
49Appendix 1
12 Types of pain
50Further information and
useful organisations
13 Psychological impact of pain
64About Myeloma UK
14 Causes of pain in myeloma
66Information available
from Myeloma UK
29 Describing your pain
31 Treatment of pain
39 The palliative care team
67 Other publications
68 We need your help
Disclaimer: The information in this Infoguide is not meant to replace the advice of your medical team.
They are the best people to ask if you have questions about your individual situation.
This publication is intended for a UK audience. It therefore may not provide relevant or accurate information
for a non-UK setting.
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Introduction
This Infoguide is written for myeloma patients. It may
also be helpful for their families and friends.
It aims to:
■■ Help you understand what pain
is, the different types of pain
and causes of pain in myeloma
patients
■■ Provide information on the
Some of the more technical or
unusual words appear in bold the
first time they are used and are
described in the Medical terms
explained section on page 43.
different methods of pain
treatment available and the
role of the palliative care team
in the treatment of pain
■■ Give guidance on which
non-medical strategies are
available that may help to
improve your pain and may
make living with pain a little
easier
4
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For more information
Myeloma UK provides a wide
range of information covering
all aspects of the treatment and
management of myeloma.
The Myeloma Infoline is open
from Monday to Friday, 9am to
5pm and is free to phone from
anywhere in the UK and Ireland.
For a full publication list
visit www.myeloma.org.uk/
publications
From outside the UK and
Ireland, call +44 (0)131 557 9988
(charged at normal rate).
To order your free copies contact
Myeloma UK. Our information is
also available to download at
www.myeloma.org.uk
Information and support about
myeloma is also available around
the clock at www.myeloma.org.uk
To talk to one of our Myeloma
Information Specialists about
any aspect of myeloma, call
the Myeloma Infoline on
0800 980 3332 or
1800 937 773 from Ireland.
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What is myeloma?
Myeloma, also known as multiple myeloma, is a type of
cancer arising from plasma cells that are normally found
in the bone marrow. Plasma cells are a type of white
blood cell which forms part of the immune system.
Normal plasma cells produce
different types of antibodies
(also called immunoglobulins) to
help fight infection. In myeloma,
the plasma cells become
malignant and release only
one type of antibody, known as
paraprotein, which has no useful
function. It is often through the
measurement of paraprotein
that myeloma is diagnosed and
monitored.
Bone marrow is the ‘spongy’
material found in the centre of
the larger bones in the body.
As well as being home to plasma
cells, the bone marrow is where
blood cells (red blood cells,
white blood cells and platelets)
are made (see Figure 1).
Red
blood cells
White
blood cells
Lymphocyte
Bone marrow
Natural killer cell
Plasma cell
Monocyte
Blood
stem cell
Neutrophil
Eosinophil
Basophil
Platelets
Figure 1. Bone marrow – responsible for the production of blood cells
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These all originate from blood
stem cells. Plasma cells normally
make up less than 5% of the total
blood cells in the bone marrow.
Myeloma affects multiple places
in the body (hence the term
‘multiple myeloma’) where bone
marrow is normally active i.e.
within the bones of the spine,
pelvis, rib cage and the areas
around the shoulders and hips.
The areas usually not affected are
the extremities – the hands and
feet – as the bones here do not
contain bone marrow.
Most of the complications and
symptoms of myeloma are
caused by a build-up of myeloma
cells in the bone marrow and the
presence of paraprotein in the
blood or in the urine.
Common problems include bone
pain, bone fractures, tiredness
due to anaemia, frequent or
recurrent infections (such as
chest infections, urinary tract
infections and shingles), kidney
damage and hypercalcaemia.
Myeloma most commonly occurs
in people later in life i.e. over
the age of 65. However, some
myeloma patients are younger.
It is also slightly more common
in men than in women.
The causes of myeloma are
poorly understood but it is
believed to be caused by an
interaction of both genetic and
environmental factors.
There are thought to be multiple
environmental factors which may
increase the risk of developing
myeloma. Exposure to specific
chemicals, radiation, viruses and
a weakened immune system
are considered important
trigger factors.
It is likely that myeloma develops
when a susceptible (at risk)
individual has been exposed
to one or probably several of
these factors.
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There is a slight tendency for
myeloma to occur in families.
Although rare, this suggests
there is an inherited genetic
factor in myeloma. This alone is
not enough to cause myeloma
but may make an individual at a
slightly higher risk of developing
myeloma – other environmental
factors also need to have an
impact before it develops.
In the majority of cases, however,
the causes of myeloma are
unclear and are likely to be
unique to each patient.
Much research is ongoing into
the biology and genetics of
myeloma to determine the
factors responsible for its onset
and progression.
Basic facts
■■ There are approximately
4,800 people diagnosed with
myeloma every year in the UK
■■ There are approximately
15,000 – 20,000 people living
with myeloma in the UK at any
one time
■■ Myeloma accounts for 15%
of blood cancers and 1% of
cancers generally
■■ Myeloma mostly affects people
aged 65 and over but it has
been diagnosed in people as
young as 20
For more information see the
Is myeloma an inherited cancer?
Infosheet from Myeloma UK.
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Treatment for
myeloma – the basics
Treatments for myeloma can be very effective at
controlling the disease, reducing symptoms and
improving quality of life but, as yet, they are not
curative. In general, treatment is given to:
■■ Reduce the levels of myeloma
as far as possible
■■ Control the myeloma for as
long as possible when given as
maintenance treatment
■■ Control the myeloma if it has
come back again (relapse)
■■ Relieve the symptoms and
reduce the complications the
myeloma is causing
■■ Improve quality of life
■■ Prolong life
It is important to note that
not everyone diagnosed with
myeloma will need to start
treatment immediately and it is
usual to wait until the myeloma is
actively causing symptoms and
complications before starting
treatment. Treatment for myeloma
is often most effective when two
or more drugs, with different but
complementary mechanisms of
action, are given together.
In the past the number of
treatment options for myeloma
was limited but, with the
development of newer treatments
in the last decade, there are now
more options available.
Before starting treatment, each
option must be considered carefully
so that the benefits of treatment
are weighed against the possible
risks of side-effects. In most
patients, overall health, age, fitness
and any previous treatments will be
taken into account.
The length of treatment varies
depending on the type of
treatment(s) being used and
the stage at which the treatment
is being given. Treatment is
usually given over a number of
weeks which may or may not
be followed by a rest period.
This pattern constitutes one
cycle of treatment and a series of
treatment cycles is referred to as
a course of treatment.
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What is pain?
Pain is a sensation which causes discomfort or distress
and is often a signal that the body is dealing with
an injury or illness. This signal is picked up by pain
receptors in the nerve endings and is transmitted from
the affected area to the brain. The brain then gathers
the information and responds by telling your body to
protect itself. Therefore, pain is part of a warning system
to minimise potential harm to your body.
Most pain resolves when the
cause of the pain is eliminated
and the body has healed.
However, sometimes pain persists
even after the body has healed.
While pain is most commonly
linked to sensations caused by
an illness, inflammation, surgery
or physical injury, it is also linked
to experiences influenced by
memories, expectations and
emotions. Pain can therefore
be caused by both physical and
emotional components and may
explain in part why pain may
persist after the body has healed.
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Pain is subjective and is very
individual. What is bearable in
one person may be intolerable in
another person, even when the
cause of the pain is similar. This
difference in perception of pain is
partly influenced by background
and culture, genetics and gender.
As a result, the response to pain
is very different from person to
person.
Unfortunately, pain is the most
common symptom of myeloma
and will affect up to 80% of
patients at some point. Living
with pain can have a huge
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impact on all areas of a patient’s
life, especially if it is untreated
or poorly managed. For many
myeloma patients, pain can
be frustrating and debilitating.
It can affect them physically,
emotionally and socially and can
cause difficulty in performing the
basic activities of daily life. It can
also have an impact on carers
and family members.
Effective control and
management of pain is an
important aspect of myeloma
treatment. To determine the
most effective treatment for
myeloma-related pain, your
doctor or nurse will identify the
type of pain you have and will try
to understand both the physical
and emotional effects associated
with it.
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Types of pain
Generally, pain is described as being either acute,
chronic or breakthrough. A brief description of each of
these terms is given below:
■■ Acute – is pain that comes on
quickly and lasts for a relatively
short period of time. Causes of
acute pain include, for example,
a headache which is quickly
resolved with or without
treatment, a stubbed toe or a
cut finger. Generally, acute pain
lasts only as long as it takes
for the damage caused by an
injury or disease to heal
■■ Breakthrough – is pain that is
an abrupt, short-lived sharp
spike of pain which overrides
persistent pain that is already
being treated. Breakthrough
pain may be a sign that the
body is developing a resistance
to the current level of pain
control treatment or that the
underlying cause of the pain
may be getting worse
12
■■ Chronic – is pain that does not
go away, or comes back often
and may exist for months or
years. Causes of chronic pain
include, for example, arthritis
and back pain
Pain can also be categorised
based on where it is coming from
in the body:
■■ Somatic or musculo-skeletal
pain – originates from joints,
muscle and bone and is often
described as dull and achy
■■ Visceral pain – originates in
the internal organs but is often
difficult to locate. It is usually
described as pressure-like,
deep squeezing
■■ Neuropathic pain – is caused
by damage to, or pressure on
the nerves and is described as
sharp, burning or shooting
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Psychological impact of pain
Pain not only affects the body, but it also has a
psychological impact and affects how you feel
emotionally. In particular, chronic pain can cause
frustration, anger, fear, poor concentration and sleep
deprivation. In turn, these can affect the way you cope
with the pain and even affect the level of pain you have.
Pain that is not treated effectively
can therefore lead to a vicious
cycle of increased pain, fatigue
and anxiety.
■■ If you feel anxious, scared
The way pain is assessed is
described in more detail on page
29 but a brief description of the
way in which emotional aspects
are considered in the treatment
of pain are included here.
■■ If you feel like you have the
When your level of pain is
assessed, it is likely that your
doctor or nurse will ask you
questions about how you are
feeling generally. They may ask
you specific questions about the
following:
■■ How much sleep you get each
night and whether you feel
tired or are fatigued
or angry
■■ If you often feel down or
depressed
support that you need from
family and friends
Such questions will help your
doctor or nurse to understand
some of the emotional impact
your pain is having so that they
can provide the most effective
pain treatment plan for you.
Your doctor or nurse should be
happy to explain to you why they
are asking specific questions and
how these questions can help
them to better assess and treat
your pain.
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Causes of pain in myeloma
There are many potential causes of pain in myeloma.
Pain can be a result of the myeloma itself or it can be
due to the side-effects of treatment.
The type and level of pain can
differ vastly from patient to
patient. It is therefore important
to explain any pain you have in
detail to your doctor or nurse.
This will help them to identify and
treat the cause of your pain as
effectively as possible.
What is myeloma bone disease?
This section describes some of
the most common causes of pain
in myeloma and may help you to
identify and describe any pain
that you may have.
What causes myeloma bone
disease?
Myeloma bone disease
Myeloma bone disease is one
of the most common and
debilitating features of myeloma,
and bone pain is a very common
symptom of bone disease.
Between 70 – 80% of patients
have evidence of myeloma bone
disease at the time of diagnosis
and most patients will develop it
at some point.
14
Myeloma bone disease is the
destruction of bone and the loss
of bone minerals from areas of the
skeleton (such as the spine, ribs
and hips) where myeloma cells are
active in the bone marrow.
Myeloma bone disease is caused
by the myeloma cells in the bone
marrow affecting the surrounding
bone, leading to the bone being
broken down faster than it can
be repaired.
Usually, the bones in the body
undergo a continuous cycle of
bone remodelling where old
bone is removed and is replaced
with new bone. This process is
normally balanced so that the rate
of bone removal is the same as
bone replacement.
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When myeloma cells are present
in the bone marrow, they cause
more bone to be removed
than replaced, resulting in the
thinning of bone (osteopenia)
and the eventual disappearance
of pockets of bone called
lytic lesions.
What causes the pain associated
with myeloma bone disease?
■■ Osteopenia and lytic lesions
can cause a dull pain which may
be spread over a generalised
area or may be more localised
because of a build-up of cells
known as a plasmacytoma
■■ Fracture or crush of one or
more affected bones causes
persistent severe pain which
may be localised or radiate
below the injury site. If a
fracture occurs in a spinal bone
(vertebra), the damaged bone
may press on the spinal cord
and may cause sharp shooting
pain or numbness in the limbs
■■ Multiple vertebral fractures
can result in the collapse of
the spinal column. This may
develop painlessly, can be
a dull achy pain, can be an
acute agonising localised pain
(electric shock-like sensation)
which radiates around the
ribs and abdomen, or can be
a shooting pain which travels
up and down the leg. As the
vertebrae collapse, a curve may
develop in the back (kyphosis)
resulting in a loss in height.
Kyphosis is often a cause of
chronic back pain and mobility
difficulties in myeloma patients.
If the kyphosis is severe, it may
put pressure on other areas of
the body such as the rib cage
and cause chest pains
■■ Destruction of bone raises
calcium levels in the blood
(hypercalcaemia) which
can sometimes cause pain
associated with gastrointestinal
symptoms such as constipation
and vomiting
For more information see the
Myeloma bone disease and
bisphosphonates Infoguide
from Myeloma UK.
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Peripheral neuropathy
Peripheral neuropathy is
the term used to describe a
condition that affects some
myeloma patients and is the most
common cause of neuropathic
pain in myeloma. Peripheral
neuropathy may be caused by
the myeloma itself or by some
of the treatments for it. The pain
caused by peripheral neuropathy
is highly individual to each
patient. It is important that if you
develop any new pain and/or
sensations, you discuss them with
your doctor or nurse as soon as
you notice them.
What is peripheral neuropathy?
Peripheral neuropathy is the term
used to describe damage to the
nerves in the peripheral parts
of the body i.e. the peripheral
nervous system.
The peripheral nervous system
includes all of the nerves outside
16
the central nervous system, and
includes the nerves in muscle,
skin, bone, organs, glands and
blood vessels. It provides the
connections which transmit
information to and from the brain.
The nerves are essentially the
communication system of your
body. It is the nerves in your body
that allow you to feel sensations
such as pain and touch as well
as sensing where your body is in
relation to its surroundings.
Damage to the peripheral
nervous system interferes with
the messages being carried
between the brain and the
body. This causes a variety
of symptoms such as altered
sensation, tingling, numbness
or pain.
In myeloma, the nerves that are
most commonly affected are
those in the hands, arms, feet
and legs.
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What causes peripheral
neuropathy in myeloma?
There are a number of potential
causes of peripheral neuropathy
in myeloma. They include:
■■ Myeloma treatments, such
as thalidomide, Velcade®
(bortezomib) and vincristine
(a chemotherapy drug) which,
particularly when given in high
doses and/or for prolonged
periods of time, can be toxic to
nerve cells
■■ If you have previously received
one of these treatments then
you may be at greater risk of
neuropathy occurring with
another potential peripheral
neuropathy-causing treatment
■■ The paraprotein produced by
What kind of pain/sensation
is associated with peripheral
neuropathy?
The symptoms of peripheral
neuropathy can vary from
patient to patient and will depend
on which nerves are affected –
pain may not always be present.
In myeloma, the hands and feet
are the most commonly affected
areas.
The pain and sensations
associated with myeloma and
myeloma treatment-associated
peripheral neuropathy may
include:
■■ Pain in various parts of the body
– this can vary in intensity and
is often described as ‘sharp’,
‘burning’, or ‘jabbing’
myeloma cells can be deposited ■■ ‘Pins and needles’ in the hands,
on the nerves and damage
arms, feet and legs – you may
them. This affects up to 20%
notice a tingling sensation
of patients before treatment
which can start in your toes or
the balls of your feet and travel
Factors unrelated to myeloma
up your legs. This sensation may
such as diabetes, vitamin
also start in your fingers and
deficiency and a history of high
work its way up your hands
alcohol consumption may also
and arms
contribute to the symptoms of
peripheral neuropathy.
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■■ Unusual sensations or an
increased sensitivity to touch –
often even the slightest touch
can cause extreme discomfort.
This is frequently worse during
the night
■■ Altered sensations – such as
a feeling of pain or heat when
touching something cold
Infection
Infection is a common
complication of myeloma and
therefore infection-related pain
can also be common. It is likely
that most patients will get several
infections at some point during
the course of their myeloma.
■■ Loss of sensation or numbness
What causes infection in
myeloma patients?
■■ Muscle cramps, weakness and
There are many different types
of infection which may be caused
by different types of bacteria,
fungi and viruses. Infection is
something that everyone has
at some point in their lifetime.
However, you may be at higher
risk of getting an infection
because your immune system
may be weakened by the
myeloma.
– in the hands and/or feet
tremors – which can interfere
with your ability to perform
everyday tasks
Symptoms of peripheral
neuropathy often start at a
low level but can increase and
become more significant over
time. Therefore, it is extremely
important that you tell your
doctor or nurse as soon as you
develop any of these symptoms.
Peripheral neuropathy is often
more easily and effectively
treated if diagnosed early.
For more information see
the Peripheral neuropathy
18
This is because you may have
a lower number of all types of
white blood cells in your blood
(leukopenia). Myeloma cells
crowd out the healthy blood cells
in the bone marrow reducing
the number of healthy blood
cells, including white blood cells,
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being released into the blood
circulation. As white blood cells
are important for helping your
body fight infection, a drop in
their level can make you more
susceptible to - and affect your
ability to fight - infection.
Some of the drugs used to treat
myeloma such as thalidomide,
Velcade and Revlimid®, can also
temporarily cause a lowering
of one type of white blood cell
called a neutrophil which is key
to fighting infection. Lowering of
neutrophils is called neutropenia,
which also puts you at greater
risk of infection.
What type of pain is associated
with infection?
Infection can occur in any part of
the body and the pain associated
with it can vary widely. The most
commonly occurring infections
and the type of pain associated
with them include:
■■ Lung infections – such as
pneumonia, can cause chest
pains. The pain is usually
located on one side of the
chest and it is usually sharp
and worsens with breathing
and coughing
■■ Urinary tract infections – can
cause pain when passing
water, which is felt as a burning
sensation. Infections of this
type can also cause cramping
or pressure in the lower back
or abdomen
■■ Skin infections – caused by
the shingles virus can be very
painful on and around the area
of skin affected by the shingles
rash. The skin becomes very
sensitive to touch and the pain
is usually a constant gnawing
pain. In addition, there may be
intermittent sharp or stabbing
pain which may, in some cases,
continue up to a year after the
shingles rash has disappeared.
This is often referred to as
post-herpetic neuralgia
■■ Mouth infections – causing
mouth ulcers and sores in
the inner cheek, inner lip,
tongue, gumline and floor of
the mouth, can cause pain or
a burning sensation which is
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made worse by eating and
drinking. Oral thrush caused
by a fungal infection can
also cause an uncomfortable
burning sensation in the mouth
and throat
■■ Gastrointestinal infections – can
cause griping abdominal pains
and spasms
Fatigue
Fatigue is a condition that affects
most, if not all, myeloma patients
at some point and it is also one of
the conditions that they find the
most challenging.
Fatigue is a feeling of extreme
tiredness, lethargy or exhaustion,
experienced all or most of the
time. It is different from the
everyday tiredness that comes
with the demands of daily life. It
is an overwhelming exhaustion
that is not relieved by sleep or
rest and can affect you physically,
psychologically and emotionally.
20
How does fatigue cause pain?
Fatigue does not cause pain
directly. However, fatigue can
have a negative impact on pain
and unfortunately fatigue and
pain can be linked together
in a vicious cycle if neither is
addressed properly. For example,
it can be difficult to sleep if you
are in pain and a lack of sleep
can be a contributing factor of
fatigue. This can cause the pain
you have to feel worse and make
it harder to bear.
Studies have shown that the
level of fatigue a patient has
correlates with the level of pain
they have. The management of
fatigue is therefore, in theory, an
important factor to consider in
the treatment of pain. However,
in practice, fatigue is actually
very hard to treat.
For more information see
the Fatigue Infoguide from
Myeloma UK.
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Side-effects of anti-myeloma
treatments
Treatments that kill myeloma
cells also often damage normal
healthy cells, causing unpleasant
side-effects. Each treatment has
its own set of side-effects but
can produce different reactions
in different patients.
Examples of treatment
side-effects that may cause
pain include:
■■ Sickness/vomiting – although
being sick is very unpleasant,
the physical act of vomiting is
not usually painful. However,
sickness and vomiting are
often associated with stomach
cramps which can be very
painful
■■ Diarrhoea and constipation
– both conditions can cause
bloating, discomfort and
stomach cramps
■■ Sore mouth and throat –
some of the anti-myeloma
drugs, particularly the
chemotherapy drugs used
in high-dose therapy and
stem cell transplantation, can
cause bleeding gums, mouth
ulcers and mouth infections.
Your mouth and throat may
also become sore (known as
mucositis) and eating, drinking
and swallowing may become
difficult for a while. If eating
and drinking are problematic,
you may need intravenous
fluids and/or nutrition until you
are able to resume eating and
drinking normally
■■ Peripheral neuropathy –
many drugs used to treat
myeloma may cause this
painful condition as described
on page 16
Most side-effects are shortterm, can be avoided, managed
well and usually resolve once
treatment is finished.
Pain due to tests, investigations
and procedures
Myeloma patients undergo
many tests, investigations and
treatment procedures. The tests
you receive on a regular basis,
such as blood tests, should
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involve no or low levels of pain.
However, some of the procedures
carried out during myeloma tests
or treatments can be painful.
The test and treatment
procedures that may cause some
degree of pain are described
below, where you will also find
a description of the type of pain
you may experience.
Not every patient will have all of
the listed procedures and it is
important to remember that, as
pain is subjective and depends
on many factors, you may
experience more or less pain than
is described here.
Blood tests
Throughout your treatment,
you will have regular blood
samples taken. Blood samples
are important in monitoring your
myeloma and your general state
of health by measuring your liver
and kidney function. Blood for
such tests are usually taken from
a vein in the arm or the back of
the hand. Any pain is normally
22
very brief and usually very
well tolerated.
What type of pain is involved
with a blood test?
Generally, blood tests involve a
momentary sharp sensation as
the needle is placed into the vein
but the procedure itself should
not be painful. You may have a
bruise from the area where the
blood was taken for a couple of
days after the test. The bruise
may be painful if pressure is
applied to it.
Blood tests are usually only
painful if it is difficult to find
a vein from which a sample
can be taken. Under these
circumstances, several attempts
may be needed to obtain a blood
sample.
Hickman® line
You may have a catheter inserted
into a central vein for a period
of time especially if you are
having your treatment by
infusion, for instance when you
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have high-dose therapy before
stem cell transplantation.
The most common type of
catheter used is called a Hickman
line. This is a tube which is placed
into one of your large veins,
allowing all of your treatment
drips/infusions to be given
without inserting a new line into
your veins at each visit.
The Hickman line also allows
blood samples to be taken
without the need for repeated
needle insertions. The procedure
for inserting the Hickman line and
the possible pain associated with
it is described below.
How is a Hickman line inserted?
Your Hickman line is inserted into
one of your large veins through
a small cut in your upper chest
(see Figure 2). Before this, you
will be given an injection of local
anaesthetic into the skin to
numb the area around your collar
bone and chest. This can cause
some stinging initially and then
numbness.
The line is placed under your skin
from the chest to the neck and,
once in the neck, is passed into a
large vein.
Collar bone
Point where
central line
enters body
Heart
Connection
for drips or
syringes
Figure 2 – Insertion of a Hickman line
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The part of the catheter outside
your body is stitched or taped to
the chest and dressed to ensure
it does not come out and that
it remains clean and dry. The
procedure usually lasts between
30 – 60 minutes, but occasionally
may take longer.
redness or swelling around the
catheter, notice any pus at the
insertion site or if you experience
any pain, you should tell your
doctor or nurse immediately.
Once the infection has been
treated, there should not be any
ongoing pain or discomfort.
What pain is involved with a
Hickman line?
Bone marrow tests
Although it may be
uncomfortable, the insertion of
your Hickman line should not be
too painful. After the procedure
the area may feel sore and tender
and your doctor or nurse will
be able to provide treatment to
reduce the pain. Any tenderness
or discomfort should disappear
within 24 hours.
The most common cause of
pain associated with a Hickman
line after it has been inserted is
from infection. It is important to
keep your Hickman line clean
and dry and your doctor or nurse
will teach you how to do so to
prevent infection. If you have any
24
There are two types of bone
marrow tests you may need to
have. They involve either the
removal of some liquid bone
marrow (bone marrow aspiration)
by suction into a syringe or the
removal of a 1 – 2 cm core of
bone marrow tissue in one piece
(bone marrow biopsy).
The aspirate is looking at the
percentage of myeloma cells
present in the bone marrow. The
biopsy is looking at whether the
bone marrow tissue has been
infiltrated by the myeloma cells.
Both an aspirate and a biopsy are
usually carried out at diagnosis,
although not in every patient.
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How is the bone marrow
collected?
Bone marrow samples are usually
taken from the pelvic bone (see
Figure 3) that you can feel just
below the waist. Occasionally,
other large bones such as the
breastbone (sternum) may be
used for bone marrow aspiration.
You will be given a local
anaesthetic into the skin and
tissue just over the bone. This
may cause some stinging initially
and then numbness. You may
also be given a mild sedative
or a general anaesthetic if you
request one or if a large sample is
required.
A needle is inserted through
the skin and into the bone. The
needle used for a bone marrow
aspiration is thin whereas the one
used for a bone marrow biopsy
is thicker. A syringe is attached
to the needle to help draw up the
bone marrow sample.
If you are having both tests done
at the same time, the aspirate will
be collected first. For the bone
marrow biopsy, the thicker needle
Figure 3 – Bone marrow sample being taken from the pelvic bone
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is inserted and rotated to capture
a core of bone marrow. Once the
needle is removed, a pressure
bandage is applied to prevent
bleeding. Both procedures done
together, one after the other, last
only a few minutes.
What pain is involved with a
bone marrow biopsy?
A bone marrow biopsy can be
painful. During the procedure it
is likely that you will be asked to
lie on your front or side. If you
have bone pain due to myeloma
bone disease the act of lying still
in a particular position while the
procedure is carried out may be
painful. Let the doctor or nurse
know if this is painful for you and
they may be able to suggest an
alternative position.
The procedure itself can cause a
dull aching pain but it doesn’t last
long. You may also feel a pulling
sensation when the sample
is taken. Some patients may
experience a sudden sharp pain
at this point.
After the test, your pelvic area
26
may ache but this normally
subsides after a couple of days.
Any pain can normally be relieved
by over-the-counter paracetamol
or by applying a cold compress
to the biopsy site. Light exercise
such as walking can also help to
relieve the pain.
Radiotherapy
Radiotherapy is the use of highenergy radiation (usually X-rays)
to kill cancer cells. It works by
targeting cells that are dividing
rapidly (such as myeloma cells)
and damaging them so they
cannot reproduce and grow.
Why is radiotherapy used in
myeloma?
Radiotherapy may be used to kill
myeloma cells and to relieve pain
in localised areas where there
is damage caused by myeloma
bone disease. Radiotherapy can
often relieve pain more quickly
than anti-myeloma and/or
pain-killing medications and
may sometimes be the initial
treatment given.
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What does radiotherapy
involve?
Radiotherapy treatment
requires specialist staff and
equipment and is carried out in
the radiotherapy department
of larger hospitals. This means
that it is sometimes necessary
to travel to another hospital for
treatment. Normally, you will
receive radiotherapy treatment
as an out-patient, unless you
are already in hospital for other
treatment.
Radiotherapy is given using a
large machine positioned exactly
over the area of the body to be
treated. Receiving radiotherapy
is very similar to having an X-ray.
The radiation beam is invisible
but the machine may move and
make a noise.
Radiotherapy only lasts for a
few minutes, sometimes seconds.
It is important to remain still
and breathe normally. Often
only one or two treatments of
radiotherapy (called fractions)
are needed to relieve the
pain at any particular site and
an improvement is normally
noticeable within days.
What pain is involved with
radiotherapy?
Like having an X-ray taken,
radiotherapy is a painless
procedure. However, you will
be asked to lie in a particular
position depending where the
radiotherapy is being applied to
your body. This may cause some
discomfort but, as radiotherapy
is a very quick procedure, you
will not be asked to maintain that
position for long.
Although radiotherapy itself is a
painless procedure, it can cause
some mild side-effects and,
therefore, a degree of pain in
some myeloma patients. Some
of the potential side-effects may
include:
■■ Sensitivity of skin – the skin can
become sensitive at the site
of administration (described
as being similar to sunburn).
Excessive washing, friction or
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heat should be avoided and
areas treated with radiotherapy
should not be exposed to
the sun
■■ Sickness, vomiting and
diarrhoea – as described
on page 21
For more information about
radiotherapy see the Radiotherapy
28
If side-effects develop during
or after radiotherapy, it is
important to tell your doctor or
nurse as they can be controlled
with medication. The radiation
does not stay in the body
after treatment so you will not
become radioactive and it is
safe to mix with other people.
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Describing your pain
In order for your doctor or nurse to
treat your pain effectively, it is extremely
important that you are honest about
the level of pain you have and the
impact it is having on your life.
Neither minimising it, because you
don’t want to trouble your doctor, nor
exaggerating it, because you are
worried you won’t be taken seriously,
will help you get the proper pain relief
you need.
You may be asked a range of questions
to try to establish the exact nature of
your pain – this helps to work out which
treatment, or combination of treatments,
is most appropriate for you and also
provides a baseline measure to find
out if the treatments you are prescribed
are working.
Questions you may be asked include:
■■ Where do you feel your pain?
■■ When did it begin?
■■ What does it feel like? Is it sharp/dull/
throbbing/burning?
■■ Does it prevent you from carrying out
your daily activities?
■■ Does anything make your pain better
or worse?
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■■ What have you tried for
pain relief?
■■ Is your pain constant? If not,
how many times a day (or
week) does it occur?
■■ Do you have any other pain
that may not be related to
your myeloma?
Some patients find that keeping
a diary of their pain, over a few
days, helps them to describe it
more accurately and detect any
triggers, or periods of the day
when it is worse.
You may also develop other
symptoms associated with your
pain. These can include nausea,
headaches, dizziness, shortness
of breath, weakness, drowsiness,
increased sweating, constipation
and/or diarrhoea. You should also
discuss any of these symptoms
with your doctor or nurse.
30
You will also be asked how your
pain is affecting you emotionally
as discussed on page 40.
You may be asked to rate your
pain using a pain rating scale.
This is a form with a number of
questions about your pain and
asks you to give your pain a
numerical score (often between
zero to 10 with zero representing
no pain and 10 representing
extreme pain). You can see an
example of one in Appendix 1
on page 49.
Some doctors or nurses will
use this tool or similar ones
(e.g. verbal rating scale or body
diagrams) to help them to better
understand, and therefore
treat, your pain. However, these
techniques are not used by all
doctors or nurses and some rely
on their patients’ self-reporting.
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Treatment of pain
The aim of any pain relieving treatment is to provide
continuous pain relief, whenever possible, with minimal
unwanted side-effects. Myeloma-related pain is often
relieved by treatment of the myeloma itself and a
response to treatment is a major factor in reducing pain
and improving quality of life.
There are many different
treatment options available, and
most hospitals will have access
to a specialist team of doctors,
nurses and other healthcare
professionals who are experts in
pain management. The role of
the specialist pain team - known
as the palliative care team - in
the management of your pain
and symptoms is described on
page 39.
Pain control must be tailored
specifically to you and it must be
reviewed on a regular basis. Not
all pain treatments will work in
every patient, so your doctor will
take a trial-and-error approach
to find one or a combination of
treatments that is effective and
suitable for you.
Some of the most commonly
used treatments for pain
management for myeloma
patients are described below.
Medical treatments
Anti-myeloma treatments
Anti-myeloma treatment (drugs
which kill myeloma cells) is a key
component of pain management
as it is aimed at treating the
myeloma itself, which underlies
most of the causes of pain.
They can be given either in
tablet form (orally) or through
an injection (intravenously) and
there are several different types
of drug used to treat myeloma.
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If your myeloma responds to
your treatment then you might
be able to stop, or at least reduce
the dose of, any pain-killers you
are on.
Pain-killers
You may be prescribed
pain-killers to try to control
your pain. There are many
types of pain-killers available to
treat different types and levels
of pain. It is important that an
individual approach is taken,
so you may be prescribed a
number of different types or
combinations of pain-killers.
They broadly fall into the
following categories:
■■ Pain-killers for mild pain
pain. Also steroids, particularly
dexamethasone, may sometimes
be used to relieve bone pain.
Pain-killers come in different
forms. You may be prescribed
pain-killers in tablet, liquid or
lollipop form, or as patches,
a nasal spray or injections
depending on the type and level
of pain you have.
As with any medication, most
pain-killers will have some
side-effects. These can include
constipation, nausea, loss of
appetite and drowsiness. Most
of these side-effects can be
prevented and/or managed
effectively so it is important to let
your doctor or nurse know if you
experience any side-effects.
■■ Pain-killers for severe pain
The pain-killers that are most
commonly used in myeloma
are listed in Table 1.
Additional drugs that are not
normally used as pain-killers
may also be helpful in certain
circumstances, e.g. amitriptyline,
carbamazepine or gabapentin
may help relieve neuropathic
The over-the-counter nonsteroidal anti-inflammatory
group of pain-killers (e.g.
ibuprofen) are not recommended
for use in myeloma as they can
worsen kidney damage.
■■ Pain-killers for moderate pain
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Table 1: Pain-killers commonly used for the treatment of pain in myeloma
Class: Simple non-opioid analgesics
Examples
Comments
Paracetamol – usually given
as tablets/capsules
Useful in mild to moderate pain
Class: Weak opioids (natural and synthetic)
Examples
Comments
Co-codamol, codeine,
dihydrocodeine, low-dose
tramadol – usually given as
tablets/capsules
Provide effective pain relief for
moderate pain
Low-dose buprenorphine –
given as ‘BuTrans’ patches
Confusion and drowsiness may
be experienced initially; can cause
constipation; can cause nausea/
vomiting; caution required in those
with kidney damage
Class: Strong opioids (natural)
Examples
Comments
Morphine – given as
liquid or tablets; can
be converted to ‘slow
release’ preparations when
daily requirements are
established
Provide effective pain relief for
moderate to severe pain
Diamorphine – usually given Similar side-effects to buprenorphine
by injection
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Table 1 continued: Pain-killers commonly used for the treatment of pain in myeloma
Class: Strong opioids (synthetic)
Examples
Comments
Oxycodone – given as liquid or
tablets/capsules
Provide effective pain relief
for moderate to severe pain; can
be used as an alternative
to morphine
High-dose tramadol – given
as tablets, liquid or slow
release tablets
Fentanyl – given as slow release
patches, tablets, lozenges or as
a nasal spray
Similar side-effects to
buprenorphine
High-dose buprenorphine –
given as ‘Transtec’ patches
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As there is such a wide range
of pain-killers available, it is
important to find the one(s)
that work best for you. This may
require a trial and error approach
as no two patients are alike
and the pain they have may be
different. It is usual to start with a
low-dose or a mild pain-killer first
and increase to an optimum dose
before a different or stronger
type is given.
Pain-killers, like other treatments,
can cause side-effects and
these may differ from patient
to patient. It is important that
you inform your doctor or nurse
if you have any side-effects
with your pain-killers even if the
treatment is reducing your pain.
It may be possible to reduce
the dose or try an alternative
treatment which will maintain
the same (or better) level of pain
control without the side-effects.
Bisphosphonates
Bisphosphonates are a specific
group of drugs that help to
protect and strengthen bones
and therefore minimise the
extent of, or prevent, bone
damage.
As well as reducing the likelihood
of pathological fractures,
bisphosphonates are also very
effective in relieving bone pain
and reducing the need for strong
pain-killers.
Bisphosphonate treatment is
recommended for myeloma
patients requiring treatment,
whether or not myeloma
bone disease is evident. The
bisphosphonates that are most
commonly used in myeloma are:
zoledronic acid (formerly known
as Zometa®); Aredia® (disodium
pamidronate) and Bonefos®
(sodium clodronate).
A recent clinical trial showed that
zoledronic acid not only reduced
the extent of myeloma bone
disease, but improved survival
in newly diagnosed patients,
demonstrating that it has
anti-myeloma benefits over
and above its effects on
bone. National guidelines now
recommend zoledronic acid as
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the bisphosphonate of choice for
all patients with active myeloma.
Radiotherapy
Targeted radiotherapy can be
helpful for patients with localised
severe bone pain. Radiotherapy
kills off the myeloma cells, which
in turn reduces bone pain.
Radiotherapy is also effective
in relieving the pain caused
by a deposit of myeloma cells
pressing on the spinal cord, often
known as malignant spinal cord
compression. Usually, the first
sign of spinal cord compression
is unexplained back pain which
gradually gets worse. The pain
may feel like a tight band around
the chest or abdomen and can
radiate down to the buttocks
and legs.
Radiotherapy treatment should
be started as soon as possible
after spinal cord compression
is diagnosed. This is to prevent
permanent damage to the spinal
cord, which can result in paralysis.
36
Surgical procedures
Two surgical procedures that
treat vertebral fractures, known
as Percutaneous Vertebroplasty
and Balloon Kyphoplasty, offer
considerable back pain relief
as well as strengthening the
vertebrae.
Although slightly different to each
other, both procedures involve
minimally invasive surgery to
repair and stabilise the fractured
vertebra by injection of surgical
cement directly into the vertebra.
These procedures are not suitable
for all patients. Doctors select
patients very carefully, taking
into consideration the location
of the pain, the type of vertebral
fracture and the time elapsed
since the fracture occurred. You
will not be considered if you
do not have adequate white
blood cell counts or if you are
prone to bleeding. Usually, more
conventional treatments for your
back pain will be tried first.
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Anti-emetics
Anti-emetics are drugs that are
used to prevent or reduce nausea
and vomiting. They can be used
to treat nausea and vomiting
caused by chemotherapy.
Although physically being sick is
not usually painful, the symptoms
associated with sickness, such
as stomach cramps, can be.
Anti-emetics can therefore help
to reduce any pain that may be
caused by vomiting.
Non-medical treatments
There are also many non-medical
treatments which can be used
instead of, or alongside, medical
treatments to help treat or relieve
your pain. Some of the most
common ones include:
TENS machine
Transcutaneous electrical nerve
stimulator (TENS) machines
deliver small electrical pulses to
the body via electrodes placed
on the skin. TENS machines are
thought to stimulate the nerves
reaching the brain to signal
to the body to release its own
pain-killers, hormones called
endorphins. TENS machines
are sometimes available from
your physiotherapist and large
chemists usually stock them.
Acupuncture
Acupuncture is part of
traditional Chinese medicine
and practitioners believe that
they can use the balance of the
body’s own life force to restore
wellbeing. Acupuncture needles
are applied to areas where this
flow is believed to have been
blocked in order to restore
balance and health.
Acupuncture is used by many
people to relieve pain but you
should keep in mind that you
may be more prone to infection
due to your myeloma, or your
treatments, and you should
always inform your doctor or
nurse about any complementary
therapies that you are
considering.
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Gentle massage
Relaxation techniques
Gentle massage can be used
to relieve muscle pain and
tension and can be both
therapeutic and relaxing.
Remember to tell the massage
therapist that you have myeloma
and that forceful massage
could damage your bones.
Meditation, visualisation,
relaxation or a combination
of these can be helpful in
relieving pain.
Hot and cold compression packs
Hot water bottles and ice packs
can be very effective in providing
short-term pain relief. It is best
not to apply them directly on
your skin, and you may need
to alternate between hot and
cold packs.
38
Correct positioning
Often the way that you sit,
or lie down, can affect your
pain. Move to get comfortable,
use supportive cushions or
pillows and ask to be seen by a
physiotherapist for expert advice.
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The palliative care team
It is likely that your doctor or nurse will manage your
pain treatment. However, if your pain persists you may
be referred to a palliative care team.
What does the palliative care
team do?
The palliative care team
can be made up of doctors,
specialist nurses, psychologists,
physiotherapists and
occupational therapists – the
exact members of the team may
differ from hospital to hospital.
They provide specialist care in
symptom control and can give
advice and care for patients
either at the hospital or in
the home.
The palliative care team can
help you to manage your pain
and advise on which treatments
you should be given. They also
provide psychological, social and
holistic support for both you and
your family.
There is a misconception that
the palliative care team are there
purely to provide end of life care.
This is one aspect of their role,
but they also provide specialist
care in pain management and
symptom control for patients
at all stages of their cancer or
illness. You can be referred to
a palliative care team, by your
doctor, at any time.
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Living with pain
It can be very difficult living with pain and you may
need a lot of help and support. It is important to
remember that the extent of pain you are living with
may not always be obvious to family, friends, doctors
and nurses. In order for them to know that you are in
pain, you have to tell them.
Your doctor or nurse will try to
reduce your pain by medical,
non-medical or surgical
interventions but there are also
some things that you can do
yourself to try to get control of
your pain and to cope with it.
Some self-help tips and strategies
are listed below:
Ask for help when needed
Do not be afraid to ask for help
from those around you; most
family members and friends are
glad to be able to offer some
assistance. If you think you need
help around the home, speak
to your doctor or nurse – they
will be able to arrange for an
occupational therapist to assess
you. It may be possible for you
to have aids fitted around your
40
home (e.g. bath or shower seat)
to make day-to-day living easier.
Take pain-killers regularly as
prescribed
Try to stick to the regimen that
has been prescribed for you and
do not wait until you are in pain
before taking your pain-killers as
they will not be as effective. If you
find that your pain-killers are not
effective, go back to your doctor
or nurse and try something else.
Distraction therapy
Some patients find that watching
TV, listening to the radio or
engaging in a hobby can help to
take their mind off the pain for a
short while.
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Achieving a balance between
regular rest and activity
Try to have some structure
to your day whilst avoiding
overtiring yourself. Moderate
gentle exercise (e.g. walking or
swimming) can help strengthen
your muscles and support your
bones. It will also take your mind
off your pain and can help lift
your mood.
Talking about your feelings
Anxiety and stress can aggravate
pain, so try to talk about your
worries or concerns with people
who are close to you or with your
doctor. If you would like to speak
to a trained counsellor, your GP
or hospital should be able to
organise this for you.
Being honest with your doctor
or nurse
Be honest about any pain that
you have, especially any new
sites of pain or if it is increasing in
intensity. Remember your doctor
and nurse are there to help you.
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Future directions
As research continues to provide a clearer
understanding of the complex nature of myeloma,
it may be possible to find treatments
that can disrupt the mechanisms
involved in its onset and progression.
This in turn may provide better ways of
improving or preventing myeloma complications
such as bone disease and therefore pain,
as well as reducing myeloma cell growth.
Research is also ongoing to increase
the understanding of how pain
happens and to develop better
pain treatments including ways
of preventing pain signals from
amplifying or stopping
them altogether.
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Medical terms explained
Amitriptyline: A type of
anti-depressant drug that can be
used to treat neuropathic pain.
of the immune system to destroy
and remove them, thereby
helping to fight infection.
Anaemia: A decrease in the
normal number of red blood cells,
or the haemoglobin that they
contain, causing shortness of
breath, weakness and tiredness.
Balloon Kyphoplasty:
A procedure used to repair/
stabilise a compression fracture
in one or more vertebrae and
to relieve pain. It is a similar
procedure to percutaneous
vertebroplasty but in addition to
stabilising the fracture, aims to
reshape and restore the height of
the damaged vertebra. It involves
an inflatable balloon tamp being
inserted in the vertebrae and
inflated to create a space. The
tamp is removed and the space is
filled with bone cement.
Anaesthetic: A type of drug used
to temporarily reduce or take
away sensation so that otherwise
painful procedures or surgery
can be performed. A general
anaesthetic makes the patient
unconscious and therefore
unaware of what is happening.
A local anaesthetic numbs the
part of the body that would
otherwise feel pain.
Antibodies (immunoglobulins):
Also known as immunoglobulins,
antibodies are proteins found in
the blood which are produced
by cells of the immune system,
called plasma cells. Their function
is to bind to substances in the
body that are recognised as
foreign such as bacteria and
viruses. They enable other cells
Bone marrow: The soft, spongy
tissue in the centre of bones that
produces white blood cells, red
blood cells and platelets.
Bortezomib (Velcade®): A type
of drug called a proteasome
inhibitor.
Carbamazepine: A type of
anti-epileptic drug that can be
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Catheter: A tube that is placed
in a blood vessel to provide a
pathway for drugs or nutrients.
Gabapentin: A type of
anti-epileptic drug that can be
Central nervous system: Consists
of the nerves in the brain and the
spinal cord.
Gastrointestinal: Refers
collectively to the stomach,
small and large intestine.
Chemotherapy: Treatment with
potent drugs intended to kill
cancer cells. Chemotherapy
drugs can be injected into a vein
(intravenous or IV) or swallowed
as tablets (orally).
High-dose therapy:
High-dose chemotherapy
given intravenously, usually
via a HICKMAN® or PICC line,
prior to patients receiving
healthy stem cells as part of the
transplantation procedure.
Dexamethasone: A type of drug
called a steroid. Often given
alongside other drugs in the
treatment of myeloma.
Endorphins: Chemicals produced
by the body that serve to
suppress pain.
Fatigue: A feeling of being
exceptionally tired, lethargic or
exhausted all or most of the time.
It does not result from activity or
exertion and is not relieved by
rest or sleep.
44
Hypercalcaemia: A higher than
normal level of calcium in the
blood, which may cause loss of
appetite, nausea, thirst, fatigue,
muscle weakness, restlessness
and confusion. Often associated
with reduced kidney function
since calcium can be toxic to the
kidneys.
Immune system: The complex
group of cells and organs
that protect the body against
infection and disease.
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Immunoglobulins (antibodies):
Also known as antibodies,
immunoglobulins are proteins
found in the blood which are
produced by cells of the immune
system, called plasma cells. Their
function is to bind to substances
in the body that are recognised
as foreign such as bacteria and
viruses. They enable other cells
of the immune system to destroy
and remove them, thereby
helping to fight infection.
Kyphosis: An abnormal curvature
of the spine.
Leukopenia: A reduced level of
white blood cell. White blood
cells are important for fighting
bacterial infection.
Lytic lesions: A damaged area of
a bone that shows up as a dark
spot on an X-ray. Lytic lesions
look like holes in the bone and
are evidence that the bone is
being weakened.
Maintenance treatment:
Treatment given over an
extended period of time, often
at a lower dose, after the main
standard dose of treatment has
finished. Maintenance treatment
aims to reduce the risk of disease
progression.
Malignant spinal cord
compression: Occurs when the
spinal cord is being compressed
by a tumour.
Malignant: Cancerous cells which
have the ability to invade and
destroy tissue.
Neutropenia: A reduced level
of neutrophils, a type of white
blood cell important for fighting
bacterial infection.
Non-steroidal anti-inflammatory
drug (NSAID): Drugs used to
prevent or treat pain which do
not contain steroids.
Oral thrush: An infection of yeast
fungus in the lining of the mouth.
Infoline: 0800 980 3332
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Osteopenia: Thinning or
weakening of the bone.
Paraprotein: An abnormal
antibody (immunoglobulin)
produced in myeloma.
Measurements of paraprotein
in the blood can be used to
diagnose and monitor the
disease.
Pathological fracture: A break in
a bone caused by bone disease
or bone cancer, rather than solely
due to trauma.
Pelvic bone: The bones which
connect the trunk and the legs.
Percutaneous Vertebroplasty:
A procedure used to repair/
stabilise a compression fracture
in one or more vertebrae and to
relieve pain. It involves injecting
bone cement into the vertebra to
stabilise and strengthen it.
Peripheral nervous system:
Consists of the nerves outside
the brain and spinal cord.
46
Peripheral neuropathy: Damage
to the nerves that make up
the peripheral nervous system
causing pain, tingling and altered
sensation.
Physiotherapist: A healthcare
professional who treats patients
with physical difficulties resulting
from injury, illness, disability or
ageing. They work with patients
to identify and improve their
movement and function.
Plasma cells: Specialised
white blood cells that produce
antibodies (immunoglobulins) to
fight infection.
Platelets: Small blood cells which
are involved in blood clotting.
Post-herpetic neuralgia: Nerve
pain which persists in patients
who have had shingles, after the
shingles rash has disappeared.
Quality of life: A term that refers
to a person’s level of comfort,
enjoyment, and ability to pursue
daily activities. It is a measure of
an overall sense of wellbeing.
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Red blood cells: Blood cells
which transport oxygen around
the body.
Relapse: The point where disease
returns or becomes more active
after a period of remission or
plateau (often referred to as
stable disease).
Sedative: A type of drug which
has a calming effect to help
reduce or relieve anxiety, stress
or excitement, and is often used
to induce sleep.
Shingles: An infection of a
nerve area caused by the same
virus which causes chickenpox.
Symptoms include painful skin
rash. Shingles tends to affect
adults with a weakened immune
system, who have previously had
chickenpox.
Side-effects: The undesired
effects caused by a drug or
treatment, for example fatigue
or nausea.
Stem cell transplantation:
The infusion of healthy stem
cells into the body. This allows
the bone marrow to recover and
renew its blood-forming capacity
following the administration of
high-dose chemotherapy.
Stem cells: The cells from which
all blood cells develop. Stem
cells give rise to red blood cells,
white blood cells and platelets.
Stem cells are normally located
in the bone marrow and can be
harvested from the blood for
transplant.
Steroid: A group of hormonal
substances produced by the
body. They are also produced
synthetically and used to treat
many conditions.
Subjective: Particular to a given
person; personal.
Thalidomide: A type of
immunomodulatory drug. The
drug was originally withdrawn
in the 1960s because of birth
defects caused when it was
used as a treatment for morning
sickness in pregnancy. Its use
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in myeloma is subject to a strict
risk management programme.
This also applies to the other
immunomodulatory drugs used
in myeloma such as Revlimid and
Imnovid.
Velcade® (bortezomib): A type
of drug called a proteasome
inhibitor.
48
Vertebra: A bone which forms
part of the spine.
White blood cells: Blood cells
involved in the body’s immune
system, which help to fight
infection.
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Appendix 1
Example pain rating scale from the British Pain Society.
Please mark the scale below to show how intense your pain is.
0 = means no pain and 10 = means extreme pain.
How intense is your pain now?
0
1
2
3
4
5
6
7
8
no pain
9
10
extreme pain
How intense was your pain on average last week?
0
1
2
3
4
5
6
7
8
no pain
9
10
extreme pain
Now please use the same method to describe how distressing
your pain is.
How distressing is your pain now?
0
1
2
3
4
5
6
not at all distressing
7
8
9
10
extremely distressing
How distressing was your pain on average last week?
0
1
2
3
4
5
6
not at all distressing
7
8
9
10
extremely distressing
Now please use the same method to describe how much your pain
interferes with your normal everyday activities.
0
1
2
3
4
5
6
does not interfere
7
8
9
10
interferes completely
If you have had treatment for your pain, how much has this
relieved (taken away) the pain?
0
1
no relief
2
3
4
5
6
7
8
9
10
complete relief
Infoline: 0800 980 3332
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Further information
and useful organisations
United Kingdom
Anthony Nolan
www.anthonynolan.org
0303 303 0303
Anthony Nolan is a charity that matches individuals willing to donate
their bone marrow or blood stem cells to people who need lifesaving
transplants. It also provides information and support for patients and
families who are going through a bone marrow or stem cell transplant.
Blue Badge Scheme
www.gov.uk
England: 0844 463 0213
Northern Ireland: 0300 200 7818
Scotland: 0844 463 0214
Wales: 0844 463 0215
The Blue Badge Scheme provides a national arrangement of on-street
parking concessions enabling people with severe walking difficulties
who travel, either as drivers or passengers, to park close to their
destinations.
British Association for Counselling and Psychotherapy (BACP)
01455 883 300
www.bacp.co.uk
If you are wondering whether counselling is something you should
consider the BACP provide information on what therapies are
available and what they can help with. If you are looking for a therapist
you can search the register on their website.
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British Red Cross
www.redcross.org.uk
0844 871 11 11
Volunteers assist with a range of local services – including care in the
home, transport and loans of mobility equipment – to help those with
health issues lead a full and independent life.
Cancer Black Care
www.cancerblackcare.org.uk
020 8961 4151
Cancer Black Care provides a comprehensive support service to ALL
members of the community who are affected by cancer, including
advice on what financial support is available and advocacy.
Cancer Focus Northern Ireland
www.cancerfocusni.org
0800 783 3339
Cancer Focus Northern Ireland’s Living Well services provide one to
one and group support for people with a cancer diagnosis and their
family members. It’s a range of therapies and activities that you can
tailor to meet your needs at each stage in your experience of cancer.
Cancer Research UK
www.cancerresearchuk.org
0808 800 4040
Cancer Research UK provides a free information service about cancer
and cancer care for patients and their families.
Infoline: 0800 980 3332
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Carer’s Allowance Unit
0345 608 4321
General information about the carer’s allowance, and assistance with
filling in the application form.
Carers Trust
www.carers.org
0844 800 4361
The Carers Trust works to improve support, services and recognition
for anyone living with the challenges of caring, unpaid, for a family
member or friend who is ill, frail, disabled or has mental health or
addiction problems.
Carers UK
www.carersuk.org
0808 808 7777
Carers UK provides advice, information and support for carers. It
produces a directory of national and local carer organisations and can
show you where to get help in your area.
Citizens Advice Bureau (CAB)
www.citizensadvice.org.uk
England: 03444 111 444
Wales: 03444 77 20 20
Scotland and Northern Ireland: call your local Bureau
Citizens Advice Bureau offers advice about debt and consumer
issues, benefits, housing, legal matters and employment. It provides
assistance with claiming welfare benefits, including practical help
with filling out benefit application forms. Check your local telephone
directory for details of your nearest branch.
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Cruse Bereavement Care
www.cruse.org.uk
0844 477 9400
Cruse Bereavement Care exists to promote the wellbeing of bereaved
people and to enable anyone bereaved to understand their grief
and cope with their loss. The organisation provides face-to-face and
telephone support, counselling and information.
Depression Alliance
www.depressionalliance.org
0845 123 2320
(Information pack request line only; Monday – Thursday, Friday, 10am
– 2pm) Provides information, support and understanding for those
affected by depression and coordinates a network of self-help groups
throughout England. Depression Alliance also produces a wide range
of publications covering various aspects of depression.
Disability Rights UK
www.disabilityrightsuk.org
020 7250 8181
Disability Rights UK produce high quality information, products and
services developed by and for disabled people. They also supply keys
for the National Key Scheme (NKS) which offers disabled people
independent access to locked public toilets around the UK.
electronic Medicines Compendium (eMC)
www.medicines.org.uk
The eMC contains up-to-date, easily accessible information about
medicines licensed for use in the UK. It includes a Medicine Guides
section which has been developed to help you understand your
medicines and to take them safely.
Infoline: 0800 980 3332
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Gov.UK
www. gov.uk
A government website which provides information about a wide range
of public services including benefits such as Attendance Allowance,
Personal Independence Payments and Carer’s Allowance. You will
find phone numbers listed to discuss the different benefits that are
available.
Help with Health Costs
www.nhs.uk/Healthcosts
0300 330 1343
Help with Health Costs gives information about prescription charges
and getting help with health costs, such as travelling to appointments,
in England and Wales.
Hospice UK
www.hospiceuk.org
020 7520 8200 (Monday – Friday, 9am – 5pm)
Hospice UK supports the development of hospice care in the UK.
They have a register of hospices on their website that you can search
to find one near you.
Institute for Complementary and Natural Medicine (ICNM)
0207 922 7980
www.icnm.org.uk
The ICNM keeps a register of complementary therapy practitioners,
which you can search on their website to find one near you.
Leukaemia CARE
www.leukaemiacare.org.uk
0800 169 66 80 (24 hours a day, 7 days a week)
Leukaemia CARE exists to provide care and support to all those
whose lives have been affected by blood cancers like leukaemia,
lymphoma and myeloma.
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Leukaemia & Lymphoma Research
020 7504 2200
www.leukaemialymphomaresearch.org.uk
Leukaemia & Lymphoma Research funds research into leukaemia and
related blood disorders including lymphoma and myeloma. It also
provides free patient information booklets on blood cancers and the
related disorders.
Macmillan Cancer Support
www.macmillan.org.uk
0808 808 0000
If you are deaf or hard of hearing you can use the textphone service
on 0808 808 0121.
Marie Curie Cancer Care
www.mariecurie.org.uk
0800 634 4520
Marie Curie provides specialist palliative nurses to care for people
in their own homes and also has Marie Curie Centres providing free
respite and hospice care throughout the UK. Your District Nurse can
arrange for a Marie Curie nurse to support you.
MedicAlert®www.medicalert.org.uk
01908 951 045
MedicAlert is a non-profit charity that provides ID bracelets, necklaces
and watches help make sure that you receive fast, relevant treatment
in an emergency.
National Debtline
www.nationaldebtline.org
0808 808 4000
Offers free, confidential and independent advice on how to deal with
debt problems in England, Wales or Scotland.
Infoline: 0800 980 3332
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National Institute for Health and Care Excellence
www.nice.org.uk
0300 323 0140
NICE is an independent organisation responsible for providing
guidance on promoting good health and preventing and treating ill
health in England. NICE produces guidance on health technologies
(the use of new and existing medicines, treatments and procedures)
and clinical practice (guidance on the appropriate treatment and care
of people with specific diseases) within the NHS.
National Kidney Federation
www.kidney.org.uk
0845 6010 209
The National Kidney Federation provides information about kidney
disease and dialysis, and promotes best practice in renal medicine.
NHS Blood and Transplant
www.blood.co.uk
0300 123 23 23
Provides patient information on blood transfusions, including the
benefits and risks of the procedure.
NHS 111 Service
www.nhs.uk/111
NHS 111 is staffed by a team of fully trained advisors, supported by
experienced nurses and paramedics. You can call 111 when you need
medical advice fast but it’s not a 999 emergency. NHS 111 is available
24 hours a day, 365 days a year. Calls are free from landlines and
mobiles.
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NHS Choices
www.nhs.uk
NHS Choices is the UK’s biggest health website. It provides a
comprehensive health information service from the National Health
Service on conditions, treatments, local services in England and
healthy living.
OvercomeDepressionwww.overcomedepression.co.uk
OvercomeDepression aims to offer a unique reference point for
information and practical advice on depression.
Pain Association Scotland
www.painassociation.com
0800 783 6059
Pain Association Scotland offers support to people with chronic pain
and organises pain management support groups across Scotland.
Pain Concern
www.painconcern.org.uk
0300 123 0789
Pain Concern provides a range of information about self-help
and managing pain. Its helpline offers information, support and
a listening ear.
Patient Advice Liaison Services (PALS)
These are available in England to provide patients and their families
with information regarding health related enquiries, NHS services and
other support available. They can provide information about the NHS
complaints procedure and how to get independent help if you decide
you may want to make a complaint. You will be able to find your local
service through your hospital, or by searching on the NHS Choices
website www.nhs.uk.
Infoline: 0800 980 3332
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Penny Brohn Cancer Care
www.pennybrohncancercare.org
(formerly Bristol Cancer Help Centre)
0845 123 2310
Based in Bristol, Penny Brohn Cancer Care offers specialist support
including complementary therapies, nutritional advice and counselling for
people affected by cancer. Its helpline provides emotional support and
information about complementary therapists and services in your area.
Relatewww.relate.org.uk
0300 100 1234
Relate offers a confidential counselling service for couples or
individuals experiencing difficulties in their relationship. Relate
provides support face-to-face, by phone and through its website.
Samaritanswww.samaritans.org
08457 90 90 90 (24 hours a day, 7 days a week)
Samaritans provides confidential non-judgemental emotional support,
24 hours a day for people who are experiencing feelings of distress or
despair. It offers services by telephone, email, letter and face to face.
Scopewww.scope.org.uk
0808 800 3333
Scope provide support, information and advice to disabled people
and their families, including advice on benefits, equipment, therapies
and respite.
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SSAFA (Soldiers, Sailors, Airmen and Families Association)
0800 731 4880
www.ssafa.org.uk
A national charity committed to supporting those who serve or have
served (even for just one day) in our Armed Forces. It offers a helpline
service, Forcesline, and practical support.
Tenovus Cancer Care
www.tenovuscancercare.org.uk
0808 808 1010
Tenovus is a charity committed to the control of cancer through
research, education, counselling and patient care. Its helpline offers
information and support to those affected by cancer.
The Money Advice Service
www.moneyadviceservice.org.uk
0300 500 5000
The Money Advice Service is a free and impartial service, set up by the
government. It includes advice on insurance, benefits and care and
disability.
The Pensions Advisory Service
www.pensionsadvisoryservice.org.uk
0300 123 1047
Funded by the Department for Work and Pensions, the Pensions
Advisory Service provides free information, advice and guidance for
people with workplace and personal pensions.
Infoline: 0800 980 3332
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UK Myeloma Forum
www.ukmf.org.uk
The UK Myeloma Forum is an organisation of people professionally
engaged in the field of myeloma who are working to improve the
outlook for patients with myeloma and related disorders. On behalf
of the British Committee for Standards in Haematology, UKMF has
produced guidelines on the diagnosis, treatment and management of
myeloma.
Unbiased.co.ukwww.unbiased.co.uk
0330 100 0755
This is a directory of professional advisers which also, itself, provides
financial, mortgage, legal and accounting information. It is run by an
independent non-profit body.
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Ireland
ACCORDwww.accord.ie
01 505 3112
Caring for marriage and relationships. It is the largest marriage-care
agency in Ireland. ACCORD (formerly known as the Catholic Marriage
Care Service) accepts and values clients irrespective of their religious
or ethnic background.
Association of Registered Complementary Health Therapists of
Ireland
053 938 3734
www.irishtherapists.ie
ARCHTI keeps a register of complementary therapy practitioners,
which you can search on their website to find one near you.
The Carers Association
1800 24 07 24
The Carers Association is Ireland’s national voluntary organisation for
and of family carers in the home. They provide advice on a wide range
of issues, including benefits and respite, and run support groups for
carers.
Chronic Pain Ireland
www.chronicpain.ie
01 804 7567
Chronic Pain Ireland provides information and support to those living
with chronic pain, their families and friends.
Infoline: 0800 980 3332
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Citizens Information
www.citizensinformation.ie
0761 07 4000
Citizens Information is provided by the Citizens Information Board, the
statutory body responsible for the provision of information, advice and
advocacy on public and social services.
Irish Cancer Society
www.cancer.ie
1 800 200 700
The Irish Cancer Society provides advice, support and information
to people in Ireland affected by cancer. It also publishes a range of
patient information, including booklets on myeloma.
The Irish Hospice Foundation
www.hospicefoundation.ie
01 679 3188
The Irish Hospice Foundation website includes a directory of hospices
across Ireland.
MyMyelomawww.mymyeloma.ie
Dedicated Irish myeloma website for patients, family members and
those with an interest in myeloma.
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Overseas
Myeloma Patients Europe (MPE)
www.mpeurope.org
MPE was formed following a merger between the European Myeloma
Platform and Myeloma Euronet. It is a non-profit organisation and acts
as an umbrella organisation for existing local and national myeloma
associations and its members come from nearly 30 countries. MPE is
dedicated to raising awareness of myeloma.
Multiple Myeloma Research Foundation (MMRF) www.themmrf.org
00 1 203 6520219
The MMRF is a US-based private funder of worldwide myelomaspecific research. It provides information about myeloma treatments
and international clinical studies.
Infoline: 0800 980 3332
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About Myeloma UK
Myeloma UK is the only organisation in the UK dealing
exclusively with myeloma.
With Myeloma UK you can...
Call our Myeloma Infoline for
practical advice, emotional
support and a listening ear:
UK: 0800 980 3332
Ireland: 1800 937 773
Find your nearest Myeloma
Support Group to meet up and
talk to other people face to face.
Read Myeloma Matters, our quarterly
magazine offers a mix of the latest news in
research and development for myeloma,
and patient and family experiences.
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About Myeloma UK
Learn about myeloma from experts
and meet others at our Patient and
Family Myeloma Infodays.
i
Visit www.myeloma.org.uk, a one-stop-shop
for information on myeloma; from news on the
latest research and drug discovery to articles
on support, treatment and care.
Watch Myeloma TV which hosts
videos about myeloma presented by
experts, patients and family members.
Use the Discussion Forum for the
opportunity to share experiences and
advice about living with myeloma.
Find us on Facebook here
facebook.com/myelomauk
Find us on Twitter here
twitter.com/myelomauk
Infoline: 0800 980 3332
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Information available from Myeloma UK
Our information covers all aspects of myeloma.
For a full publication list visit www.myeloma.org.uk/publications
To fill in a short survey about our patient information online,
please go to www.myeloma.org.uk/pifeedback
Essentials
Gives an overview of myeloma, its treatment
and management. Particularly useful for
newly diagnosed patients and their families.
Treatments
and tests
Provides information about the range of
treatments and tests used in myeloma.
Symptoms and
complications
Information about the most common
symptoms and complications of myeloma
such as myeloma bone disease and fatigue.
Clinical trials
and novel
drugs
Gives information on many of the promising
drugs currently being investigated for the
treatment of myeloma in clinical trials.
Living well
with myeloma
Provides information relating to living well with
myeloma such as diet, managing finances, travel
insurance and caring for someone with myeloma.
Related
conditions
Information on conditions related to myeloma,
including MGUS, plasmacytoma, smouldering
myeloma and AL amyloidosis.
66
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23/11/2015 14:42:36
Other publications
Patient diary
This diary helps patients keep a track of
hospital appointments and key test results
in a practical, simple way.
The small things that make all the difference
Hints and tips written for people affected by
myeloma, by people affected by myeloma.
Children’s book about myeloma
Kelsey and the Yellow Kite tells the story
of how a little girl learns to understand
about her dad’s myeloma.
Myeloma A – Z
A booklet which explains key terms
relating to myeloma.
Our information and publications are free and available
to order by phone. You can also download or read online.
Email: [email protected]
Call 0131 557 3332
www.myeloma.org.uk
Infoline: 0800 980 3332
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We need your help
Thanks to our generous supporters we are able to
provide information and services to patients and their
families, as well as fund vital research that will help
patients live longer and with a better quality of life.
Myeloma UK receives no government funding. We rely on fundraising
activities and donations.
You can support Myeloma UK by:
■■ Making a donation
Online at www.myeloma.org.uk/donate
Over the phone 0131 557 3332
Or by posting a cheque payable to Myeloma UK, 22 Logie Mill,
Beaverbank Business Park, Edinburgh, EH7 4HG
■■ Fundraising – fundraising is a positive way of making a difference
and every pound raised helps. As myeloma is a rare, relatively
unknown cancer, fundraising is also a great way to raise awareness.
However you decide to raise funds, our Fundraising Team is here
to support you. Contact us on 0131 557 3332 or email
[email protected]
■■ Leaving a legacy – gifts from Wills are an important source of
income for Myeloma UK and will help us to continue providing
practical support and advice to myeloma patients and their families.
They also help us to undertake research into the causes of myeloma
and investigate new treatments.
68
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23/11/2015 14:42:42
Nobody ever forgets the moment they are
diagnosed with myeloma. Myeloma UK advances
the discovery of effective treatments, with the
aim of finding a cure. That is what patients want,
it’s what they deserve and it’s what we do.
Judy Dewinter – Chairman, Myeloma UK
Infoline: 0800 980 3332
69
23/11/2015 14:42:43
Notes
70
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23/11/2015 14:42:43
Published by: Myeloma UK
Publication date: July 2011
Last updated: May 2015
Review date: May 2017
Printed date: October 2015
Myeloma UK would like to thank Dr Tom Osborne and Dr Paul Schofield
for their invaluable help and advice in the compilation of this Infoguide.
HICKMAN® Catheter is a registered trade mark of C.R.Bard, Inc
All Myeloma UK publications are extensively reviewed by patients and
healthcare professionals prior to publication.
PI/PIG/2015/11
23/11/2015 14:42:43
Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG
T: 0131 557 3332 E: [email protected] Charity No: SC 026116
Myeloma Infoline: 0800 980 3332 or
1800 937 773 from Ireland
www.myeloma.org.uk
Myeloma Awareness Week 21 - 28 June
23/11/2015 14:42:44

Pain and myeloma

Transcription

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