Pain and myeloma - Myeloma Infoguide Symptoms and complications - Myeloma UK
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Pain and myeloma Myeloma Symptoms Infoguide and Series complications
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 fundraising@myeloma.org.uk Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk
Contents
4 Introduction 41 Living with pain
6 What is myeloma? 43 Future directions
9 reatment for myeloma
T 44 Medical terms explained
- the basics
49 Appendix 1
10 What is pain?
50 F
urther information and
12 Types of pain useful organisations
13 Psychological impact of pain 64 About Myeloma UK
15 Causes of pain in myeloma 66 I nformation available
from Myeloma UK
29 Describing your pain
67 Other publications
31 Treatment of pain
68 We need your help
40 The palliative care team
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.
Infoline: 0800 980 3332 3Introduction
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 Some of the more technical or
is, the different types of pain unusual words appear in bold the
and causes of pain in myeloma first time they are used and are
patients described in the Medical terms
■■ Provide information on the explained section on page 42.
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 www.myeloma.org.ukFor more information
Myeloma UK provides a wide The Myeloma Infoline is open
range of information covering from Monday to Friday, 9am to
all aspects of the treatment and 5pm and is free to phone from
management of myeloma. anywhere in the UK and Ireland.
For a full publication list Information and support about
visit www.myeloma.org.uk/ myeloma is also available around
publications the clock at www.myeloma.org.uk
To order your free copies contact
Myeloma UK. Our information is
also available to download 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.
Infoline: 0800 980 3332 5What 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 form part of the immune system.
Normal plasma cells produce of paraprotein that myeloma is
different types of antibodies diagnosed and monitored.
(also called immunoglobulins) to Bone marrow is the ‘spongy’
help fight infection. In myeloma, material found in the centre of
the plasma cells become the larger bones in the body. As
malignant and release a large well as being home to plasma
amount of a single type of cells, the bone marrow is where
antibody, known as paraprotein, blood cells (red blood cells,
which has no useful function. It is white blood cells and platelets)
often through the measurement are made (see Figure 1).
RED WHITE
BLOOD CELLS BLOOD CELLS
lymphocyte plasma
cell
monocyte
blood
stem cell neutrophil
BONE eosinophil
MARROW
basophil
PLATELETS
Figure 1. Bone marrow – responsible for the production of blood cells
6 www.myeloma.org.ukThese all originate from blood Myeloma most commonly occurs
stem cells. Plasma cells normally in people later in life i.e. over
make up less than 5% of the total the age of 65. However, some
blood cells in the bone marrow. myeloma patients are younger. It
Myeloma affects multiple is also slightly more common in
places in the body (hence why men than in women.
it is sometimes referred to as The causes of myeloma are not
‘multiple myeloma’) where bone fully understood but it is believed
marrow is normally active i.e. to be caused by an interaction of
within the bones of the spine, both genetic and environmental
pelvis, rib cage and the areas factors.
around the shoulders and hips. There are thought to be multiple
The areas usually not affected are environmental factors which may
the extremities – the hands and increase the risk of developing
feet – as the bones here do not myeloma. Exposure to specific
contain bone marrow. chemicals, radiation, viruses and
Most of the complications and a weakened immune system are
symptoms of myeloma are considered important trigger
caused by a build-up of the factors.
abnormal plasma cells (often It is likely that myeloma develops
called myeloma cells) in the bone when a susceptible (at risk)
marrow and the presence of individual has been exposed to
paraprotein in the body. one or probably several of these
Common problems include bone factors.
pain, bone fractures, tiredness There is a slight tendency for
due to anaemia, frequent or myeloma to occur in families.
recurrent infections (such as Although rare, this suggests
chest infections, urinary tract there may be inherited factors
infections and shingles), kidney in myeloma. This alone is not
damage and hypercalcaemia. enough to cause myeloma but
Infoline: 0800 980 3332 7may make an individual at a Basic facts
slightly higher risk of developing ■■ There are approximately
myeloma - other environmental 5,500 people diagnosed with
factors also need to have an myeloma every year in the UK
impact before it develops.
■■ There are approximately 17,500
In the majority of cases, however, people living with myeloma in
the causes of myeloma are the UK at any one time
unclear and are likely to be
unique to each patient. ■■ Myeloma accounts for 15%
of blood cancers and 2% of
Much research is ongoing into cancers generally
the biology and genetics of
myeloma to determine the ■■ Myeloma mostly affects people
factors responsible for its onset aged 65 and over but it has
and progression. been diagnosed in people as
young as 20
For more information see the
Is myeloma an inherited cancer?
Infosheet from Myeloma UK.
8 www.myeloma.org.ukTreatment for myeloma – the basics
Treatments for myeloma can be very effective at
controlling the disease, reducing symptoms and
improving quality of life. Unfortunately, however,
myeloma is currently incurable. In general, treatment is
given to:
■■ Reduce the levels of myeloma Before starting treatment, each
as far as possible option must be considered
■■ Control the myeloma for as carefully so that the benefits of
long as possible treatment are weighed against
the possible risks of side-effects.
■■ Control the myeloma if it In most patients, overall health,
returns (relapse) age, fitness and any previous
■■ Relieve the symptoms and treatments will be taken into
reduce the complications the account.
myeloma is causing Treatment is usually given over
■■ Improve quality of life a number of weeks which may
■■ Prolong life or may not be followed by a rest
period. This pattern constitutes
Not everyone diagnosed with
one cycle of treatment and
myeloma will need to start
a series of treatment cycles
treatment immediately – the
is referred to as a course of
timing of treatment will depend
treatment.
on a number of factors
including the speed at which Supportive treatments are also
the paraprotein level is rising. commonly prescribed to help
Treatment for myeloma is often prevent or manage potential side-
most effective when two or effects of treatment combinations
more drugs, with different but and also treat the symptoms and
complementary mechanisms of complications of myeloma.
action, are given together.
Infoline: 0800 980 3332 9What is pain?
Pain is the most common symptom of myeloma
affecting up to 80% of patients at some point. It 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 emotional components and may
pain receptors in the nerve explain in part why pain may
endings and is transmitted persist after the body has healed.
from the affected area to the Pain is subjective and is very
brain. The brain then gathers individual. What is bearable in
the information and responds one person may be intolerable in
by telling your body to protect another person, even when the
itself. Therefore, pain is part of cause of the pain is similar. This
a warning system to minimise difference in perception of pain is
potential harm to your body. partly influenced by background
Most pain resolves when the and culture, genetics and gender.
cause of the pain is eliminated As a result, the response to pain
and the body has healed. is very different from person to
However, sometimes pain persists person.
even after the body has healed.
As a common symptom and
While pain is most commonly complication of myeloma, pain
linked to sensations caused by can have a significant impact
an illness, inflammation, surgery on patients quality of life,
or physical injury, it is also linked especially if it is untreated or
to experiences influenced by poorly managed. For many
memories, expectations and myeloma patients, pain can be
emotions. Pain can therefore debilitating and frustrating. It
be caused by both physical and can affect patients physically,
10 www.myeloma.org.ukemotionally and socially and can
cause difficulty in performing
basic activities of daily life and
affect how you cope with other
symptoms and complications of
myeloma. Pain can also have a
significant impact on those closest
to the patient.
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.
Infoline:
Infoline:0800
0800980
9803332
3332 11Types 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 developing a resistance to any
quickly and lasts for a relatively pain-relief treatment or that the
short period of time. Causes of underlying cause of the pain
acute pain include, for example, may be getting worse
a headache which is quickly Pain can also be categorised
resolved with or without based on where it is coming from
treatment, a stubbed toe or a in the body:
cut finger. Generally, acute pain
lasts only as long as it takes for ■■ Somatic or musculo-skeletal
the damage or injury to heal pain – originates from joints,
muscle and bone and is often
■■ Chronic – is pain that does not described as dull and achy
go away, or comes back often
and may exist for months or ■■ Visceral pain – originates in
years. Causes of chronic pain the internal organs but is often
include, for example, arthritis difficult to locate. It is usually
and back pain described as pressure-like,
deep squeezing
■■ Breakthrough – is pain that
is an abrupt, short-lived ■■ Neuropathic pain – is caused
sharp spike of pain which by damage to, or pressure on
overrides persistent chronic the nerves and is described as
pain. Breakthrough pain may sharp, burning or shooting
be a sign that the body is
12 www.myeloma.org.ukPsychological impact of pain
Pain not only affects the body, but it also has a
significant psychological impact and affects how you
feel emotionally. In particular, chronic pain can cause
frustration, anxiety, anger, fear, poor concentration and
sleep deprivation. In turn, these can affect not only how
you cope with pain but affect the level of pain you have
and how you deal with other aspects of life.
Pain that is not treated effectively ■■ If you feel anxious, scared
can therefore lead to a vicious or angry
cycle of increased pain, fatigue ■■ If you often feel down
and anxiety. or depressed
The way pain is assessed is ■■ If you feel like you have the
described in more detail on page support that you need from
29. Some emotional aspects that family and friends
are considered when treating
pain are listed below: Such questions will help
your doctor and/or nurse
When your level of pain is to understand the extent to
assessed, it is likely that your which pain is impacting on you
doctor or nurse will ask you emotionally and provide the most
questions about how you are effective pain treatment plan
feeling generally. They may ask for you.
you specific questions about the
following: Your doctor or nurse should be
happy to explain to you why they
■■ How much sleep you get each are asking specific questions and
night and whether you feel how these questions can help
tired or are fatigued them to better assess and treat
your pain.
Infoline: 0800 980 3332 13If your pain is causing you a
significant emotional impact,
for example is impacting on:
■■ Your relationships with others
■■ How well you are able to cope
with other aspects of your life,
for example managing your
finances and household duties
■■ Your general outlook
Then it may be necessary to
receive some additional support
even if this is just temporary for
example counselling or additional
social support. A pain assessment
should identify any additional
emotional and psychological
support needs you may need.
If you feel this is not being
addressed speak to your doctor
or nurse and they will be able
to help.
14 www.myeloma.org.ukCauses 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
caused by side-effects of treatment.
The type and level of pain can What is myeloma bone disease?
differ vastly from patient to Healthy bone is not static, but it is
patient. It is therefore important in a constant state of remodelling
to explain any pain you have in which allows for minor areas
detail to your doctor or nurse. of damage to be repaired and
This will help them to identify and strengthened while maintaining
treat the cause of your pain as the structure of the skeleton.
effectively as possible. Two types of cells play an
This section describes some of important role in the normal
the most common causes of pain activity of bones. These are:
in myeloma and may help you to ■■ Osteoblasts (cells which form
identify and describe any pain new bone)
that you may have.
■■ Osteoclasts (cells which break
down old bone)
Myeloma bone disease
Normally, the rate of bone
Myeloma bone disease is one
formation and the rate of bone
of the most common and
breakdown are equal, so that the
debilitating features of myeloma.
bone mass remains the same. In
Bone pain is a very common
myeloma, however the myeloma
symptom of bone disease.
cells in the bone marrow affect
Between 70 – 80% of patients
the surrounding bone, causing it
have evidence of myeloma bone
to be broken down faster than it
disease at the time of diagnosis
can be repaired.
and most patients will develop it
at some point.
Infoline: 0800 980 3332 15What causes myeloma bone ■■ Multiple vertebral fractures
disease? can result in the collapse of the
When bone is broken down faster spinal column. This can feel
that it is repaired this can lead to like a dull achy pain, an acute
a number of problems including, agonising localised pain which
thinning of bone (osteopenia) radiates down the ribs and
and the eventual disappearance abdomen, or which radiates
of pockets of bone called lytic around the ribs and abdomen,
lesions. or can be a shooting pain which
travels up and down the leg.
As the vertebrae collapse, a
What causes the pain associated
curve may develop in the back
with myeloma bone disease?
(kyphosis) which can cause
■■ Osteopenia and lytic lesions loss of height. Kyphosis is often
can cause a dull pain which a cause of chronic back pain
may spread over a generalised and mobility difficulties in
area or may be more localised myeloma patients. If the
■■ Bone fractures caused by kyphosis is severe, it may put
compression or thinning instead pressure on other areas of the
of injury or trauma - causes body such as the rib cage and
persistent severe pain which cause chest pains
may be localised or radiate ■■ Destruction of bone raises
below the injury site. If a calcium levels in the blood
fracture occurs in a spinal bone (hypercalcaemia) which
(vertebra), the damaged bone can sometimes cause pain
may press on the spinal cord associated with gastrointestinal
and may cause sharp shooting symptoms such as constipation
pain or numbness in the limbs and vomiting
For more information see the Myeloma
bone disease and bisphosphonates
Infoguide from Myeloma UK.
16 www.myeloma.org.ukPeripheral neuropathy What causes peripheral
Peripheral neuropathy is the neuropathy in myeloma?
term used to describe damage There are a number of potential
to the nerves in the hands, feet, causes of peripheral neuropathy
arms or legs i.e. in the peripheral in myeloma. They include:
nervous system. This can cause ■■ Myeloma treatments, such
numbness, tingling, increased as thalidomide, bortezomib
sensitivity and pain. (Velcade®) and vincristine (a
It is the most common cause of chemotherapy drug) which,
neuropathic pain in myeloma. particularly when given in high
Peripheral neuropathy may be doses and/or for prolonged
caused by the myeloma itself periods of time, can be toxic to
or by some of it’s treatments. nerve cells
Damage to the peripheral ■■ If you have previously received
nervous system interferes with one of these treatments then
the messages being carried you may be at greater risk
between the brain and the of neuropathy recurring with
body. This causes a variety another new treatment
of symptoms such as altered
sensation, tingling, numbness ■■ The paraprotein produced by
or pain. myeloma cells can be deposited
on the nerves and damage
The pain caused by peripheral them. This affects up to 20%
neuropathy is very individual to of patients before treatment
each patient. It is important that
if you develop any (new) pain Factors unrelated to myeloma
and/or sensations, you should such as diabetes, vitamin
make your doctor or nurse aware deficiency and a history of high
as soon as you notice them. alcohol consumption may also
contribute to the symptoms of
peripheral neuropathy.
Infoline: 0800 980 3332 17What kind of pain/sensation ■■ Unusual sensations or an
is associated with peripheral increased sensitivity to touch –
neuropathy? often even the slightest touch
The symptoms of peripheral can cause extreme discomfort.
neuropathy can vary from This is frequently worse during
patient to patient and will depend the night
on which nerves are affected – ■■ Altered sensations – such as
pain may not always be present. a feeling of pain or heat when
In myeloma, the hands and feet touching something cold
are the most commonly affected ■■ Loss of sensation or numbness
areas. – in the hands and/or feet
The pain and sensations ■■ Muscle cramps, weakness and
associated with myeloma and tremors – which can interfere
myeloma treatment-associated with your ability to perform
peripheral neuropathy may everyday tasks
include:
Symptoms of peripheral
■■ Pain in various parts of the neuropathy often start at a
body – this can vary in intensity low level but can increase and
and is often described as become more significant over
‘sharp’, ‘burning’, or ‘jabbing’ time. Therefore, it is extremely
■■ ‘Pins and needles’ in the hands, important that you tell your
arms, feet and legs – you may doctor or nurse as soon as you
notice a tingling sensation develop any of these symptoms.
which can start in your toes or Peripheral neuropathy is often
the balls of your feet and travel more easily and effectively
up your legs. This sensation treated if diagnosed early.
may also start in your fingers
and work its way up your For more information see the Peripheral
hands and arms neuropathy Infosheet from Myeloma UK.
18 www.myeloma.org.ukInfection Some of the drugs used to treat
Infection is a common myeloma such as thalidomide,
complication of myeloma and bortezomib and lenalidomide
therefore infection-related pain (Revlimid®) can also reduce the
can also be common. number of neutrophils (a type
of white blood cell) which plays
a key role in fighting infection.
What causes infection in
A low neutrophil level is called
myeloma patients?
neutropenia, which also puts you
There are many different types at greater risk of infection.
of infection which may be caused
by different types of bacteria, What type of pain is associated
fungi and viruses. Infection is with infection?
something that everyone has
at some point in their lifetime. Infection can occur in any part of
However, as a myeloma patient the body and the pain associated
you are at an increased risk of with it can vary widely. The most
getting an infection because as commonly occurring infections
a myeloma patient you have a and the type of pain associated
lower number of white blood with them include:
cells in your body (leukopenia) ■■ Lung infections – such as
and are at an increased risk of pneumonia, can cause chest
infection. pains. The pain is usually
Myeloma cells crowd out the located on one side of the
healthy blood cells in the bone chest and it is usually sharp
marrow reducing the number and worsens with breathing
of healthy blood cells, including and coughing
white blood cells which play an ■■ Urinary tract infections – can
important role in helping our cause pain when passing
body fight infection. urine, which is felt as a burning
sensation. Infections of this
Infoline: 0800 980 3332 19type can also cause cramping ■■ Gastrointestinal infections – can
or pressure in the lower back cause griping abdominal pains
or abdomen and spasms
■■ Skin infections – caused by
the shingles virus can be very Fatigue
painful on and around the area Fatigue is a condition that
of skin affected by the shingles affects most, if not all, myeloma
rash. The skin becomes very patients at some point and can
sensitive to touch and the be one of the most challenging
pain is usually a constant pain. complications of myeloma.
In addition, there may be
Fatigue is a feeling of extreme
intermittent sharp or stabbing
tiredness, lethargy or exhaustion,
pain which may, in some cases,
experienced all or most of the
continue up to a year after the
time. It is different from the
shingles rash has disappeared.
everyday tiredness that comes
This is often referred to as
with the demands of daily life. It
post-herpetic neuralgia
is an overwhelming exhaustion
■■ Mouth infections – causing that is not relieved by sleep or
mouth ulcers and sores in rest and can affect you physically,
the inner cheek, inner lip, psychologically and emotionally.
tongue, gumline and floor of
the mouth, can cause pain or How does fatigue cause pain?
a burning sensation which is
made worse by eating and Fatigue does not cause pain
drinking. Oral thrush caused directly. However, fatigue can
by a fungal infection can have a negative impact on
also cause an uncomfortable pain. Unfortunately fatigue and
burning sensation in the pain can be linked together
mouth and throat in a vicious cycle if neither is
20 www.myeloma.org.ukaddressed properly. For example, is very unpleasant, the physical
it can be difficult to sleep if you act of vomiting is not usually
are in pain and a lack of sleep painful. However, sickness and
can be a contributing factor of vomiting are often associated
fatigue. This can cause the pain with stomach cramps which
you have to feel worse and make can be very painful
it harder to bear. ■■ Diarrhoea and constipation
Studies have shown that the level – both conditions can cause
of fatigue a patient has correlates bloating, discomfort and
with the level of pain they have. stomach cramps
The management of fatigue is ■■ Sore mouth and throat –
therefore, an important factor to some myeloma treatments,
consider in the treatment of pain such as high-dose melphalan
which is given as part of high-
For more information see the Fatigue dose therapy and stem cell
Infoguide from Myeloma UK. transplantation (HDT-SCT).
It can cause the inside of the
mouth to blister (known as
Side-effects of anti-myeloma mucositis) and increase the risk
treatments of getting mouth infections.
■■ Treatments that kill myeloma ■■ Your mouth and throat may
cells also often damage also become sore and eating,
normal healthy cells, causing drinking and swallowing may
unpleasant side-effects. become difficult for a while.
Although some of these If eating and drinking are
side-effects don’t necessarily problematic, you may need
directly cause pain, they can intravenous fluids and/or
be unpleasant and associated nutrition until you are able to
with pain, such as: sickness and resume eating and drinking
vomiting – although being sick normally
Infoline: 0800 980 3332 21■■ Peripheral neuropathy – many below, where you will also find
drugs used to treat myeloma a description of the type of pain
may cause this painful you may experience.
condition as described on Not every patient will have all of
page 17. the listed procedures and it is
Most side-effects are short- term, important to remember that, as
and can be avoided, managed pain is subjective and depends
well and usually resolve once on many factors, you may
treatment is finished. experience more or less pain than
is described here.
Pain due to tests, investigations
and procedures Blood tests
Myeloma patients undergo Throughout your treatment,
many tests, investigations and you will have regular blood
procedures. Tests that you samples taken. Blood samples
receive on a regular basis such are important in monitoring your
as blood tests should not usually myeloma and your paraprotein
cause pain, however they can be levels as well as your liver and
a little bit uncomfortable. The kidney function. Blood for such
sensation is often described as tests are usually taken from a
a sharp scratch. However, some vein in the arm or the back of
of the procedures carried out the hand.
during diagnosis and and as part
of your monitoring during and What type of pain is involved
after treatment and at relapse. with a blood test?
can be painful.
Generally, blood tests involve a
The tests and treatment momentary sharp sensation as
procedures that may cause some the needle is placed into the vein
degree of pain are described but the procedure itself should
22 www.myeloma.org.uknot be painful. You may have a Hickman® line
bruise from the area where the You may have a catheter inserted
blood was taken for a couple of into a central vein for a period of
days after the test. The bruise time especially if you are having
may be painful if pressure is your treatment by infusion, for
applied to it. instance when you have high-
Blood tests are usually only dose therapy before stem cell
painful if it is difficult to find transplantation.
a vein from which a sample The most common type of
can be taken. Under these catheter used is called a Hickman
circumstances, several attempts line. This is a tube which is placed
may be needed to obtain a into one of your large veins,
blood sample. allowing all of your treatment
drips/infusions to be given
without inserting a new line into
your veins at each visit.
collar bone
point where
central line heart
enters body
connections for
drips or syringes
Figure 2. Insertion of a Hickman line
Infoline: 0800 980 3332 23The Hickman line also allows What pain is involved with a
blood samples to be taken Hickman line?
without the need for repeated Although it may be
needle insertions. The procedure uncomfortable, the insertion of
for inserting the Hickman line and your Hickman line should not be
the possible pain associated with too painful. After the procedure
it is described below. the area may feel sore and tender
and your doctor or nurse will
How is a Hickman line inserted? be able to provide treatment to
Your Hickman line is inserted into reduce the pain. Any tenderness
one of your large veins through or discomfort should disappear
a small cut in your upper chest within 24 hours.
(see Figure 2). Before this, you The most common cause of
will be given an injection of local pain associated with a Hickman
anaesthetic into the skin to line after it has been inserted,
numb the area around your collar is from infection. It is important
bone and chest. This can cause to keep your Hickman line clean
some stinging initially and then and dry and your doctor or nurse
numbness. will teach you how to do so to
The line is placed under your prevent infection. If you have any
skin from the chest to the neck redness or swelling around the
and, once in the neck, is passed catheter, notice any pus at the
into a large vein. The part of the insertion site or if you experience
catheter outside your body is any pain, you should tell your
stitched or taped to the chest doctor or nurse immediately.
and dressed to ensure it does Once the infection has been
not come out and that it remains treated, there should not be any
clean and dry. The procedure ongoing pain or discomfort.
usually lasts between 30 – 60
minutes, but occasionally may
take longer.
24 www.myeloma.org.ukBone marrow tests Both an aspirate and a biopsy are
There are two types of bone usually carried out at diagnosis
marrow tests you may need to for most patients .
have. They involve either the
removal of some liquid bone How is the bone marrow
marrow (bone marrow aspiration) collected?
by suction into a syringe or the Bone marrow samples are usually
removal of a 1 – 2 cm core of taken from the pelvic bone (see
bone marrow tissue in one piece Figure 3) that you can feel just
(bone marrow biopsy). below the waist. Occasionally,
The aspirate is looking at the other large bones such as the
percentage of myeloma cells breastbone (sternum) may be
present in the bone marrow. The used for bone marrow aspiration.
biopsy is looking at whether the You will be given a local
bone marrow tissue has been anaesthetic into the skin and
infiltrated by the myeloma cells. tissue just over the bone.
bone
bone marrow
biopsy needle
skin
Figure 3 – Bone marrow sample being taken from the pelvic bone
Infoline: 0800 980 3332 25This may cause some stinging likely that you will be asked to lie
initially and then numbness. You on your front or side. If you have
may also be given a mild sedative bone pain due to myeloma bone
or a general anaesthetic if you disease lying still in a particular
request one or if a large sample position while the procedure is
is required. carried out may be painful. Let
A needle is inserted through the doctor or nurse know if this
the skin and into the bone. The is painful for you and they may
needle used for a bone marrow be able to suggest an alternative
aspiration is thin whereas the one position.
used for a bone marrow biopsy The procedure itself can cause a
is thicker. A syringe is attached dull aching pain but it doesn’t last
to the needle to help draw up the long. You may also feel a pulling
bone marrow sample. sensation when the sample
If you are having both tests done is taken. Some patients may
at the same time, the aspirate will experience a sudden sharp pain
be collected first. For the bone at this point.
marrow biopsy, the thicker needle After the test, your pelvic area
is inserted and rotated to capture may ache but this normally
a core of bone marrow. Once the subsides after a couple of days.
needle is removed, a pressure Any pain can normally be relieved
bandage is applied to prevent by over-the-counter paracetamol
bleeding. Both procedures if or by applying a cold compress
done together, one after the to the biopsy site. Light exercise
other, last only a few minutes. such as walking can also help to
relieve the pain.
What pain is involved with a It is now recommended that
bone marrow biopsy? healthcare professionals should
A bone marrow biopsy can be use only one bone marrow
painful. During the procedure it is biopsy so that different tests can
26 www.myeloma.org.ukbe done from a single sample What does radiotherapy involve?
without the need for several Radiotherapy treatment
samples which can be painful and requires specialist staff and
uncomfortable. equipment and is carried out in
the radiotherapy department of
Radiotherapy larger hospitals. This means that
Radiotherapy is the use of it is sometimes necessary to
high-energy radiation (usually travel to another hospital for
X-rays) to kill cancer cells. It works treatment. Normally, you will
by targeting cells that are dividing receive radiotherapy treatment
rapidly (such as myeloma cells) as an outpatient, unless you
and damaging them so they are already in hospital for other
cannot reproduce and grow. treatment.
Radiotherapy is given using a
Why is radiotherapy used large machine positioned exactly
in myeloma? over the area of the body to be
Radiotherapy may be used treated. Receiving radiotherapy
to kill myeloma cells and to is very similar to having an X-ray.
relieve pain in localised areas The radiation beam is invisible but
where there is damage caused the machine may move and make
by myeloma bone disease. a noise.
Radiotherapy can often Radiotherapy only lasts for a few
relieve pain more quickly minutes, sometimes seconds. It
than anti-myeloma and/or is important to remain still and
pain-killing treatments and breathe normally. Often only one
may sometimes be the initial or two treatments of radiotherapy
treatment given. (called fractions) are needed to
relieve the pain at any particular
site and an improvement is
normally noticeable within days.
Infoline: 0800 980 3332 27What pain is involved with ■■ Sickness, vomiting and radiotherapy? diarrhoea Like having an X-ray, radiotherapy If side-effects develop during is a painless procedure. However, or after radiotherapy, it is you will be asked to lie in a important to tell your doctor or particular position depending nurse as they can be controlled where the radiotherapy is being with drugs. The radiation does applied to your body. This may not stay in the body after cause some discomfort but, treatment so you will not become as radiotherapy is a very quick radioactive and it is safe to mix procedure, you will not be asked with other people. to maintain the position for long. Although radiotherapy itself is a For more information about painless procedure, it can cause radiotherapy see the Radiotherapy some mild side-effects and, Infosheet from Myeloma UK. 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 heat should be avoided and areas treated with radiotherapy should not be exposed to the sun 28 www.myeloma.org.uk
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.
It is not recommended to play down your
pain because you don’t want to trouble your
doctor, nor exaggerate it, because you are
worried you won’t be taken seriously. This
will not help you get the 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, 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 such as getting
washed and dressed?
■■ Does anything make your pain
better or worse?
Infoline: 0800 980 3332 29■■ What have you tried for You will also be asked how your
pain relief? pain is affecting you emotionally
■■ Is your pain constant? If not, (see page 13).
how many times a day (or You may be asked to rate your
week) does it occur? pain using a pain rating scale.
■■ Does it occur at different times, This is a form with a number of
i.e. is it worse in the morning or questions about your pain and
the evening? asks you to give your pain a
numerical score (often between
■■ Do you have any other pain zero to 10 with zero representing
that may not be related to your no pain and 10 representing
myeloma? extreme pain). You can see an
Some patients find that keeping example of one in Appendix 1
a diary of their pain, over a few on page 47.
days, helps them to describe it Some doctors or nurses will
more accurately and detect any use this tool or similar ones
triggers, patterns or periods of (e.g. verbal rating scale or body
the day when it is worse. diagrams) to help them to better
You may also develop other understand, and therefore
symptoms associated with your treat, your pain. However, these
pain. These can include nausea, techniques are not used by all
headaches, dizziness, shortness doctors or nurses and some rely
of breath, weakness, drowsiness, on their patients’ self-reporting.
increased sweating, constipation
and/or diarrhoea. You should also
discuss any of these symptoms
with your doctor or nurse.
30 www.myeloma.org.ukTreatment of pain
The aim of any pain relieving treatment is to provide
continuous pain relief, whenever possible, with minimal
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 Some of the most commonly
pain relief treatment options used treatments for pain
available, and most hospitals will management for myeloma
have access to a specialist team patients are described below.
of doctors, nurses and other
healthcare professionals who are Medical treatments
experts in pain management. The
role of the specialist pain team - Anti-myeloma treatments
known as the palliative care team Anti-myeloma treatment (drugs
- in the management of your pain which kill myeloma cells) is a key
and symptoms is described on component of pain management
page 38. as it is aimed at treating the
Pain control must be tailored myeloma itself, which underpins
specifically to you and it must most of the causes of pain.
be reviewed on a regular basis. They can be given either in
Not all pain treatments will work tablet form (orally) or through an
in every patient and it is often injection (intravenously). There
only through a trial-and-error are several different types of
approach that your doctor will drugs used to treat myeloma.
find the best pain relief for you.
Infoline: 0800 980 3332 31If your myeloma responds to Additional drugs that are not
treatment then it may be possible normally used as pain-killers
to reduce or stop, any pain-killers may also be helpful in certain
you are taking. circumstances, e.g. amitriptyline,
carbamazepine or gabapentin
Pain-killers may help relieve neuropathic
pain. Also steroids, particularly
You may be prescribed pain-
dexamethasone, may sometimes
killers to try to control your
be used to relieve bone pain.
pain. There are many types of
pain-killers available to treat Pain-killers come in different
different types and levels of pain. forms. You may be prescribed
It is important that an individual pain-killers in tablet, liquid or
approach is taken, so you may lollipop form, or as patches,
be prescribed a number of a nasal spray or injections
different types or combinations depending on the type and
of pain-killers. level of pain you have.
They broadly fall into the As with any treatment, most
following categories: pain-killers will have some
side-effects. These can include
■■ Pain-killers for mild pain
constipation, nausea, loss of
■■ Pain-killers for moderate pain appetite and drowsiness. Most
■■ Pain-killers for severe pain of these side-effects can be
prevented and/or managed
effectively so it is important to
let your doctor or nurse know if
you have any side-effects.
32 www.myeloma.org.ukThe pain-killers that are most different. It is usual to start with a
commonly used in myeloma are low-dose or a mild pain-killer first
listed in Table 1 on pages 34 and increase to an optimum dose
and 35. before a different or stronger
The over-the-counter type is given.
non- steroidal anti-inflammatory Pain-killers, like other treatments,
group of pain-killers can cause side-effects and
(e.g. ibuprofen) are not these may differ from patient to
recommended for use in patient. It is important that you
myeloma as they can worsen inform your doctor or nurse if
kidney damage. you have any side-effects to your
As there are such a wide range pain-killers even if the treatment
of pain-killers available, it is is reducing your pain. It may
important to find the one(s) be possible to reduce the dose
that work best for you. This may or try an alternative treatment
require a trial and error approach which will maintain the same
as no two patients are alike (or better) level of pain control
and the pain they have may be without the side-effects.
Infoline: 0800 980 3332 33Table 1: Pain-killers commonly used for the treatment of pain in myeloma
Class: Simple non-opioid analgesics
Examples Comments
Paracetamol – usually given Useful in mild to moderate pain
as tablets/capsules
Class: Weak opioids (natural and synthetic)
Examples Comments
Co-codamol, codeine, Provide effective pain relief for
dihydrocodeine, low-dose moderate pain
tramadol – usually given
as tablets/capsules
Low-dose buprenorphine – Can cause confusion and
given as ‘BuTrans’ patches drowsiness. They may also cause
nausea/vomiting; caution required
in those with kidney damage
Class: Strong opioids (natural)
Examples Comments
Morphine – given as liquid or Provide effective pain relief for
tablets; can be converted to moderate to severe pain
‘slow release’ preparations
when daily requirements are
established
Diamorphine – usually given by Similar side-effects to
injection buprenorphine
34 www.myeloma.org.ukTable 1: Pain-killers commonly used for the treatment of pain in myeloma
Class: Strong opioids (synthetic)
Examples Comments
Oxycodone – given as liquid Provide effective pain relief
or tablets/capsules for moderate to severe pain;
High-dose tramadol – given can be used as an alternative
as tablets, liquid or slow to morphine
release tablets
Fentanyl – given as slow release Similar side-effects to
patches, tablets, lozenges or as buprenorphine
a nasal spray
High-dose buprenorphine –
given as ‘Transtec’ patches
Infoline: 0800 980 3332 35Bisphosphonates demonstrating that it has
Bisphosphonates are a specific some anti-myeloma properties
group of drugs that help to over and above its effects on
protect and strengthen bones bone. National guidelines now
and therefore minimise the extent recommend zoledronic acid as
of, or prevent, bone damage. the bisphosphonate of choice for
all patients with active myeloma.
As well as reducing the likelihood
of pathological fractures,
Radiotherapy
bisphosphonates are also very
effective in relieving bone pain Targeted radiotherapy can be
and reducing the need for strong helpful for patients with localised
pain-killers. bone pain. Radiotherapy kills off
the myeloma cells, which in turn
Bisphosphonate treatment is
reduces bone pain.
recommended for all myeloma
patients requiring anti-myeloma Radiotherapy is also effective
treatment, whether or not in relieving the pain caused
myeloma bone disease is evident. by a deposit of myeloma cells
The bisphosphonates that are pressing on the spinal cord, often
most commonly used in myeloma known as malignant spinal cord
are: zoledronic acid (formerly compression. Usually, the first
known as Zometa®); Aredia® sign of spinal cord compression
(disodium pamidronate) and is unexplained back pain which
Bonefos® (sodium clodronate). gradually gets worse. The pain
may feel like a tight band around
A recent clinical trial showed that
the chest or abdomen and can
zoledronic acid not only reduced
radiate down to the buttocks
the extent of myeloma bone
and legs. Other symptoms of
disease, but improved survival
spinal cord compression include
in newly diagnosed patients,
incontinence.
36 www.myeloma.org.ukRadiotherapy treatment should considered if you do not have
be started as soon as possible adequate white blood cell counts
after spinal cord compression or if you are prone to bleeding.
is diagnosed. This is to prevent Usually, more conventional
permanent damage to the spinal treatments for your back pain will
cord, which can result in paralysis. be tried first.
Surgical procedures
For more information see the Surgical
Two surgical procedures that interventions Infoguide from Myeloma UK.
treat vertebral fractures, known
as Percutaneous Vertebroplasty
and Balloon Kyphoplasty, Anti-emetics
relieve back pain as well as Anti-emetics are drugs that are
strengthening the vertebrae. used to prevent or reduce nausea
Although slightly different to and vomiting. They can be used
each other, both procedures to treat nausea and vomiting
involve minimally invasive caused by chemotherapy.
surgery to repair and stabilise the Although physically being sick is
fractured vertebra by injection of not usually painful, the symptoms
surgical cement directly into the associated with sickness, such
vertebra. as stomach cramps, can be.
These procedures are not Anti-emetics can therefore help
suitable for all patients. Doctors to reduce any pain that may be
select patients very carefully, caused by vomiting.
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
Infoline: 0800 980 3332 37Non-medical treatments Acupuncture
There are also many non-medical Acupuncture is part of
strategies which can be used traditional Chinese medicine
instead of, or alongside, medical and practitioners believe that
treatments to help treat or relieve they can use the balance of the
your pain. Some of the most body’s own life force to restore
common ones include: wellbeing. Acupuncture needles
are applied to areas where this
TENS machine flow is believed to have been
Transcutaneous electrical nerve blocked in order to restore
stimulator (TENS) machines balance and health.
deliver small electrical pulses to Acupuncture is used by many
the body via electrodes placed people to relieve pain but you
on the skin. TENS machines are should keep in mind that you are
thought to stimulate the nerves at an increased risk of infection
reaching the brain to signal because of your myeloma and
to the body to release its own its treatment so you should
pain-killers, hormones called always inform your doctor or
endorphins. TENS machines nurse about any complementary
are sometimes available from therapies that you are
your physiotherapist and large considering.
chemists usually stock them.
38 www.myeloma.org.ukGentle massage Correct positioning
Gentle massage can be used to Often the way that you sit,
relieve muscle pain and tension or lie down, can affect your
and can be both therapeutic pain. Move to get comfortable,
and relaxing. Remember to tell use supportive cushions or
the massage therapist that you pillows and ask to be seen by a
have myeloma and that forceful physiotherapist for expert advice.
massage could damage your
bones.
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.
Relaxation techniques
Meditation, visualisation,
relaxation or a combination
of these can be helpful in
relieving pain.
Infoline: 0800 980 3332 39The 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 and advise on which treatments team do? you should be given. They also The palliative care team provide psychological, social and can be made up of doctors, holistic support for both you and specialist nurses, psychologists, your family. physiotherapists and There is a misconception that occupational therapists – the the palliative care team are there exact members of the team may purely to provide end of life care. differ from hospital to hospital. This is one aspect of their role, They provide specialist care in but they also provide specialist symptom control and can give care in pain management and advice and care for patients symptom control for patients either at the hospital or in the at all stages of their cancer or home. illness. You can be referred to The palliative care team can a palliative care team, by your help you to manage your pain doctor, at any time. 40 www.myeloma.org.uk
Living with pain
It can be very difficult to live with pain and you may
need a lot of help and support. It is important to
remember that the extent of your pain 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 to have aids fitted around your
reduce your pain by medical, home (e.g. bath or shower seat)
non-medical or surgical to make day-to-day living easier.
interventions but there are also
some things that you can do Take pain-killers regularly
yourself to try to control your as prescribed
pain and to cope with it. Some
Try to stick to the regimen that
self-help tips and strategies are
has been prescribed for you and
listed below:
do not wait until you are in pain
before taking your pain-killers as
Ask for help when needed they will not be as effective. If you
Do not be afraid to ask for help find that your pain-killers are not
from those around you; most effective, go back to your doctor
family members and friends are or nurse and try something else.
glad to be able to offer some
assistance. If you think you need Distraction therapy
help around the home, speak
Some patients find that watching
to your doctor or nurse – they
TV, listening to the radio or
will be able to arrange for an
engaging in a hobby can help to
occupational therapist to assess
take their mind off the pain for a
you. It may be possible for you
short while.
Infoline: 0800 980 3332 41Achieving a balance between Talking about your feelings regular rest and activity Anxiety and stress can aggravate Try to have some structure pain, so try to talk about your to your day whilst avoiding worries or concerns with people overtiring yourself. Moderate who are close to you or with your gentle exercise (e.g. walking or doctor. If you would like to speak swimming) can help strengthen to a trained counsellor, your GP your muscles and support your or hospital should be able to bones. It will also take your mind organise this for you. off your pain and can help lift your mood. 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. 42 www.myeloma.org.uk
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 myeloma-related
pain and to develop better
pain treatments including ways
of preventing pain signals from
them by amplifying or stopping
them altogether.
Infoline: 0800 980 3332 43Medical terms explained
Amitriptyline: A type of anti- of the immune system to destroy
depressant drug that can be used and remove them, thereby
to treat neuropathic pain. helping to fight infection.
Anaemia: A decrease in the Balloon Kyphoplasty: A
normal number of red blood cells, procedure used to repair/
or the haemoglobin that they stabilise a compression fracture
contain, causing shortness of in one or more vertebrae and
breath, weakness and tiredness. to relieve pain. It is a similar
procedure to percutaneous
Anaesthetic: A type of drug used
vertebroplasty but in addition to
to temporarily reduce or take
stabilising the fracture, aims to
away sensation so that otherwise
reshape and restore the height of
painful procedures or surgery
the damaged vertebra. It involves
can be performed. A general
an inflatable balloon tamp being
anaesthetic makes the patient
inserted in the vertebrae and
unconscious and therefore
inflated to create a space. The
unaware of what is happening.
tamp is removed and the space is
A local anaesthetic numbs the
filled with bone cement.
part of the body that would
otherwise feel pain. Bone marrow: The soft, spongy
tissue in the centre of bones that
Antibodies (immunoglobulins):
produces white blood cells, red
Also known as immunoglobulins,
blood cells and platelets.
antibodies are proteins found in
the blood which are produced Bortezomib (Velcade®): A type
by cells of the immune system, of drug called a proteasome
called plasma cells. Their function inhibitor.
is to bind to substances in the
Carbamazepine: A type of anti-
body that are recognised as
epileptic drug that can be used to
foreign such as bacteria and
treat neuropathic pain.
viruses. They enable other cells
44 www.myeloma.org.ukCatheter: A tube that is placed Gastrointestinal: Refers
in a blood vessel to provide a collectively to the stomach, small
pathway for drugs or nutrients. and large intestine.
Chemotherapy: Treatment with High-dose therapy: High-
potent drugs intended to kill dose chemotherapy given
cancer cells. Chemotherapy intravenously, usually via a
drugs can be injected into a vein HICKMAN® or PICC line, prior
(intravenous or IV) or swallowed to patients receiving healthy
as tablets (orally). stem cells as part of the
transplantation procedure.
Dexamethasone: A type of drug
called a steroid. Often given Hypercalcaemia: A higher than
alongside other drugs in the normal level of calcium in the
treatment of myeloma. blood, which may cause loss of
appetite, nausea, thirst, fatigue,
Endorphins: Chemicals produced
muscle weakness, restlessness
by the body that serve to
and confusion. Often associated
suppress pain.
with reduced kidney function
Fatigue: A feeling of being since calcium can be toxic to the
exceptionally tired, lethargic or kidneys.
exhausted all or most of the time.
Immune system: The complex
It does not result from activity or
group of cells and organs
exertion and is not relieved by
that protect the body against
rest or sleep.
infection and disease.
Gabapentin: A type of
Immunoglobulins (antibodies):
anti-epileptic drug that can
Also known as antibodies,
be used to treat neuropathic
immunoglobulins are proteins
pain.
found in the blood which are
produced by cells of the immune
system, called plasma cells. Their
Infoline: 0800 980 3332 45function is to bind to substances Neutropenia: A reduced level
in the body that are recognised of neutrophils, a type of white
as foreign such as bacteria and blood cell important for fighting
viruses. They enable other cells bacterial infection.
of the immune system to destroy
Non-steroidal anti-inflammatory
and remove them, thereby
drug (NSAID): Drugs used to
helping to fight infection.
prevent or treat pain which do
Kyphosis: An abnormal curvature not contain steroids.
of the spine.
Oral thrush: An infection of yeast
Leukopenia: A reduced level of fungus in the lining of the mouth.
white blood cell. White blood
Osteoblast: Cells which form new
cells are important for fighting
bone.
bacterial infection.
Osteoclast: Cells which break
Lytic lesions: A damaged area of
down old bone.
a bone that shows up as a dark
spot on an X-ray. Lytic lesions Osteopenia: Thinning or
look like holes in the bone and weakening of the bone.
are evidence that the bone is Paraprotein: An abnormal
being weakened. antibody (immunoglobulin)
Malignant spinal cord produced in myeloma.
compression: Occurs when the Measurements of paraprotein
spinal cord is being compressed in the blood can be used to
by a tumour. diagnose and monitor the
disease.
Malignant: Cancerous cells which
have the ability to invade and Pathological fracture: A break in
destroy tissue. a bone caused by bone disease
or bone cancer, rather than solely
due to trauma.
46 www.myeloma.org.ukPelvic bone: The bones which Platelets: Small blood cells which
connect the trunk and the legs. are involved in blood clotting.
Percutaneous Vertebroplasty: Post-herpetic neuralgia: Nerve
A procedure used to repair/ pain which persists in patients
stabilise a compression fracture who have had shingles, after the
in one or more vertebrae and to shingles rash has disappeared.
relieve pain. It involves injecting
Quality of life: A term that refers
bone cement into the vertebra to
to a person’s level of comfort,
stabilise and strengthen it.
enjoyment, and ability to pursue
Peripheral nervous system: daily activities. It is a measure of
Consists of the nerves outside an overall sense of wellbeing.
the brain and spinal cord.
Red blood cells: Blood cells
Peripheral neuropathy: Damage which transport oxygen around
to the nerves that make up the body.
the peripheral nervous system
Relapse: The point where disease
causing pain, tingling and altered
returns or becomes more active
sensation.
after a period of remission or
Physiotherapist: A healthcare plateau (often referred to as
professional who treats patients stable disease).
with physical difficulties resulting
Sedative: A type of drug which
from injury, illness, disability or
has a calming effect to help
ageing. They work with patients
reduce or relieve anxiety, stress
to identify and improve their
or excitement, and is often used
movement and function.
to induce sleep.
Plasma cells: Specialised
white blood cells that produce
antibodies (immunoglobulins) to
fight infection.
Infoline: 0800 980 3332 47You can also read
