Download Myeloma Essential Guide PRINT LK March 2016.indd

Myeloma
Your Essential
Guide
Myeloma
Infoguide
Series
Essentials
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This Essential Guide 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
www.myeloma.org.uk
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Contents
4
Introduction
6
What is myeloma?
53 Maintenance and
consolidation treatment
10 What causes myeloma?
54 Myeloma research, new
treatments and clinical trials
14 Types of myeloma
56 Living well with myeloma
18 Diagnostic tests and
investigations
61 Questions for your doctor/
medical team
23 The symptoms and
complications of myeloma
63 Self-help checklist
30 Treatment of myeloma
– an overview
36 Initial treatment
37 Less intensive initial
treatment
42 Intensive initial treatment
47 How do I know if my
treatment is working?
49 Treatment for relapsed and/or
refractory myeloma
64 Medical terms explained
72 Appendix 1: Blood tests and
normal ranges
74 Further information and
useful organisations
88 About Myeloma UK
90 Information available from
Myeloma UK
92 We need your help
Disclaimer: The information in this Essential Guide 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
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Introduction
This Essential Guide has been written for myeloma
patients. It may also be helpful for their families
and friends.
It aims to:
■ Help you understand more
about myeloma, its treatment
and management
■ Help you to make informed
decisions about your treatment
and care
■ Provide information to carers
and family members
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 at the back of
this Essential Guide.
your diagnosis and provides
some practical tips for the weeks
and months ahead. This Essential
Guide is intended to follow on
from the Infopack, providing
more detailed information.
It is also intended to be read
alongside our other Essential
Guide - Living well
with myeloma.
Please contact Myeloma UK if
you have not already received
a Newly Diagnosed Pack or a
Living with Myeloma Essential
Guide.
If you have recently been
diagnosed with myeloma, our
Infopack for newly diagnosed
myeloma patients focuses on
what you need to know following
4
www.myeloma.org.uk
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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.
You will find a list of our
publications at the back of this
Essential Guide.
From outside the UK and
Ireland, call +44 (0)131 557 9988
(charged at normal rate).
To order your free copies contact
Myeloma UK. This and further
information is also available
to read and download at
www.myeloma.org.uk
To talk to a Myeloma Information
Specialist about any aspect
of myeloma, call the Myeloma
Infoline on 0800 980 3332 or
1800 937 773 from Ireland.
Infoline: 0800 980 3332
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What is myeloma?
Myeloma, also known as multiple myeloma, is a type of
bone marrow cancer arising from plasma cells, which
are normally found in the bone marrow. Plasma cells
form part of your immune system.
Bone marrow and blood cell
formation
Bone marrow is the spongy
material found in the centre of
larger bones in the body such as
your spine, pelvis and rib cage
(see Figure 1). The bone marrow
houses cells called stem cells.
These stem cells develop and
multiply and eventually become
the three types of blood cell that
circulate in your bloodstream
- red blood cells, white blood
cells and platelets.
The bone marrow is therefore
the centre of all blood cell
production.
Bone marrow
Hollow inner bone
Dense outer bone
Figure 1. Bone marrow
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Plasma cells
Plasma cells are a type of white
blood cell produced in the bone
marrow. They are part of your
immune system. Plasma cells
make immunoglobulins (also
called antibodies) and release
them into the bloodstream.
Immunoglobulins fight infection
by helping to kill bacteria and
viruses and by building up
immunity to disease.
Plasma cells in myeloma
Cancer begins when cells in
a part of the body become
abnormal and start to multiply
uncontrollably. In myeloma, the
cells that become abnormal and
multiply uncontrollably are the
plasma cells in the bone marrow.
Myeloma begins when the genetic
material (DNA) is damaged
during the development of a
plasma cell. The damaged DNA
is not repaired and causes the
plasma cell to become abnormal
and multiply uncontrollably. The
abnormal plasma cells release a
large amount of a single type of
abnormal immunoglobulin, which
does not help to fight infection.
This immunoglobulin is called
paraprotein.
Plasma cells normally make
up less than 5% of the total
amount of blood cells in the
bone marrow. Bone marrow
in myeloma patients may have
between 10% and 90% abnormal
plasma cells.
These abnormal plasma cells
are often referred to as myeloma
cells.
Unlike many cancers, myeloma
does not exist as a lump or
tumour. Instead, the myeloma
cells multiply and spread within
the bone marrow, inhibiting the
production of normal blood cells
(including normal plasma cells)
and preventing the bone marrow
from working properly.
Myeloma affects multiple places
in the body where bone marrow
is normally active in an adult
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(hence the term ‘multiple’
myeloma) i.e. within the bones
of the spine, skull, pelvis, the rib
cage and the areas around the
shoulders and hips.
■ Fatigue – often due to anaemia
caused by the reduction of red
blood cells needed to carry
oxygen around the body.
Fatigue can also be a sideeffect of treatment
The areas usually not affected are
the hands, feet and lower arm/
leg regions.
■ Frequent or recurrent
Most of the symptoms and
complications related to
myeloma are caused by the
build-up of myeloma cells in the
bone marrow and the presence
of the paraprotein in the blood or
in the urine.
■ Hypercalcaemia or raised
infection, such as in the chest
or bladder – caused by the
reduction of white blood cells
required to fight infection
calcium level in the blood –
resulting from the release of
calcium from damaged bone
■ Kidney damage – the
Symptoms and complications
of myeloma
Some of the more common
symptoms and complications
associated with myeloma include
(more information on all of these
can be found on pages 23-29)
■ Bone pain and bone fractures
– as a result of myeloma cells
in the bone marrow affecting
the surrounding bone, causing
bone destruction. This is often
referred to as myeloma bone
disease
8
abnormal protein produced
by myeloma cells can damage
the kidneys. Hypercalcaemia
and the effects of some of the
drugs used in the treatment
of myeloma can cause further
damage
■ Peripheral neuropathy in
which nerves that make up
the peripheral nervous system
are damaged – can be caused
by the treatments for myeloma
and also the myeloma itself.
Not all of these complications or
symptoms are present at diagnosis
and not every patient will experience
all or any of these.
www.myeloma.org.uk
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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
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What causes myeloma?
The causes of myeloma are poorly understood but we
do know that the onset of myeloma involves a complex
multistep process.
As previously stated, myeloma
develops when DNA is damaged
during the development of a
plasma cell. This abnormal cell
then starts to multiply and spread
within the bone marrow.
However, what triggers these
errors is still not known. Exposure
to additional risk factors is
thought to play an important role.
DNA is made up of genes
which contain the information
that determine how your body
develops, grows and functions.
Most diseases are generally
caused by a combination of
different ‘errors’ which affect
certain genes. These genetic
errors are either inherited from
our parent(s) or are acquired as a
result of exposure to something
in our environment, such as a
toxic substance or virus.
A number of factors are
associated with an increased risk
of myeloma. These include:
Progress is being made in
understanding how both
inherited and acquired genetic
errors cause myeloma.
10
Risk factors for myeloma
■ Age, gender or race –
myeloma is more common
with increasing age, is twice
as common among individuals
of African origin than of
Caucasian or Asian origin and
males are 1.5 times more likely
to be diagnosed with myeloma
than females
■ Family history of myeloma
– people who have a close
relative (parent, sibling, child)
with myeloma are up to twice
as likely to get myeloma than
the general population
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■ Weight – obesity is a risk factor
for many cancers including
myeloma
■ Exposure to toxic substances -
e.g. petrochemicals, agricultural
chemicals and radiation
■ Some autoimmune disorders
– e.g. rheumatoid arthritis and
multiple sclerosis
■ Exposure to certain viral
infections – e.g. hepatitis,
HIV and herpes virus
How and why these factors
increase the risk of developing
myeloma is not yet known.
Furthermore, the majority of
myeloma patients have been
associated with none of these
risk factors indicating that other
factors, not yet known, are also
involved.
MGUS and asymptomatic
myeloma
Some people go on to develop
myeloma after having been
diagnosed with a condition
called MGUS which stands for
Monoclonal Gammopathy of
Undetermined Significance. It is
generally now accepted that all
myeloma patients have had MGUS
first, whether it was identified or
not.
MGUS is a condition which
resembles myeloma due to the
presence of myeloma cells in the
bone marrow and paraprotein in
the blood, but at much lower
levels than in myeloma. Also,
unlike myeloma, MGUS does not
cause any symptoms. MGUS
patients do not receive treatment
but are monitored regularly (at
least once a year).
For more information see
the MGUS Infosheet from
Myeloma UK.
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MGUS is a non-cancerous
precursor to myeloma; although
not all MGUS patients go on to
develop myeloma in their lifetime.
There is a 1% chance each
year that MGUS develops into
myeloma.
The cause of the progression
from MGUS to myeloma is not
yet known but probably involves
changes at the genetic level.
Smouldering myeloma, also
called asymptomatic myeloma
or indolent myeloma, is an
early form of myeloma which
usually progresses at a slow rate.
Smouldering myeloma patients
have myeloma cells in the bone
marrow and paraprotein in the
blood (at a higher level than
in MGUS) but as the name
suggests, they do not have
any of the typical symptoms
of myeloma.
12
Smouldering myeloma will at
some point progress to active
myeloma but it is not possible
to predict when this will happen
in each individual.
Statistically, approximately 10%
of smouldering myeloma patients
progress to active myeloma
every year in the first five years,
3% per year in the next five
years and 1% per year thereafter.
Smouldering myeloma patients
are monitored closely (every
3 - 6 months) but do not
usually receive treatment
for the myeloma, although
bisphosphonate treatment may
be given to help protect and
strengthen their bones.
Currently, the majority of
smouldering myeloma patients
are not treated until active
myeloma develops because the
benefits of treatment can be
outweighed by the risk of
side-effects.
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Furthermore, evidence from
clinical trials have demonstrated
that early treatment does not
provide a significant benefit to
the majority of patients in terms
of delaying progression to active
myeloma.
For more information see
the Smouldering Myeloma
Infosheet from Myeloma UK.
There is, however, a growing
body of evidence to suggest that
early treatment of a subgroup of
‘high-risk’ smouldering myeloma
patients can potentially delay
progression to active myeloma
and extend patients’ lives.
‘High-risk’ patients are those
for whom the probability of
progression to active myeloma
in the first two years after
diagnosis exceeds 80%, which is
based on a number of factors.
However, this is still an area of
research and warrants further
investigation. For the majority of
smouldering myeloma patients,
therefore, monitoring remains
the standard of care.
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Types of myeloma
Myeloma is often described as being a very individual
cancer, both in terms of the way patients experience
complications and in the way they respond to
treatment, which can vary greatly. Some of this variation
is due to the different types and subtypes of myeloma.
The most common way
myeloma can be classified
is according to the type of
defective immunoglobulin
(called paraprotein) produced
by the myeloma cell. However,
potentially the most useful way
of classifying myeloma is by
genetic subtype.
This section describes these
classification types in more detail.
Type of immunoglobulin
In a healthy immune system,
there are several different types
of immunoglobulin (commonly
known as antibodies). Each
immunoglobulin is a Y-shaped
structure and is always made up
of two identical heavy chains and
two identical light chains
(see Figure 2).
Light chain
Light chain
Heavy chain
Heavy chain
Figure 2. Immunoglobulin structure
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There are five possible types of
heavy chain referred to by the
letters G, A, D, E and M and there
are two possible types of light
chain referred to by the Greek
letters, kappa () and lambda ().
Each immunoglobulin (Ig for
short), can have only one of the
five possible heavy chain types.
Therefore immunoglobulins can
be IgG, IgA, IgD, IgE or IgM.
Each Ig can then be further
sub-classed depending on the
type of light chain it has.
A healthy individual produces
a mixture of the different
immunoglobulins made up of
different combinations of heavy
and light chains, each of which
plays a specialised role in fighting
infection. In myeloma, however,
a large amount of a single type
of abnormal immunoglobulin
called paraprotein is produced.
Paraprotein plays no useful role in
the body.
IgG type myeloma
Approximately 65% of myeloma
patients have what is called
IgG type myeloma, with either
a kappa or lambda light chain
component. IgG kappa type
is the most common type of
myeloma.
IgG type myeloma has all the
usual features of myeloma.
Other Ig type myeloma
The next most common type
is IgA myeloma. IgM, IgD and
IgE type myeloma are all
extremely rare.
IgA type myeloma can
sometimes be associated with
myeloma deposits outside of
the bone (called extramedullary
plasmacytoma), and IgD
myeloma can be accompanied
by plasma cell leukaemia and
is more likely to cause kidney
damage.
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Light chain myeloma
In about 20% of patients, the
myeloma cells only produce
light chains (sometimes called
Bence Jones proteins) and
no whole immunoglobulins at
all. This is called ‘light chain’ or
‘Bence Jones’ myeloma. The light
chains produced by the myeloma
cells are exclusively kappa light
chains or lambda light chains. An
increase in either kappa or lambda
light chain levels in the blood
can indicate active myeloma.
The kappa/lambda ratio is also
calculated and is considered to
be as important as the kappa and
lambda levels for diagnosing and
monitoring light chain myeloma.
Of all the different types of
myeloma, light chain myeloma
is most likely to cause kidney
damage. This is because the
excessive amount of light chains
circulating in the bloodstream of
patients with light chain myeloma
can both block the tubules
within the kidney, and cause
inflammation to the kidney tissue.
Light chains are also elevated and
measurable in the vast majority
of patients that produce whole
immunoglobulins (paraprotein).
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This means that light chain
measurement can be of use not
just in patients with light chain
myeloma but in all myeloma
patients.
Oligosecretory and
non-secretory myeloma
Extremely rarely, in less than
1% of patients, the myeloma
cells produce very little or no
abnormal immunoglobulin chains
of any type.
Oligosecretory myeloma patients
have very low measureable
levels of abnormal protein (either
paraprotein or light chains)
in their blood or urine. ‘Nonsecretory’ myeloma patients have
no detectable levels of abnormal
protein in their blood or urine.
Oligosecretory or non-secretory
myeloma is no different to the
other types of myeloma in terms
of treatment approach. However,
the low or immeasurable levels
of abnormal protein make it
challenging for these types of
myeloma to be diagnosed and
monitored using traditional blood
and urine tests.
A relatively new test called the
Freelite™ test has been able
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to detect minute amounts of
light chains in the blood of
oligosecretory patients, therefore
making diagnosis and monitoring
easier. Patients with nonsecretory myeloma are generally
monitored using other tests such
as bone marrow biopsies.
Genetic subtypes of myeloma
It is now known that myeloma
is associated with multiple
genetic abnormalities or errors.
Many of the errors in myeloma
appear to be alterations or
errors in structures known as
chromosomes in which our
genes are packaged.
It is possible to use these
chromosomal abnormalities to
further classify myeloma on the
basis of genetic subtype. The
more common genetic subtypes
of myeloma include*:
■ t(4;14)
Each genetic subtype has its
own distinctive features which
may influence not only the onset
and speed of progression of the
myeloma, but also how well a
patient responds to treatment.
As such, genetic abnormalities
have the potential to be
powerful prognostic markers in
myeloma.
Currently, genetic subtypes can
only be detected in a specialised
laboratory and this test is not
yet routinely performed (it may
more regularly be carried out in
certain clinical trials). Simpler
tests are being developed to
enable patients to be genetically
subtyped routinely in the future.
It is hoped that this will enable
a patient’s response to different
treatments to be more accurately
predicted, which will in turn lead
to the development of treatments
that are tailored to each genetic
subtype of myeloma.
■ del(13q)
■ del(17p)
■ 1q21gain
■ t(11;14)
■ Hyperdiploidy
* the letters and numbers refer to
chromosomal alterations or errors
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Diagnostic tests and investigations
Anyone suspected of having myeloma should be
referred to a haematologist for further tests and
investigations. Myeloma is a complex cancer and
therefore its diagnosis can involve a number of different
tests. It is also a very individual cancer and therefore
results from diagnostic tests may vary from patient
to patient.
The aims of the tests and
investigations are to:
■ Establish a diagnosis
■ Gain an in-depth picture of the
specific characteristics of the
myeloma
■ Detect any complications so
that they can be effectively
managed
■ Help determine a treatment
plan
Bone marrow tests
Bone marrow tests are important
to determine both the presence
and amount of myeloma cells in
your bone marrow in proportion
to the other blood cells.
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There are two types of bone
marrow tests that may be carried
out. These involve the removal
of some liquid bone marrow (a
bone marrow aspirate) and/or
the removal of a 1 – 2 cm core of
bone marrow tissue in one piece
(a 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.
For example, it can be quite
difficult to carry out a biopsy in
some patients and the doctor
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may make the decision to make
the diagnosis with an aspirate
sample alone.
Both bone marrow tests are fairly
invasive procedures and must be
carried out by a skilled specialist.
Following diagnosis, most
patients will rarely have another
set of bone marrow tests. Nonsecretory patients may have
them more regularly due to the
difficulties in monitoring this type
of myeloma. Patients on certain
clinical trials may also have them
more regularly as a means of
monitoring the activity of the
myeloma.
Bone marrow samples are
usually taken from the pelvic
bone (Figure 3). A needle is
inserted through the skin and
into the bone and a sample is
drawn up by suction through
a syringe. The procedures
are carried out under local
anaesthetic with or without
sedation and last only a few
minutes.
Iliac crest
Bone marrow
Figure 3. Bone marrow sample being taken from the pelvic bone
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Occasionally, the bone marrow
sample may be used for genetic
analysis to determine the genetic
subtype (see page 17), although
this is not routinely available yet.
highly sensitive Freelite™ test
potentially has the ability to
detect changes in the activity
of the myeloma sooner than
conventional blood tests.
Other blood tests may include:
Blood tests
There are a variety of blood
tests that help to diagnose and
monitor myeloma.
Regular blood tests are
performed to measure your
paraprotein level. As well as
being important in diagnosing
myeloma, changes in the
paraprotein level can be a good
indicator of changes in the
activity of the myeloma.
If no paraprotein is detected
but myeloma is still suspected, a
Freelite™ test may be performed
to measure the amount of free
light chains in your blood. This
test is particularly important in
diagnosing and monitoring light
chain myeloma or oligosecretory
myeloma although, increasingly,
it is also being used in all patients
alongside more conventional
blood tests. This is because
light chains are elevated and
measurable in the vast majority
of myeloma patients, and the
20
Full blood count
A full blood count measures the
levels of the different cells in your
blood. The most important are:
■ Red blood cell count – a low
count shows that you are
anaemic
■ White blood cell counts – low
counts of some or all of the
different white blood cells
indicate that you are at greater
risk of infection
■ Platelet count – a low count
shows that you are at an
increased risk of bleeding
or bruising more easily than
normal
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Blood chemistry
■ Calcium – a mineral which is
A full blood chemistry test
provides an overview of the
levels of various substances in
your blood that can indicate the
severity of the myeloma and
myeloma-related complications.
They include:
normally found in bone. In
patients with active myeloma
bone disease, calcium is
released from the bone
into the blood leading to
higher than normal levels
(hypercalcaemia)
■ Beta 2 microglobulin (ß2M) –
To find out the normal ranges of the
tests, see appendix 1 on page 72.
a protein that is found on the
surface of almost all cells in
the body. It is present in most
body fluids but is increased
in myeloma. ß2M is one of the
most important indicators of
both the amount and activity
of myeloma
■ Creatinine and urea – both
are waste products that are
normally filtered out by the
kidney and passed into the
urine. High blood levels of
creatinine and urea indicate
poor kidney function
■ Albumin – a type of protein
that normally makes up most
of the protein found in the
blood. In myeloma, chemical
messengers (cytokines)
produced by the myeloma cells
suppress albumin production in
the liver
Skeletal survey
A skeletal survey is a series of
X-rays of the long bones, spine
and the skull, to detect the
presence of and extent of any
myeloma bone disease. Areas of
bone damage that show up on an
X-ray are known as lytic lesions.
Skeletal surveys are the standard
of care for detecting myeloma
bone disease and are one of
the first tests to be carried out
in the diagnosis of myeloma.
The X-rays can also identify any
areas of bone damage which
have caused the bone to fracture
or collapse and which require
immediate repair.
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If, however, there is any doubt
about the results of the X-rays,
you may be asked to undergo
more sophisticated imaging
scans such as a magnetic
resonance imaging (MRI) or a
computerised tomography (CT)
scan of an area causing concern.
These scans can provide more
detail and identify areas of bone
damage that are not so easily
detected by X-ray.
in-depth picture of the specific
characteristics of your myeloma.
The presence of complications,
caused by the myeloma
damaging specific organs and
tissues of the body, can also help
to determine the characteristics
of your myeloma. These are
commonly referred to by the
acronym ‘CRAB’ which describes
the four major complications
that are generally observed in
myeloma:
Repeat tests
C-calcium elevation
R-renal (kidney) impairment
A-anaemia
B-bone damage (lytic lesions)
The tests described above
are used not only to diagnose
myeloma but also to measure
response to treatment and to
monitor myeloma activity over
time. Many of these tests are
repeated regularly throughout
all stages of your treatment
and care. Tracking the levels of
normal and abnormal proteins
in the blood is particularly useful
and is likely to be the most
frequent test you will have.
Indications for starting
treatment
Results from the tests and
investigations listed above,
together with CRAB, will help
determine when treatment
should begin, what that
treatment should be, and
provide a baseline against
which response to treatment
and disease progression can be
measured (information on the
treatment of myeloma begins on
page 30).
On completion of some or all of
the tests described above, your
doctor should have a clear and
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The symptoms and
complications of myeloma
Unlike many other cancers, myeloma can affect the
body in several ways causing a number of symptoms
and complications. This is due to the myeloma cells
acting directly on the tissues of the body and releasing
a variety of proteins and other chemicals into the bone
marrow and bloodstream.
Be honest with your doctor and
nurse about any problems you
are having. Describing them as
accurately and as early on as
possible can reduce the number
and severity of the complications
associated with myeloma and will
help you get the right treatment,
early on.
Keep a Patient Diary from
diagnosis onwards so that you
can refer to it when describing
your symptoms and patterns
of symptoms to your doctor
or nurse.
The most common symptoms
and complications of myeloma,
how they may affect you, and
how they are managed are
described on pages 24 – 29.
It is important to remember
that not everyone will experience
all of these and that effective
supportive treatments and
strategies to prevent or
control them are available.
To order your free Patient Diary
from Myeloma UK, contact the
Myeloma Infoline
Infoline: 0800 980 3332
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Myeloma bone disease
Bone disease is one of the
most common complications
of myeloma and is the most
common cause of pain.
Myeloma cells produce signals
and substances known as
cytokines and growth factors
which activate bone breakdown
but inhibit new bone formation.
When this happens, bone is
broken down faster than it can
be repaired, leading to bone pain,
bone lesions or even fractures.
The middle or lower back, the
rib cage and the hips are the
most frequently affected areas.
Fractures occur most often in
the spine (vertebrae) or ribs.
Fractures can sometimes occur
with only minor pressure or injury.
Fractures of the vertebrae can
lead to their collapse, causing
pain, loss of height and curvature
of the spine.
Myeloma bone disease is treated
by a group of drugs called
bisphosphonates. They work
by interrupting the process of
increased bone breakdown.
Figure 4. Lytic lesions show up as dark shadows on an X-ray (left). A fracture is visible in the X-ray
of a patient’s arm (right)
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Bisphosphonates:
■ Prevent and slow down further
bone breakdown
■ Prevent and correct
hypercalcaemia
■ Reduce bone pain and the
need for pain-killers
Three bisphosphonates are
currently licensed for the
treatment of myeloma bone
disease:
Zoledronic acid is the
recommended bisphosphonate
of choice in light of a large-scale
clinical trial which showed it was
better than Bonefos in treating
myeloma bone disease, but
also had anti-myeloma effects
and survival benefits in newly
diagnosed myeloma patients.
For more information see the
Myeloma Bone Disease and
Bisphosphonates Infoguide
from Myeloma UK.
■ Bonefos® (sodium clodronate),
which is taken orally in tablet
form
■ Aredia® (pamidronate), which is
given as a monthly intravenous
infusion
■ Zoledronic acid (formerly
known as Zometa®), which is
given as a monthly intravenous
infusion
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Pain
Pain is the most common
symptom of myeloma affecting
up to 80% of patients at some
point. Living with pain can have
a huge impact on all areas of
a patient’s life, especially if it is
untreated or poorly managed.
The effective control and
management of pain is therefore
a very important element of
the supportive treatment for
myeloma.
As with myeloma, pain is very
specific to the individual. There
are a number of different ways to
treat pain. If you are responding
to anti-myeloma treatment you
may find that your pain starts to
ease since the underlying cause
of the pain is being treated.
You may also be prescribed
pain-killers to try to control your
pain. There are several different
types depending on the level
of pain you have and can be
taken in a number of different
ways including by mouth, as
an injection, as a patch or as a
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nasal spray. Treatment should
aim to provide continuous pain
relief whenever possible with a
minimum of side-effects.
Some myeloma patients find
that complementary therapies
such as relaxation techniques,
aromatherapy and massage can
help alleviate some symptoms
such as pain.
Where pain is more
severe, pain-killers and/or
complementary therapies may
be supplemented by other types
of treatment such as:
■ Localised radiotherapy – this
has been shown to help control
‘hot spots’ of active myeloma
bone disease and pain
■ Percutaneous Vertebroplasty
– vertebral collapse in the
spine can occur in myeloma.
Percutaneous Vertebroplasty
is a procedure which involves
the injection of cement into
the vertebral body; it has been
shown to have the potential to
reduce pain significantly
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■ Balloon Kyphoplasty –
similar to Percutaneous
Vertebroplasty but involves the
insertion of a small inflatable
balloon into the vertebral body
before injecting the cement.
This procedure has also been
shown to provide significant
pain relief and in some cases is
able to correct curvature of the
spine and restore height
For more information see the
Pain and myeloma Infoguide
from Myeloma UK.
For more information see the
Radiotherapy and Percutaneous
Vertebroplasty Infosheets
and the Balloon Kyphoplasty
Infoguide from Myeloma UK.
Fatigue
Fatigue is a condition that
affects most, if not all, myeloma
patients at some point and is a
symptom that patients can find
the most challenging.
Fatigue is a feeling of extreme
tiredness, lethargy or
exhaustion, felt all or most of
the time, which is not relieved
by sleep or rest.
In order to best manage fatigue,
it must first be recognised and
acknowledged. It is important
that you tell your doctor how
you feel because there are
several things they can do to
help treat some of the causes
of fatigue.
There are things you can do to
help yourself or be helped by
those caring for you: planning
activities to avoid overtiring
yourself is something that you
and your carers can do together;
eating a healthy, balanced diet;
taking regular light exercise; and
ensuring that you get enough
sleep can all play a part in
reducing the impact fatigue has
on your life.
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Fatigue caused by anaemia
can also be treated with blood
transfusions and also with a drug
called erythropoietin (EPO).
For more information see the
Fatigue Infoguide and the
Erythropoietin Infosheet from
Myeloma UK.
Kidney damage
Regular blood tests to measure
levels of creatinine and urea are
used to monitor your kidney
function. Kidney problems can
occur in myeloma for a variety
of reasons. The abnormal
protein produced by myeloma
cells can block and damage
the kidneys; this is particularly
common with light chain
myeloma. Other complications
of myeloma, such as dehydration
and hypercalcaemia, as well as
some of the drugs used in the
treatment of myeloma, can also
cause or contribute to kidney
damage.
The most important thing you
can do to reduce the risk of
kidney damage is to drink plenty
of fluid. You should try to drink
between two and three litres
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(three to five pints) of fluid
per day. Most liquids count, so
drink as many glasses of water,
sparkling water, juice or squash,
decaffeinated tea or milk as you
can. Caffeinated tea, coffee and
alcohol can be included, but in
moderation.
Also, avoid using certain drugs
called non-steroidal antiinflammatory drugs such as
aspirin or ibuprofen (Nurofen®),
which are commonly used as
pain-killers. These drugs can
contribute to kidney problems.
There are different ways to treat
kidney damage in myeloma,
depending on the cause. In many
cases, the kidney damage is
temporary and your kidneys can
recover. In a small proportion of
patients, the kidney problems
become permanent, so they
require a regular treatment
called dialysis. This is a way of
filtering the blood using a dialysis
machine in the same way that
kidneys would do if they were
healthy.
For more information see the
Myeloma and the kidney
Infoguide from Myeloma UK.
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Anaemia and infection
Myeloma cells affect the
production of all types of blood
cells. Complications of reduced
blood cells include:
■ Too few red blood cells results
in a low haemoglobin level,
causing anaemia, which can
lead to tiredness, weakness
and breathlessness
■ Low levels of white blood cells
can make you more likely to
get infections
urine) and tell your doctor or
nurse about them straightaway.
If your white cell count falls very
low, your doctor may give you
a course of antibiotics to try to
prevent infections before they
take hold. There are also drugs
(called growth factors) that can
stimulate the body to produce
more white blood cells.
If your platelet count falls to very
low levels, it can be boosted by a
transfusion of platelets.
■ Low levels of platelets may
mean that you bruise or bleed
more easily
Anaemia does not always
need treatment because bone
marrow is often able to recover,
especially if treatment is bringing
the myeloma under control.
If anaemia needs treatment,
a blood transfusion can help.
There is also a drug called
erythropoietin (or EPO) which
can stimulate the body to
produce more red blood cells.
Low white cell counts may not
always need to be treated, but
you should be alert to symptoms
of infection (such as temperature,
fever, cough, pain in passing
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Treatment of myeloma – an overview
Treatments for myeloma can be very effective at
controlling the disease, reducing symptoms, improving
quality of life and prolonging life. This is reflected in
recent data from the Office for National Statistics which
show that survival rates in myeloma are increasing at one
of the fastest paces among all cancer types in the UK.
However, unfortunately,
treatment for myeloma is
currently not curative. That said,
it is now generally accepted that
myeloma has the potential to
become a chronic cancer in
certain subgroups of patients.
Types of treatment
In general, the treatment and
management of myeloma can be
thought of in three categories.
These are:
1. Anti-myeloma treatments –
to control the myeloma itself.
Treatment for myeloma is usually
most effective when two or more
30
drugs with different but
complementary mechanisms of
action are given in combination.
There are a number of different
anti-myeloma treatments
available, which are used at
different stages of myeloma and
in a number of different
combinations. These include:
■ Chemotherapy
■ Steroids
■ High-dose therapy and stem
cell transplantation
■ Thalidomide
■ Velcade® (bortezomib)
■ Revlimid® (lenalidomide)
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There are also various novel
or experimental treatments in
different stages of development
that are being investigated for
use in the clinic in the future. It
may be possible to access these
new drugs as part of a clinical
trial (see page 54 for more
information).
2. Supportive care treatments –
to control and alleviate symptoms
and complications caused by
myeloma. These include:
■ Bisphosphonates
■ Erythropoietin
■ Antibiotics
■ Radiotherapy
■ Balloon Kyphoplasty
■ Percutaneous Vertebroplasty
■ Pain relief
3. Active monitoring – regular
testing but no anti-myeloma
treatment. You only need
treatment for your myeloma
when it is active and causing
problems.
Making treatment decisions
Choosing treatment for myeloma
is not a simple decision as no
single treatment combination has
been identified as being the best.
In addition to this, myeloma is a
very individual cancer and each
patient will respond differently to
different treatments.
You may prefer just to follow the
advice of your doctor or to take a
more active role in the decisionmaking process. Your doctor
should be able to adapt his or her
approach accordingly to suit you.
There is some overlap between
these two categories, since
any treatment that controls
your myeloma will have the
added benefit of reducing any
symptoms and complications.
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Generally, the best treatment
combination for you will take
account of:
■ Your general health, including
any other medical conditions
you have
■ Your age
■ Your personal circumstances
and lifestyle, and your priorities
and preferences
■ The characteristics of your
myeloma and the extent
to which it is causing
complications
■ Any previous treatments you
have had
■ Evidence-based national
guidelines and what is licensed
and approved for use on the
NHS
■ Whether or not you are taking
part in a clinical trial
■ In the near future, the genetic
subtype of your myeloma
To help you understand more
about your myeloma and the
treatment options available, try
to collect as much information as
you feel you need. Information
is available from doctors, nurses,
other patients, the internet and
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Myeloma UK. Listing the pros and
cons of each option is a good
way to help you decide what the
best treatment is for you. Talking
things over with your family,
friends or another patient can
help to clarify your thoughts.
What if I want to try alternative
therapies?
Some patients do not want
to have any type of standard
conventional medical treatment
and prefer to try an alternative
approach, using special diets
and/or alternative remedies
instead of the conventional
medical treatments.
Conventional treatments have
been successfully tested in
clinical trials and doctors have
a clear understanding of how
they work. It is important to
appreciate that almost no
alternative approaches have been
studied in the same way and
there is currently no evidence
that they work in treating
myeloma.
If you choose to use alternative
ways of trying to control your
myeloma, it is essential to discuss
this with your doctor as there are
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potential risks involved and you
may choose to try conventional
treatment at a later date.
Alternative approaches to
treatment should not be
confused with complementary
therapies. Complementary
therapies are used alongside, and
complementary to, conventional
treatment. Complementary
therapies include relaxation and
meditation, massage, reflexology
and aromatherapy. Before
starting any complementary
therapy it is important to discuss
it with your doctor.
What if I don’t want any
treatment at all?
Some people feel that they do
not want to have any treatment
for their myeloma. The decision
not to have treatment is a very
personal one and you should talk
this through with your doctor.
If you choose not to have
treatment for your myeloma
there are many supportive
measures available to help
alleviate its symptoms.
specialist, who will be able to
provide expertise in symptom
control and supportive care.
Who is involved in my
treatment and care?
Your treatment and care will be
discussed by a multidisciplinary
team (often referred to as
‘MDT’ for short). This is a
group of health and social
care professionals who work
together to look after cancer
patients, to ensure that the right
professionals can contribute to
your health and wellbeing.
A myeloma MDT will usually
consist of a number of core
members with specialist training
and expertise in myeloma and
related specialities, such as
kidney (renal), pain control or
orthopaedic (bone) specialists.
Other professionals might attend
on occasion, such as social
workers, physiotherapists and
dieticians.
Whether or not you choose to
have treatment, it may be helpful
to be seen by a palliative care
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Your relationship with your
healthcare team
Your relationship with your
medical team will involve trust
and collaboration. You should
feel comfortable asking questions
and discussing treatment options
with them. Learning more about
myeloma and the different
treatments that are available will
help you to communicate more
easily with your medical team
and help you to make informed
decisions about your care.
Sometimes medical professionals
forget that most patients do not
understand medical jargon. If you
do not understand something,
don’t be afraid to say so and
ask for information to be given
in everyday language (layman’s
terms). Doctors and nurses would
rather explain something twice
than have you go home confused
and worried. Many people find
it helpful to receive written
information they can take away
and read at home.
Remember that there are likely
to be uncertainties, and that
your doctor might not be able
to answer specific questions
about your future. For example,
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you might want to know how
successful your treatment is
going to be before you decide
to have it. Whilst your doctor
will probably be able to give
you average figures learned
from research, they will not be
able to tell you exactly how you
are going to respond to the
treatment.
Getting more than one opinion
Given the individual nature of
myeloma, choosing the right
treatment can be as challenging
for doctors as it is for patients.
You may feel that you want more
than one opinion to be sure that
the proposed treatment plan is
appropriate for your situation and
that all other options have been
considered.
Sometimes people have difficulty
in communicating with their
doctor and want the chance to
talk to another doctor. In this
circumstance, you might ask
to see a different doctor in the
same hospital or to have another
opinion at another hospital.
Doctors are normally happy to
arrange another opinion and
you should not feel that asking
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for one will offend them. You
may, however, find it easier to
approach your GP about this.
You may also decide to seek
another opinion privately. Your
notes will be passed on to the
second doctor before your visit
so they are familiar with your
particular situation.
The following sections describe
the various treatments that are
available for myeloma and some
of the circumstances under which
particular treatments are used.
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Initial treatment
Once the decision has been reached that you require
treatment to control your myeloma, you will begin
discussions about what type of initial treatment is best
for you.
Initial treatment for myeloma
can be broadly categorised
into two groups:
tolerated, often with fewer sideeffects and are still very effective
at treating myeloma.
1. Less intensive treatment for
older and/or less fit patients
using standard or lower doses
of specific treatments
Your doctor will explain to you
which group you fit into, based
on a number of factors, including
your age and general ‘fitness’ i.e.
your previous medical history
and level of myeloma-related
symptoms and complications.
2. More intensive treatment for
younger and/or fitter people
using higher doses of specific
treatments followed by stem
cell transplantation
The following sections will
discuss the treatment options
for patients in each group.
The reason behind this
categorisation is that the more
intensive treatment brings with it
the risk of increased side-effects
and complications, which could
be particularly problematic for
older and/or less fit patients. The
treatments used in the older/less
fit patient group are more easily
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Less intensive initial treatment
At present there are a number of treatment
combinations that may be used as initial treatment
for myeloma in older and/or less fit patients. These
include CTDa, MPT and VMP (see Table 1 for further
explanation).
Combination Chemotherapy
Steroid
Other
CTDa*
Cyclophosphamide Dexamethasone Thalidomide
MPT
Melphalan
Prednisolone
Thalidomide
VMP
Melphalan
Prednisolone
Velcade
Table 1 – Different initial treatment combinations** for older and/or less fit myeloma patients
* ‘a’ = attenuated, which means lower doses of some if not all of the drugs in the combination
** This is not an exhaustive list. You may, for example, be put on a treatment combination not included
in this table if taking part in a clinical trial
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Chemotherapy (e.g.
cyclophosphamide, melphalan)
Steroids (e.g. dexamethasone
and prednisolone)
The type of chemotherapy
prescribed for myeloma patients
depends on the individual and
what is most suitable for them and
their myeloma at any particular
point in time. The most commonly
used chemotherapy drugs for
myeloma are cyclophosphamide
and melphalan.
Steroids are drugs which mimic
certain hormones in the body
that help to regulate and control
the way the body develops and
functions. There are many different
types of steroids. Those used in the
treatment of myeloma are known
as glucocorticoids. These steroids
can suppress inflammation and the
immune response.
Chemotherapy drugs work by
damaging the DNA of myeloma
cells. This stops them from growing
and causes them to die.
Chemotherapy drugs attack all
rapidly multiplying cells in the body.
This includes the myeloma cells,
but also may affect other rapidly
multiplying cells such as normal
developing blood cells in the bone
marrow, hair follicles and the lining
of the mouth and the stomach. It is
for this reason that chemotherapy
drugs can cause side-effects.
Cyclophosphamide and melphalan,
when given in the combinations
outlined above, are usually given
orally (by mouth in tablet form).
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While not everything is known
about how steroids work, it is
recognised that they are effective
in killing myeloma cells. It has also
been found that, when steroids
are used with chemotherapy,
the result is a greater response
to treatment than when
chemotherapy is used alone.
Steroids are usually given in tablet
form, or more rarely intravenously
(into a vein). Tablets should
be taken with food or milk to
help protect the lining of the
stomach from irritation. It is also
recommended that steroids are
taken in the morning to prevent
sleep disturbance.
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Thalidomide
Thalidomide is classified as
an immunomodulatory drug
(IMiD) and is thought to work in
a number of ways, including by
stimulating the immune system
to attack and destroy myeloma
cells.
Thalidomide is given as a tablet,
usually in the evening.
The proteasome has an
important role to play in all cells,
especially myeloma cells. It works
by breaking down the many
different proteins that control the
cell’s lifecycle. Velcade blocks
proteasome function which
results in a build-up of proteins.
This causes myeloma cells to
die, while leaving normal cells
less affected.
Velcade
Velcade received its licence
for use in relapsed myeloma
in 2004. Since then, however,
it has gained an additional
license for use in newly
diagnosed patients – both as a
less intensive initial treatment
option in patients and as an
induction treatment prior to
high-dose therapy and stem cell
transplantation (see page 42 for
more details).
For more information see the
CTD, MPT and Velcade
Infoguides from Myeloma UK.
Velcade is the first in a class
of anti-cancer drugs called
proteasome inhibitors.
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How long will my treatment last?
What side-effects could I have?
The total length of a course of
an initial treatment combination
often depends on which one you
are taking and how you respond
to it, but is unlikely to last less
than three months or longer
than eight months. A course of
treatment is given in cycles e.g.
treatment over a few days or
weeks, followed by a rest period
without treatment before the
next dose is given. This is to give
the healthy cells time to recover
between treatments.
The drugs used to treat myeloma
can be quite toxic since, as well
as killing the myeloma cells, they
can also harm healthy cells. This
can cause significant side-effects.
Each drug has its own sideeffects and even the same kind of
drug produces different reactions
in different people.
If you have specific questions
about how long your treatment
course will last, your doctor is the
best person to answer them.
Unfortunately, different treatment
combinations do not always work
for everyone. Your doctor will
monitor your progress carefully
and, if you do not respond to
one particular combination, it will
be stopped and other options/
combinations will be explored.
40
Most side-effects are only short
term, can be managed with
supportive treatments, and go
away once the treatment has
stopped. The length of time it
takes for side-effects to resolve
after stopping treatment varies
from person to person. Common
side-effects of:
Chemotherapy – may include
nausea, vomiting, diarrhoea,
infections, sore mouth and hair
loss. Some chemotherapy drugs
can also cause infertility. If this
is a consideration for you, you
should talk to your doctor.
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Steroids – may include stomach
pain, increased blood sugar,
increased risk of infection,
increased appetite, mood
changes and muscle weakness.
Thalidomide – may include
drowsiness, constipation,
damage to the nerves in
the hands and feet resulting
in tingling, numbness,
increased sensitivity and pain
(called peripheral neuropathy),
increased risk of blood clots,
skin rash or itchiness.
Velcade – may include
peripheral neuropathy, reduction
in white blood cells, nausea,
vomiting, diarrhoea, skin rash or
itchiness and fatigue.
You should be given patient
information leaflets for all of the
drugs you are taking, explaining
all potential side-effects of each
particular drug. If you are not,
ask your doctor or nurse for
them.
If you are affected by any
side-effects that you think
may be due to your treatment,
tell your doctor or nurse
straight away. They will be able
to suggest ways of reducing
or relieving the symptoms of
your side-effects, perhaps by
changing or reducing the dose
or by prescribing supportive
drugs.
For more information see the
Constipation, Fatigue,
Peripheral Neuropathy and
Steroids Infosheets from
Myeloma UK.
For more information about
coping with side-effects see the
Living with myeloma Essential
Guide from Myeloma UK.
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Intensive initial treatment
For younger and/or fitter patients, initial chemotherapybased treatment will almost always be followed by
much more intensive treatment known as high-dose
therapy and stem cell transplantation.
High-dose therapy and stem cell
transplantation is an intensive
treatment which is associated
with potentially greater sideeffects and complications
than standard or lower dose
chemotherapy. It is therefore
only offered to myeloma patients
who are by and large fit and
healthy, and generally up to
the age of 65 – 70.
What is high-dose therapy and
stem cell transplantation and
why is it used?
Despite its effectiveness, a major
drawback of chemotherapy is
the inability to give high doses
safely. This is because high
doses of chemotherapy not only
kill the myeloma cells but also
the blood-forming stem cells in
the bone marrow. This results
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in blood cell production being
severely affected, with blood
counts falling to dangerously low
levels causing potentially lifethreatening problems.
High-dose therapy and stem
cell transplantation provides
a solution to this drawback.
It involves giving high doses
of chemotherapy to kill the
myeloma cells, and then giving
back stem cells previously
collected from the patient. This
effectively ‘rescues’ the patient’s
bone marrow, allowing blood
cell production to continue. This
type of stem cell transplantation
is known as an autologous stem
cell transplant.
Very rarely, a patient may receive
stem cells from a donor. This is
known as an allogeneic stem cell
transplant.
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High-dose therapy and stem
cell transplantation is a standard
treatment for myeloma for
younger and/or fitter patients.
The aim is to improve the
response to initial treatment and
to prolong the period of plateau
or remission.
What happens during the stem cell transplant procedure?
5. Autologous stem cell transplant
1. Induction treatment
4. High-dose melphalan
2. Stem cell mobilisation
3. Stem cell collection
Figure 5 – Steps involved in high-dose therapy and autologous stem cell transplantation
Infoline: 0800 980 3332
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Step 1 – Induction treatment
Before having high-dose therapy
and stem cell transplantation you
will be given an initial treatment
combination, known as induction
treatment. Standard practice in
most parts of the UK is to use
cyclophosphamide, thalidomide
and dexamethasone (CTD) as
induction treatment, although
this may change as a result of
clinical trial data. For example,
one of the aims of the large-scale
clinical trial Myeloma XI is to
determine whether a Revlimidcontaining induction treatment
combination is more effective
than a thalidomide-containing
one.
The number of cycles you
have will depend on how your
myeloma responds, but in
general will last between four to
six months.
If your myeloma does not
respond well to your induction
treatment, your doctor may not
recommend carrying on with the
procedure. Instead, you will be
offered a different treatment
approach.
44
Steps 2 and 3 – Stem cell
mobilisation and collection
You will be given treatment to
stimulate stem cells to multiply
and travel from the bone
marrow into the blood stream,
so that enough stem cells can be
collected for the transplant.
Stem cells are collected from
your blood prior to receiving
high-dose therapy by a process
called apheresis. This involves
passing your blood through a
machine, which separates and
collects the stem cells and returns
the remainder of the blood back
to your body.
When enough stem cells have
been collected they are frozen
and stored until they are needed
for the transplant. The minimum
number of stem cells needed for
a successful transplant is two
million per kilogram of body
weight. However, it is almost
always the aim to collect enough
for two transplants (both as a
contingency and to store for a
potential second transplant in
the future).
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Steps 4 and 5 – High-dose
therapy and the transplant
You will receive the high-dose
therapy with the chemotherapy
drug melphalan as an inpatient.
Within a day or so after receiving
the high-dose therapy, your stem
cells will be given back to you
intravenously, in a similar way to
a blood transfusion. Receiving
your own stem cells back is called
an autologous transplant, while
receiving stem cells from a donor
is called an allogeneic transplant.
and be kept in protective isolation
in hospital to help you avoid
infection. Blood and platelet
transfusions may be required
until the bone marrow recovers
and antibiotics may be given to
prevent infection.
The high-dose therapy and stem
cell transplantation process can
be quite debilitating and after the
procedure, a period of several
weeks of slow convalescence at
home is often needed.
Advantages/disadvantages
Step 6 – Recovery
Once the stem cells are back
in the bloodstream, they travel
back to the bone marrow, where
they settle and develop into new
blood cells. This vital process is
called engraftment and takes
about two weeks.
Most patients stay in hospital
until their blood counts return to
a safe level. This usually means
spending up to two to three
weeks as an inpatient. During this
time you may feel quite unwell
The main advantage of highdose therapy and stem cell
transplantation is the possibility
of achieving an excellent
response and long remission.
Disadvantages include more
toxicity than standard dose
chemotherapy and the reality
that relapses still occur.
For more information see the
High-Dose Therapy and
Autologous Stem Cell
Transplantation Infoguide from
Myeloma UK.
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Allogeneic transplantation
For a very small number of
younger patients, an allogeneic
transplant may be considered.
This is where stem cells from a
donor with a matched tissue type
(usually a sibling) are used for the
transplant.
Allogeneic transplants have
important differences compared
with autologous stem cell
transplants both in the potential
benefits and the risks involved.
Allogeneic transplants aim to
use the immune system of the
donor to help fight against the
patient’s myeloma. The donated
stem cells are transplanted into
the patient where they mature
into functioning cells of the
immune system. These can then
potentially attack myeloma cells
– this effect is known as ‘graftversus-myeloma’ and is thought
to be responsible for the lower
rate of relapse that can be seen
following an allogeneic transplant
compared to an autologous
transplant.
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The main disadvantage of an
allogeneic transplant is the risk
of graft-versus-host disease
(GVHD), which is a potentially
life-threatening condition. This is
when the donated cells not only
attack the myeloma cells but also
destroy the patient’s own body
tissue. GVHD is a major problem
and is one of the reasons why
allogeneic transplants have
a higher mortality rate than
autologous transplants.
Another type of allogeneic
transplant, known as a miniallogeneic transplant, is
sometimes considered. This
involves giving a lower dose
of chemotherapy than would
normally be used which reduces
the serious risks associated
with the standard allogeneic
transplant option.
For more information see the
Allogeneic stem cell
transplantation Infosheet from
Myeloma UK.
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How do I know if my
treatment is working?
The aim of treatment is to control the myeloma and
to alleviate any symptoms it may be causing. In order
to find out how you are responding to treatment,
several tests will be carried out on a regular basis.
These tests may vary from
patient to patient, but generally
include regular blood and/or
urine testing and occasional bone
marrow tests or X-rays.
The signs that treatment is
working include:
■ A fall in the paraprotein or
light chain level
■ An improvement in
your symptoms and/or
complications such as bone
pain, anaemia and kidney
function
■ A reduction in the number
of myeloma cells in the bone
marrow
■ An improvement in your
In general terms, your doctor
will measure your response
to treatment according to the
categories in Table 2.
Myeloma can respond very
well to treatment and go into
remission. This means that there
is no sign of active myeloma in
your body. Or, the paraprotein or
light chain level can be reduced
and remain at a stable level
following treatment. This is called
a plateau or stable disease.
It is important to note that the
duration of response can be
as important as the level of
response, so both remission
and plateau/stable disease are
desirable treatment outcomes.
general health and wellbeing
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Table 2 – Measuring the response to treatment
Treatment responses
Definition
Stringent Complete Response
No detectable paraprotein,
normal free light chain ratio,
no myeloma cells in the bone
marrow
Complete Response (CR)
5% or less plasma cells in
bone marrow, no detectable
paraprotein
Very Good Partial Response
(VGPR)
90% or greater reduction in
paraprotein
Partial Response (PR)
50% or greater reduction in
paraprotein
Stable Disease (SD)
Not meeting criteria for CR,
VGPR, PR or progressive disease,
but with stable values for at least
three months
Progressive disease
25% or more increase in
paraprotein or the development
of new myeloma-related
symptoms
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Treatment for relapsed and/or
refractory myeloma
While there are many effective treatments for
myeloma, currently there is no cure. This means that
even after successful treatment and periods of plateau
or remission your myeloma will return. This is called
a relapse.
If your myeloma does not
respond, or quite quickly stops
responding, to treatment this
is referred to as refractory
myeloma. Myeloma treatments
work in many different ways, so
if you have not responded well to
one type of treatment, this does
not necessarily mean that you
won’t respond well to a different
type of treatment.
Being told your myeloma has
stopped responding to treatment,
or has relapsed, can be a very
disappointing or distressing time
for patients and their families.
Talking things over with your
doctor, family or another patient
can help. Myeloma UK may also
be a good source of support and
information at this time.
How will I know I have relapsed?
The regular tests you will have
(described earlier on pages
18 - 22) will usually provide a
good indication of the activity
of your myeloma. For example,
if your paraprotein level rises over
the course of three subsequent
blood tests, this may be an
indication that your myeloma
is relapsing.
You may also experience an
increase in the symptoms and
complications related to myeloma
and an obvious deterioration
in your general health e.g.
increasing pain due to myeloma
bone disease, or decreasing
energy levels due to anaemia.
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What treatments are available
for relapsing myeloma?
When your myeloma relapses,
you and your doctor will together
consider what treatment you
should have to regain control of
your myeloma. Your doctor may
have already discussed potential
relapse treatment options with
you as part of your regular
appointments.
In some patients, the previous
treatment can be repeated
successfully if the initial response
was good. More often, other
options are considered for
relapsing myeloma. These are
usually treatment combinations
that include a steroid and
either Velcade or Revlimid (and
sometimes also a chemotherapy
drug).
Velcade can be given
intravenously (into a vein)
but is now mostly given
subcutaneously (into the skin)
by injection once or twice per
week. Velcade is usually given
with the steroid dexamethasone.
A chemotherapy drug, such as
cyclophosphamide, melphalan
or adriamycin, may also be
given as part of the treatment
combination.
You will normally be given
Velcade as an outpatient which
means you will have to travel to
the hospital regularly for several
weeks to have your treatment.
For more information see the
Velcade Infoguide from
Myeloma UK.
Velcade
At first relapse, myeloma
patients are most likely to receive
Velcade. Velcade, also known
as bortezomib, is classified as
a proteasome inhibitor, and
works in a different way to
chemotherapy.
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Revlimid
A second stem cell transplant
At second relapse, myeloma
patients are most likely to
receive Revlimid. Revlimid, also
known as lenalidomide, is similar
to thalidomide and is classified
as an immunomodulatory
(IMiD) drug.
If you had a good response
and period of remission or
plateau following your first stem
cell transplant, it may be an
option for you to have another
transplant when you relapse. This
option is normally only discussed
if you had greater than 18 months
remission or plateau from your
first stem cell transplant.
Revlimid is given in tablet form,
usually in combination with
the steroid dexamethasone.
Sometimes a chemotherapy drug
such as cyclophosphamide may
also be included.
For more information see the
Revlimid Infoguide from
Myeloma UK.
Third and subsequent relapse
treatment options
There is a promising pipeline
of new anti-myeloma drugs
being looked at in clinical
trials for patients at third and
subsequent relapse (and indeed
all stages of myeloma). Imnovid®
(pomalidomide) and Kyprolis®
(carfilzomib) are two examples
of drugs proven in trials to be
effective in patients at third or
subsequent relapse.
Before a drug can be widely
used, it must first be licensed as
a safe and effective treatment.
Normally, the licensed drug
must then be approved by a UK
drug appraisal body before it
can be routinely prescribed by
NHS doctors. An example of a
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UK drug appraisal body is the
National Institute for Health and
Care Excellence (NICE).
Imnovid received its European
licence for myeloma in 2013.
It then passed to the UK drug
appraisal bodies to be assessed.
Imnovid was approved in
Scotland in late 2014 for use in
myeloma patients with relapsed
and refractory myeloma, who
have previously received both
Velcade and Revlimid. NICE
issued negative guidance on
Imnovid in early 2015. Eligible
myeloma patients in England can
currently access Imnovid through
the Cancer Drugs Fund.
Clinical trials can also offer
myeloma patients access to
promising new drugs which
have not yet been licensed or
approved (see page 54).
There are always a number of
clinical trials ongoing in hospitals
across the UK through which
new anti-myeloma drugs may be
accessed. If you are interested
your doctor will be able to
discuss suitable trials with you.
For more information see the
Myeloma Trial Finder and
Myeloma Drug Finder on the
Myeloma UK website.
Kyprolis is currently going
through the European licensing
process.
For more information see the
Imnovid and Kyprolis Horizons
Infosheets from Myeloma UK.
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Maintenance and
consolidation treatment
Various drugs are currently being investigated as
possible options for maintenance or consolidation
treatment in myeloma.
Maintenance treatment is given
long-term and aims to prolong
the period of response to
treatment and further decrease
any remaining myeloma cells in
the body. A low dose of Revlimid,
for example, may be given longterm in certain patients following
initial treatment.
although results have still to
be confirmed with respect
to extending patients’ lives.
Furthermore, not all patients will
benefit from maintenance or
consolidation treatment and any
potential benefits must always
be balanced against the potential
side-effects that may occur.
Consolidation treatment is given
over a shorter period with the
aim of maximising the response
to initial treatment.
Despite the potential to improve
patient outcomes, further
evidence is needed about
maintenance/consolidation
treatment in terms of what drug
is best, the dose and the duration
of treatment before it can be
incorporated into routine UK
clinical practice.
At present, the benefits of
maintenance or consolidation
treatment are still a little unclear
– data from several studies
show that both can improve
response to treatment and the
length of remission/plateau,
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Myeloma research, new treatments
and clinical trials
Over the past few years, new developments in the
treatment and management of myeloma have had
a significant impact on the way myeloma is treated.
Research is continuing to develop new treatments
and to use existing treatments in a better, more
effective way.
The key goals of current
myeloma research include:
can be banked and used for
research purposes.
■ Giving each patient the best
Clinical trials are planned
research investigations in which
patients take part. They are
intended to test new drugs or
new combinations of current
drugs, or to compare different
ways of using current drugs. The
treatments that are available
today are only available because
patients took part in clinical trials
in the past.
treatment for their diseasespecific and individual needs
■ Overcoming resistance to
treatment
■ Developing better drugs with
fewer side-effects
■ Identifying new targets for
treatment
■ Preventing the onset and
progression of myeloma
■ Finding a cure
Myeloma patients can help
research by taking part in clinical
trials and donating blood and
bone marrow samples so these
54
There is a promising pipeline of
new anti-myeloma treatments
currently being looked at in
clinical trials, including newer
versions of IMiDs (e.g. Imnovid)
and proteasome inhibitors
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(e.g. Kyprolis), as well as new
types of drugs such as histone
deacetylase inhibitors and
monoclonal antibodies.
As more is discovered about
these new treatments, their role
alongside existing treatments will
become clearer. In time, if they
are proved to be more effective
and safer, they may replace some
of the existing treatments.
To keep informed about
new treatments in myeloma
and those in development,
subscribe to our free, quarterly
magazine Myeloma Matters by
calling 0131 557 3332 or visit
www.myeloma.org.uk.
Studying the genetic changes
that occur in myeloma cells is
fundamental to understanding
more about how best to
treat and manage myeloma.
Understanding more about the
genetics of myeloma will fuel
the development of new, more
effective and targeted drugs and
diagnostic tests that will underpin
a future where treatment can be
tailored to different subgroups
of patients.
Infoline: 0800 980 3332
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Living well with myeloma
Being diagnosed with myeloma affects every patient
differently. At first you might be overwhelmed, in shock
and feel numb. Information may not sink in at this point
but remember, you will have many opportunities to ask
questions again.
Sometimes you might feel totally
in control of your feelings and at
other times strong emotions may
catch you unawares. You may
feel a great deal of fear, anger
and frustration. These feelings
are common and a natural part
of coming to terms with the
diagnosis.
feel optimistic, there may be
other times when you feel
overwhelmed. You may have
difficulty sleeping, become
irritable, or lose interest in the
things that you normally enjoy. It
is important to recognise these
symptoms and to discuss them
with your doctor or nurse.
Learning more about myeloma,
your treatment options and life
after a diagnosis of myeloma can
help to ease these feelings. Those
around you may feel some of
the same things you are feeling
– they will also need support.
Talking together about how you
feel can help.
You may also experience a sense
of relief that you now have an
explanation for the symptoms
you have been experiencing over
recent months.
Many patients experience
depression or anxiety at
some stage in their illness.
Although sometimes you may
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Emotional support
Emotional support is important
in helping you to live well with
myeloma. It is very easy for
patients and family members to
feel isolated and strong emotions
often make it difficult to discuss
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worries or fears. Talking to
someone, such as your specialist
nurse, who understands what
is happening can ease these
feelings of isolation.
To talk to a Myeloma Information
Specialist about any aspect
of myeloma, call the Myeloma
Infoline on 0800 980 3332 or
1800 937 773 from Ireland.
The Myeloma Infoline is open
from Monday to Friday, 9am
to 5pm and is free to phone
from anywhere in the UK and
Ireland. From outside the UK and
Ireland, call +44 (0)131 557 9988
(charged at normal rate).
Counselling
You may find it helpful to talk
to a counsellor. Counsellors
offer you the chance to explore
your feelings and experiences
in a supportive, confidential
environment. A counsellor does
not give you advice but helps
you to develop coping strategies
and find your own answers to
the problems you are facing.
Counselling may not always
be available in your hospital,
but your GP or hospital doctor
should be able to refer you to a
professionally trained counsellor
in your area. Alternatively
you can contact the British
Association for Counselling
and Psychotherapy, for a list of
registered counsellors in your
area. See the ‘Further information
and useful organisations’ section
on page 74 for their contact
details.
Myeloma Support Groups
Support Groups provide an
informal and comfortable
atmosphere in which members
can share experiences and
information. Some Support
Groups are run by patients
and family members, others
by healthcare workers or
professional group facilitators.
If there is not a myeloma group
that meets near to you, there may
be a general cancer/haematology
group that meets locally.
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For details of Myeloma Support
Groups in your area call the
Myeloma Infoline on 0800
980 3332 or 1800 937 773
from Ireland. There is also an
online Discussion Forum on the
Myeloma UK website where you
can connect with others affected
by myeloma, post messages to
the Group, ask questions and
help to support each other. To
join the Discussion Forum go to
www.myeloma.org.uk
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Patient and Family
Myeloma Infodays
Myeloma UK holds regular
Patient and Family Myeloma
Infodays across the UK. These
are full day educational meetings
specifically for patients and
families, where you can learn
about the latest in the treatment
and management of myeloma
from a panel of myeloma
experts. Infodays also provide
the opportunity to meet others
affected by myeloma, to share
experiences and gain support.
For more information contact
Myeloma UK on
0131 557 3332.
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Looking after yourself
Diet and nutrition
Whilst there are no specific
dietary recommendations for
myeloma patients, those who
eat healthily and follow certain
dietary tips can benefit in many
ways. Eating a healthy well
balanced diet will help:
■ Maximise your body’s healing
ability and keep energy levels
high
■ Best prepare your body for
treatment as well as improve
tolerance and response to
treatment
■ Manage some side-effects
of treatment
■ Improve your quality of life
There will be times when
you may need to pay greater
attention to the foods you eat.
For example, you may need to
alter your diet if your immune
system is compromised and your
white cell count is low because
you are at increased risk of
picking up an infection. If you
are immunocompromised, you
will be advised to be very careful
about food hygiene and also to
avoid certain types of food such
as shellfish, paté, unpasteurised
dairy products and raw or
undercooked eggs.
Infection
Infection is more common in
myeloma patients because
myeloma and its treatment can
reduce your white blood cell
count, which affects your ability
to fight infection. Don’t shut
yourself away from people but do
take a common sense approach
to minimise the risk of infection
whilst maximising the benefits of
being close to family and friends.
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Exercise
Being physically active can
improve your physical and
emotional ability to carry
on with day-to-day life
whilst increasing your
confidence and
enjoyment of social
activities. The most
important thing for
you to think about when
planning any sort of exercise
is the effect it might have on
your bones.
For more information see
the Living Well with Myeloma
– Your Essential Guide from
Myeloma UK.
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Questions for your
doctor/medical team
Diagnosis
■ What tests will I need to have?
■ When will I get the results?
■ Will I need to have treatment?
■ What is the treatment likely to
be?
■ Are my bones affected?
■ Are my kidneys affected?
■ Who will be my main point of
contact at the hospital from
now on?
■ How successful has this
treatment been in the past?
■ Will a hospital visit/stay be
needed?
■ How will I feel before, during
and after this treatment?
■ Will there be side-effects, when
will I experience them and how
long will they last?
■ Will treatment affect my
chances of having children in
the future?
Treatment
After treatment
■ What are my treatment
■ How often will I have check-ups
options?
■ Can I choose which treatment
to have?
■ What would happen if I chose
not to have this treatment?
■ Is this treatment part of a
and blood tests?
■ Will I receive any supportive
treatments, e.g. a
bisphosphonate?
■ How will I know if the myeloma
has come back?
clinical trial?
■ How is the treatment given,
how long will it take?
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Carers
Tips
Carers often have different
information needs. If you are
a carer you will want to know
what you will need to do for
your family member/friend. You
may want to ask the following
questions:
■ Carry paper and a pen with
■ Will they require a stay in
■ Take someone with you to your
hospital and for how long?
■ Will they require a lot of
looking after?
■ What kind of quality of life do
you expect them to have?
■ Who can I call in an
emergency?
■ Are we eligible for any benefits
from the Government?
For more information see
the Caring for someone with
myeloma Infoguide from
Myeloma UK.
you to write down questions as
they occur to you
■ Give your doctor a list of the
questions you have written
down at the beginning of your
appointment
appointments, both as moral
support and for an extra
‘listening ear’
■ Don’t be afraid to ask for extra
time to make a decision about
treatment; you may want to
discuss things with family and
friends first
■ Always tell your doctor if you
are taking any medications you
have bought over the counter
(without a prescription), or
any vitamins, supplements or
complementary therapies you
are using
■ Tell your doctor if you are
experiencing any side-effects
or new symptoms
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Self-help checklist
■ Learn about myeloma
and its treatment – order
free information from
Myeloma UK or download
from the Myeloma UK website
www.myeloma.org.uk
■ Join a Support Group – it can
help to talk to other patients and
relatives about how you feel
■ Call the Myeloma Infoline
on 0800 980 3332 or
1800 937 773 from Ireland
for information and emotional
support
■ Find out from your GP which
support services and benefits
are available and ask for help if
you need it
■ Ask for a contact name and
number for a member of staff
in your medical team and keep
the number handy
■ Describe symptoms simply
and accurately to your doctor
or nurse – do not underplay
them or assume they are
not important. Try keeping
a Patient Diary of your
symptoms
■ Take all medication as agreed
– use a chart or a segmented
pillbox (you can buy one of
these at your local chemist) to
help you remember what to
take and when
■ Bring any side-effects to
the attention of your doctor
or nurse
■ Try to drink two to three litres
of fluid each day
■ Put aside time for rest and
relaxation; make getting
enough sleep a priority
■ Be aware of ongoing signs of
depression and anxiety and
speak to your GP about them
■ Try to do something that you
enjoy every day
■ Think positively, but allow
yourself to have ‘off days’
■ If you are a carer, make sure
you take care of your own
health, and take some time for
yourself each day
Order your free Patient Diary
from Myeloma UK.
Infoline: 0800 980 3332
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Medical terms explained
Adriamycin® (doxorubicin): A
type of chemotherapy drug.
Allogeneic stem cell transplant:
A procedure in which stem
cells from a compatible
donor (usually a sibling) are
collected, stored and given to
the patient following high-dose
chemotherapy.
Anaemia: A decrease in the
normal number of red blood
cells, or the haemoglobin that
they contain, causing shortness
of breath, weakness and
tiredness.
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.
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Antibiotics: Drugs used to
prevent or treat an infection
caused by bacteria.
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
of the immune system to destroy
and remove them, thereby
helping to fight infection.
Apheresis: A procedure in which
stem cells are collected from
the blood using a machine that
separates them out and returns
the remainder of the blood
components to the patient or
donor.
Autologous stem cell transplant:
A procedure in which a
patient’s own stem cells are
collected, stored and then
given back following high-dose
chemotherapy.
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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.
Bence Jones proteins: Free light
chains that have been filtered
from the blood by the kidney
and are found in the urine. The
presence of any Bence Jones
protein is abnormal.
Beta 2 microglobulin (ß2M): A
small protein found in the blood.
High levels occur in patients with
active myeloma.
Bisphosphonate: Drugs used
to protect bone from being
broken down. Commonly
used bisphosphonates include
Bonefos® (sodium clodronate),
Aredia® (pamidronate) and
zoledronic acid (formerly known
as Zometa®).
Bone marrow tests: The removal,
by a needle, of a sample of cells/
fluid from the bone marrow. The
cells are examined to see whether
they are cancerous. If cancerous
plasma cells are found, the
pathologist estimates how much
of the bone marrow is affected.
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.
Carfilzomib (Kyprolis®): A type
of drug called a proteasome
inhibitor.
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).
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Chromosomes: The body
has tens of thousands of
genes packaged in a precise
way in structures known as
chromosomes. The entire
genetic material of humans
is arranged in 23 pairs of
chromosomes and each cell in
the body contains all 23 pairs.
One chromosome in each pair
is inherited from your mother
and one is inherited from your
father.
Clinical trial: A research study
of new or existing treatment that
involves patients. Trials may be
designed to find better ways
to prevent, detect, diagnose, or
treat a condition or to answer
specific scientific questions.
Computerised tomography
(CT or CAT scan): A CT scan
combines the X-ray procedure
with a specialised computer to
create detailed cross-sectional
images of the body.
Dexamethasone: A type of drug
called a steroid. Often given
alongside other drugs in the
treatment of myeloma.
Dialysis: When a patient’s
kidneys are unable to filter blood,
the blood is cleaned by passing it
through a dialysis machine.
DNA: Stands for
deoxyribonucleic acid. It is the
hereditary material in humans
and almost all other organisms.
DNA is in every cell of the body
and directs their actions.
Doxorubicin (Adriamycin®): A
type of chemotherapy drug.
Engraftment: The process by
which transplanted stem cells
travel to the recipient’s bone
marrow, where they begin to
grow and develop into new blood
cells. During this time the number
of red blood cells, white blood
cells and platelets in the blood
may be lower than normal.
Cytokine: Proteins produced
by cells of the immune system
that act as chemical messengers
between cells. Cytokines can
stimulate or inhibit the growth
and activity of various immune
cells in response to the particular
type of disease present.
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Erythropoietin (EPO): A
hormone produced by the
kidneys, which is involved in
the production of red blood
cells. Injections with synthetic
erythropoietin (EPO) may be
beneficial for patients with
damaged kidneys if they are not
producing enough erythropoietin
and are becoming anaemic.
Extramedullary plasmacytoma:
A collection of myeloma cells
found in a single location in the
soft tissue. Soft tissue refers to
tissue that support, connect or
surround organs and bone. This
includes tendons, ligaments,
muscle, fat, skin, fibrous tissue,
nerves and blood vessels.
Freelite™ test: The brand name of
the Serum Free Light Chain Assay,
a sensitive test used to detect and
measure the type and amount of
free light chains in the blood.
Free light chain: Part of an
antibody that circulates freely in
the blood.
Graft-versus-host disease
(GVHD): A complication that can
occur after an allogeneic stem
cell transplant in which the newly
transplanted donor cells attack
the patient’s own tissue.
Graft-versus-myeloma effect:
A beneficial reaction of donated
stem cells against myeloma cells.
Histone deacetylase (HDAC)
inhibitor: Drugs used to block
the action of histone deacetylase
in myeloma cells, preventing their
growth and survival.
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.
Genes: Genes are made up of
strands of DNA. Essentially, they
are sets of instructions which
together make up the blueprint of
life that determines how the body
develops, grows and functions.
Infoline: 0800 980 3332
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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.
Immunomodulatory drug:
Drugs used to act on the body’s
immune system.
Imnovid® (pomalidomide): A
type of immunomodulatory drug.
Induction treatment: The initial
standard-dose chemotherapy
that patients receive as part
of the stem cell transplant
procedure. Induction treatment
aims to reduce the amount of
myeloma in the bone marrow
before the stem cells are
collected.
Kyprolis® (Carfilzomib): A type
of drug called a proteasome
inhibitor.
Lenalidomide (Revlimid®): A
type of immunomodulatory drug.
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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.
Magnetic resonance imaging
(MRI): MRI involves a
combination of radio-waves,
a powerful magnetic field and a
computer to produce images of
any organ or tissue. An MRI scan
generates very detailed crosssectional images of the area
under investigation.
Melphalan: A type of
chemotherapy drug.
MGUS: Monoclonal Gammopathy
of Undetermined Significance
is a non-cancerous precursor
condition to myeloma in which
there is a paraprotein present in
the blood. There are, however,
no symptoms and the risk
of transition from MGUS to
myeloma is very low; only a 1%
chance per year of follow-up.
Mini-allogeneic transplant: A
type of allogeneic transplant
that uses lower doses of
chemotherapy than the standard
allogeneic transplant.
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Monoclonal antibodies:
Monoclonal antibodies mimic
the antibodies that the immune
system produces in response
to foreign organisms, such
as bacteria. Each group of
monoclonal antibodies is made
up of identical copies of one type
of antibody. They are synthetic
drugs designed to recognise, and
attach to, specific proteins on the
surface of cancer cells.
Myeloma bone disease: One
of the most common and
debilitating complications of
myeloma. Bone disease in
myeloma is brought about
by the myeloma cells in the
bone marrow which affect the
surrounding bone and cause the
bone to be broken down faster
than it can be repaired.
Paraprotein: An abnormal
antibody (immunoglobulin)
produced in myeloma.
Measurements of paraprotein
in the blood can be used to
diagnose and monitor the disease.
bone cement into the vertebra to
stabilise and strengthen it.
Peripheral neuropathy: Damage
to the nerves that make up
the peripheral nervous system
causing pain, tingling and altered
sensation.
Plasma cell leukaemia: A cancer
characterised by unusually high
levels of abnormal plasma cells
in the blood. It can start by itself
or it can evolve from advanced
myeloma.
Plasma cells: Specialised
white blood cells that produce
antibodies (immunoglobulins) to
fight infection.
Plateau: A period of time
when the myeloma, and the
paraprotein level, is relatively
stable.
Platelets: Small blood cells which
are involved in blood clotting.
Pomalidomide (Imnovid®): A
type of immunomodulatory drug.
Percutaneous Vertebroplasty:
A procedure used to repair/
stabilise a compression fracture
in one or more vertebrae and to
relieve pain. It involves injecting
Infoline: 0800 980 3332
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Prednisolone: A type of drug
called a steroid. Often given
alongside other drugs in the
treatment of myeloma.
Prognostic marker: A
characteristic that gives
an indication of the likely
progression of a disease
among patients with the same
characteristic.
Proteasome inhibitor: A type
of drug that interferes with the
normal functioning of part of a
cell called the proteasome. This
causes abnormal cells to die
while leaving normal, healthy cells
less affected.
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.
Radiotherapy: Treatment with
X-rays, gamma rays, or electrons
to damage or kill malignant cells.
Red blood cells: Blood cells
which transport oxygen around
the body.
Refractory: Disease that has
failed to respond to treatment.
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Relapse: The point where disease
returns or becomes more active
after a period of remission or
plateau (often referred to as
stable disease).
Remission: The period following
treatment when myeloma cells
and paraprotein are no longer
detectable, and there are no
clinical symptoms of myeloma.
Revlimid® (lenalidomide): A type
of immunomodulatory drug.
Smouldering myeloma: An early
form of myeloma which usually
progresses at a slow rate.
Side-effects: The undesired
effects caused by a drug or
treatment, for example fatigue or
nausea.
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.
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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
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.
White blood cells: Blood cells
involved in the body’s immune
system, which help to fight
infection.
Infoline: 0800 980 3332
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Appendix 1: Blood tests
and normal ranges
Blood tests
Test name
Normal range*
Notes
Full blood count
White cell count
4.0 – 11.0 (x 109 /L)
A low count makes you less able to
fight infections
Haemoglobin
(men)
135 – 180 (g/L)
A low haemoglobin level causes
anaemia and fatigue
Haemoglobin
(women)
115 – 160 (g/L)
Platelets
150 – 400 (x 109/L)
A low count makes you bruise or bleed
easily
Absolute
Neutrophil Count
1.5 – 7.5 (x 109/L)
A low count makes you less able to
fight infection
Urea
2.5 – 6.7 (mmol/L)
Measure of kidney function
Creatinine
70 – 150 (mol/L)
Measure of kidney function
Calcium (total)
2.12 – 2.6 (mmol/L)
Raised by myeloma bone disease
Paraprotein
0 (g/L)
Abnormal protein found in certain
conditions, including myeloma
Total protein
60 – 80 (g/L)
Often raised in myeloma because of
amount of paraprotein
Albumin
35 – 50 (g/L)
Often lowered in myeloma because of
presence of paraprotein
Kappa () light
chain
3.3 - 19.4 (mg/L)
Lambda () light
chain
5.71 – 26.3 (mg/L)
Urea, electrolytes
and creatinine
Proteins
Part of an immunoglobulin (antibody).
Levels are often raised in myeloma,
with an abnormal ratio (normal ratio is
0.26 to 1.65)
* The normal range is an average, but each hospital laboratory has its own ‘normal range’ of values.
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Explanation of units
g/L
number of grams there are in a litre of blood
x 1012/L
number of billion cells there are in a litre of blood
mmol/L
number of thousandths of a mole** in a litre of blood
umol/L
number of millionths of a mole** there are in a litre of blood
**mole
a standard measurement for the amount of any chemical
Please note that doctors do not use a litre of blood to make these
measurements; they just take a small sample (a few millilitres) and
then multiply up the results.
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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.
OvercomeDepression
www.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.
Relate
www.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.
Samaritans
www.samaritans.org
116 123 (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.
Scope
www.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.uk
www.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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www.myeloma.org.uk
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Ireland
ACCORD
www.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.
MyMyeloma
www.mymyeloma.ie
Dedicated Irish myeloma website for patients, family members and
those with an interest in myeloma.
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www.myeloma.org.uk
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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
terly
magazine offers a mix of the latestt news in
research and development for myeloma,
yeloma,
and patient and family experiences.
es.
88
www.myeloma.org.uk
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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
ma
symptoms and complications of myeloma
gue.
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, travell
a.
insurance and caring for someone with myeloma.
Related
conditions
Information on conditions related to myeloma,,
including MGUS, plasmacytoma, smouldering
myeloma and AL amyloidosis.
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www.myeloma.org.uk
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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
ce
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
92
www.myeloma.org.uk
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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
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Notes
94
www.myeloma.org.uk
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Published by: Myeloma UK
Publication date: September 2006
Last updated: June 2015
Review date: June 2017
® HICKMAN Catheter is a registered trade mark of
C.R.Bard, Inc
Myeloma UK publications are extensively reviewed by
patients and healthcare professionals prior to publication.
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Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG
T: 0131 557 3332E: [email protected] No: SC 026116
Myeloma Infoline: 0800 980 3332 or
1800 937 773 from Ireland
www.myeloma.org.uk
Myeloma Awareness Week 21 - 28 June
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