Download Balloon Kyphoplasty

Balloon
Kyphoplasty
Myeloma
Infoguide
Series
Treatments
and tests
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This Infoguide has been made possible thanks to the generosity
of Myeloma UK supporters.
To find out how you can support our vital work call 0131 557 3332
or email [email protected]
Myeloma Infoline: 0800 980 3332 or
1800 937 773 from Ireland
www.myeloma.org.uk
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Contents
4 Introduction
6 What is myeloma?
9 Treatment for myeloma
– the basics
10 What is myeloma bone
disease?
12 W
hat are vertebral
compression fractures?
13 Preventative and non-surgical
treatment options for vertebral
compression fractures
15 S
urgical treatment options
for vertebral compression
fractures
16 T
he Balloon Kyphoplasty
procedure
18 Who might benefit from
Balloon Kyphoplasty?
19 W
hat to expect when receiving
Balloon Kyphoplasty treatment
21 D
oes Balloon Kyphoplasty
work and where is it available?
23 Future directions
24Medical terms explained
27 Further information and
useful organisations
42About Myeloma UK
44Information available from
Myeloma UK
45Other publications
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 Infoguide is written for myeloma patients. It may
also be helpful for their families and friends. It provides
information on a minimally invasive surgical procedure
for the treatment of vertebral compression fractures
called Balloon Kyphoplasty.
It aims to:
■■ Provide you with information
about Balloon Kyphoplasty
■■ Describe the procedure and
what it involves
■■ Answer some questions you
Some of the more technical or
unusual words appear in bold the
first time they are used and are
described in the Medical terms
explained section on page 24.
might have about Balloon
Kyphoplasty
■■ Help you make informed
decisions about your treatment
and care
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For more information
Myeloma UK provides a wide
range of information covering
all aspects of the treatment and
management of myeloma.
The Myeloma Infoline is open
from Monday to Friday, 9am to
5pm and is free to phone from
anywhere in the UK and Ireland.
For a full publication list
visit www.myeloma.org.uk/
publications
From outside the UK and
Ireland, call +44 (0)131 557 9988
(charged at normal rate).
To order your free copies contact
Myeloma UK. Our information is
also available to download at
www.myeloma.org.uk
Information and support about
myeloma is also available around
the clock at www.myeloma.org.uk
To talk to one of our Myeloma
Information Specialists about
any aspect of myeloma, call
the Myeloma Infoline on
0800 980 3332 or
1800 937 773 from Ireland.
Infoline: 0800 980 3332
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What is myeloma?
Myeloma, also known as multiple myeloma, is a type of
cancer arising from plasma cells that are normally found
in the bone marrow. Plasma cells are a type of white
blood cell which forms part of the immune system.
Normal plasma cells produce
different types of antibodies
(also called immunoglobulins) to
help fight infection. In myeloma,
the plasma cells become
malignant and release only
one type of antibody, known as
paraprotein, which has no useful
function. It is often through the
measurement of paraprotein
that myeloma is diagnosed and
monitored.
Bone marrow is the ‘spongy’
material found in the centre of
the larger bones in the body.
As well as being home to plasma
cells, the bone marrow is where
blood cells (red blood cells,
white blood cells and platelets)
are made (see Figure 1).
Red
blood cells
White
blood cells
Lymphocyte
Bone marrow
Natural killer cell
Plasma cell
Monocyte
Blood
stem cell
Neutrophil
Eosinophil
Basophil
Platelets
Figure 1. Bone marrow – responsible for the production of blood cells
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These all originate from blood
stem cells. Plasma cells normally
make up less than 5% of the total
blood cells in the bone marrow.
Myeloma affects multiple places
in the body (hence the term
‘multiple myeloma’) where bone
marrow is normally active i.e.
within the bones of the spine,
pelvis, rib cage and the areas
around the shoulders and hips.
The areas usually not affected are
the extremities – the hands and
feet – as the bones here do not
contain bone marrow.
Most of the complications and
symptoms of myeloma are
caused by a build-up of myeloma
cells in the bone marrow and the
presence of paraprotein in the
blood or in the urine.
Common problems include bone
pain, bone fractures, tiredness
due to anaemia, frequent or
recurrent infections (such as
chest infections, urinary tract
infections and shingles), kidney
damage and hypercalcaemia.
Myeloma most commonly occurs
in people later in life i.e. over
the age of 65. However, some
myeloma patients are younger.
It is also slightly more common
in men than in women.
The causes of myeloma are
poorly understood but it is
believed to be caused by an
interaction of both genetic and
environmental factors.
There are thought to be multiple
environmental factors which may
increase the risk of developing
myeloma. Exposure to specific
chemicals, radiation, viruses and
a weakened immune system
are considered important
trigger factors.
It is likely that myeloma develops
when a susceptible (at risk)
individual has been exposed
to one or probably several of
these factors.
Infoline: 0800 980 3332
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There is a slight tendency for
myeloma to occur in families.
Although rare, this suggests
there is an inherited genetic
factor in myeloma. This alone is
not enough to cause myeloma
but may make an individual at a
slightly higher risk of developing
myeloma – other environmental
factors also need to have an
impact before it develops.
In the majority of cases, however,
the causes of myeloma are
unclear and are likely to be
unique to each patient.
Much research is ongoing into
the biology and genetics of
myeloma to determine the
factors responsible for its onset
and progression.
Basic facts
■■ There are approximately
4,800 people diagnosed with
myeloma every year in the UK
■■ There are approximately
15,000 – 20,000 people living
with myeloma in the UK at any
one time
■■ Myeloma accounts for 15%
of blood cancers and 1% of
cancers generally
■■ Myeloma mostly affects people
aged 65 and over but it has
been diagnosed in people as
young as 20
For more information see the
Is myeloma an inherited cancer?
Infosheet from Myeloma UK.
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Treatment for
myeloma – the basics
Treatments for myeloma can be very effective at
controlling the disease, reducing symptoms and
improving quality of life but, as yet, they are not
curative. In general, treatment is given to:
■■ Reduce the levels of myeloma
as far as possible
■■ Control the myeloma for as
long as possible when given as
maintenance treatment
■■ Control the myeloma if it has
come back again (relapse)
■■ Relieve the symptoms and
reduce the complications the
myeloma is causing
■■ Improve quality of life
■■ Prolong life
It is important to note that
not everyone diagnosed with
myeloma will need to start
treatment immediately and it is
usual to wait until the myeloma is
actively causing symptoms and
complications before starting
treatment. Treatment for myeloma
is often most effective when two
or more drugs, with different but
complementary mechanisms of
action, are given together.
In the past the number of
treatment options for myeloma
was limited but, with the
development of newer treatments
in the last decade, there are now
more options available.
Before starting treatment, each
option must be considered carefully
so that the benefits of treatment
are weighed against the possible
risks of side-effects. In most
patients, overall health, age, fitness
and any previous treatments will be
taken into account.
The length of treatment varies
depending on the type of
treatment(s) being used and the
stage at which the treatment
is being given. Treatment is
usually given over a number of
weeks which may or may not be
followed by a rest period. This
pattern constitutes one cycle
of treatment and a series of
treatment cycles is referred to as
a course of treatment.
Infoline: 0800 980 3332
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What is myeloma bone disease?
Myeloma bone disease is the most common and often
most debilitating feature of myeloma and bone pain is
a very common symptom.
Between 70 – 80% of patients
have evidence of myeloma bone
disease at the time of diagnosis
and approximately 90% of
patients have myeloma bone
disease at some point during the
course of their myeloma.
Myeloma bone disease is due to
the myeloma cells in the bone
marrow affecting the surrounding
bone, causing the bone to be
broken down faster than it can
be repaired.
Although bone is made up
of minerals and is hard, it is
still a living tissue containing
blood vessels, nerves and cells,
including two very important cell
types which play a key role in the
normal activity of bones.
These are:
■■ Osteoblasts (cells which form
new bone)
■■ Osteoclasts (cells which break
down old bone)
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Osteoblasts and osteoclasts work
together to sustain a continuous
cycle of bone formation and
breakdown keeping the bone
in a constant state of renewal
throughout life. This ongoing
process is known as bone
remodelling (see Figure 2) and
maintains the thickness, strength
and health of bones in the body.
Normally, the rate of bone
formation and the rate of bone
breakdown are equal, so that the
bone mass remains the same.
Myeloma can interfere with this
process resulting in a net loss
of bone. Specifically, myeloma
cells produce substances known
as cytokines and growth factors
which increase the production
and activity of osteoclasts, and at
the same time reduce the activity
of osteoblasts.
The extent of myeloma bone
disease varies considerably from
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patient to patient. It most often
occurs in the middle or lower back,
the hips and the rib cage. The
long bones of the upper arm and
leg and the shoulder may also be
involved but the bones of the hands
and feet are normally spared.
Affected areas of bone often
appear as ‘holes’ on an X-ray.
These ‘holes’ are called lytic
lesions. They represent thinned
and weakened bone, increasing
the risk of breaks without undue
force or injury – this is called a
pathological fracture.
Resorption
Osteoclasts break
down bone mineral
and matrix creating
an erosion cavity
Resting
A prolonged resting
period follows until
a new remodelling
cycle begins
The thinning of the vertebrae
(bones of the spine) can also result
in fractures. This is described in
more detail on page 12.
For more information see the
Myeloma Bone Disease and
Bisphosphonates Infoguide
from Myeloma UK.
Reversal
Mononuclear cells
prepare bone surface
for new osteoblasts to
begin building bone
Formation
Osteoblasts form
a matrix to replace
resorbed bone with
new bone
Figure 2. Process of normal bone remodelling
Infoline: 0800 980 3332
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What are vertebral
compression fractures?
Myeloma bone disease in the spine can cause thinning
of the vertebrae and, as the spine bears much of the
weight of the body, this can result in fractures.
This is known as a vertebral
compression fracture (VCF).
VCFs often result in loss of height
and/or curvature of the spine
known as kyphosis, as well as
pain (see Figure 3).
Myeloma patients with kyphosis
have an increased risk of
developing further VCFs, making
their kyphosis and associated
pain progressively worse.
In some cases, kyphosis can
lead to height loss, mobility and
breathing problems, chronic
pain and a reduced appetite
due to bloating and/or bowel
obstruction.
Figure 3. Comparison of normal and fractured vertebrae
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Preventative and non-surgical
treatment options for vertebral
compression fractures
The non-surgical treatment options for VCFs caused by
myeloma bone disease include pain-killers (analgesics),
radiotherapy treatment, bisphosphonates and, in some
cases, spinal support using back braces.
Pain-killers
Bisphosphonates
To help relieve pain caused
by VCFs, mild pain-killers are
available over the counter, while
stronger pain-killers can only
be obtained with a prescription.
Treatment with pain-killers will
not prevent further VCFs.
Bisphosphonates are commonly
used in the treatment of myeloma
bone disease. Bisphosphonates
are small molecules that bind
to calcium and as a result are
taken up into bone. They inhibit
the activity of osteoclasts and
therefore interrupt the increased
bone breakdown.
Myeloma patients should not
use over the counter nonsteroidal anti-inflammatory drugs
(NSAIDs) such as ibuprofen
(Nurofen®), due to the increased
risk of kidney damage.
Bisphosphonate treatment
has several potential beneficial
effects including:
■■ Preventing/slowing down
further bone breakdown
For more information see the
Pain and myeloma Infoguide
from Myeloma UK.
■■ Reducing bone pain and the
need for pain-killers
■■ Preventing and correcting high
levels of calcium in the blood
(hypercalcaemia)
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■■ Reducing the need for
radiotherapy
■■ Reducing the likelihood of
pathological fractures due to
myeloma bone disease
■■ Improving quality of life,
particularly by decreasing pain
and maintaining mobility
■■ Improving the chances of
healing and recovery of
strength of bone
For more information see the
Myeloma Bone Disease and
Bisphosphonates Infoguide
from Myeloma UK.
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Radiotherapy treatment
Radiotherapy treatment is used
to provide short-term pain relief
and may also reduce the risk
of further VCFs by limiting the
growth of myeloma in the spine.
It may take several days for
radiotherapy treatment to relieve
pain, so pain-killers are still
needed. Radiotherapy treatment
alone does not stabilise VCFs.
For more information see the
Radiotherapy Infosheet from
Myeloma UK.
www.myeloma.org.uk
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Surgical treatment options for
vertebral compression fractures
Two surgical procedures are available for the treatment
of VCFs. Both Percutaneous Vertebroplasty and
Balloon Kyphoplasty help to alleviate back pain from
VCFs. In addition, in some cases Balloon Kyphoplasty
is able to correct kyphosis and restore lost height. Both
procedures are normally performed by a specialist
spinal surgeon or interventional radiologist.
Percutaneous Vertebroplasty
Percutaneous Vertebroplasty is
used to repair VCFs and to relieve
pain. It involves the injection of
a small amount of bone cement
through a hollow tube (cannula)
into the vertebra to restore its
strength. This technique helps to
alleviate pain, improve function
and mobility but does not restore
height. Up to two or three vertebrae
can be treated at one time.
For more information see the Percutaneous
Vertebroplasty Infosheet from Myeloma UK.
Balloon Kyphoplasty
Balloon Kyphoplasty is a similar
procedure to Percutaneous
Vertebroplasty but in addition
to stabilising VCFs, aims to
reshape and restore the height
of the damaged vertebra. This is
achieved by inserting a balloon
into the fractured vertebra and
inflating it before the cement is
inserted. This helps restore the
vertebra to its original shape,
before strengthening with cement.
Although similar, Percutaneous
Vertebroplasty and Balloon
Kyphoplasty are not
interchangeable and useful
in different clinical situations.
Therefore, doctors are very
careful in deciding who might
benefit from these procedures.
The following sections provide
more detailed information about
Balloon Kyphoplasty.
Infoline: 0800 980 3332
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The Balloon Kyphoplasty procedure
Balloon Kyphoplasty is a minimally invasive surgical
procedure that uses a small balloon called an inflatable
bone tamp to expand the vertebra before cement is
inserted to stabilise the fracture.
The four basic steps in this procedure are described below:
Step 1: Balloon placement
Two small skin punctures are made in the back
to create a route into the collapsed vertebra.
Two small inflatable bone tamps are inserted
through the incisions on either side of the
fractured vertebra.
Step 2: Balloon inflation and cavity creation
The balloons are carefully inflated to raise the
body of the collapsed vertebra and to return it
to its normal shape as much as possible.
The balloons are then deflated and removed,
leaving a cavity within the vertebra.
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Step 3: Cavity fill
The resulting cavity is filled with a precise amount
of quick-setting bone cement to support the
vertebra and prevent further collapse. The
bone cement is inserted under low pressure in a
controlled manner. This is done to minimise the
risk of cement leakage.
Step 4: Internal cast
The bone cement hardens and forms an internal
cast which stabilises the vertebra and restores its
shape and strength.
The procedure is assisted by
fluoroscopy to help guide the
balloon tamp and cement.
A vertebra can take up to one
hour to fix but more than one
can be done at a time if required.
Before the procedure, you will
have X-rays and MRI scans to
determine the precise location,
type and shape of the fracture.
Balloon Kyphoplasty can be
performed under local or general
anaesthesia – you and your
doctor can decide which option
is best for you.
Balloon Kyphoplasty can be
performed as a day-case
procedure or may involve a
night stay in hospital. Little or
no post-operative rehabilitation
is necessary and mobility is
quickly restored.
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Who might benefit from
Balloon Kyphoplasty?
Balloon Kyphoplasty is not
suitable for all myeloma patients
with VCFs.
In general, more conservative
treatments will usually be tried
first (see page 13). Balloon
Kyphoplasty may then be
suggested depending on the
location of the pain, the type of
vertebral compression fracture
and the time elapsed since the
fracture occurred.
Balloon Kyphoplasty may be the
right option for you if:
■■ Conventional treatments for
relieving pain due to VCFs
(e.g. pain-killers) have been
tried and are no longer
effective i.e. your pain has
persisted for more than two
months following conventional
treatment
■■ Other causes for your
continuing pain, such as other
underlying medical conditions,
have been excluded
Balloon Kyphoplasty is not likely
to be the best option if you have:
■■ A very unstable VCF that
■■ Old VCFs (i.e. those that have
occurred over 12 months ago)
■■ Compression of the nerves
around the spinal cord
■■ Underlying conditions that
could make surgery unsafe e.g.
persistently low blood counts
or abnormal blood clotting
■■ An infection in your spine
Balloon Kyphoplasty is best
performed before radiotherapy
which can lead to hardening
of the bone, making it difficult
to carry out the procedure.
However, Balloon Kyphoplasty
may still be considered if the
back pain persists even after
radiotherapy.
If you feel you may benefit
from this procedure, you should
discuss this with your doctor.
Your doctor may need to consult
other healthcare professionals
such as spinal specialists/
neurosurgeons and radiologists
before referring you for Balloon
Kyphoplasty. If it is not suitable
for you, your doctor will discuss
the other options available.
would not repair successfully
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What to expect when receiving
Balloon Kyphoplasty treatment
How long does the procedure last?
This will depend on the number of
vertebrae being treated, but the
procedure typically takes around an hour.
What type of anaesthesia is used?
Balloon Kyphoplasty can be
performed using general
anaesthetic or sedation with
local anaesthetic; you and your
doctor can discuss what is
best for you.
How long will I need to stay
in hospital?
Excluding any unforeseen and
uncommon complications, you
will be able to go home either
the same day or the following day.
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What are the potential benefits
of Balloon Kyphoplasty?
The possible benefits of Balloon
Kyphoplasty include:
■■ Stabilising the VCFs
■■ Helping to reduce chronic back
pain when other treatments
have not been successful
■■ Restoring vertebral shape and,
in some cases, height
■■ Reducing kyphosis and
therefore relieving any
breathing problems or
discomfort to the abdomen
■■ Improving quality of life
What are the potential risks
or side-effects of Balloon
Kyphoplasty?
There are risks associated
with any medical or surgical
20
treatment. However, side-effects
in patients who have had Balloon
Kyphoplasty are uncommon.
Possible short-term risks and
potential side-effects are:
■■ Cement leaking from the
repaired vertebrae, which can
lead to complications including
nerve damage, infection and
blood clots
■■ Post-operative infection. This
has not been reported as
a consequence of Balloon
Kyphoplasty itself, but rather as
a consequence of undetected
infection already present in the
vertebra before surgery
■■ Allergy or other reaction to the
bone cement
■■ Spinal nerve damage
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Does Balloon Kyphoplasty
work and where is it available?
Over one million patients worldwide with different
causes of VCF have been involved in clinical trials
evaluating the use of Balloon Kyphoplasty.
The FREE (Fracture Reduction
Evaluation) clinical trial
represents the largest multicentre
randomised controlled study
of surgical treatment versus
non-surgical care for VCFs. The
results reported that patients
undergoing Balloon Kyphoplasty
showed superior improvement
in back function, back pain and
quality of life compared with
those who had non-surgical
care. The benefits of Balloon
Kyphoplasty were sustained on
average for two years.
Research looking specifically
at the effectiveness of Balloon
Kyphoplasty in myeloma is not
extensive. However, there have
been some clinical trials, and
the most current and applicable
for myeloma patients is the
CAFE (CAncer patient Fracture
Evaluation) study.
The aim of the CAFE study was
to document how myeloma and
other cancer patients with VCFs
cope with day-to-day activities
after being treated with Balloon
Kyphoplasty, as compared with
those treated with non-surgical
options (such as pain-killers and
bed rest).
Infoline: 0800 980 3332
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The CAFE study showed
that one month after surgery,
patients who underwent
Balloon Kyphoplasty reported
a significant improvement in
quality of life, especially in terms
of pain compared with patients
who received non-surgical
treatment.
improved quality of life scores.
For both groups of patients
who underwent Balloon
Kyphoplasty, the improvements
were maintained at the final
assessment 12 months postsurgery.
Patients reported a marked
reduction in back pain and there
was a significant reduction in the
use of pain-killers.
Since the results were so
remarkable with the Balloon
Kyphoplasty group, patients
in the non-surgical treatment
group were given the chance to
transfer and undergo Balloon
Kyphoplasty. These ‘cross-over’
patients also had significantly
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Future directions
Research continues to investigate the effectiveness
of Balloon Kyphoplasty for treating VCFs.
Trials and analyses to date have
shown that Balloon Kyphoplasty
is a safe and effective option
for some patients, and it may
be superior to Percutaneous
Vertebroplasty in patients with
significant height loss due to
VCFs.
If clinical trials continue to
demonstrate the effectiveness
of Balloon Kyphoplasty it should
become a more widely available
and established treatment option
for myeloma patients.
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Medical terms explained
Anaemia: A decrease in the
normal number of red blood cells,
or the haemoglobin that they
contain, causing shortness of
breath, weakness and tiredness.
Antibodies (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.
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®).
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Bone marrow: The soft, spongy
tissue in the centre of bones that
produces white blood cells, red
blood cells and platelets.
Bone remodelling: A normal, life
long process where old bone is
removed from the skeleton and
is replaced by new bone.
Fluoroscopy: Imaging technique
used by surgeons to obtain
real-time moving images of
the internal body systems
of a patient.
Hypercalcaemia: A higher than
normal level of calcium in the
blood, which may cause loss of
appetite, nausea, thirst, fatigue,
muscle weakness, restlessness
and confusion. Often associated
with reduced kidney function
since calcium can be toxic to
the kidneys.
Immune system: The complex
group of cells and organs
that protect the body against
infection and disease.
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Immunoglobulins (antibodies):
Immunoglobulins are proteins
found in the blood which are
produced by plasma cells (cells
of the immune system). They are
made up of two components,
light chains and heavy chains
and their function is to recognise
and bind to foreign antigens
such as bacteria and viruses.
There are five main types of
immunoglobulins which are:
IgA, IgD, IgE, IgG and IgM.
Inflatable bone tamp: A small
balloon that can be inserted into
a fractured vertebra and inflated
during Balloon Kyphoplasty.
Interventional radiologist:
Interventional radiologists
specialise in invasive procedures
such as taking biopsies from
internal organs, opening blocked
arteries and veins, draining
abscesses and cysts and treating
many other conditions and/or
disorders.
Kyphosis: An abnormal curvature
of the spine.
Maintenance treatment:
Treatment given over an
extended period of time, often
at a lower dose, after the main
standard dose of treatment has
finished. Maintenance treatment
aims to reduce the risk of disease
progression.
Malignant: Cancerous cells which
have the ability to invade and
destroy tissue.
Osteoblast: Cells which form
new bone.
Osteoclast: Cells which break
down old bone.
Paraprotein: An abnormal
antibody (immunoglobulin)
produced in myeloma.
Measurements of paraprotein
in the blood can be used to
diagnose and monitor the
disease.
Infoline: 0800 980 3332
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Pathological fracture: A break in
a bone caused by bone disease
or bone cancer, rather than solely
due to trauma.
Plasma cells: Specialised
white blood cells that produce
antibodies (immunoglobulins) to
fight infection.
Platelets: Small blood cells which
are involved in blood clotting.
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.
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.
Vertebra: A bone which forms
part of the spine.
Vertebral compression fracture:
A fracture in one of the vertebra
of the spine.
White blood cells: Blood cells
involved in the body’s immune
system, which help to fight
infection.
Red blood cells: Blood cells
which transport oxygen around
the body.
Relapse: The point where disease
returns or becomes more active
after a period of remission or
plateau (often referred to as
stable disease).
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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.
Infoline: 0800 980 3332
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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.
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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.
Infoline: 0800 980 3332
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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.
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.
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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.
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.
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.
Infoline: 0800 980 3332
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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)
www.icnm.org.uk
0207 922 7980
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.
Leukaemia & Lymphoma Research
www.leukaemialymphomaresearch.org.uk
020 7504 2200
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.
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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 to help make sure that you receive fast, relevant
treatment in an emergency.
National Debtline
www.nationaldebtline.org
0808 808 4000
Offers free, confidential and independent advice on how to deal with
debt problems in England, Wales or Scotland.
Infoline: 0800 980 3332
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National Institute for Health and Care Excellence
www.nice.org.uk
0300 323 0140
NICE is an independent organisation responsible for providing
guidance on promoting good health and preventing and treating ill
health in England. NICE produces guidance on health technologies
(the use of new and existing medicines, treatments and procedures)
and clinical practice (guidance on the appropriate treatment and care
of people with specific diseases) within the NHS.
National Kidney Federation
www.kidney.org.uk
0845 6010 209
The National Kidney Federation provides information about kidney
disease and dialysis, and promotes best practice in renal medicine.
NHS Blood and Transplant
www.blood.co.uk
0300 123 23 23
Provides patient information on blood transfusions, including the
benefits and risks of the procedure.
NHS 111 Service
www.nhs.uk/111
NHS 111 is staffed by a team of fully trained advisors, supported
by experienced nurses and paramedics. You can call 111 when you
need medical advice fast but it’s not a 999 emergency. NHS 111 is
available 24 hours a day, 365 days a year. Calls are free from landlines
and mobiles.
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NHS Choices
www.nhs.uk
NHS Choices is the UK’s biggest health website. It provides a
comprehensive health information service from the National Health
Service on conditions, treatments, local services in England and
healthy living.
OvercomeDepressionwww.overcomedepression.co.uk
OvercomeDepression aims to offer a unique reference point for
information and practical advice on depression.
Pain Association Scotland
www.painassociation.com
0800 783 6059
Pain Association Scotland offers support to people with chronic pain
and organises pain management support groups across Scotland.
Pain Concern
www.painconcern.org.uk
0300 123 0789
Pain Concern provides a range of information about self-help and
managing pain. Its helpline offers information, support and a
listening ear.
Infoline: 0800 980 3332
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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.
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.
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.
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Relatewww.relate.org.uk
0300 100 1234
Relate offers a confidential counselling service for couples or
individuals experiencing difficulties in their relationship. Relate
provides support face-to-face, by phone and through its website.
Samaritanswww.samaritans.org
08457 90 90 90 (24 hours a day, 7 days a week)
Samaritans provides confidential non-judgemental emotional support,
24 hours a day for people who are experiencing feelings of distress or
despair. It offers services by telephone, email, letter and face to face.
Scopewww.scope.org.uk
0808 800 3333
Scope provide support, information and advice to disabled people
and their families, including advice on benefits, equipment, therapies
and respite.
SSAFA (Soldiers, Sailors, Airmen and Families Association)
www.ssafa.org.uk
0800 731 4880
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.
Infoline: 0800 980 3332
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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.
UK Myeloma Forum
www.ukmf.org.uk
The UK Myeloma Forum is an organisation of people professionally
engaged in the field of myeloma who are working to improve the
outlook for patients with myeloma and related disorders. On behalf
of the British Committee for Standards in Haematology, UKMF has
produced guidelines on the diagnosis, treatment and management
of myeloma.
Unbiased.co.ukwww.unbiased.co.uk
0330 100 0755
This is a directory of professional advisers which also, itself, provides
financial, mortgage, legal and accounting information. It is run by an
independent non-profit body.
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Ireland
ACCORDwww.accord.ie
01 505 3112
Caring for marriage and relationships. It is the largest marriage-care
agency in Ireland. ACCORD (formerly known as the Catholic Marriage
Care Service) accepts and values clients irrespective of their religious
or ethnic background.
Association of Registered Complementary
Health Therapists of Ireland
www.irishtherapists.ie
053 938 3734
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.
Infoline: 0800 980 3332
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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.
Citizens Information
www.citizensinformation.ie
0761 07 4000
Citizens Information is provided by the Citizens Information Board, the
statutory body responsible for the provision of information, advice and
advocacy on public and social services.
Irish Cancer Society
www.cancer.ie
1 800 200 700
The Irish Cancer Society provides advice, support and information
to people in Ireland affected by cancer. It also publishes a range of
patient information, including booklets on myeloma.
The Irish Hospice Foundation
www.hospicefoundation.ie
01 679 3188
The Irish Hospice Foundation website includes a directory of hospices
across Ireland.
MyMyelomawww.mymyeloma.ie
Dedicated Irish myeloma website for patients, family members and
those with an interest in myeloma.
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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
magazine offers a mix of the latest news in
research and development for myeloma,
and patient and family experiences.
42
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
symptoms and complications of myeloma
such as myeloma bone disease and fatigue.
Clinical trials
and novel
drugs
Gives information on many of the promising
drugs currently being investigated for the
treatment of myeloma in clinical trials.
Living well
with myeloma
Provides information relating to living well with
myeloma such as diet, managing finances, travel
insurance and caring for someone with myeloma.
Related
conditions
Information on conditions related to myeloma,
including MGUS, plasmacytoma, smouldering
myeloma and AL amyloidosis.
44
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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
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.
46
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
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Notes
48
www.myeloma.org.uk
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Notes
Infoline: 0800 980 3332
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Notes
50
www.myeloma.org.uk
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Published by: Myeloma UK
Publication date: November 2006
Last updated: March 2015
Review date: March 2017
Balloon Kyphoplasty incorporates technology developed
by Gary K. Michelson, MD. Images© Medtronic Ltd used
with permission.
Myeloma UK thanks Michelle Turner, Vanessa Lowe and
John Yeh for their invaluable help and advice in the
compilation of this Infoguide.
All 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 3332 E: [email protected] Charity No: SC 026116
Myeloma Infoline: 0800 980 3332 or
1800 937 773 from Ireland
www.myeloma.org.uk
Myeloma Awareness Week 21 - 28 June
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