Download Myeloma and the kidney

Document related concepts

Organ-on-a-chip wikipedia , lookup

Transcript
Myeloma and
the kidney
Myeloma
Infoguide
Series
Symptoms
and
complications
Kidney Infoguide Nov 2015 FINAL.indd 1
01/12/2015 14:25:19
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
Kidney Infoguide Nov 2015 FINAL.indd 2
01/12/2015 14:25:19
Contents
4 Introduction
6 What is myeloma?
9 T
reatment for myeloma
- the basics
10 What do the kidneys do?
13 Why does myeloma cause
kidney disease?
16 What are the symptoms of
myeloma kidney disease?
17 T
ests used to detect
and monitor myeloma
kidney disease
19 T
he treatment and
management of
myeloma kidney disease
25 Living with myeloma
kidney disease
29 Future directions
30Questions for your
doctor/medical team
31 Medical terms explained
35 Further information and
useful organisations
48About Myeloma UK
50Information available
from Myeloma UK
51 Other publications
52 We need your help
Disclaimer: The information in this Infoguide is not meant to replace the advice of your medical team.
They are the best people to ask if you have questions about your individual situation.
This publication is intended for a UK audience. It therefore may not provide relevant or accurate information
for a non-UK setting.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 3
3
01/12/2015 14:25:19
Introduction
This Infoguide is written for myeloma patients. It may
also be helpful for their families and friends.
It aims to:
„„Help you understand more
about what the kidneys do
and what happens when the
kidneys are damaged
„„Help you understand why
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 31.
and how myeloma affects the
kidneys
„„Provide information on the
symptoms of myeloma kidney
disease and how it is diagnosed
and managed
4
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 4
01/12/2015 14:25:19
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
Kidney Infoguide Nov 2015 FINAL.indd 5
5
01/12/2015 14:25:23
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
6
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 6
01/12/2015 14:25:23
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
Kidney Infoguide Nov 2015 FINAL.indd 7
7
01/12/2015 14:25:23
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.
8
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 8
01/12/2015 14:25:23
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
Kidney Infoguide Nov 2015 FINAL.indd 9
9
01/12/2015 14:25:23
What do the kidneys do?
Most people have two kidneys, one located on either
side of the spine, just below the rib cage. Each kidney
is about the size of a fist and weighs about 160 grams.
Your kidneys are connected to your bladder by tubes
called ureters.
The kidneys carry out many
essential functions, including:
„„Filtering the blood to get rid
of waste products from the
bloodstream
„„Keeping the salt (e.g. sodium
and potassium) and water
content of the body constant
„„Controlling blood pressure
„„Producing a number of
essential hormones
These functions are described
in more detail below.
Waste products
Healthy kidneys filter the
blood to:
„„Remove waste products and
„„Return vitamins, amino acids,
glucose, hormones and other
vital substances back into the
bloodstream
Blood enters each kidney
through the renal artery and
passes through thousands of
tiny filtering systems called
nephrons (see Figure 2). Each
nephron contains a small cluster
of specialised blood vessels
called the glomerulus through
which blood is filtered, and a
tubule which eventually connects
to the bladder. However, not all
components that make up blood
can pass through the glomerulus.
Small molecules such as water
and sodium can, but larger
molecules such as protein cannot.
excess fluid from the body
10
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 10
01/12/2015 14:25:23
Once filtered by the glomerulus,
the remaining fluid passes into
the tubule. Each tubule consists
of a pipe which functions to
process the fluid and produce
urine. The tubules reabsorb vital
substance present back into the
bloodstream. Any substances
and extra water that the body
does not need pass out of
tubules into the ureter, then into
the bladder to be passed out of
the body as urine.
Nephron
Water and electrolytes
For the cells of the body to
work properly, they need a
stable balance of salts (such
as potassium and sodium)
and water.
The salt and water balance of
your body is maintained by a
series of hormones acting on the
kidneys. These hormones control
the amount of urine that the
kidneys produce and what the
kidneys excrete.
Filtered
blood out
Unfiltered
blood in
Unfiltered
blood in
Tubule
Filtered
blood out
Glomerulus
Urine out
Urine out
Kidney cross section
One nephron
Figure 2. Structure of the kidney
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 11
11
01/12/2015 14:25:23
For example, if you do not drink
enough, the body fluids become
more concentrated and the
kidneys excrete less (and more
concentrated) urine. If you drink
an excess of fluid, the body fluids
become more diluted, and the
kidneys excrete more (and more
dilute) urine, getting rid of the
excess that has been taken in.
Essential hormones
The kidneys also produce
hormones and chemicals that are
needed for other normal body
functions. For example:
1. The hormone erythropoietin,
which is essential for the
production of red blood
cells in the bone marrow. If
the kidneys are not working
properly they do not produce
enough erythropoietin, which
can lead to anaemia.
12
2. An active form of vitamin D,
which helps to regulate the
body’s calcium levels and
therefore promote strong,
healthy bones.
3. An enzyme called renin which
plays an important role in
regulating blood pressure.
If the kidneys aren’t working
properly, too much renin can
be produced, increasing blood
pressure and sometimes
resulting in hypertension (high
blood pressure). This is one of
the reasons why it is common
for people with kidney disease
to also have high blood
pressure.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 12
01/12/2015 14:25:23
Why does myeloma cause
kidney disease?
Myeloma kidney disease is a common complication of
myeloma. Up to 20% of patients will have some degree
of kidney disease at diagnosis and a further 40% will
develop kidney disease at some point during the course
of their myeloma.
Myeloma kidney disease can
occur for a variety of reasons.
The abnormal protein produced
by myeloma cells can damage
the kidneys by blocking the
tubules. Other complications of
myeloma, such as dehydration
and a high calcium level
(hypercalcaemia), as well as
some of the drugs used in the
treatment of myeloma, can also
cause or contribute to myeloma
kidney disease.
Light chains and paraprotein
In a healthy immune system,
there are several different
types of immunoglobulin (also
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 3).
A healthy person 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, only
one type of immunoglobulin
(called paraprotein) is produced.
Paraprotein plays no useful role in
the body.
In about 20% of patients, the
myeloma cells produce only light
chains (sometimes called Bence
Jones proteins) and no whole
immunoglobulins at all. This is
called ‘light chain’ or ‘Bence
Jones’ myeloma.
Light chains are also elevated and
measurable in the vast majority
of patients that produce whole
immunoglobulins (paraprotein).
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 13
13
01/12/2015 14:25:23
The excessive amount of
light chains circulating in the
bloodstream in myeloma can
damage the kidneys. When they
enter the kidney they are small
enough to pass through the
glomeruli and into the tubules. In
the tubules, they often combine
with another protein called Tamm
Horsfall protein. Light chains can
bind to Tamm Horsfall protein
in the tubule to produce a big
protein that sticks in and blocks
the tubule, rather than passing
through into the urine. This can
cause severe kidney damage.
In addition to physically blocking
the tubules, light chains are
also directly toxic to the kidney,
causing inflammation to the
kidney tissues and exacerbating
the damage.
Hypercalcaemia
Bone is high in calcium and as it
is broken down, a large amount of
calcium is released into the blood.
Myeloma commonly causes
excess bone breakdown and this
can cause high blood calcium
levels (hypercalcaemia).
Hypercalcaemia most often
Light chain -
‑ Light chain
Heavy chain –
- Heavy chain
Figure 3. Immunoglobulin structure
14
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 14
01/12/2015 14:25:23
presents at the time of diagnosis
but is much less common once
treatment has started. High
levels of calcium in the blood
passing through the kidneys
can damage them.
Dehydration
Dehydration can aggravate
myeloma kidney disease. This
is because if fluid intake is not
sufficient and dehydration
occurs, this can put the kidneys
under additional pressure.
For the majority of myeloma
patients with any degree of
kidney disease at diagnosis,
kidney function can be improved
by keeping up a high fluid intake.
You should try to drink between
two and three litres (three to
five pints) of fluid per day. If you
require dialysis, the amount of
fluid that you can drink may be
restricted, sometimes to around
one litre (a pint and a half) a day.
Medications/myeloma
treatments
Certain medications often used
in the treatment of myeloma
and its symptoms/complications
Kidney Infoguide Nov 2015 FINAL.indd 15
may also affect the kidneys,
aggravating any existing damage.
For example, some
bisphosphonates – used to treat
myeloma bone disease – can
be toxic to the kidneys. This is
because these drugs are removed
from the body via the kidneys
which can put additional strain on
them if they are already damaged.
Therefore bisphosphonates such
as zoledronic acid (formerly
known as Zometa®) are used
with caution and often at lower
doses – or temporarily stopped –
in patients with myeloma kidney
disease.
Non-steroidal anti-inflammatory
drugs (NSAIDs) – such as aspirin
and ibuprofen (Nurofen®) – can
be toxic to the kidneys and are
therefore not recommended for
myeloma patients.
It is important that you
inform your doctor about any
non-prescription drugs, vitamins
or supplements that you may be
taking to ensure that they will
not have any negative effects on
your kidneys.
Infoline: 0800 980 3332
15
01/12/2015 14:25:23
What are the symptoms of
myeloma kidney disease?
When the kidneys are not working properly, harmful
toxins and excess fluids build up in the body, which
causes symptoms.
The symptoms of myeloma
kidney disease may include:
„„Thirst
„„Fatigue
„„Persistent headaches
„„Loss of appetite
„„Nausea and/or vomiting
„„Passing excessive amounts of
urine, or very little or no urine
„„Swelling in the face and ankles
„„Shortness of breath
Many of the symptoms of
myeloma kidney disease are quite
general and might be confused
with symptoms related to other
problems, or side-effects of
myeloma treatments (e.g. fatigue
which can be caused by both
treatment and kidney disease).
16
It is therefore important to
mention any new symptoms to
your doctor straight away.
Patients with myeloma kidney
disease can have no symptoms.
This is because the body can
tolerate even a large reduction
in kidney function – for example,
most people can remain healthy
with only one functioning kidney.
However, as kidney disease
is a common complication in
myeloma, your kidney function
will be monitored through regular
blood tests (more on page 17).
This monitoring means that any
indication of a kidney problem is
usually picked up early.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 16
01/12/2015 14:25:23
Tests used to detect and monitor
myeloma kidney disease
The main test that is performed to diagnose and
monitor myeloma kidney disease, and to determine
the extent of any damage, is a blood test to measure
the level of a molecule called creatinine. Creatinine is a
waste product that is normally filtered out by the kidney
and passed into the urine. Therefore a high creatinine
level indicates that the kidneys are not working normally.
The creatinine level is combined
with your age, gender and
ethnicity to provide a more
accurate measurement of kidney
function which is called an
estimated glomerular filtration
rate (eGFR). The eGFR assesses
how well the kidneys are filtering
the blood by estimating how
many millilitres (ml) of waste fluid
your kidneys can filter from the
blood in a minute (ml/min). It is
possible to calculate an exact
value for the GFR but this is now
rarely done because of the need
for specialised equipment.
A normal eGFR is 60 ml/min
or more. The level at which
someone has severe kidney
damage – where they may
require dialysis – is less than
15 ml/min.
Further elements of your regular
blood tests – such as your red
and white blood cell levels and
calcium levels – can also provide
an indication of how well your
kidneys are working.
Other tests which can provide
important information about your
kidneys include:
„„Urine tests – used to see
whether there is blood or
protein in your urine. The
results of some urine tests
can be given immediately,
but other tests have to be sent
to a laboratory for analysis.
A test that is often carried out
is a 24-hour urine specimen
to check light chain levels
present in the urine that you
are passing
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 17
17
01/12/2015 14:25:24
„„Kidney biopsy – a definitive
diagnosis of kidney disease
may be made by taking a
small sample of kidney tissue
so that the cells can be
examined under a microscope
for damage. This is only
occasionally performed in
people with myeloma
18
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 18
01/12/2015 14:25:24
The treatment and management
of myeloma kidney disease
There are different ways to treat
and manage myeloma kidney
disease, depending on its
underlying cause.
It is possible that myeloma kidney disease can
be reversed and in some cases the kidneys
can fully recover. In about 10% of patients,
dialysis is needed.
Early diagnosis and intervention
is key to preventing permanent
kidney damage.
Myeloma treatment and
high-dose steroids
The most effective way of treating
myeloma kidney disease is to treat
the underlying myeloma and in
doing so, reduce the light chain
and/or paraprotein level.
If you have kidney damage at
diagnosis, you may be given
high-dose steroids (dexamethasone)
before you are started on anti-myeloma
treatment. This is because high-dose
steroids have been shown to be effective
at rapidly reducing light chain levels in
many patients.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 19
19
01/12/2015 14:25:25
Supportive treatment
For the majority of myeloma
patients with any degree of
kidney damage, kidney function
will improve by employing
measures such as:
Drinking lots of fluids
The most important thing you
can do to both reduce the risk
of myeloma kidney disease
developing, and improve any
existing damage, is to drink
plenty of fluid. In many cases,
kidney disease can be reversible
and a high fluid intake may be
enough in itself to reverse the
damage.
You should try to drink between
two and three litres (three to
five pints) of fluid per day. Most
liquids count, so drink as many
glasses of water, sparkling water,
juice or squash, decaf tea or
milk as you can. Caffeinated
tea, coffee and alcohol can be
included, but in moderation. Your
medical team will give you advice
about this.
20
If you are severely dehydrated
you may be given fluid directly
into a vein (intravenous). This
will correct dehydration quickly.
You may require a short stay in
hospital if you are treated with
intravenous fluids.
If you require dialysis, the amount
of fluid that you can drink may be
restricted, sometimes to around
one litre (a pint and a half) a day.
This is because during dialysis
fluid is removed from your blood
at each session. If you drink too
much, the dialysis machine will
be unable to remove all of the
fluid which can cause problems.
However, the amount of fluid that
you can drink if you are receiving
dialysis treatment varies from
person to person.
Treating hypercalcaemia with
bisphosphonates
Bisphosphonates are drugs that
help to prevent and slow down
bone breakdown and are used
in the treatment of myeloma
bone disease. By preventing
the increased breakdown
of the bones, less calcium
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 20
01/12/2015 14:25:25
is released from the bones
and hypercalcaemia may be
prevented or resolved.
Bisphosphonates are removed
from the body via the kidneys.
If you have myeloma kidney
disease doctors will therefore
monitor your kidney function
more closely if you are receiving
bisphosphonate treatment. A
reduced dose of bisphosphonate
treatment may be used if you
have myeloma kidney disease, or
bisphosphonate treatment may
be temporarily withdrawn.
Rapidly treating kidney
infections
A kidney infection can be very
painful and unpleasant and
usually happens when bacteria
travel up from your bladder into
one or both of your kidneys.
If treated promptly, a kidney
infection doesn’t cause serious
harm but it will make you feel
very unwell. If a kidney infection
isn’t treated, it can get worse
and cause permanent kidney
damage.
Avoiding NSAIDs as pain-killers
Avoid using non-steroidal antiinflammatory drugs (such as
aspirin, ibuprofen (Neurofen®)
and diclofenac), which are
commonly used pain-killers.
These drugs can reduce the
flow of blood to the kidneys and
contribute to kidney problems.
Erythropoietin
As mentioned previously, the
kidneys produce a hormone
called erythropoietin which is
required for the production of red
blood cells in the bone marrow.
If patients have myeloma kidney
disease, the kidneys may not
produce enough erythropoietin,
which can lead to anaemia.
Chronic or severe anaemia can
be treated with a drug called
EPO, a synthetic (man-made)
version of the erythropoietin
hormone. Treatment with EPO
(given by injection under the
skin) is particularly helpful for
myeloma patients with kidney
problems to help maintain red
blood cell levels.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 21
21
01/12/2015 14:25:25
For more information about
EPO see the Erythropoietin
Infosheet from Myeloma UK.
Allopurinol
As the kidneys are involved in
removing waste products from
the body, they play an important
role in clearing breakdown
products of myeloma cells (that
have been killed by treatment)
from the body. A potentially
serious complication can occur
when a large number of myeloma
cells are killed rapidly and release
toxins into the bloodstream. If
the kidneys are not working as
well as they should, they cannot
efficiently remove these toxins
from the blood. The toxins can
then cause a number of kidneyrelated complications, including
possible kidney failure.
Patients with myeloma kidney
disease are at higher risk of these
complications occurring due to
the damage already present.
However, all patients who are
receiving chemotherapy-based
22
treatment are given a drug called
allopurinol to help prevent these
complications, at least for the
first few cycles of treatment
(when the greatest cell death
occurs).
Dialysis
In the majority of patients, kidney
damage is temporary and the
kidneys can recover. However, in
around 10% of patients kidney
problems are more severe and
require a regular treatment called
dialysis.
Dialysis is a form of treatment
that replicates many of the
kidney’s functions. It is often used
to treat severe kidney disease,
where the kidneys have lost most
or all of their function.
There are two types of dialysis,
haemodialysis and peritoneal
dialysis.
Haemodialysis is used in the early
stages of treatment for kidney
failure in myeloma patients. If
kidney function does not recover
then haemodialysis or peritoneal
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 22
01/12/2015 14:25:25
dialysis can be used in the
long-term. Your local kidney
unit will spend some time going
through the choices available
to you.
Haemodialysis
If you need haemodialysis for
kidney failure, this is usually
required quite soon after the
damage is first identified (within
days or weeks).
Haemodialysis is carried out by
inserting a dialysis line (which is a
plastic tube) into a vein in the top
of the leg or the neck. This line is
then attached to a machine that
pumps your blood through a filter.
This gets rid of waste products
and excess fluids. After the blood
has passed through the filter it is
returned to your body.
Each dialysis treatment takes up to
four hours and is usually required
at least three times a week.
Peritoneal dialysis
Peritoneal dialysis is an alternative
type of dialysis. It involves using
the peritoneum as a filter.
The peritoneum is a thin
membrane (covering) that
surrounds and supports the
abdominal organs, such as
the stomach and liver. Like
the kidneys, the peritoneum
contains thousands of tiny
blood vessels, making it an
effective filtering device.
During peritoneal dialysis, a
small flexible tube, known as a
catheter, is attached to an incision
(opening) in your abdomen
(tummy). A special dialysis fluid
is introduced into the space that
surrounds your peritoneum.
As blood moves through the
peritoneum, waste products and
excess fluid are moved out of
the blood and into the dialysis
fluid. The dialysis fluid is then
drained from your body.
The process of peritoneal dialysis
lasts roughly 30 to 40 minutes
and is repeated around four times
a day. Alternatively, you can run
it overnight.
Peritoneal dialysis is not commonly
used in myeloma patients, but
kidney specialists
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 23
23
01/12/2015 14:25:25
will discuss this with you as an
option if your kidneys don’t
recover and you need long-term
dialysis treatment. More about
living day-to-day on long-term
dialysis can be found on page 25.
Plasmapheresis
Theoretically, the level of light
chains can be reduced by their
physical removal from the blood.
Plasmapheresis (also called
plasma exchange) has been used
to rapidly decrease the light
chain concentrations in myeloma
24
patients with severe kidney
damage with varying degrees
of success.
A new method of haemodialysis
is currently being investigated
and early indications suggest
that it may be more efficient at
removing light chains than either
plasmapheresis or conventional
dialysis. Studies are currently
in progress to see if this new
approach improves outcomes
for myeloma patients with
kidney disease.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 24
01/12/2015 14:25:25
Living with myeloma kidney disease
The added complication of kidney disease in addition to
myeloma can be worrying for you and your family, but it
does not have to take over your life.
By leading a healthy lifestyle and
following your doctor’s advice on
the different treatments you may
be taking for your myeloma and
its complications, it is possible to
live without symptoms or further
deterioration of your kidney
function. It can also be possible
to prevent kidney damage from
occurring in the first place.
Looking after your kidneys
The following steps can help
keep your kidneys as healthy as
possible:
„„Do not smoke
„„Maintain a healthy blood
pressure (neither too high nor
too low). You can influence
this by eating a varied diet
(particularly avoiding added
salt) and doing gentle exercise
„„Reduce the amount of
cholesterol in your diet.
Cholesterol increases blood
pressure and can damage
kidney function
„„Myeloma patients who also
have diabetes should make
sure their blood sugar levels
are kept under control
„„Keep well hydrated
„„Look out for any signs or
symptoms of kidney damage
and report them to your doctor
or nurse as soon as possible
Living on dialysis
If you need dialysis, this can be
disruptive to your day-to-day
life given the time commitments
involved for both types of
dialysis.
In myeloma patients who require
dialysis and recover kidney
function, the average time on
dialysis treatment is around three
weeks. However, around half of
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 25
25
01/12/2015 14:25:25
myeloma patients who require
dialysis will need long-term
treatment, remaining on dialysis
for the rest of their lives.
„„The effects that dialysis can
Both haemodialysis and
peritoneal dialysis cause sideeffects. This is due to the way
that dialysis is carried out and
the fact that dialysis can only
compensate for the loss of kidney
function to a certain extent.
The following section provides
information on the most common
side-effects of haemodialysis
(as the most frequently used
dialysis method in myeloma)
and how to manage them.
„„Stress and anxiety
Side-effects of dialysis
Fatigue
Fatigue, where you feel tired
and exhausted all the time, is a
common side-effect in patients
who are on haemodialysis on
a long-term basis. Fatigue is
thought to be caused by a
combination of:
have on the body
„„The dietary restrictions
associated with dialysis
Fatigue may particularly be a
problem for myeloma patients
on dialysis given that it is already
a common symptom of myeloma
and a side-effect of some
anti-myeloma treatments.
There are several treatment
options that may be of some
use in helping to improve the
symptoms of fatigue.
You may want to consult a
dietician because your diet may
need to be adjusted in order
to boost your energy levels.
Moderate, regular exercise
can also improve symptoms
of fatigue. Although it may
be hard even to think about
exercise when you are feeling so
exhausted, just a small increase
in physical activity can boost
energy levels.
„„The loss of normal
kidney function
26
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 26
01/12/2015 14:25:25
For more information
see the Fatigue Infoguide
from Myeloma UK.
Low blood pressure
Low blood pressure
(hypotension) is one of the
most common side-effects of
haemodialysis. It can be caused
by the drop in fluid levels that
occurs during dialysis. Low
blood pressure can cause
nausea and dizziness.
The best way to minimise
the symptoms of low blood
pressure is to ensure that you
keep to your daily fluid intake
recommendations. If symptoms
of low blood pressure persist, you
should consult your dialysis unit
because the amount of fluid
used during dialysis may need
to be adjusted.
Infection
Patients receiving haemodialysis
have an increased risk of
developing an invasive infection
caused by staphylococcus aureus
bacteria.
This type of bacteria is usually
responsible for minor skin
infections such as boils. However,
the haemodialysis process can
allow the bacteria to enter the
body where they can cause a
more serious invasive infection
that can spread through the
blood, leading to multiple organ
failure. This is known as sepsis or
blood poisoning.
The first symptoms of an
infection of this type include:
„„A high temperature (fever) of
38°C (100.4°F) or above
„„Dizziness, which is related to
a decrease in blood pressure,
or a worsening of low blood
pressure if you already have it
If you have a high temperature,
you should contact your dialysis
unit immediately for advice. If
you develop an invasive infection,
you will need to be admitted
to hospital and treated with
injections of antibiotics.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 27
27
01/12/2015 14:25:25
Muscle cramps
Itchy skin
During a haemodialysis session,
some people experience muscle
cramps, usually in their lower
legs. This is thought to be caused
by the muscles reacting to the
fluid loss that occurs during
haemodialysis.
Many patients who receive
haemodialysis experience itchy
skin. This is thought to be due
to a build-up of potassium in the
body. Avoiding potassium-rich
food (such as bananas, spinach
and salmon) can help reduce
the frequency and severity of
this side-effect. Some patients
have also found that using
moisturising cream can minimise
the discomfort caused by itching.
You should consult your dialysis
unit if you have muscle cramps
that become particularly painful.
Medication may be available that
can help you to cope better with
the symptoms.
28
Remember, if you require
dialysis your local kidney unit
will provide you with a lot of
tailored information and
specialist support.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 28
01/12/2015 14:25:25
Future directions
Myeloma kidney disease is a common complication of
myeloma and adds to the overall burden of myeloma.
Provided patients are diagnosed early, rapid
intervention to reduce the level of excessive
light chains can in most cases successfully
reverse myeloma kidney disease and improve
patient outcomes.
A great deal of research is in progress to further
understand the most effective ways to
manage and treat patients with enduring
or permanent myeloma kidney disease.
Alternatives to bisphosphonates
(which can be toxic to the kidneys)
and advances in dialysis are the
subject of a number of clinical
trials around the world. For
example, a new method of
haemodialysis called ‘extended
high cut-off haemodialysis’ is
being investigated and early
indications suggest that it may be
more efficient at removing light
chains than either plasmapheresis
or conventional dialysis.
Ongoing investigations such as
this will give doctors a greater
understanding of what treatment
options will be most effective
for myeloma patients with
significant kidney disease.
Kidney Infoguide Nov 2015 FINAL.indd 29
Infoline: 0800 980 3332
29
01/12/2015 14:25:27
Questions for your
doctor/medical team
Some questions you may want to ask your doctor
or medical team include:
„„Are my kidneys affected?
„„What is my creatinine level?
„„How often should I have check-
ups and blood tests?
„„Will my bisphosphonate dose
be reduced or stopped?
„„What can I do to help improve
my kidney function?
30
„„Will my anti-myeloma
treatment help my myeloma
kidney disease?
„„Will I need to have additional
treatment for my myeloma
kidney disease?
„„Will I need dialysis? What
effect is this likely to have on
my day-to-day life?
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 30
01/12/2015 14:25:27
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): 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.
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: The soft, spongy
tissue in the centre of bones that
produces white blood cells, red
blood cells and platelets.
Dialysis: When a patient’s
kidneys are unable to filter blood,
the blood is cleaned by passing it
through a dialysis machine.
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.
Fatigue: A feeling of being
exceptionally tired, lethargic or
exhausted all or most of the time.
It does not result from activity or
exertion and is not relieved by
rest or sleep.
Glomerular filtration rate
(eGFR): The volume of fluid
filtered by the kidneys over a
specified period of time.
Glomerulus: The part of the
kidney that is responsible for
filtering the blood.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 31
31
01/12/2015 14:25:27
Hormone: A chemical messenger
released by a cell or organ in
one part of the body that affects
another part of the body.
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.
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.
32
Light chain: The smaller of
two components that make up
the structure of antibodies (or
immunoglobulins). There are two
types of light chain, kappa and
lambda. In about 20% of patients,
the abnormal plasma cells
produce only light chains and no
whole antibodies (paraprotein)
at all. This is called ‘light chain’
myeloma. Light chains are also
elevated and measurable in the
vast majority of patients that
produce paraprotein.
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.
Nephron: One of thousands of
tiny structures within each kidney
that remove waste from the
blood to produce urine.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 32
01/12/2015 14:25:27
Non-steroidal anti-inflammatory
drug (NSAID): Drugs used to
prevent or treat pain which do
not contain steroids.
Paraprotein: An abnormal
antibody (immunoglobulin)
produced in myeloma.
Measurements of paraprotein
in the blood can be used to
diagnose and monitor the
disease.
Peritoneum: A large, thin
and complex lining within the
abdomen which provides a
covering for organs such as the
large and small bowel, and the
stomach. It provides support for
these organs.
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.
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).
Renin: An enzyme secreted by
and stored in the kidneys that
promotes the production of the
protein angiotensin. Renin plays
an important role in regulating
blood pressure.
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.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 33
33
01/12/2015 14:25:27
Tamm Horsfall protein: The
most abundant protein in normal
urine. Its function is not well
understood.
White blood cells: Blood cells
involved in the body’s immune
system, which help to fight
infection.
Tubule: Small tube found in the
kidney which reabsorbs salts,
minerals and sugars back into
the blood, which are useful to the
body.
Zoledronic acid (previously
known as Zometa®):A type of
drug called a bisphosphonate,
given intravenously.
Ureter: The tube that takes urine
from the kidneys to the bladder.
Vitamin D: Helps regulate the
amount of calcium in the body,
promoting healthy bones and
teeth. Vitamin D is made by our
body in reaction to sunlight.
Vitamin D is also found in a small
number of foods such as oily fish
(e.g. salmon, sardines) and eggs.
34
Zometa® (now generally referred
to as zoledronic acid): A type
of drug called a bisphosphonate,
given intravenously.
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 34
01/12/2015 14:25:27
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
Kidney Infoguide Nov 2015 FINAL.indd 35
35
01/12/2015 14:25:27
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.
36
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 36
01/12/2015 14:25:27
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.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 37
37
01/12/2015 14:25:27
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.
38
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 38
01/12/2015 14:25:27
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.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 39
39
01/12/2015 14:25:27
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.
40
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 40
01/12/2015 14:25:27
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.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 41
41
01/12/2015 14:25:27
NHS Choices
www.nhs.uk
NHS Choices is the UK’s biggest health website. It provides a
comprehensive health information service from the National Health
Service on conditions, treatments, local services in England and
healthy living.
OvercomeDepressionwww.overcomedepression.co.uk
OvercomeDepression aims to offer a unique reference point for
information and practical advice on depression.
Pain Association Scotland
www.painassociation.com
0800 783 6059
Pain Association Scotland offers support to people with chronic pain
and organises pain management support groups across Scotland.
Pain Concern
www.painconcern.org.uk
0300 123 0789
Pain Concern provides a range of information about self-help
and managing pain. Its helpline offers information, support and
a listening ear.
Patient Advice Liaison Services (PALS)
These are available in England to provide patients and their families
with information regarding health related enquiries, NHS services and
other support available. They can provide information about the NHS
complaints procedure and how to get independent help if you decide
you may want to make a complaint. You will be able to find your local
service through your hospital, or by searching on the NHS Choices
website www.nhs.uk.
42
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 42
01/12/2015 14:25:27
Penny Brohn Cancer Care
www.pennybrohncancercare.org
(formerly Bristol Cancer Help Centre)
0845 123 2310
Based in Bristol, Penny Brohn Cancer Care offers specialist support
including complementary therapies, nutritional advice and counselling for
people affected by cancer. Its helpline provides emotional support and
information about complementary therapists and services in your area.
Relatewww.relate.org.uk
0300 100 1234
Relate offers a confidential counselling service for couples or
individuals experiencing difficulties in their relationship. Relate
provides support face-to-face, by phone and through its website.
Samaritanswww.samaritans.org
08457 90 90 90 (24 hours a day, 7 days a week)
Samaritans provides confidential non-judgemental emotional support,
24 hours a day for people who are experiencing feelings of distress or
despair. It offers services by telephone, email, letter and face to face.
Scopewww.scope.org.uk
0808 800 3333
Scope provide support, information and advice to disabled people
and their families, including advice on benefits, equipment, therapies
and respite.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 43
43
01/12/2015 14:25:27
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.
44
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 44
01/12/2015 14:25:27
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.
Ireland
ACCORDwww.accord.ie
01 505 3112
Caring for marriage and relationships. It is the largest marriage-care
agency in Ireland. ACCORD (formerly known as the Catholic Marriage
Care Service) accepts and values clients irrespective of their religious
or ethnic background.
Association of Registered Complementary Health Therapists of
Ireland
053 938 3734
www.irishtherapists.ie
ARCHTI keeps a register of complementary therapy practitioners,
which you can search on their website to find one near you.
Infoline: 0800 980 3332
Kidney Infoguide Nov 2015 FINAL.indd 45
45
01/12/2015 14:25:27
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.
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.
46
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 46
01/12/2015 14:25:27
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.
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
Kidney Infoguide Nov 2015 FINAL.indd 47
47
01/12/2015 14:25:27
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.
48
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 48
01/12/2015 14:25:30
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
Kidney Infoguide Nov 2015 FINAL.indd 49
49
01/12/2015 14:25:33
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.
50
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 50
01/12/2015 14:25:38
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
Kidney Infoguide Nov 2015 FINAL.indd 51
51
01/12/2015 14:25:45
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.
52
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 52
01/12/2015 14:25:47
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
Kidney Infoguide Nov 2015 FINAL.indd 53
53
01/12/2015 14:25:49
Notes
54
www.myeloma.org.uk
Kidney Infoguide Nov 2015 FINAL.indd 54
01/12/2015 14:25:49
Published by: Myeloma UK
Publication date: October 2013
Last updated: October 2015
Review date: October 2017
Myeloma UK would like to thank Dr Paul Cockwell,
Dr Raymond Dang and Joan Smith 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.
PI/KIG/2015/11
Kidney Infoguide Nov 2015 FINAL.indd 55
01/12/2015 14:25:49
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
Kidney Infoguide Nov 2015 FINAL.indd 56
01/12/2015 14:25:49