Myeloma and the kidney - Myeloma Infoguide Symptoms and complications - Myeloma UK
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Myeloma and the kidney Myeloma Symptoms Infoguide and Series complications
This Infoguide has been made possible thanks to the generosity of Myeloma UK supporters. To find out how you can support our vital work call 0131 557 3332 or email fundraising@myeloma.org.uk Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk
Contents
4 Myeloma – an overview You will find a definition for the
bold terms throughout in the
6 What do the kidneys do?
'Medical terms explained’ section.
9 Why does myeloma cause
kidney disease?
13 What are the symptoms of
myeloma kidney disease?
14 Tests used to detect and
monitor myeloma kidney
disease
16 The treatment and
management of myeloma
kidney disease
22 Living with myeloma
kidney disease
27 Future directions
28 Questions for your
doctor/medical team
29 Medical terms explained
32 Useful organisations
33 About Myeloma UK
34 We need your help
Disclaimer: The information in this publication 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 3Myeloma – an overview
Myeloma is a type of cancer arising from plasma cells
that are normally found in the bone marrow. Plasma
cells are a type of white blood cell which form part
of the immune system.
Normal plasma cells produce called myeloma cells) in the
different types of antibodies to bone marrow and the presence
help fight infection. In myeloma, of paraprotein in the body.
the plasma cells become Common problems include bone
cancerous (sometimes called pain, bone fractures, fatigue,
malignant) and release a large frequent or recurrent infection
amount of a single type of and kidney damage.
antibody, known as paraprotein,
which has no useful function. It is Myeloma is highly treatable in the
often through the measurement majority of cases. Treatment is
of paraprotein that myeloma is aimed at controlling the disease,
diagnosed and monitored. relieving the complications
and symptoms it causes, and
Myeloma affects multiple extending and improving the
places in the body (hence why quality of life.
it is sometimes referred to as
‘multiple myeloma’) where bone Treatment for myeloma is often
marrow is normally active, such most effective when two or
as the bones of the spine, pelvis, more drugs, with different but
rib cage and the areas around the complementary mechanisms
shoulders and hips. of action, are given together.
Treatment is usually given over
Most of the complications and a number of weeks which may
symptoms of myeloma are or may not be followed by a rest
caused by a build-up of the period. This pattern constitutes
abnormal plasma cells (often one cycle of treatment and a
4 www.myeloma.org.ukseries of treatment cycles is Basic facts
referred to as a course or line There are approximately
of treatment. 5,500 people diagnosed
While there are many effective with myeloma every year
treatments for myeloma, in the UK
unfortunately it is currently
incurable. This means that even There are approximately
after successful treatment has 17,500 people living with
provided a period of remission or myeloma in the UK at any
stable disease, the myeloma will one time
return. This is called a relapse.
Myeloma accounts for 15%
The causes of myeloma are of blood cancers and 2%
not fully understood but it is of cancers generally
believed to be caused by an
interaction of both genetic and Myeloma mostly affects
environmental factors. people aged 65 and over
but it has been diagnosed
in people as young as 20
Infoline: 0800 980 3332 5What 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 Return vitamins, amino acids,
essential functions, including: glucose, hormones and other
Filtering the blood to get rid vital substances back into the
of waste products from the bloodstream
bloodstream Blood enters each kidney
Keeping the salt (e.g. sodium through the renal artery and
and potassium) and water passes through thousands of tiny
content of the body constant filtering systems called nephrons
(see Figure 1). Each nephron
Controlling blood pressure contains a small cluster of
Producing a number of specialised blood vessels called
essential hormones the glomerulus and a tubule
These functions are described which eventually connects to the
in more detail below. bladder. Blood is passed through
the glomerulus, which acts as a
filter. Not all components that
Waste products
make up blood can pass through
Healthy kidneys filter the the glomerulus. Small molecules
blood to: such as water and sodium can,
Remove waste products and but larger molecules such as
excess fluid from the body protein cannot.
6 www.myeloma.org.ukOnce filtered by the glomerulus, Water and electrolytes
the remaining fluid passes into For the cells of the body
the tubule. Each tubule consists to work properly, they need
of a pipe which reabsorbs useful a stable balance of salts
substances present in the filtered (such as potassium and
fluid back into the bloodstream. sodium) and water.
Any substances and extra water
that the body does not need The salt and water balance
passes out of the tubules and of your body is important for
into the bladder to be removed several vital bodily functions
from the body as urine. including sending messages
to and from the brain.
The balance of salt and water
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.
nephrons ONE NEPHRON
tubule filtered tubule
blood OUT
unfiltered
blood glomerulus
IN
unfiltered
blood IN
filtered
blood
OUT
urine urine urine
out out out
Figure 1. Structure of the kidney
ww.blink.biz Figure: MUK09_kidney_structure-2COL Infoline: design
©www.myeloma.org.uk 0800by980 3332
www.blink.biz 7For example, if you do not drink 2. An active form of vitamin D,
enough, the body fluids become which helps to regulate the
more concentrated and the body’s calcium levels and
kidneys excrete less (and more therefore promote strong,
concentrated) urine. If you drink healthy bones.
an excess of fluid, the body fluids 3. An enzyme called renin
become more diluted, and the which plays an important role
kidneys excrete more (and more in regulating blood pressure.
dilute) urine, getting rid of the If the kidneys aren’t
excess that has been taken in. working properly, too much
renin can be produced,
Essential hormones increasing blood pressure
The kidneys also produce and sometimes resulting in
hormones and chemicals that hypertension (high blood
are needed for other normal pressure). This is one of the
body functions. For example: reasons why it is common for
people with kidney disease
1. The hormone erythropoietin,
to also have high blood
which is essential for the
pressure.
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.
8 www.myeloma.org.ukWhy 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 and two identical light chains
occur for a variety of reasons. (see Figure 2).
The abnormal protein produced A healthy person produces
by myeloma cells can damage a mixture of the different
the kidneys by blocking the immunoglobulins made up of
tubules. Other complications of different combinations of heavy
myeloma, such as dehydration and light chains, each of which
and a high calcium level plays a specialised role in fighting
(hypercalcaemia), as well as infection.
some of the drugs used in the
treatment of myeloma, can also In myeloma, however, a large
cause or contribute to myeloma amount of a single type of
kidney disease. immunoglobulin (called
paraprotein) is produced.
Paraprotein plays no useful
Light chains and paraprotein
role in the body.
In a healthy immune system,
In about 20% of patients, the
there are several different
myeloma cells produce only light
types of immunoglobulin (also
chains (sometimes called Bence
known as antibodies). Each
Jones proteins) and no whole
immunoglobulin is a Y-shaped
immunoglobulins at all. This is
structure and is always made up
called ‘light chain’ or ‘Bence
of two identical heavy chains
Jones’ myeloma.
Infoline: 0800 980 3332 9Light chains are also elevated HEAVY LIGHT
and measurable in the vast CHAIN CHAIN
majority of myeloma patients that
produce whole immunoglobulins
(paraprotein).
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 HEAVY LIGHT
CHAIN CHAIN
with another protein called
Figure 2. Immunoglobulin structure
Tamm Horsfall protein. The
combination of lights chains
with Tamm Horsfall protein can
produce a big
©www.myeloma.org.uk protein
design that sticks
by www.blink.biz Figure: MUK02_Ig_structure-2COL
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 worsening
the damage.
10 www.myeloma.org.ukHypercalcaemia putting the kidneys under
Bone is high in calcium and as it additional pressure.
is broken down, a large amount For the majority of myeloma
of calcium is released into the patients with any degree of
blood. Myeloma commonly kidney disease at diagnosis,
causes excess bone breakdown kidney function can be
and this can cause high blood improved by keeping up a high
calcium levels (hypercalcaemia). fluid intake. All patients should
Hypercalcaemia is most often try to drink between two and
present at the time of diagnosis three litres (three to five pints)
and is much less common once of fluid per day. However, if
treatment has started. High you require dialysis, the
levels of calcium in the blood amount of fluid that you
passing through the kidneys can can drink may be restricted,
damage them. sometimes to around one litre
(a pint and a half) a day.
Infection
Medications/myeloma treatments
Myeloma itself and some of
its treatments can reduce how Certain medications often used
well your immune system in the treatment of myeloma
works, leaving you vulnerable and its symptoms/complications
to infection. Kidney infections may also affect the kidneys,
can, if not treated promptly, aggravating any existing damage.
worsen kidney impairment, For example, some
and sometimes cause permanent bisphosphonates – used to
damage. treat myeloma bone disease
– can be toxic to the kidneys.
Dehydration This is because these drugs are
Dehydration can aggravate removed from the body via the
myeloma kidney disease by kidneys – this can put additional
Infoline: 0800 980 3332 11strain on them if they are already damaged. Therefore bisphosphonates such as zoledronic acid (also 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 ibuprofen (Nurofen®), diclofenac and high-dose aspirin (300mg) – 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. 12 www.myeloma.org.uk
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 It is therefore important to
kidney disease may include: mention any new symptoms to
Thirst your doctor straight away, so the
correct cause, or causes, can be
Fatigue identified.
Persistent headaches Patients with myeloma kidney
Loss of appetite disease can have no symptoms.
Nausea and/or vomiting This is because the body can
tolerate even a large reduction
Passing excessive amounts of
in kidney function – for example,
urine, or very little or no urine
most people can remain healthy
Swelling in the face and ankles with only one functioning kidney.
Shortness of breath However, as kidney disease
Many of the symptoms of is a common complication in
myeloma kidney disease are quite myeloma, your kidney function
general and might be confused will be monitored through regular
with symptoms related to other blood tests (more on page 14).
problems, or side-effects of This monitoring means that any
myeloma treatments (e.g. fatigue indication of a kidney problem is
which can be caused by both usually picked up early.
treatment and kidney disease).
Infoline: 0800 980 3332 13Tests 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 that measures
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. A high creatinine level
indicates that the kidneys are not working normally.
The creatinine level is combined damage – where they may
with your age, gender and require dialysis – is less than
ethnicity to provide a more 15 ml/min.
accurate measurement of Other blood tests you’ll have
kidney function. This is called regularly – such as those
an estimated glomerular measuring your red and white
filtration rate (eGFR). The eGFR blood cell levels and calcium
assesses how well the kidneys levels – can also provide an
are filtering the blood by indication of how well your
estimating how many millilitres kidneys are working.
(ml) of waste fluid your kidneys
can filter from the blood in a Further tests which can provide
minute (ml/min). It is possible important information about
to calculate an exact value for your kidneys include:
the GFR but this is now rarely Urine tests – used to see
done because of the need for whether there is blood or
specialised equipment. protein in your urine. The
A normal eGFR is 60 ml/min results of some urine tests
or more. The level at which can be given immediately,
someone has severe kidney but other tests have to be
sent to a laboratory for
14 www.myeloma.org.ukanalysis. 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
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
myeloma patients
Infoline: 0800 980 3332 15The 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 Supportive treatment
disease can be reversed and in For the majority of myeloma
some cases the kidneys can fully patients with any degree of
recover. However, in about 10% kidney damage, kidney function
of patients, dialysis is needed. will improve by employing
Early diagnosis and intervention measures such as:
is key to preventing permanent
kidney damage. Drinking lots of fluids
The most important thing you
Myeloma treatment and can do to both reduce the risk
high-dose steroids of myeloma kidney disease
The most effective way of developing, and improve any
treating myeloma kidney existing damage, is to drink
disease is to treat the underlying plenty of fluid. In many cases,
myeloma and in doing so, kidney disease can be reversible
reduce the light chain and/or and a high fluid intake may be
paraprotein level. enough in itself to reverse the
If you have kidney damage damage.
at diagnosis, you may be You should try to drink between
given high-dose steroids two and three litres (three to
(dexamethasone) before you five pints) of fluid per day. Most
are started on anti-myeloma liquids count, so drink as many
treatment. This is because glasses of water, sparkling water,
high-dose steroids have been juice or squash, decaf tea or
shown to be effective at rapidly milk as you can. Caffeinated tea,
reducing light chain levels in coffee and alcohol can be
many patients.
16 www.myeloma.org.ukincluded, but in moderation. Your Treating hypercalcaemia with
medical team will give you advice bisphosphonates
about this. Bisphosphonates are drugs that
If you are severely dehydrated help to prevent and slow down
you may be given fluid directly bone breakdown and are used
into a vein (intravenous). This in the treatment of myeloma
will correct dehydration quickly. bone disease. By preventing
You may require a short stay in the increased breakdown
hospital if you are treated with of the bones, less calcium
intravenous fluids. is released from the bones
If you require dialysis, the and hypercalcaemia may be
amount of fluid that you prevented or resolved.
can drink may be restricted, Bisphosphonates are removed
sometimes to around one litre from the body via the kidneys. If
(a pint and a half) a day. This you have myeloma kidney disease
is because during dialysis fluid and are receiving bisphosphonate
is removed from your blood at treatment, your doctors will
each session. If you drink more therefore monitor your kidney
than the specified amount, the function more closely. A reduced
dialysis machine will be unable dose of bisphosphonate
to remove all of the fluid which treatment may be used, or
can cause problems. However, bisphosphonate treatment may
the amount of fluid that you be temporarily withdrawn, in
can drink if you are receiving some circumstances.
dialysis treatment varies from
person to person.
Infoline: 0800 980 3332 17Rapidly treating kidney Avoiding NSAIDs as pain-killers
infections Avoid using non-steroidal anti-
A kidney infection can be very inflammatory drugs such as high-
painful and unpleasant and dose aspirin (usually 300mg),
usually happens when bacteria ibuprofen (Nurofen®) and
travel up from your bladder into diclofenac, which are commonly
one or both of your kidneys. The used pain-killers. These drugs can
signs and symptoms of a kidney reduce the flow of blood to the
infection may include: kidneys and contribute to kidney
Fever (temperature above problems.
38°C) Low-dose aspirin (usually 75mg)
A temperature below 35.5°C is sometimes prescribed in
myeloma as it can help prevent
Chills and sweating blood clots developing.
Burning sensation or pain
when passing urine, or a Erythropoietin
frequent need to urinate
As mentioned previously, the
Nausea/vomiting kidneys produce a hormone
Pain in the abdomen. called erythropoietin which
is required for the production
If treated promptly, a kidney
of red blood cells in the bone
infection doesn’t cause serious
marrow.
harm but it might make you feel
very unwell. If a kidney infection If patients have myeloma kidney
isn’t treated, it can get worse disease, the kidneys may not
and cause permanent kidney produce enough erythropoietin,
damage. which can lead to anaemia.
Chronic or severe anaemia can
For more information, see the Infection be treated with a drug called
and myeloma Infosheet from Myeloma UK
18 www.myeloma.org.ukEPO, a synthetic (man-made) Patients with myeloma kidney
version of the erythropoietin disease are at higher risk of
hormone. Treatment with EPO these complications occurring
(given by injection under the due to the damage already
skin) is particularly helpful for present. All patients who are
myeloma patients with kidney receiving chemotherapy-based
problems to help maintain red treatment are given a drug called
blood cell levels. allopurinol to help prevent these
complications, at least for the
Allopurinol first few cycles of treatment
(when the greatest myeloma cell
Given that the kidneys are
death occurs).
involved in removing waste
products from the body, they
also play an important role in Dialysis
clearing breakdown products In the majority of patients, kidney
of myeloma cells (that have damage is temporary and the
been killed by treatment) from kidneys can recover. However, in
the body. A potentially serious around 10% of patients kidney
complication can occur when problems are more severe and
a large number of myeloma require a regular treatment called
cells are killed rapidly by anti- dialysis.
myeloma treatment and release Dialysis is a form of treatment
toxins into the bloodstream. If that replicates many of the
the kidneys are not working as kidney’s functions. It is often used
well as they should, they cannot to treat severe kidney disease,
efficiently remove these toxins where the kidneys have lost most
from the blood. The toxins can or all of their function.
then cause a number of kidney-
related complications, including There are two types of dialysis,
possible kidney failure. haemodialysis and peritoneal
dialysis.
Infoline: 0800 980 3332 19Haemodialysis is used in the Haemodialysis is carried out by
early stages of treatment for inserting a dialysis line (which
kidney failure in myeloma is a plastic tube) into a vein in
patients. If kidney function does the top of your leg or the neck.
not recover then haemodialysis This line is then attached to a
or peritoneal dialysis can be machine that pumps your blood
used in the long-term. Your local through a filter. This gets rid
kidney unit will spend some of waste products and excess
time going through the choices fluids. After the blood has
available to you. passed through the filter it is
returned to your body.
Haemodialysis Each dialysis treatment takes
If you need haemodialysis up to four hours and is usually
for kidney failure, this is usually required at least three times
required quite soon after the a week.
damage is first identified
(within days or weeks).
20 www.myeloma.org.ukPeritoneal dialysis The process of peritoneal dialysis
Peritoneal dialysis is an alternative lasts roughly 30 to 40 minutes
type of dialysis. It involves using and is repeated around four times
the peritoneum as a filter. a day. Alternatively, you can run
it overnight.
The peritoneum is a thin
membrane (covering) that Kidney specialists will discuss
surrounds and supports the this with you as an option if
abdominal organs, such as your kidneys don’t recover and
the stomach and liver. Like you need long-term dialysis
the kidneys, the peritoneum treatment. More about living day-
contains thousands of tiny to-day on long-term dialysis can
blood vessels, making it an be found on page 22.
effective filtering device.
Plasmapheresis
During peritoneal dialysis, a small
flexible tube, known as a catheter, Theoretically, the level of light
is attached to an incision chains can be reduced by their
(opening) in your abdomen physical removal from the blood.
(tummy). A special dialysis fluid Plasmapheresis (also called
is introduced into the space that plasma exchange) has been used
surrounds your peritoneum. to rapidly decrease the light
chain concentrations in myeloma
As blood moves through the
patients with severe kidney
peritoneum, waste products and
damage with varying degrees
excess fluid are moved out of
of success.
the blood and into the dialysis
fluid. The dialysis fluid is then
drained from your body.
Infoline: 0800 980 3332 21Living with myeloma kidney disease
The added complication of kidney disease in addition
to myeloma can be worrying for you and your family.
However, by leading a healthy Saturated fat can lead to high
lifestyle and following your cholesterol levels, which can
doctor’s advice on the different increase blood pressure and
treatments you may be taking worsen kidney problems
for your myeloma and its Myeloma patients who also
complications, it is possible to have diabetes should make
live without symptoms or further sure their blood sugar levels
deterioration of your kidney are kept under control
function. It can also be possible
to prevent kidney damage from Keep well hydrated
occurring in the first place. Be aware of the symptoms of
kidney infection and report
Looking after your kidneys them as soon as possible
The following steps can help Look out for any signs or
keep your kidneys as healthy as symptoms of kidney damage
possible: and report them to your doctor
or nurse as soon as possible
Do not smoke
Maintain a healthy blood Living on dialysis
pressure (neither too high nor
too low). You can influence If you need dialysis, this can be
this by eating a varied diet disruptive to your day-to-day
(particularly avoiding added life given the time commitments
salt) and doing gentle exercise involved for both types of
dialysis.
Reduce the amount of
saturated fat in your diet. The length of time that you are
on dialysis for will depend on
22 www.myeloma.org.ukhow severe the damage to your foods. For example, patients
kidneys is. In myeloma patients on a low potassium diet might
who ultimately recover kidney be advised to eat no more than
function, the average time on the recommended five fruit and
dialysis treatment is around three vegetables per day.
weeks. However, around half of Some simple tips to reduce salt in
myeloma patients who require your diet include the following:
dialysis will need long-term
treatment, remaining on dialysis Use herbs and spices in
for the rest of their lives. cooking in place of salt
Read food nutritional labels
Diet restrictions carefully
While you are on dialysis, Avoid salt substitutes
you may be asked to follow (e.g. Losalt®) – these are often
a specific diet. In general, made from potassium
dialysis patients are advised If eating out, ask for sauce
to avoid excess sodium as this and salad dressings on the
can contribute to high blood side – these can be high in salt
pressure. This means using less and should be eaten in small
salt in cooking and on food as quantities only
well as eating fewer salty foods
Depending on the stage of
(such as crisps, salted nuts etc.).
kidney disease, you may need to
Patients with kidney disease make further dietary changes –
may have high levels of another your doctor or nurse will give you
salt called potassium, which more detailed information on diet
can interfere with the normal while on dialysis.
functioning of the body. If you
Both haemodialysis and
have high levels of potassium,
peritoneal dialysis cause side-
you will be advised to avoid
effects. This is due to the way
eating too many potassium-rich
Infoline: 0800 980 3332 23that dialysis is carried out and Fatigue may particularly be a
the fact that dialysis can only problem for myeloma patients
compensate for the loss of kidney on dialysis given that it is already
function to a certain extent. a common symptom of myeloma
The following section provides and a side-effect of some
information on the most common anti-myeloma treatments.
side-effects of haemodialysis There are several treatment
(as the most frequently used options that may be of some
dialysis method in myeloma) use in helping to improve the
and how to manage them. symptoms of fatigue.
You may want to consult a
Side-effects of dialysis
dietician because your diet may
Fatigue need to be adjusted in order
to boost your energy levels.
Fatigue, where you feel tired
Moderate, regular exercise
and exhausted all the time, is a
can also improve symptoms
common side-effect in patients
of fatigue. Although it may
who are on haemodialysis on
be hard even to think about
a long-term basis. Fatigue is
exercise when you are feeling so
thought to be caused by a
exhausted, just a small increase
combination of:
in physical activity can boost
The loss of normal energy levels.
kidney function
The effects that dialysis For more information see the Fatigue
Infoguide from Myeloma UK
can have on the body
The dietary restrictions
associated with dialysis
Stress and anxiety
24 www.myeloma.org.ukLow blood pressure the haemodialysis process can
Low blood pressure allow the bacteria to enter the
(hypotension) is one of the body where they can cause a
most common side-effects of more serious invasive infection
haemodialysis. It can be caused that can spread through the
by the drop in fluid levels that blood, leading to multiple organ
occurs during dialysis. Low blood failure. This is known as sepsis or
pressure can cause nausea and blood poisoning.
dizziness. The first symptoms of an
The best way to minimise infection of this type include:
the symptoms of low blood A high temperature (fever)
pressure is to ensure that you of 38°C (100.4°F) or above
keep to your daily fluid intake Dizziness, which is related to
recommendations. If symptoms a decrease in blood pressure,
of low blood pressure persist, you or a worsening of low blood
should consult your dialysis unit pressure if you already have it
because the amount of fluid used
during dialysis may need to be If you have a high temperature,
adjusted. you should contact your dialysis
unit immediately for advice. If
you develop an invasive infection,
Infection
you will need to be admitted
Patients receiving haemodialysis to hospital and treated with
have an increased risk of injections of antibiotics.
developing an invasive infection
caused by Staphylococcus aureus Muscle cramps
bacteria.
During a haemodialysis session,
This type of bacteria is usually some people experience muscle
responsible for minor skin cramps, usually in their lower
infections such as boils. However, legs. This is thought to be caused
Infoline: 0800 980 3332 25by the muscles reacting to the to a build-up of potassium in the
fluid loss that occurs during body. Avoiding potassium-rich
haemodialysis. food (such as bananas, spinach
You should consult your dialysis and salmon) can help reduce
unit if you have muscle cramps the frequency and severity of
that become particularly painful. this side-effect. Some patients
Medication may be available that have also found that using
can help you to cope better with moisturising cream can minimise
the symptoms. the discomfort caused by itching.
Remember, if you require
Itchy skin dialysis your local kidney unit
will provide you with a lot of
Many patients who receive
tailored information and
haemodialysis experience itchy
specialist support.
skin. This is thought to be due
26 www.myeloma.org.ukFuture directions
Myeloma kidney disease is a common complication of
myeloma and adds to the overall burden of myeloma.
Provided patients are diagnosed For example, alternatives to
early, rapid intervention to reduce bisphosphonates (which can
the level of excessive light chains be toxic to the kidneys) and
can, in most cases, successfully advances in dialysis are the
reverse myeloma kidney disease subject of a number of clinical
and improve patient outcomes. trials around the world.
A great deal of research is in Ongoing investigations such as
progress to further understand this will give doctors a greater
the most effective ways to understanding of what treatment
manage and treat patients with options will be most effective
enduring or permanent myeloma for myeloma patients with
kidney disease. significant kidney disease.
Infoline: 0800 980 3332 27Questions for your
doctor/medical team
Some questions you may want to ask your doctor
or medical team include:
Are my kidneys affected? Will my anti-myeloma
What is my creatinine level? treatment help my myeloma
kidney disease?
How often should I have check-
ups and blood tests? Will I need to have additional
treatment for my myeloma
Will my bisphosphonate dose kidney disease?
be reduced or stopped?
Will I need dialysis? What
What can I do to help improve effect is this likely to have
my kidney function? on my day-to-day life?
28 www.myeloma.org.ukMedical terms explained
Anaemia: A condition in which Erythropoietin (EPO):
the amount of haemoglobin in A hormone produced by the
the blood or the number of red kidneys, which is involved in
blood cells is below the normal the production of red blood
levels, causing shortness of cells. Injections of synthetic
breath, weakness and tiredness. erythropoietin (EPO) can be
Antibodies (immunoglobulins): given to patients who are
Proteins found in the blood anaemic.
produced by cells of the immune Fatigue: A feeling of being
system, called plasma cells. Their exceptionally tired, lethargic or
function is to bind to substances exhausted all or most of the time.
in the body that are recognised It does not result from activity or
as foreign, such as bacteria and exertion and is not relieved by
viruses (known as antigens), rest or sleep.
enabling other cells of the Glomerular filtration rate (GFR):
immune system to destroy and A measurement of how well the
remove them. kidneys are working by testing
Bisphosphonate: A type of drug the amount of creatinine in the
that slows down or prevents blood.
bone damage. Glomerulus: The part of the
Bone marrow: The soft, spongy kidney that is responsible for
tissue in the centre of bones that filtering the blood.
produces blood cells. Hormone: A chemical messenger
Dialysis: A procedure which released by a cell or organ in
removes waste products from one part of the body that affects
the blood, performed when a another part of the body.
patient’s kidneys have stopped Hypercalcaemia: A higher than
working. normal level of calcium in the
blood, which may cause loss of
Infoline: 0800 980 3332 29appetite, nausea, thirst, fatigue, that remove waste from the
muscle weakness, restlessness blood to produce urine.
and confusion. Non-steroidal anti-inflammatory
Immune system: The complex drug (NSAID): A type of drug
group of cells and organs used to prevent or treat pain
that protect the body against which do not contain steroids.
infection and disease. Paraprotein: An abnormal
Immunoglobulins (antibodies): antibody (immunoglobulin)
Proteins found in the blood produced in myeloma.
produced by cells of the immune Measurements of paraprotein
system, called plasma cells. Their in the blood can be used to
function is to bind to substances diagnose and monitor the
in the body that are recognised disease. Also known as M protein.
as foreign, such as bacteria and Peritoneum: A large, thin
viruses (known as antigens), and complex lining within the
enabling other cells of the abdomen which provides a
immune system to destroy and covering and support for organs
remove them. such as the large and small
Light chain: The smaller of bowel, and the stomach.
two components that make up Plasma cells: A type of white
the structure of antibodies (or blood cell that produce
immunoglobulins). There are two antibodies (immunoglobulins) to
types of light chain, kappa and fight infection.
lambda.
Quality of life: A term that refers
Malignant: A term for cancerous to a person’s level of comfort,
cells which have the ability to enjoyment, and ability to pursue
spread. daily activities. It is a measure of
Nephron: One of thousands of an overall sense of wellbeing.
tiny structures within the kidney
30 www.myeloma.org.ukRed blood cells: A type of blood Tubule: Small tube found in the
cell which transports oxygen kidney which reabsorbs salts,
around the body. minerals and sugars back into
Relapse: The point where disease the blood.
returns or becomes more active Vitamin D: A molecule which
after a period of remission or helps regulate the amount of
plateau (often referred to as calcium in the body, promoting
stable disease). healthy bones and teeth. Vitamin
Renin: An enzyme secreted by D is made by our body in reaction
and stored in the kidneys. It plays to sunlight. Vitamin D is also
an important role in regulating found in a small number of foods,
blood pressure. such as oily fish (e.g. salmon,
sardines) and eggs.
Side-effects: The undesired
effects caused by a drug or White blood cells: A type of
treatment, for example fatigue or blood cell involved in the body’s
nausea. immune system, which help to
fight infection and disease.
Stem cell: A type of cell from
which a variety of cells develop. Zoledronic acid (also known
Haematopoietic stem cells give as Zometa®): A type of
rise to red blood cells, white bisphosphonate drug which is
blood cells and platelets. They given by intravenous infusion.
are harvested and collected for
stem cell transplantation.
Tamm Horsfall protein:
The most abundant protein in
normal urine. Its function is not
well understood, but it can bind
to free light chains in the kidney,
causing damage.
Infoline: 0800 980 3332 31Useful organisations Carers UK www.carersuk.org 0808 808 7777 Provides advice, information and support for carers. Citizens Advice www.citizensadvice.org.uk England: 03444 111 444 Wales: 03444 77 20 20 Scotland: 0808 800 9060 Northern Ireland: call your local Bureau Offers advice about debt and consumer issues, benefits, housing, legal matters and employment. Macmillan Cancer Support www.macmillan.org.uk 0808 808 0000 Provides practical, medical and financial information and support to all cancer patients and their carers. Maggie’s www.maggiescentres.org 0300 123 1801 Provides free practical, emotional and social support to people with cancer and their family and friends. Mind www.mind.org.uk 0300 123 3393 Provides advice and support to empower anyone experiencing mental health problems. NHS 111 Service www.nhs.uk/111 111 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. 32 www.myeloma.org.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
Learn about myeloma from experts and meet others
at our Patient and Family Myeloma Infodays.
Order or download our information, which covers all aspects
of myeloma - call 0800 980 3332 or visit www.myeloma.org.uk
Find your nearest Myeloma Support Group to meet up
and talk to other people face to face.
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.
Infoline: 0800 980 3332 33We 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 fundraising@myeloma.org.uk 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 34 www.myeloma.org.uk
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 35Notes 36 www.myeloma.org.uk
Published by: Myeloma UK Publication date: October 2013 Last updated: December 2017 Review date: December 2020 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. To fill in a short survey about our patient information online, please go to www.myeloma.org.uk/pifeedback If you’d like to give feedback specifically about this publication, please email myelomauk@myeloma.org.uk For a list of references used to develop our resources, visit www.myeloma.org.uk/references
Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG T: 0131 557 3332 E: myelomauk@myeloma.org.uk Charity No: SC 026116 Myeloma Infoline: 0800 980 3332 or 1800 937 773 from Ireland www.myeloma.org.uk Myeloma Awareness Week 21 - 27 June
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