Download Hodgkin lymphoma (HL)

Hodgkin
lymphoma
(HL)
For adults and
children with
blood cancer
bloodwise.org.uk
Patient
information
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This is a place to put important information about you,
your condition and key contacts.
Name and hospital number
My NHS number
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My consultant
My key worker (usually your CNS)
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As the weeks passed and having gathered copious
quantities of information from charities, books and
my healthcare team, I slowly began to understand my
condition and with understanding came acceptance.
A team of people helped produce this booklet. We’d like to thank
a member of our Medical Advisory Panel, Dr Chris Hatton, for
his help and support in developing the content and checking for
clinical accuracy. The draft was also assessed at an early stage by
clinical nurse specialist Jane Gibson.
Bloodwise staff revised the text to make it easy to read, and
a non-medical panel of patients checked it for understanding.
A list of references used in this booklet is available on request. Please email us
at [email protected]
Our patient information is for you and those close to you to
use whenever, wherever and however you need it. You’ll probably
have lots of questions; this booklet will help you answer as many
of them as possible.
Our information is developed for
and with patients. It’s written in line
with national guidelines and created
with health professionals from our
dedicated Medical Advisory Panel, so
you know it’s accurate and up to date.
This booklet is one of many we make –
you can find a list of our other booklets
on pages 94–95. For the very latest
information, visit our website.
Disclaimer
We make every effort to make sure that the information in this booklet is accurate,
but you shouldn’t rely on it instead of a fully trained clinician. It’s important to
always listen to your specialist and seek advice if you have any concerns or questions
about your health. Bloodwise can’t accept any loss or damage resulting from any
inaccuracy in this information, or from external information that we link to.
The information in this booklet is correct at the time it was printed (January 2014).
Date of next review January 2017.
Bloodwise, 39–40 Eagle Street, London WC1R 4TH
T: 020 7504 2200 E: [email protected] W: bloodwise.org.uk
26
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Contents
Introduction
3Introduction
This is a booklet for people with the most
common type of Hodgkin lymphoma,
and for people who know someone with
Hodgkin lymphoma.
4
Hodgkin lymphoma at a glance
7
Your immune and lymphatic system
11
What is Hodgkin lymphoma?
15
Who gets Hodgkin lymphoma?
19Symptoms
23Diagnosis
39Treatment
53
The outlook
57
Everyday life and Hodgkin lymphoma
67
Research and new developments
71
Places you can get help and support
77
Questions to ask
Being told that you, or a loved one, have any type of cancer
can be one of the hardest things you’ll ever have to hear.
There’s sure to be a lot of information to take in at this time.
We hope this booklet will help you to understand your
condition and feel in control throughout this time. We’ll
answer as many of the questions you might have along
the way as we can – from symptoms through to tests,
treatment and living with Hodgkin lymphoma and where
you can get support.
Every person is different, with a different medical history.
So when you’re deciding what’s right for you, discuss your
situation with your specialist as well as getting information
from this booklet and other places.
82Notes
87 About us
90 How you can get involved
94 Your feedback and other booklets
We also produce a diary which you can order online. It’s
yours to use however you like – for practical information
or to record thoughts or sketches > bloodwise.org.uk/
patient-diary
4 Hodgkin lymphoma at a glance
Hodgkin lymphoma
at a glance
Hodgkin lymphoma at a glance 5
In the majority of cases, Hodgkin
lymphoma can be treated successfully.
Most patients with Hodgkin
lymphoma will have
chemotherapy, and sometimes
steroids and radiotherapy.
What is Hodgkin lymphoma?
What are the treatments for Hodgkin lymphoma?
If you’ve got Hodgkin lymphoma, your body is producing
lymphocytes (a certain type of white blood cell that fights
infection) which don’t work properly. These cells cluster
together to form lumps in your lymph nodes (glands).
These lumps usually form in the neck and head, but can
happen anywhere you have lymph nodes.
The decision on which treatment is best for you will
depend on the stage (extent) of your Hodgkin lymphoma,
your age and general wellbeing. Most patients with
Hodgkin lymphoma will have chemotherapy, and
sometimes steroids and radiotherapy. In a small number
of cases Hodgkin lymphoma doesn’t respond to standard
treatment (refractory disease), or returns after initially
responding (relapse). In these cases, your doctor may
suggest using higher doses of chemotherapy followed
by a stem cell transplant.
Who gets Hodgkin lymphoma?
People diagnosed with Hodgkin lymphoma are usually
between 15 and 25 years, or over 50 – but it can develop
at any age. About 1,800 people are diagnosed with
Hodgkin lymphoma each year in the UK – so around
three people in 100,000.
What’s the outlook?
Younger people tend to do well on treatment, as do many
older patients (over 50), although sometimes treatment
may be slightly less successful in older, more frail patients.
It’s really important to remember that each patient is
different, so your consultant is the best person to ask
about your outlook.
Can Hodgkin lymphoma lead to any other
conditions?
Most side effects of Hodgkin lymphoma are due to
treatment, and can be managed. Although if you have
Hodgkin lymphoma you often have a weakened immune
system, meaning it’s more difficult for your body to
fight infection.
This can sometimes lead to conditions such as anaemia
(which is where the number of red blood cells you have
is too low) and shingles (an infection of a nerve and the
skin around it).
6 Your immune and lymphatic system
Knowing the basics
about the immune
system and your
lymphatic system
is useful.
Your immune and lymphatic system 7
Your immune and
lymphatic system
It’s a good idea to know a bit about the immune
and lymphatic system as your healthcare team
will talk about them to you.
Your immune system is a network of cells, tissues and
organs which protect your body against infection. It’s
able to react quickly to infections it’s seen before, and
lymphocytes (a type of white blood cell that fights infection)
play an important role in this. There are lots of different
kinds of lymphocyte, but the important ones to know are
B lymphocytes.
Hodgkin lymphoma is a disease which affects your
lymphatic system. The lymphatic system is part of the
immune system. A network of thin tubes called lymph
vessels runs around your body. The vessels collect fluid
called lymph and return it to your blood. Lymph bathes
all the cells in your body. It contains lots of lymphocytes,
carries nutrients and removes bacteria from infected areas.
8 Your immune and lymphatic system
You can find out more about the immune system
on our website > bloodwise.org.uk/HLlinks
Your immune and lymphatic system 9
Barriers –
nose, mucous
Tonsils
Lymph nodes
(neck)
Lymphatic
vessels
Thymus
Along the lymph vessels are small lumps of tissue called
lymph nodes or lymph glands. There are many of these
in your body. It may be possible for you to feel normal
lymph nodes in the neck and groin, particularly if you’re
slim. If you get an infection when you’re healthy, these
can swell and become tender – which people may refer
to as ‘swollen glands’.
Lymph nodes
(armpit)
Spleen
As lymphocytes pass through the lymph nodes, these
nodes are changed and ‘activated’ to fight certain types
of infection.
Your spleen is also part of your lymphatic system. It can
do some of the same work as the lymph nodes. It also
filters out old or damaged cells from the blood stream
and helps to fight infection.
Bone marrow
Lymph nodes
(groin)
Lymphatic
vessels
10 What is Hodgkin lymphoma?
There are many
different types of
lymphoma. Make
sure to check with
your specialist that
this is the right
booklet for you.
What is Hodgkin lymphoma? 11
What is Hodgkin
lymphoma?
Lymphoma is a cancer of the lymphatic system.
Hodgkin lymphoma is a type of lymphoma
where an abnormal white blood cell called the
Reed-Sternberg is present.
Lymphoma
Lymphoma is a cancer of the lymphatic system. When
you have lymphoma some of your lymphocytes don’t
work properly. Sometimes they aren’t developed fully
(immature), they divide in an abnormal way, or don’t
die when they should. These abnormal lymphocytes
can build up in your lymph nodes, causing them to swell
and form a lump. Swollen lymph nodes can be in a place
where they can be easily felt (such as your armpits, neck
or groin) or deep inside your chest and abdomen. The
abnormal lymphocytes can affect how your immune
system works, which can sometimes make you more
likely to get infections.
12 What is Hodgkin lymphoma?
Even if the diagnosis looks similar
– everyone will have a different
experience.
What is Hodgkin lymphoma? 13
Hodgkin lymphoma
There are two main kinds of lymphoma – Hodgkin
lymphoma and non-Hodgkin lymphoma. In Hodgkin
lymphoma, the abnormal cells are called Reed–Sternberg
cells; these are always present if you have Hodgkin
lymphoma. Any other lymphoma without these cells
is called a non-Hodgkin lymphoma. Reed–Sternberg cells
are a type of white blood cell called a B lymphocyte that
has become cancerous.
The most common place where patients find a lump
caused by Hodgkin lymphoma is the neck or chest but
they can occur anywhere in the body where there are
lymph nodes and also in some organs. There are two
main types of Hodgkin lymphoma:
›› classical Hodgkin lymphoma
›› nodular lymphocyte-predominant Hodgkin lymphoma
(NLPHL).
The Lymphoma Association produce a fact sheet on nodular
lymphocyte-predominant Hodgkin lymphoma. Make sure
to check with your specialist which is the right information
for you > go to lymphomas.org.uk and search for ‘nodular’
This booklet is relevant to people with classical Hodgkin
lymphoma – the most common type of Hodgkin lymphoma.
If you have been diagnosed with NLPHL, which accounts
for 5% of Hodgkin lymphoma cases, please see the signpost
to the Lymphoma Association booklet, on the opposite page.
14 Who gets Hodgkin lymphoma?
When you’re diagnosed
with any cancer, one
of the first things you
might think is: why me?
Who gets Hodgkin lymphoma? 15
Who gets Hodgkin
lymphoma?
Hodgkin lymphoma is quite rare, but there are
still about 1,800 people diagnosed with it each
year in the UK, so about 3 people in 100,000.
It’s important to understand that you can’t catch
lymphoma, or pass it on to someone else.
In most cases we don’t know what causes Hodgkin
lymphoma, but there are some things which can make
the risk of developing the disease slightly higher.
16 Who gets Hodgkin lymphoma?
Who gets Hodgkin lymphoma? 17
Age
Epstein-Barr virus
Hodgkin lymphoma is most common in people between
15 and 25 years, and over 50 years – but it can happen
at any age.
It’s thought that people who’ve been exposed to the
Epstein-Barr virus, which causes glandular fever, may
have a slightly higher risk of getting Hodgkin lymphoma.
Researchers are working to find out more, as it’s not clear
at the moment how exactly the virus is linked to Hodgkin
lymphoma and by how much it increases your risk, if at all.
Gender
In the UK, Hodgkin lymphoma is slightly more common
in men than in women; we don’t know why.
Lowered immunity
You’re more likely to get Hodgkin lymphoma if you
have problems with your immune system. This might
be the case if:
›› you have HIV or AIDS
Family history
Hodgkin lymphoma isn’t a hereditary disease, though
there’s some evidence that having a parent, child, brother
or sister with Hodgkin lymphoma or another blood or
lymphatic cancer can slightly increase your risk. We don’t
know if this is because of a genetic fault or if it’s because
members of the same family are more likely to have the
same type of lifestyle.
›› y ou’ve had an organ transplant and are taking
drugs to stop the new organ being rejected
›› y ou have an auto-immune condition, such as
rheumatoid arthritis.
You can find more information about risk factors associated
with Hodgkin lymphoma on our website > bloodwise.org.
uk/HLlinks
18 Symptoms
Many of the symptoms
you get with Hodgkin
lymphoma are similar
to symptoms you get
for other, less serious
illnesses.
Symptoms 19
Symptoms
There are a number of symptoms you might
have before and after you’re diagnosed. Not
everyone will get the same ones.
Common symptoms
The most common symptom of Hodgkin lymphoma is one
or more swellings in the neck or above the collar-bone –
these are swollen lymph nodes. Usually the enlarged nodes
are painless, but in about 1 in 10 cases they become painful
after drinking alcohol.
You might also get swollen lymph nodes in your armpit
or groin. However, if you have Hodgkin lymphoma you can
get swelling in any of your lymph nodes (see page 9).
20 Symptoms
Symptoms 21
I found it quite hard to tell what
symptoms to be concerned about,
because some of them are quite
common. I found the best thing
to do was just to check it out with
my healthcare team.
If the affected node is deeper in your body, rather than just
beneath the surface of your skin, then the swelling may not
be visible. However, you may experience other symptoms,
caused by the pressing of this lump against another organ.
For example, if you develop Hodgkin lymphoma in your
chest you may feel chest pain, a cough or breathlessness.
This can sometimes be found during a routine chest x-ray,
at a time when you have no other symptoms.
B symptoms
There are three specific symptoms of Hodgkin lymphoma
known as B symptoms. Having or not having these
can affect which treatment is right for you, because they
can show how far the lymphoma has spread. These
symptoms are:
›› fever
›› weight loss
›› night sweats.
Other symptoms
You may experience some other symptoms with Hodgkin
lymphoma. Although these are not classed as B symptoms,
so they won’t be used as a guide for treatment decisions.
These might include:
›› fatigue (or tiredness)
›› itching (either widespread or in one place).
22 Diagnosis
It’s important to know
and understand your
diagnosis. You could
ask your team to write
it in this booklet, so
you have it at hand.
Diagnosis 23
Diagnosis
It’s really important to have all these tests
and get a clear diagnosis before you start
any treatment. At any time, you can ask your
healthcare team to tell you why you’re having
a certain test and what the results mean.
Tests to diagnose Hodgkin lymphoma
If your GP suspects you might have Hodgkin lymphoma,
they’ll refer you to hospital for more tests. You’ll need
to have a number of tests and scans to confirm whether
you have Hodgkin lymphoma, including some blood tests
and possibly a chest x-ray to look at your general health.
It can be a worrying time while you’re waiting for the
results of these tests. Many patients say that it helps
to keep themselves occupied; talk to family and friends,
or other people who’ve been through the same thing.
24 Diagnosis
Diagnosis 25
I did feel from time to time that
I couldn’t keep track of all the tests
and what they were for. I often wrote
down basic details, and just kept
checking in with my key worker on
the specifics for each one.
Lymph node biopsy
CT scan
You’ll need a lymph node biopsy to confirm the diagnosis
of Hodgkin lymphoma. A biopsy is a minor surgical
procedure where a sample of a tissue or organ is taken
and examined in the laboratory. Sometimes the whole
lymph node is removed; this is called an excision biopsy.
Some people might also have a CT scan to help diagnose
Hodgkin lymphoma – this is usually done if you have other
symptoms as well as lumps.
This test is really important in diagnosing Hodgkin
lymphoma, because it shows your healthcare team if
your sample contains Reed-Sternberg cells – these cells
are the defining feature of Hodgkin lymphoma.
You’ll need a small number of stitches after the biopsy,
but you can normally go home on the same day and have
the stitches removed about a week later by your GP. If the
node is easy to reach, the biopsy can be done under local
anaesthetic. If the node is deeper in your body, you may
need to have the biopsy done under general anaesthetic.
A CT scan is a type of X-ray that produces a detailed picture
of the internal organs. It can check if any other lymph nodes
are affected and if any lymphatic organs like the spleen are
swollen. The scan won’t cause any pain. You’ll lie on a table
that moves into a tunnel while the pictures are taken. Your
body is never completely enclosed and you’ll be able to
talk to the person who takes and assesses the images (the
radiographer) during the scan. You might need to drink
a dye, or have dye injected into one of your veins, to help
get a better image. The dye won’t cause you any harm,
although it might make you feel a bit unwell for a short time.
26 Diagnosis
Diagnosis 27
It was a worrying time while I was
waiting for the results of these tests.
I found it useful to lean on friends and
family at this point, and also to contact
support groups so I could speak to
other people who were going through
– or had been through – the same thing.
STAGE
FEATURES
I
Only one group of lymph nodes is affected, in one
place in your body.
II
More than one group of nodes is affected but all
affected sites are on the same side of the diaphragm
– either above or below. The diaphragm is a sheet
of muscle separating your chest from your abdomen
(stomach area) and pelvis (hip area).
Staging
III
Lymph nodes on both sides of the diaphragm are
affected, or the lymphoma has spread from lymph
nodes into organs close to the affected node, or nodes.
Staging describes the extent of a person’s disease. Your
healthcare team will use a system based on the numbers
I – IV to categorise this.
IV
The lymphoma has spread to other organs, such
as the lungs, liver or bone marrow.
A
No B symptoms (see below)
Staging for Hodgkin lymphoma is based on what symptoms
you have and how many sites in your body are affected
by lymphoma. The stage will affect what treatment your
consultant recommends for you.
For any stage of Hodgkin lymphoma, a letter ‘A’ or a ‘B’ can
be added to your diagnosis. These letters indicate whether
you have certain symptoms or not. So your diagnosis might
be IA or IIB, for example.
B symptoms are present:
Early and advanced Hodgkin lymphoma
Stage IA and IIA are called early stage disease. Stage IIB,
III and IV are called advanced disease. The treatment you
receive will depend on the stage of the Hodgkin lymphoma.
B
› fever (greater than 38°C)
› drenching night sweats
› u
nexplained weight loss in the last six months
(10% or more of your previous weight).
28 Diagnosis
Diagnosis 29
Further tests
PET scan or PET/CT scan
After you’ve been diagnosed, you’ll have further tests
so your healthcare team can find out which areas of your
body are affected by Hodgkin lymphoma, and ‘stage’ the
disease. Some of these tests need special preparation, like
not eating or drinking beforehand. Your healthcare team
will tell you about any tests where you may need to prepare
in a certain way.
You might hear this called either a PET scan or PET/CT
scan, as some scanners do both PET and CT scanning.
This scan is used:
CT scan
›› during treatment, to check how you’re responding
and assess if you need to change treatments
If you didn’t have a CT scan as part of your diagnosis,
you may have one afterwards. See page 25 for more about
CT scans.
›› a fter you’re diagnosed, to accurately stage Hodgkin
lymphoma and find out which areas of your body
are affected
›› at the end of your treatment to confirm remission
(the absence of active cancer).
Before you’re scanned, you’ll have an injection which
contains radioactive sugar. This small amount of radioactivity
is quite safe for you. The sugar will help to show up active
lymphoma cells on the scan. You’ll be asked to lie on a table
as you move through a tunnel. This scan can take up to three
hours, including preparation time.
30 Diagnosis
Diagnosis 31
Magnetic resonance imaging (MRI)
This scan shows up soft tissues (non-bony parts) and uses
radio waves rather than X-rays. Not everyone will have
one, but they can help your team look for affected lymph
nodes in soft tissues around your body. You’ll be asked
to lie on a table which will move you through the scanner.
It isn’t painful but it can take up to an hour to complete
and some people find it claustrophobic. As with a CT scan,
you might need to have a dye injected into one of your
veins to get a better image.
Pregnant women may have an MRI in place of a PET scan,
as there is no radioactivity involved in an MRI. You’ll
need to remove any metal you’re wearing before an MRI,
including jewellery. If you have any metal in your body
– for example pacemakers or bone pins – you should tell
your radiographer.
Other tests
You may have a range of other tests, which will help your
healthcare team check your general health and assess how
well you might respond to certain treatments. These may
include:
›› a full blood count – this measures the amount of each
type of blood cell in your blood: red cells, white cells
and platelets
›› tests on your heart, liver, thyroid and kidneys
›› tests for HIV, hepatitis B and hepatitis C.
You can find more detailed information about tests for
Hodgkin lymphoma on our website > bloodwise.org.uk/
HLlinks
Your healthcare team
If you’re diagnosed with Hodgkin lymphoma, your hospital
will give you the names and contact details of your
consultant, clinical nurse specialist and other members
of your healthcare team – there’s space to write them at the
back of this booklet if you want to. You can then use these
details to contact your team if you have any questions you
want to ask when you’re not at the hospital.
Your consultant
Most patients with a blood cancer are treated by a
haematologist – a doctor who specialises in treating
patients with blood diseases. Some patients are treated
by an oncologist (a cancer specialist). Either way, your
consultant at the hospital will be an expert in treating
your specific disease.
32 Diagnosis
Diagnosis 33
You can read about the experiences of other people who
are going through – or have been through – the same thing
on our website > bloodwise.org.uk/patient-support
71
You can find a list of support organisations on page 71
Finding out more
Your clinical nurse specialist
Talking to other patients
All cancer patients are normally
given a key worker, usually a clinical
nurse specialist. They’re your point
of contact with the rest of your
healthcare team. You may like to
have a meeting with your clinical
nurse specialist when you’re first
diagnosed, to discuss your condition.
Your clinical nurse specialist will
be with you every step of the way,
so do make use of their help and
expertise if and when you need it.
You might want to ask your
consultant or key worker if you
can talk to someone who’s had
the same diagnosis and treatment
as you. If you do this, remember
that someone else’s experience
won’t always be the same as yours.
For example, some patients have
side effects from a drug and other
patients don’t.
Your multidisciplinary team
When you’re diagnosed with
something like Hodgkin lymphoma,
your condition is discussed at
a multidisciplinary team (MDT)
meeting. An MDT brings together
doctors, nurses and any other
specialist staff who will be looking
after you. A senior consultant usually
leads the meetings, which are held
regularly. They’ll discuss the best
treatment for you and every aspect
of your care, including any changes
in your condition.
You may also want to contact a
support organisation – many provide
patient meetings or further online
support.
›› After you’ve been diagnosed, it’s
worth taking some time to think
about what information you want
to know, when and how. For some
people, this is a way to have some
control over what’s happening.
›› L et your consultant and clinical
nurse specialist know how much
information you’d like, and in what
form. You can always ask for more
information later.
Your other healthcare
professionals
›› W
rite down any questions you have
and keep them handy for when you
see your consultant or key worker.
If they can’t answer your questions,
they’ll be able to tell you who to
speak to.
It’s definitely worth telling other
healthcare professionals you
see – like your dentist or optician
– about your diagnosis and any
medication you’re taking.
›› You might prefer to ask your
clinical nurse specialist questions
rather than your consultant, but
do whatever works for you.
›› Most patients say they find it
useful taking someone with them
to consultations. If you’d find it
helpful, you could ask them to take
notes while you listen. You can
choose who to take; it doesn’t have
to be a family member.
›› If you’re staying in hospital it
might be harder to have someone
with you when you speak to your
consultant. It might be useful
to ask in advance what time the
consultant is likely to speak
to you, so you can try to arrange
for someone to be with you at
that time.
›› Some people find that joining
a patient support group is
helpful. It may be easier to talk
to someone outside of your family
about your situation. Sharing
similar experiences may help.
34 Diagnosis
Diagnosis 35
Your questions
You can find a list of questions you might want to ask
on page 77 and room to write more questions on page 82
77, 82
We also produce a diary which you can order online. It’s
yours to use however you like – for practical information
or to record thoughts or sketches > bloodwise.org.uk/
patient-diary
36 Diagnosis
Diagnosis 37
I didn’t know if people would
understand. But I’ve found since telling
people that I’ve largely continued
to be treated as ‘me’ rather than ‘me
with cancer’.
Telling people
Telling your GP
Many patients tell us that keeping in touch with loved ones
throughout their illness keeps them going. However, some
people may find it stressful having to discuss their condition
lots of times with family, friends and colleagues.
Your team at the hospital will keep your GP informed about
your condition and any treatment you’re having. They’ll
usually send your GP a letter with this information. As the
patient, you’ll often be sent a copy too. These letters can
have a lot of medical terms in them which you might not
have heard before, or there might be something in it which
worries you. If this is the case, let your hospital or GP know
– a quick chat with them might help to reassure you.
You might find it easier to ask a trusted family member or
friend to be your ‘information person’ and ask them to keep
people updated on your behalf. Another idea is setting up
a blog or Facebook page, so you or different people can post
information on it that everyone can read. You might not
want to tell many people – or anyone at all – about your
condition. This is ok too, whatever works for you.
Cancer and work
Consider telling someone at work about your diagnosis.
It can be hard asking for time off at short notice if no one
knows about your illness, and your colleagues and human
resources department might be able to offer support.
Talking to children and teenagers about your condition
can be a difficult thing to do. There are many organisations
to support you and offer advice on how to explain it to
children of different ages.
There’s more information about cancer and how it can
affect your work or study on page 63
Macmillan produce a booklet about talking to children
about cancer; you can order a booklet > go to macmillan.
org.uk then search for ‘talking to children and teenagers’
63
Macmillan have some useful advice about cancer and work;
you can also order a booklet > go to macmillan.org.uk then
search for ‘work’
38 Treatment
The treatment
you decide on with
your healthcare
team will depend
on the stage of your
Hodgkin lymphoma,
your age and
general wellbeing.
Treatment 39
Treatment
Treatment for Hodgkin lymphoma is usually very
successful. The treatment you have depends
on the results of your tests and what stage the
Hodgkin lymphoma is but typically includes
chemotherapy and in some cases radiotherapy,
steroids and – if the Hodgkin lymphoma comes
back – a stem cell transplant.
Clinical trials
If there’s a clinical trial (study) available that’s suitable for
you, your consultant may recommend that you consider
this. Clinical trials are widely used in the treatment of
Hodgkin lymphoma.
Clinical trials are done for several reasons, including to
look for new treatment options and to improve existing
treatments. Taking part in a clinical trial has many
advantages, such as the opportunity to have the newest
available treatment which may not be given outside of
the trial. You’ll also be very closely monitored and have
detailed follow-up.
40 Treatment
Treatment 41
My healthcare team were amazing,
no matter if it was a good day or a bad
day. They supported me throughout
my treatment and were always there
to answer any questions I had.
Risks to fertility
In a clinical trial, the best current treatment is compared to
one that’s at least as good, and could be better. Your safety
and wellbeing is always the first priority when taking part
in a clinical trial.
Taking part in a clinical trial does come with uncertainties,
and you may prefer not to take part in one. If you don’t want
to be in a trial, or there isn’t a suitable trial available, you’ll
be offered the best treatment available at that time which
is suitable for your individual condition.
For more information, read our booklet > Clinical trials
You can find out more about clinical trials at the UK Clinical
Trials Gateway > ukctg.nihr.ac.uk
After you’ve been diagnosed, and before you begin
treatment, it would be a good idea to discuss with your
doctor the options available to protect your fertility.
The risk is low for both men and women, but becomes
higher for older women as there is a possibility that
chemotherapy may lead to an earlier menopause.
All men will be offered the opportunity to store sperm
and women will have opportunity to discuss potential
egg freezing or embryo preservation. These options
should be discussed at the outset of your treatment.
42 Treatment
Treatment 43
Treatment planning
Your healthcare team will look at
a number of things when deciding
what treatment to recommend to
you – such as your test results, the
symptoms you have, what stage
the Hodgkin lymphoma is and your
general age and fitness.
If you have any concerns about
treatment you should discuss these
with your consultant or key worker.
Early stage
If you have early stage disease (IA
and IIA) your treatment will usually
be 2–4 cycles of chemotherapy.
You may also have local radiotherapy,
specifically on the affected lymph
nodes. Radiotherapy is used to try
to prevent the disease coming back.
Localised radiotherapy is used instead
of extra cycles of chemotherapy,
which may not be necessary for early
stage lymphoma.
Chemotherapy
Advanced disease
If you have advanced disease your
treatment will usually be six or more
cycles of chemotherapy, and possibly
radiotherapy.
Treatment if you’re under 25 years
If you’re under the age of 25, you can
be treated in a TYA centre (teenager/
young adult centre). You’ll be treated
in a TYA if you’re still attending
school and you’ll also have the option
if you’ve already left school. These
centres also provide psychological and
social support, which you can access
even if you’re not being treated there.
Your healthcare team can refer you
to your nearest TYA. Most patients with Hodgkin
lymphoma will have chemotherapy.
This is usually a combination of drugs
known as ABVD, This stands for:
A A
driamycin™, also
known as doxorubicin or
hydroxydaunorubicin.
B bleomycin
How is chemotherapy given?
The treatment is usually given in an
outpatient clinic, although you may
need to stay overnight in hospital
on some occasions and with some
particular drugs.
Chemotherapy is usually given
in cycles – you’ll have treatment for
a day if you’re on ABVD, or for a few
days with other regimens.
V vinblastine
D dacarbazine
Some centres may offer a different
type of chemotherapy drug
combination. Your healthcare team
will discuss what’s right for you.
All of the drugs used to treat Hodgkin
lymphoma work by interrupting the
growth of cancerous cells in your body.
Chemotherapy is given every two
weeks. One cycle (or course) is two
lots of the same chemotherapy
(ABVD) and is therefore completed
in four weeks.
44 Treatment
Treatment 45
We have another booklet you may like to read >
Chemotherapy: What do I need to know?
There are three main types of central line:
›› a PICC line, where a long thin tube is passed up a vein
in your arm to your chest
›› a central line that’s put into the main vein in your chest
– the end comes out of the skin on your chest so drugs
can be given through it; you might hear it being called
a Hickman™ line
›› a ‘port’ that’s put into your chest which doesn’t come
out through your skin; drugs are injected into it instead.
Central lines can usually be put in using local anaesthetic
at an outpatient clinic. Your healthcare team will tell you
how to look after your central line. Central lines can be
removed easily after your treatment.
Steroids
Chemotherapy for Hodgkin lymphoma is usually given
as an intravenous (IV) infusion (into a large vein in the arm).
Sometimes it’s given through a central line (an IV line into
the chest). Having a central line can be useful, as it means
you don’t have to have the treatment injected each time
(which can sometimes be uncomfortable after several cycles
of treatment).
You may take steroids as well as chemotherapy drugs.
Steroids can make some chemotherapy treatments more
effective and reduce sickness you may get. The steroid
normally given to reduce sickness is called dexamethasone,
which is given as an injection or as a tablet.
If you’re taking steroids, you should carry a card around
with you which makes this clear, so doctors will know in case
of an emergency. Your healthcare team should give you one
of these cards.
46 Treatment
Treatment 47
Radiotherapy
Side effects
Radiotherapy uses high energy rays
to kill cancer cells in a specific area.
It can be an effective treatment for
diseases which affect a particular
part of the body, such as lymphoma.
You may experience some side effects
from the different types of treatment
you have.
You will likely be given radiotherapy
if you have early stage disease (IA and
IIA) in only one or a couple of areas
of the body. Or occasionally you
might have radiotherapy in later stage
disease to try and shrink lymph nodes.
Before you have radiotherapy, you’ll
have scans so your doctors know
exactly where to target it, and they’ll
mark this on your body. The actual
treatment only takes a short time
and it isn’t painful. You lie still inside
a doughnut shaped scanner with the
treatment area exposed. You normally
have radiotherapy as an outpatient
for up to three weeks, then have
a break for a few days before having
another dose.
Chemotherapy
For most patients with Hodgkin
lymphoma, side effects from
chemotherapy aren’t severe and
they usually go away when
treatment stops. They may include:
››
››
››
››
››
››
››
››
››
››
››
fever
constipation
tiredness
cough/breathlessness
hair loss
bleeding and/or bruising
anaemia (which can cause paleness,
tiredness and breathlessness)
mouth sores
nausea (feeling sick) and vomiting
poor appetite (loss of taste)
weight changes.
You’ll be given drugs called antiemetics to stop you feeling sick and
to help with the vomiting you might
get with certain treatments. If you
have any other side effects, tell your
healthcare team as they may be
able to help.
Some side effects are associated
with specific drugs. For example the
belomycin drug in ABVD can cause
a cough or breathlessness. Let your
doctor know straight away if this
occurs during or after treatment has
been completed.
Also, the dacarbazine drug in ABVD
may cause some pain at the spot it’s
given at. If this happens there are
things which can be done to help,
so you should tell your nurse or
doctor immediately if you feel pain.
Steroids
Side effects from steroids can include:
›› feeling agitated
›› weight gain
›› water retention (build-up) around
your face and ankles
›› increase in appetite
›› raised blood sugar, particularly in
patients with diabetes.
Radiotherapy
The side effects from radiotherapy will
depend on the area of the body being
treated but common side effects are
fatigue and redness in the treated area.
Your healthcare team will speak to you
in more detail about this.
You’re unlikely to have all of these.
Radiotherapy doesn’t make you
radioactive and it’s fine to be around
other people as normal.
For information about the side effects of chemotherapy see
our booklet > Chemotherapy: what do I need to know?
You can find out more about drugs
used to treat Hodgkin lymphoma
on our website > bloodwise.org.uk/
HLlinks
We have another booklet which
may help you if you need to choose
treatments > Treatment decisions
48 Treatment
Treatment 49
We have a booklet on supportive care which you might like
to read > Supportive care
Supportive care
You may also need what’s known as supportive care, during
and after treatment. Supportive care includes prevention
and treatment of infection, blood transfusions, mouth care,
diet, pain management and dealing with complications
associated with your illness or your treatment.
Stem cell transplant
In a small number of people, Hodgkin lymphoma doesn’t
respond to initial treatment (refractory disease), or returns
after at first responding well (relapse). If this is the case for
you, it’s important to remember that there’s still a good
chance of a successful outcome.
In these cases, if you’re otherwise fit and well, your doctor
may recommend using higher doses of chemotherapy
followed by a stem cell transplant.
Allogeneic transplant
An allogeneic transplant uses stem cells from a donor.
These are less common, but may be considered for a small
number of patients whose autologous transplants weren’t
successful, or for patients who didn’t respond well enough
to their initial treatment to have an autologous transplant.
If you relapse following an autologous transplant, you’ll
probably be given a monoclonal antibody drug, called
brentuximab vedotin, before you receive an allogeneic
transplant. Antibodies are proteins made by white blood
cells that circulate in the blood and help fight infection.
A monoclonal antibody will copy the effect of the body’s
natural antibodies. These drugs can attach to the proteins
on cancer cells and attack them, to help prepare the body
before an allogeneic transplant.
A stem cell transplant is also sometimes called a bone
marrow transplant. It aims to give patients healthy stem
cells to replace those which are destroyed by the high dose
chemotherapy. These stem cells then produce normal
blood cells. There are two main types of stem cell transplant:
Autologous transplant
An autologous transplant is when your own healthy
stem cells are collected from your bone marrow before the
high dose chemotherapy, then given back to you through
a drip afterwards.
You can find out more about stem cell transplants in our
booklet > Bone marrow and stem cell transplantation
50 Treatment
Treatment 51
Follow-up
If your condition responds well to initial treatment, there’s
a high chance that you won’t need further treatment. It’s
really important that you still come for follow-up checks
and monitor yourself for any symptoms, because relapses
can happen. The earlier a relapse is identified, the better
the chance of a successful outcome.
Vaccines and blood transfusions
The amount of follow-up appointments you’ll have may
vary, but normally you’ll have check-ups more regularly
in the first two years, then slightly less regularly after
two years. This is because the risk of relapse is highest
in the first two years after you complete your initial
treatment. Your healthcare team will explain how often
you should come for follow-up checks.
Hodgkin lymphoma patients must not receive blood or
any other blood product such as platelets that haven’t
been irradiated (treated with radiation). It’s important you
carry a card to inform other medical teams of this risk. Your
healthcare team should give you one of these cards; if you
haven’t been offered a card yet, you could speak to your key
worker or doctor about it on your next visit.
After treatment you may wonder whether there are any
specific signs or symptoms you should be looking out for.
An obvious reason to contact the hospital team would
be any new swellings. Similarly, fever, sweats or weight
loss should be reported. It’s a good idea to tell the hospital
team of any changes in your general health or any new
signs or symptoms you notice.
Once you’ve completed your treatment and you’re in
remission, you shouldn’t receive live vaccines (for example,
yellow fever, oral polio vaccine, measles and shingles), as
these may cause serious illness. Ask your healthcare team
for more advice about vaccines.
52 The outlook
Every person is
individual, so your
consultant and
healthcare team
are the best people
to ask about your
likely outlook
(your prognosis).
The outlook 53
The outlook
For most people with Hodgkin lymphoma,
your healthcare team will be aiming to achieve
a cure. This is achieved in the majority of cases.
Treatment is generally well-tolerated and leads
to few long-term side effects.
Prognosis
In general, the long-term outlook for people with
Hodgkin lymphoma is good, especially if it’s diagnosed
early. For younger and older patients the aim is cure,
and this is achieved in the majority of cases.
Even in patients who are slightly older (over 50), or more
frail, there are still a number of options and trials open
to you that your consultant will discuss.
54 The outlook
The outlook 55
Everyone is different and we
will all have different experiences
so I found it useful to talk to my
healthcare team about my outlook.
Your healthcare team will describe you as being ‘cured’
if you go into ‘complete remission’, which means that no
lymphoma can be seen on your scans. If there’s a reduction
in the amount of lymphoma, but it’s not completely gone,
this is called ‘partial remission’.
People generally cope well with treatment and have few
long-term side effects. However, as with any type of
chemotherapy or radiotherapy, there is always at least
a small risk of long-term effects. These include an increased
risk of second cancers, and problems with the thyroid, heart
or lung. The risk of long-term effects will depend on how
many cycles of treatment you’ve had and if you received
a transplant or not. However, every case is individual,
so your healthcare team will talk to you about this in more
detail before your treatment.
56 Everyday life and Hodgkin lymphoma
Your healthcare
team look after
your emotional
needs, as well
as your physical
ones.
Everyday life and Hodgkin lymphoma 57
Everyday life and
Hodgkin lymphoma
If you’ve been diagnosed with Hodgkin lymphoma
you might experience a range of emotions at
different times. There can be a physical impact
on your day-to-day life too. This section will
guide you through both aspects.
Looking after yourself emotionally
Being told that you have cancer can be very upsetting
and will almost certainly bring many different emotions.
Friends and family may be able to offer support, but
it may be harder for them to understand the long-term
emotional impact that you might experience.
Your healthcare team should look at your emotional,
as well as physical, needs – this is called a holistic needs
assessment. You’ll have one a few times throughout the
course of your treatment and beyond, as your emotional
needs might change.
58 Everyday life and Hodgkin lymphoma
Everyday life and Hodgkin lymphoma 59
Looking after yourself physically
Changes in your condition
Keeping active
When you’ve finished your treatment it’s important to
contact your healthcare team at the hospital straight away
if you notice any new symptoms, don’t wait for your next
check-up. Symptoms to watch out for are:
You might feel tired a lot (fatigue). This might be caused
by your Hodgkin lymphoma and isn’t the same as normal
tiredness which improves with rest and sleep.
››
››
››
››
››
new swellings
fever
sweats
unexplained weight loss
any changes to your general health.
While even the idea of doing something can be tiring if
you’ve got fatigue, try to keep as active as you can because
evidence shows that this could help to make your symptoms
less severe.
Although staying active may help, there’s no evidence
that any particular exercise programme can improve your
condition or how you respond to treatment.
Diet
Similarly, there’s no evidence that any special diet will
improve your condition or how you respond to treatment.
However, you’re likely to feel fitter and healthier if you follow
general advice on a good diet from your hospital or GP.
You’ll need to take extra care to avoid infections that you
might get from food. Your body won’t be able to destroy
germs and resist infection as easily, so be careful about food
‘use by’ dates and things like keeping cooked and raw meat
separate in the fridge.
You can read about the experiences of other people who are
going through – or have been through – the same thing on
our website > bloodwise.org.uk/patient-support
71
You might like to get in touch with an organisation which can
offer support for you and people close to you > see page 71
We have a booklet on dietary advice > Dietary advice for
patients with neutropenia
60 Everyday life and Hodgkin lymphoma
Everyday life and Hodgkin lymphoma 61
Smoking
Sex and pregnancy
To reduce some of the risk of long-term side effects caused
by treatment, it’s essential that you give up smoking.
Smoking is especially harmful to those who’ve previously
had chemotherapy and it’ll increase your risk of developing
a new, second cancer or lung problems in the future.
If you’re a woman receiving chemotherapy, it’s not
advisable to become pregnant. Take every precaution
possible to prevent this. Once in remission it’s wise
to talk to your doctor about planning to have a child.
Shingles
Shingles is the infection of a nerve and the skin around it.
It can affect you if you’ve had chickenpox, even if you had
it a long time ago, as it’s caused by the same virus which
can lie dormant in your body for years. You’re more likely
to get shingles if your immune system isn’t working well –
for example, if you have Hodgkin lymphoma.
Men should also use a condom during treatment
because the effects of chemotherapy on sperm are
not fully understood.
Both men and women should use condoms while
receiving chemotherapy (and for a week after
completion) because chemotherapy drugs can be
present in all bodily fluids.
Shingles has some quite obvious symptoms. If you think you
have it, let your GP or specialist know as quickly as possible
(within 24 hours of the rash appearing is best). If it’s treated
early, the symptoms won’t be as bad. Symptoms include:
››
››
››
››
a rash, normally on one side of your body
an itching, tingling or burning feeling
pain where the rash is
blisters filled with fluid which burst and form sores which
then crust over.
You can’t catch shingles from someone who has it, but you
can catch chickenpox from someone with an open shingles
sore, if you haven’t had chickenpox already.
For more information about the effects of cancer and its
treatment on relationships, sex and fertility, please see our
booklet: Chemotherapy: What do I need to know?
62 Everyday life and Hodgkin lymphoma
Everyday life and Hodgkin lymphoma 63
Alternative and complementary therapies
Practical support
There’s an important difference between alternative
therapies, which are offered in place of medical treatment,
and complementary therapies, which are used alongside
standard treatment.
Your work, education and domestic arrangements
Extensive research has shown no evidence that any
alternative therapy has any benefit in treating any form of
cancer. We don’t recommend that you use any alternative
therapy in place of proven medical care.
You might need to make a short-term arrangement with
your employer or college at the time when you’re diagnosed
so you can have time off when you need to be at the
hospital. If you have to stay in hospital for your treatment,
or you’re not well enough to go to work or college, you’ll
probably need to make a more formal agreement.
Always let your healthcare team know about any
complementary treatments you’re using or thinking of
using. They may advise you to avoid certain therapies
because of specific risks to do with your Hodgkin lymphoma
or the treatments you’re receiving. In other cases they may
say a therapy is OK as long as you take specific precautions.
Herbal medicines
Herbal preparations may be safe for a healthy person
but they could be dangerous when combined with your
chemotherapy.
Acupuncture
If you’re considering acupuncture, you should look for
a medically qualified acupuncturist who’s likely to follow
safe practices to avoid infection.
We make a booklet on complementary and alternative
therapies > Complementary and alternative therapies
(CAM)
If you work or are studying you might want to contact your
employer or college, or ask someone to do it for you. Most
will do everything they can to help.
You might need to bring in written proof of your diagnosis
from your healthcare team, which make clear the effect
Hodgkin lymphoma could have on your ability to work
or study.
You might want to consider taking time out from work
during your treatment. Advice you’re given on this might
vary but it’s entirely your decision, so consider discussing
it with your healthcare team and think about the demands
of the specific work you do. If you’re studying at college
or university, you might similarly want to think about
whether you want to continue with your course, or delay
it for a short time.
If you’re a parent or a carer, you might need support during
your treatment. You might have unplanned stays in hospital
because of infection, for example – it’s helpful to have plans
in place just in case.
64 Everyday life and Hodgkin lymphoma
Everyday life and Hodgkin lymphoma 65
I had good days and bad days during
treatment. I found it helpful to record
these ups and downs in a journal,
to spot patterns and remind myself
of the good days when I wasn’t feeling
so well.
Cancer and the law
Financial support
People with cancer, or any other serious disease, are covered
by a law called the Equality Act – for the purposes of the
Act, cancer is considered a disability. This means that
employers and places of study are required by law to make
reasonable arrangements for ‘people with disabilities’ and
can’t discriminate against you. An example of a reasonable
arrangement would be if you need time off to go to hospital
for treatment. Your employer or college has to allow this
and isn’t allowed to reduce your pay or make you take the
time as unpaid leave.
Your finances might be the last thing on your mind
if you’ve just been diagnosed with cancer, but there are
lots of places you can get help and advice.
Getting to hospital
If you normally pay for your prescriptions but are being
treated for cancer (including the effects of cancer or
the treatment) you can apply for a medical exemption
certificate for any drugs you need for these reasons.
Application forms are available from your GP surgery
or hospital clinic.
If you’re being treated as an outpatient (not staying in
overnight) you might need to be at the hospital a lot over
a long period of time. If you find this hard because of
transport or any other reason, you can ask your consultant
if you can have any of your treatment nearer to where you
live. It might not always be possible but sometimes it is –
it depends on the healthcare facilities close to your home
and the type of treatment you’re having.
Your hospital will normally have medical social workers
or welfare rights (benefits) advisors who can advise on
which benefits you might be able to receive. These might
be especially useful if you’re on a low income or are
unemployed. If you’re worried you can ask to speak with
an advisor as soon as possible after your diagnosis.
66 Research and new developments
Our researchers are
making discoveries
that will have a
positive impact on
people with Hodgkin
lymphoma.
Research and new developments 67
Research and new
developments
Each year, we invest a large part of the money
we raise in research which aims to stop people
dying from blood cancer; make patients’ lives
better; and stop people getting blood cancer
in the first place.
How blood cancers start
Small molecules in the tissues of our bodies help send
signals between cells and supporting structures. Lipid
molecules, for example, are involved in ensuring proper
cell survival, growth and movement within certain
tissues. When these signals misfire, however, cells can
grow out of control or move to the wrong places, meaning
cancer can form.
68 Research and new developments
Research and new developments 69
The research that’s going on is truly
amazing. It really gives me and my
family hope to know that so much time,
energy and wisdom is being devoted to
finding new and better treatments.
Understanding the progression
of Hodgkin lymphoma
Reducing the harsh side effects
of treatments
By analysing and manipulating patients’ normal white
blood cells and abnormal lymphoma cells in the laboratory,
our scientists in Birmingham are figuring out how overproduction of these lipid signals contributes to the early
stages of Hodgkin lymphoma development. This is to
discover whether new drugs designed to reduce the effects
of lipids are effective in stopping the lymphoma’s progress.
Although many Hodgkin lymphoma patients are diagnosed
in their 20s and 30s when they are otherwise generally
healthy, others are diagnosed in their 60s and 70s or have
underlying health problems at a younger age. These patients
sometimes don’t cope as well as the younger ones with the
usual chemotherapy treatment, so doctors use lower doses
or less effective drugs.
Another team in Birmingham is looking at how a different
part of the cell’s machinery can go wrong in Hodgkin
lymphoma. These scientists are investigating how and
why different genes are triggered when they shouldn’t
be, leading to the signals that drive the rapid growth
of abnormal cells. This allows them to identify the critical
ones needed for Hodgkin lymphoma to start, so that new
therapies can be designed to block these.
A new clinical trial is testing a promising new drug,
Brentuximab, which is designed to specifically seek out
the Hodgkin lymphoma cells, while sparing healthy tissue.
It has already shown promise for patients whose cancer
has repeatedly returned after standard chemotherapy.
Now the team want to see if this drug works for newly
diagnosed patients who are frailer or have other underlying
health problems. Because it is targeted at lymphoma cells,
the doctors expect these patients to cope better with the
treatment and experience fewer side effects. The trial
is led by doctors in Manchester but it’s being run through
our national Trials Acceleration Programme so includes
treatment centres across the UK.
70 Places you can get help and support
There are lots
of organisations
out there who
offer information
and support to
people affected
by Hodgkin
lymphoma.
Places you can get help and support 71
Places you can get help
and support
Many people affected by blood cancer find it useful
to call on the expert information, advice and support
offered by a variety of organisations, including
ourselves. Here are some we recommend.
Bloodwise
We offer patient information online and in free printed booklets,
and have an online community you may like to join.
› 020 7504 2200 › [email protected]
› bloodwise.org.uk
We can help with practical and emotional support and signpost you to other
available services.
› 0808 2080 888 › [email protected]
Macmillan Cancer Support
Offers practical, medical, financial and emotional support.
› 0808 808 0000 › macmillan.org.uk
CancerHelp UK
(Cancer Research UK’s patient support service)
Offers information about different conditions, current research
and practical support.
› 0808 800 4040 › cancerresearchuk.org/cancer-help
72 Places you can get help and support
Places you can get help and support 73
Lymphoma Association
Maggie’s Cancer Caring Centres
Provides emotional support and information to anyone with lymphatic cancer and
their families, carers and friends.
Centres throughout the UK, run by specialist staff
who provide information, benefits advice and
psychological support.
› 0808 808 5555 › lymphomas.org.uk
Leukaemia Care
Offers patient information, a 24 hour care line and support groups for people
affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes,
myeloproliferative neoplasms and aplastic anaemia.
› 0300 123 1801 › [email protected]
› maggiescentres.org
Marie Curie Cancer Care
Runs hospices throughout the UK and offers end of life support to patients in their
own homes, free of charge.
›0
1905 755 977 (general enquiries) or
08088 010 444 (CARE Line)
› [email protected] › leukaemiacare.org.uk
› 0800 716 146 › [email protected]
› mariecurie.org.uk
African Caribbean Leukaemia Trust (ACLT)
MedicAlert Foundation
Aims to increase the number of black, mixed race and ethnic minority people on
the UK Bone Marrow Register by raising awareness and running donor recruitment
drives.
Provides an identification system for individuals with hidden medical conditions
and allergies, in the form of emblems you wear on your body and necklaces or
wristbands.
› 020 8240 4480 › info@ aclt.org › aclt.org
› 0800 581420 › [email protected]
› medicalert.org.uk
Anthony Nolan
Runs the UK’s largest stem cell register, matching donors
to patients with leukaemia and other blood-related disorders who need a stem cell
transplant.
Tenovus (Wales)
› 0303 303 0303 › anthonynolan.org
› 0808 808 1010 › tenovus.com
Provides an information service on all aspects of cancer, and practical and
emotional support for cancer patients and their families living in Wales.
74 Places you can get help and support
Places you can get help and support 75
Financial advice
Travel insurance
Citizens Advice Bureau (CAB)
Macmillan Cancer Support
Offers advice on benefits and help
with filling out benefits forms.
Provides information about what to consider when looking
for travel insurance. It also has a list of insurance companies
recommended by people affected by cancer.
› 08444 111 444 (England) or 0844 477 2020 (Wales)
› adviceguide.org.uk
› 0808 808 0000 › macmillan.org.uk
Department for Work & Pensions (DWP)
Association of British Insurers (ABI)
Responsible for social security benefits. Provides information
and advice about public services including financial support,
rights and employment.
Provides information about getting travel insurance and
contact details for specialist travel companies.
› 020 7600 3333 › abi.org.uk
› gov.uk
British Insurance Broker’s Association (BIBA)
Offers advice on finding an appropriate BIBA-registered
insurance broker.
› 0870 950 1790 › [email protected] › biba.org.uk
76 Questions to ask
It can be a good
idea to write down
the questions you
want to ask before
each appointment.
Questions to ask 77
Questions to ask
It’s easy to forget the questions you wanted to
ask when you’re sitting with your healthcare team
and trying to take in lots of new information.
Some patients find it useful to write down the
questions they want to ask before they get there.
Here are some questions you might like to ask
at different times.
Tests
›› What tests will I have?
›› What will the tests show?
›› Where will I have the tests done?
›› Are there any risks associated with the tests?
›› Will any of the tests be painful?
›› Do I need to know anything about preparing
for the tests, for example not eating beforehand?
›› How long will it take to get the results?
›› Who will explain the results?
›› What is the exact type of lymphoma I have and what stage?
78 Questions to ask
Questions to ask 79
Treatment – general
Type of treatment
›› Will I need to have treatment? If so, when?
Chemotherapy
›› What does the treatment do?
›› What type of chemotherapy will I have?
›› Is there a choice of treatments?
›› Will I have to stay in hospital?
›› Is there a clinical trial that I could join?
›› I f not, how often will I need to go to hospital
as an outpatient?
›› W
hat’s likely to happen if I decide not to have the
treatment my healthcare team recommended?
›› If I don’t need to start treatment straight away,
how will I know when I need to start it?
›› What chemotherapy regimen will I be given? Will
I be given it by mouth, injection or drip (into a vein)?
›› Will my treatment be continuous or in blocks of treatment
(with a break in between)?
›› Who do I contact if I take a turn for the worse?
›› How long will my treatment last?
›› Who can I contact if I have any questions?
›› What side effects could I get from my treatment?
›› Can side effects be treated or prevented?
›› Will side effects affect me all the time or only while
I’m taking certain drugs?
›› What are the fertility risks with treatment and what
options are available to me to protect fertility?
›› What effect is the treatment likely to have on my daily life?
›› Will I be able to carry on working/studying?
›› Will I need to take special precautions, for example
against infection?
›› W
ill I need to change my meal times or work my drugs
around these?
80 Questions to ask
Questions to ask 81
Stem cell transplant
Follow-up
›› Is a transplant an option for me?
›› How will the cancer be monitored after my treatment?
If I am having a transplant:
›› How often will I need to have follow-up appointments?
› How long will I be in hospital for?
›› Is there anything I need to watch out for after my
treatment?
› Do I have to be in isolation?
›› Who can I contact if I have any questions or worries?
› How long will it be before I get back to normal?
Choosing the right treatment for you
Relapse
›› How will doctors know if the cancer has relapsed?
If you’re asked to choose between treatments, you might like
to ask your consultant these questions about each one:
›› What’s the best outcome I can hope for?
›› What are the options for more treatment?
›› What will the treatment involve? Will it be different from
my initial treatment?
›› How might the treatment affect my quality of life?
›› Will there be any side effects from more treatment?
›› Is my prognosis likely to change with more treatment?
82 Notes
Notes
Notes 83
84 Notes
Notes
Notes 85
86 About us
About us 87
About us
If you’re diagnosed with blood cancer you need to know that
there are people who can help. You want to know what it
means, what’s going to happen, what the treatment is like
and what your chances of living a normal life are. You need
to know someone is there for you.
There are 137 different types of blood cancer
We’re here to beat every single one
Blood cancers represent one in ten
of all new cancer diagnoses – this
means that each year 38,000 people
are diagnosed with blood cancers
and closely related conditions.
We play a vital role, working in
collaboration with health
professionals, the NHS, government,
pharmaceutical companies and other
charities to ensure that the needs of
blood cancer patients are addressed.
We take a leading role in research into
blood cancers; we ensure patients
have access to innovative clinical
trials where possible; we provide
information; and we’re a voice of
influence when it really counts.
This means no blood cancer patient
ever needs to feel alone. We have
more than 1,000 researchers,
clinicians and nurses making sure
that our research has a clear line of
sight to improving patients’ lives.
We ensure that when our expert
knowledge counts, we speak to the
people in the right places to influence
decisions.
We support a community of
thousands of individuals, families and
friends who have their own experience
of blood cancer and we create a safe
space for patients to share their
worries and also see that there can
be light at the end of the tunnel.
As one of the UK’s leading blood
cancer charities, we feel both the
responsibility and the opportunity
that we have to make patients’
lives better.
88 About us
About us 89
If you – or anyone close to you – ever feels able to make
any kind of donation, large or small, it will help us continue
our life-saving work > bloodwise.org.uk/give
Our patient information is available to download, order
or read online. You can also blog about your journey there
and read about other people’s blood cancer experiences >
bloodwise.org.uk/patient-support
Our patient services
We put the patient at the heart of
everything we do. We strive to help
everyone affected by a blood cancer
to live the best possible quality of
life, for life. Alongside our ongoing
commitment to support vital medical
research into the cause and cure of
blood cancers, we’re developing and
delivering quality support and services
for patients, their family, friends and
carers to help with the emotional and
practical impact of blood cancer.
How we raise money
Through our dedicated Patient
Support area on our website, people
can share their experiences of
blood cancer, connect with each
other and access our wide range
of patient information. We provide
support, information and advice over
the phone and online, and we’re
constantly developing new ways to
support our patients based on what
they tell us they want and need.
We don’t get any government funding: it’s the money
raised by our incredible supporters that lets us continue
our life-saving work.
It’s because of them that we can offer our patient
information free of charge to blood cancer patients,
so we’d like to say a big thank you to everyone who
gives so generously to us.
90 How you can get involved
How you can get involved 91
How you can
get involved
There’s lots of other ways you
can get involved that will help
us achieve our vision of beating
blood cancer.
Patient Support
Cycling
Triathlons
Patient support is your space to find
information, share knowledge and
experiences and connect with others
affected by blood cancer.
We like to think we’re the UK’s premier
cycling charity! From short family
rides through to our flagship London
and Birmingham Bikeathons and epic
London | Paris challenge, if you’ve got
a bike you can cycle with us to beat
blood cancer.
You won’t know what you can do until
you tri! Triathlons are ever popular with
sporty types who want to conquer
swimming, cycling and running, all
on the same day! We’re the proud title
sponsor of the wonderful Blenheim
Palace Triathlon but there are so many
more on offer.
bloodwise.org.uk/patient-support
Patient focus groups
Patients are at the heart of everything
we do. That’s why we consult patients
at every opportunity to get their views
about the services we provide. Check
our website for upcoming events.
bloodwise.org.uk/focus-groups
bloodwise.org.uk/cycling
bloodwise.org.uk/triathlon
Running
All around the country, right
throughout the year, our unstoppable
runners take to the streets to help us
beat blood cancer. Whether it’s at the
London Marathon, one of the Great
Run Series or a junior run, it’s a case
of every step counts.
Challenges
And then there are some who want to
climb mountains, trek through jungles
and canoe rivers for us! Get in touch
to tell us about your challenge and we’ll
support you all the way.
bloodwise.org.uk/challenges
bloodwise.org.uk/running
92 How you can get involved
How you can get involved 93
Shop with us
To give gifts that give back, visit our
online shop. We have a great range
of ethically sourced products and
100% of profits go towards beating
blood cancer.
bloodwise.org.uk/shop
Corporate fundraising
Local fundraising
Special events
We’re always looking for companies
who share our vision of a future
without blood cancer and we
recognise the benefits that partnering
with us can bring your business. We
know we can achieve more together
than we ever could alone and our
dedicated corporate team will work
with you to build an innovative,
mutually beneficial partnership.
We were formed back in 1960 by some
brave parents in Middlesbrough whose
daughter sadly died from leukaemia.
Fast forward all these years and our
local fundraisers are still right at the
heart of our organisation. Our friendly
regional teams can support you in
every aspect of your fundraising and
are always on hand for a chat.
Meet the likes of Billy Connolly and
Miranda Hart at our annual ‘Audience
with’ events or frock up for our
star-studded ‘Christmas with the
Stars’ concert at the Royal Albert
Hall. To see our very latest events
check out our website.
bloodwise.org.uk/localfundraising
bloodwise.org.uk/corporate
bloodwise.org.uk/special-events
Being part of our online
community
Short on time? Join our Facebook and
Twitter communities. Every quick
share could mean a new supporter, a
new donation or a new patient finding
out about our support services.
facebook.com/bloodwise.uk
twitter.com/bloodwise_uk
94 Your feedback and other booklets
Your feedback and other booklets 95
Your feedback
We’re always looking for ways to improve the information
we provide for people with blood cancer.
We welcome your feedback on this booklet and our other patient information.
Any improvements you suggest mean we can make better information for
other blood cancer patients and people close to them.
To fill in a short survey about our patient information online,
please go to > bloodwise.org.uk/bookletsurvey
Other booklets
Leukaemia
Lymphoma
Treatment
General
›› Acute lymphoblastic leukaemia (ALL)
in children up to 16 years
›› Hodgkin lymphoma (HL)
»» B
one marrow and stem cell
transplantation – for children
and adults
»» C
omplementary and alternative
medicine
›› Adult acute lymphoblastic leukaemia (ALL) in children and young adults
up to 16 years
›› A
cute myeloid leukaemia (AML)
in children and young adults up to
16 years
›› Acute promyelocytic leukaemia (APL)
›› Adult acute myeloid leukaemia (AML)
›› L ow-grade non-Hodgkin
lymphoma (NHL)
»» Chemotherapy
›› H
igh-grade non-Hodgkin
lymphoma (NHL)
»» Clinical trials
Myeloma
»» Donating stem cells
›› Myeloma
Related conditions
›› Myelodysplastic syndromes (MDS)
›› Myeloproliferative neoplasms (MPN)
»» N
ewly diagnosed with a blood
cancer
»» Supportive care
»» Donor lymphocyte infusion
»» Watch and wait
»» T
he seven steps – blood & bone
marrow transplantation
›› C
hildhood acute myeloid
leukaemia (AML)
»» Treatment decisions
›› Chronic lymphocytic leukaemia (CLL)
»» U
ndergoing high dose therapy and
autologous stem cell transplant
›› Chronic myeloid leukaemia (CML)
»» D
ietary advice for patients with
neutropenia
For children and young adults
»» Jack’s diary
»» Wiggly’s world
»» Y
oung adults with a blood cancer
– what do I need to know?
Glossary
Cancer can
sometimes feel
like it has its own
language. Here
are some of the
most common
words you might
hear:
Anaemia
Clinical nurse specialist (CNS)
Anaemia is where you don’t have
enough red blood cells in your blood.
This can mean that your muscles
don’t get as much energy as they
need. Anaemia most commonly leads
to tiredness or shortness of breath.
A qualified nurse who specialises in a
particular clinical area. Some deal with
all blood cancers while others may
specialise in leukaemia, myeloma,
lymphoma or another specific area.
Your nurse specialist can provide
information and expert advice about
your condition and treatment.
B lymphocyte
A type of lymphocyte normally
involved in producing antibodies to
fight infection.
Blood count, full blood count or FBC
A blood test that counts the different
types of cells in your blood.
Bone marrow
A spongy material inside long bones,
which produces your blood cells.
Chemotherapy
Treatment using anti-cancer drugs; it
can be a single drug or a combination
of drugs. Chemotherapy is used to
kill cells or stop them growing and
dividing. Although it’s aimed at the
cancer cells, the treatment also affects
normal cells which divide quickly, such
as those in the hair and gut.
Clinical trial
A planned medical research study
involving patients. They can be small
trials involving only a few patients or
large national trials. Clinical trials are
always aimed at improving treatments
and reducing any side effects they
cause. You’ll always be told if your
treatment is part of a trial.
Fatigue
Fatigue is a feeling of extreme
tiredness which doesn’t go away after
rest or sleep. It may be caused by the
Hodgkin lymphoma itself or might
be a side effect of treatment. It’s one
of the most common problems that
patients with cancer have.
Glossary continued ...
Lymphoma
Spleen
The word lymphoma covers several
different cancers which affect
blood cells called lymphocytes
and lymphocyte-producing cells.
Lymphocytes are one type of white
blood cell and are part of the immune
system, which defends the body
against infection. The abnormal
lymphocytes are found in lymph nodes
(glands) or other lymphoid tissues, so
patients usually develop lumps, which
may be just under the skin or deeper
inside the body.
An organ that filters the blood. It sits
under your ribs on the left hand side
of your body. The spleen has two main
jobs: to remove old red blood cells
and to help protect your body from
infections.
Lymph node or lymph gland
A bean-shaped organ that acts as a
filter to catch viruses, bacteria and
other foreign materials. It contains
white blood cells that fight infection.
Lymph vessels
Small tubes which make up a network
which runs around your body. They
carry a fluid called lymph.
Reed-Sternberg cell
An abnormal white blood cell that
usually confirms a diagnosis of
Hodgkin lymphoma.
Radiotherapy
The use of radiation in treatment.
Radiotherapy kills cancer cells in the
area of the body being treated, so
it can be an effective treatment for
diseases which affect a particular part
of the body, such as lymphoma.
For adults and children with blood cancer
39–40 Eagle Street, London WC1R 4TH
bloodwise.org.uk
020 7504 2200 (Reception); 0808 2080 888 (Helpline)