Lymphoma Australia

Burkitt Lymphoma (BL) Nurse hotline: 1800 953 081

[email protected]

Learning about your lymphoma can be like learning a new language. It takes time
and practice. Please keep this document handy so you can refer back to it as often
as you need to. It will become easier to understand the more you read it.

Introduction
LYMPHATIC SYSTEM
Burkitt lymphoma (BL) is a rare subtype
of non-Hodgkin lymphoma that can affect
children and adults. However, it is more
common in children aged between 5 Tonsils
and 14 years.
Thymus
Three out of every ten children with
lymphoma have this subtype. It is much Spleen
Peyer’s Lymph Node
rarer in adults with only one or two adults Patches
in every 100 with lymphoma having BL. Appendix
Bone Marrow
If you’ve been diagnosed with BL, you
have a type of fast-growing blood cancer.
Fast growing cancers are sometimes
called “aggressive”. But even though this
is an aggressive blood cancer, it usually
responds well to treatment. Many people
will even be cured with the right treatment.
Blood Red White Platelets
Burkitt lymphoma affects a type of white stem blood blood
cell cells cells
blood cells called B-cell lymphocytes
(B-cells). These cells are made in your
bone marrow (the spongy middle part
of your bones), before moving into your B-cells fight infection and diseases to keep
lymphatic system. They usually live in your you healthy. They remember infections
lymph nodes or your spleen, and can also you had in the past, so if you get the same
be found in your blood. infection again, your immune system can

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Burkitt Lymphoma (BL)

fight it more effectively. When you have an

infection, some of your B-cells move out
of your spleen and lymph nodes, through LUMP IN NECK
the lymphatic system and to the area
where your infection is. This means B-cells
can be found in any part of your body.

When these cells don’t grow or work

properly, you can be diagnosed with
lymphoma. You will have cancerous
B-cells called lymphoma cells. The
B-cells can travel all through your body,
so your BL can also be found in any part of
your body.

Signs & Symptoms

Because this is a fast-growing blood
cancer, you may notice a lump that comes Types of Burkitt Lymphoma (BL)
up quickly. These lumps are usually in your There are three main types of BL.
neck, armpit or groin. You may even get a They include:
lump in your chest or abdomen, but these
may be harder to feel. Other symptoms Endemic BL: This subtype is more
you may have are: common in people with an African
background, and is the most common
• feeling unusually tired (fatigued)
type of lymphoma in children from Africa.
• feeling out of breath It is more common in people who have
• bruising or bleeding more easily had an infection with malaria or the
than usual Epstein-Barr virus (EBV). Endemic BL often
• infections that don’t go away, or keep starts in your jaw or other bones of your
coming back (recurrent) face, but it can also start in your abdomen
• sweating at night more than usual (tummy area).

• losing your appetite (not wanting to eat) Sporadic BL: This subtype occurs all
• losing weight without trying over the world and is believed to be more
• itchy skin common in people who have had an
infection with the Epstein-Barr virus (EBV).
• B-symptoms (see picture on next page).
It usually starts in the lymph nodes in your
abdomen, so it can cause swelling and

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Burkitt Lymphoma (BL)

pain there. This subtype of BL can spread

to your brain and spinal cord, thyroid, B-SYMPTOMS
tonsils, and bones in your face.
B-symptoms are a group of three
distinct symptoms that some people
with lymphoma can get. They often
EBV is the virus that causes
occur together and may indicate that
glandular fever or mononucleosis
your lymphoma is more advanced.
(mono). It’s also sometimes called
Contact your doctor as soon as
the “kissing disease” because it can
possible if you get B-symptoms.
be passed on through your saliva.

Immunodeficiency-associated BL:
This subtype is more common for
people who have a virus called human
immunodeficiency virus (HIV), or who have
developed acquired immunodeficiency
Drenching night sweats
syndrome (AIDS). However, you may also
– where your clothes and
be at increased risk if you were born
bedding become saturated.
with immune deficiency, or if you take
medication that weakens your immune
system. These may include medications
taken after an organ transplant, or for
autoimmune diseases.

Diagnosis and Staging

Losing weight without trying,
If your doctor thinks you have BL you will and without other reason.
need a biopsy. A biopsy is a procedure to
remove part or all of an affected lymph
node, or a sample of your bone marrow.
The biopsy is checked by pathologists,
to see if there are changes that help the
doctor diagnose BL. A high fever of 37.5° or more that
keeps coming back or does not go
When you have a biopsy, you may have away even when you don't have an
a local or general anaesthetic. This will infection. You may even get chills.
depend on your age and what part of

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Burkitt Lymphoma (BL)

your body the biopsy is taken from. Your You can find more information on staging
doctor will be able to tell you which tests at our website. Just look down
subtype of BL you have when they get the left-hand side to find the test you
your biopsy results. Most children will want more information on: https://www.
have a general anaesthetic so they sleep lymphoma.org.au/lymphoma/tests-
through the procedure, avoiding distress diagnosis-and-staging/.
and ensuring they remain very still during
Stage I (1) and II (2) lymphoma are
the biopsy.
considered early-stage lymphomas,
If you have BL, your doctor will organise meaning that only one or two areas either
more tests to check if it has spread to other above OR below your diaphragm have
parts of your body. These tests are called lymphoma. Stage III (3) lymphoma is
“staging”. Your stage will depend on where considered an advanced stage and means
your lymphoma cells are, and how many that you have lymphoma on both sides of
parts of your body have the lymphoma. You your diaphragm.
might have Stage 1, 2, 3 or 4.
Stage IV (4) lymphoma is the most
advanced stage, and means you
have lymphoma on both sides of your
STAGING OF LYMPHOMA diaphragm, and in one of your organs
such as your liver, lungs, brain, bones or
bone marrow.

Cytogenetic tests
Cytogenetics are tests on your blood and
biopsies that look for changes in your
Stage 1 Stage 2 Stage 3 Stage 4 chromosomes or genes. We usually
have 23 pairs of chromosomes, and they
are numbered according to their size. If
you have BL, your chromosomes may
Staging tests look different.
Staging tests may include: On your chromosomes are many genes
• Positron Emission Tomography that tell the proteins and cells in your
(PET) scan body how to look or act. If there is a
change (mutation) in these chromosomes
• Computed Tomography (CT) scan
or genes, your proteins and cells will not
• Bone Marrow Biopsy work properly.
• Lumbar Puncture

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Burkitt Lymphoma (BL)

The mutation you will probably have if Rearrangements in Double hit

you have BL is called a translocation. This and Triple hit lymphoma
means, a gene called “MYC gene” which MYC BCL2 BCL6
is usually on your 8th chromosome, will
Double hit Yes Yes No
swap places with a gene on your 14th
chromosome. Your doctor will be able to Double hit Yes No Yes
talk to you about any changes you have Triple hit Yes Yes Yes
and explain these in more detail.

As well as the above tests, you may have

other tests to check how well your body’s
Please make sure you ask your doctor
organs are working, including your lungs,
to explain your individual changes.
liver and kidneys. This is done to make
sure it is safe for you to have treatment.
It will also help your doctor to make sure
Double or Triple hit mutations that your treatment does not cause too
Rarely you may have a mutation called much damage to them.
double hit or triple hit. If you do have this
mutation, you have a rearrangement of Before you start treatment
your genes. This means that two or three
of your genes have rearranged themselves Before you start treatment you will also
and are no longer in the right place. This need to have some baseline tests done.
rearrangement means your genes are These can include blood tests to check
now unable to give proper instructions to how well your liver and kidneys are
your B-cells on how, and when to grow. If working, scans on your heart, or lung
you have a double hit mutation, you have function tests. These are to make sure that
rearrangements in the MYC and, either you are well enough to have treatment
your BCL2 or your BCL6 gene (only one of without it causing you to become too
your BCL genes is rearranged in double unwell. Throughout your treatment you
hit, but you have two total rearrangements will have regular blood tests which will
with MYC and BCL). If you have a triple hit be compared to these baseline tests. You
mutation, you will have rearrangements in may also have further lung tests and heart
all three genes. scans to make sure that the treatment has
not caused any damage to your organs.

Fertility – some cancer treatments can

make it harder to fall pregnant, or to get
somebody pregnant. If you (or your child)

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Burkitt Lymphoma (BL)

are planning to have children later in life, injects a little bit of chemo into the fluid
talk to your doctor about how to preserve that surrounds your spine. This is called
your fertility. intrathecal (or IT) chemo. Some MABs can
be given as an injection into the fat in your
abdomen (tummy area).
Questions for your doctor before
you (or your child) start treatment Treatment with chemo and MABs is given
in cycles. This means you will have a
Starting treatment can feel overwhelming,
period of treatment, then a break so your
and even knowing what questions to ask
good healthy cells can recover, and then
can be difficult. To help get you started,
more treatment.
we have put together some questions you
may like to consider asking. Click here You may also need an operation to remove
to download our Questions to ask your your tumour. Depending on the size and
Doctor” factsheet or scan the QR code at location of your tumour, your doctor may
the end of this document. suggest you have the operation before
chemo, or after a few cycles of treatment.
Treatment options If your tumour is very big, or too close to
your spine, blood vessels or organs, they
Because BL is aggressive, you will start may want you to have some chemo first to
treatment soon after you are diagnosed. shrink it. This makes the operation easier
Depending on the results of your biopsies, and protects your vital organs.
you may have chemotherapy (chemo),
with or without another medication called
Treatment for children
a monoclonal antibody (MAB). MABs help
your own immune system fight the cancer Treatment for children with Burkitt
more effectively, and chemo directly kills lymphoma is often a little different from
the lymphoma cells. However, the MAB treatment for adults with Burkitt’s. Many
only works if you have a certain marker on childhood cancers are treated with
your lymphoma cells called CD20. So, if protocols based on clinical trials, so it is
you don’t have this marker, you will have best to speak to your child’s haematologist
chemo without the MAB. or treating team about what protocol
they will have. However, many of the
Chemo and MABs are usually given to you
medications will be similar to those used
as an infusion into your vein. If you have BL
to treat adults.
in your brain or spinal cord, or your doctor
thinks there’s a chance the lymphoma
will spread there, you may also have an
injection in your back where the doctor

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Burkitt Lymphoma (BL)

Treatment protocols fighting white blood cells grow back

more quickly.
The most common chemotherapy
protocols used for adults with BL (The DA in DA-EPOCH/R stands for “dose
include CODOX M alternating with IVAC, adjusted”, so the doctor can change the
or DA-EPOCH dose depending on your age, weight and
overall health).
CODOX-M includes different types of
chemo given over a 16-day period – DA-EPOCH-R is the same as DA-EPOCH
but you will not have treatment every but has an extra medication called
day. The chemotherapies you have rituximab. This is a MAB, and you may
are called doxorubicin, vincristine, receive this if your lymphoma cells have
cyclophosphamide, methotrexate and the CD20 marker on them.
cytarabine. You will also get an injection
Rituximab is not routinely given to children
(called filgrastim) in your tummy to help
and teenagers. However, there are now
your white blood cells grow back more
clinical trials to see if DA-EPOCH-R can
quickly to protect you from infection.
improve outcomes for children and
IVAC – after you have completed your teenagers, over DA-EPOCH alone. That
cycle of CODOX-M and your blood counts said, children and teenagers with BL
have recovered, you will have a different usually respond very well to treatment
protocol called IVAC. This protocol is given and have very good outcomes with high
over 7 days and includes chemotherapies cure rates. New treatments in clinical trials
called cytarabine, etoposide and therefore, are looking at how to minimise
ifosfamide. You will also have some side effects and improve quality of life
additional medications to protect your during and after treatment.
bladder, and to help with clearing the
You will likely go into remission after
chemo from your body.
treatment and have no signs of BL left.
DA-EPOCH is a protocol that has several However, in rare cases the BL may not
chemo medications given over a 6-day respond to treatment or may come
period then a break, before having the back after a period of remission. If this
same protocol again 21 days after your happens to you, your doctor will offer you
first treatment day. The chemotherapies a different type of treatment with different
are called doxorubicin, vincristine, medications or, may suggest you enroll
cyclophosphamide and etoposide. You will in a clinical trial to get access to different
also have a steroid tablet and an injection treatments not otherwise available.
in your tummy to help your infection
Find more information on treatment here.

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Burkitt Lymphoma (BL)

Clinical Trials see you, however the longer time you are
in remission the less often they will need
Clinical trials are important because they to see you.
help find new treatments. They can offer
you the opportunity to try something new If you have any concerns or worries
for free, that you would otherwise not have please contact your healthcare team or
access to, or otherwise have to pay for. contact our lymphoma care nurses on
Some clinical trials may look at: 1800 953 081. You can also email us on
[email protected].
• how to treat BL
• safe doses to treat BL with
less side-effects Summary
• managing side-effects • Burkitt lymphoma is an aggressive
• improving quality of life. lymphoma that can affect children
and adults.
It is always worth asking your doctor what
• It usually responds well to treatment
clinical trials you are eligible for, to see
and can often be cured, or you may go
if any are of interest to you. You can also
into remission
look online for clinical trials yourself at the
ClinTrial Refer website. If you would like • There are different subtypes of Burkitt
more information on clinical trials, please Lymphoma but treatment is often
see our fact sheet Understanding Clinical the same.
Trials here. • Some people with Burkitt lymphoma
may have genetic mutations called
either double or triple hit lymphoma.
Follow up
• Report any concerns or B-symptoms
Finishing treatment can be a time of or new or worsening symptms to your
mixed emotions. You may feel relieved medical team.
and excited, or you may feel worried and
scared. You may even alternate between Resources and Support
all of these emotions. This is very normal.
However, you will not be alone. You will While many people look forward to
continue to see your specialist team on finishing treatment, for some it can be a
a regular basis, and be checked for any time of uncertainty and worry. It is normal
signs and symptoms of your lymphoma to think about what happens next, to worry
relapsing, and your doctor will also want about if the cancer will come back, or to
to make sure you’re not having any side be frustrated if life does not go back to
effects from your treatment. Your doctor normal quickly enough.
will let you know how often they want to

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Burkitt Lymphoma (BL)

There are a lot of resources and support to Medicare Australia: Check with your
help you during this time. You can contact GP if you are eligible for a Mental Health
our lymphoma care nurses on 1800 953 Treatment Plan (MHTP). This plan is
081 or email [email protected]. funded by Medicare and can provide you
with up to 10 sessions with a registered
You can also find us on social media
psychologist. More information can be
where you can connect with others
found here.
who are living with, or who have
beaten lymphoma. WeCan is an Australian supportive care
website to help find the information,
Lymphoma Australia offers a wide range
resources and support services you may
of resources and support for people living
need following a diagnosis of cancer. You
with lymphoma or CLL, and their carers.
can visit their website at www.wecan.org.au.
How to access our resources:
• Visit our website www.lymphoma.org.au Canteen provides support for young people
for more information. aged 12-25 years who have cancer, or, who
have a parent with cancer. Find out more at
• Phone our Lymphoma Care Nurse
their website here www.canteen.org.au.
Hotline on 1800 953 081.
• Email our Lymphoma Care Nurses Health Translations: A collection of
[email protected] health related information collected by
• Booklet: Understanding Non-Hodgkin the Victorian Government with resources
Lymphoma (NHL) in different languages. You can visit their
website at www.healthtranslations.vic.gov.au.
• Downloadable information: Visit our
website, or give us a call if you would
like some more information on a Useful links
variety topics related to lymphoma
• Join our Facebook page
Lymphoma Down Under (make sure Burkitt lymphoma
you complete all the membership webpage
questions when you join).
Cancer Council offers a range of services,
including free counselling, to support
people affected by cancer, including
patients, families and friends. Services may Questions to ask your
be different depending on where you live. doctor
You can contact them at www.cancer.org.au
or by phone on 13 11 20.

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Burkitt Lymphoma (BL)

Disclaimer: Lymphoma Australia has

taken every precaution to make sure the
double/triple hit information in this document is accurate
lymphoma and up-to-date. However, this information
is intended for educational purposes
only and does not substitute for medical
advice. If you have any concerns about
your health or wellbeing, please contact
your treating team.
Stem cell transplants

CAR T-cell therapy

Treatments

eviQ treatment

Health Translations

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Burkitt Lymphoma (BL)

Notes

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Notes

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