Lymphoma (NHL)
A guide for patients and families
Introduction5
Lymphoma10
What is Lymphoma? 18
Which doctor? 21
Treatment33
Glosary of terms 60
Making a donation 67
Acknowledgements
The Leukaemia Foundation gratefully
acknowledges the following groups
who have assisted in the development
and revision of the information
contained in this booklet: people
who have experienced lymphoma
as a patient or carer, Leukaemia
Foundation support services staff,
haematology nursing staff and
clinical haematologists representing
the various states and territories
of Australia.
4 The Leukaemia Foundation values feedback from
people affected by a lymphoma and the health
care professionals working with them. If you
would like to make suggestions, or tell us about
your experience of using this booklet, please
contact the Head of Support Services at
info@leukaemia.org.au
The Leukaemia Foundation gratefully
acknowledges Roche Products Australia for its
support in the production of this booklet through
an unrestricted educational grant.
September 2014
Introduction We have used some medical words and
terms, which you may not be familiar
with. These are highlighted in italics.
This booklet has been written Their meaning is explained in the
to help you, your family, friends booklet and/or in the glossary of terms
and loved ones understand at the back of the booklet.
more about lymphomas. In some parts of the booklet we have
Some of you may be feeling anxious or a provided additional information you may
little overwhelmed if you, or someone wish to read on selected topics.
you care for, has been diagnosed with This information is presented in the
lymphoma. This is normal. Perhaps you shaded boxes. Some of you may require
have already started treatment or you more information than is contained in this
are discussing different treatment booklet, we have included some internet 5
options with your doctor and your family, addresses that you might find useful. In
friends and loved ones. Whatever point
addition, many of you will receive written
you are at, we hope that the information
information from the doctors and nurses
contained in this booklet is useful in
answering some of your questions. It at your treating hospital.
may raise other questions, which you It is not the intention of this booklet to
should discuss with your doctor, or recommend any particular form of
specialist nurse.
treatment to you. You need to discuss
You may not feel like reading this your particular circumstances at all times
booklet from cover to cover. It might be with your treating doctor and team.
more useful to look at the list of
contents and read the parts that you Finally, we hope that you find this
think will be of most use at a particular booklet useful and we would appreciate
point in time. any feedback from you so that we can
continue to serve you and your families
better in the future.
The Leukaemia
Foundation
The Leukaemia Foundation The Foundation provides a range of free
support services to patients and their
is the peak body organisation carers, family and friends. This support
dedicated to the care and cure of may be offered over the telephone, face
patients and families living with to face at home, hospital or at the
leukaemia, lymphoma, myeloma Foundations accommodation centres,
depending on the geographical and
and related blood disorders. individual needs. Support may include
Since 1975, the Foundation has been providing information, patient education
committed to improving survival for seminars and programs that provide a
6 forum for peer support and consumer
patients and providing much needed
support. The Foundation does not representation, practical assistance,
receive direct ongoing government accommodation, transport and
funding, relying instead on the continued emotional support/counselling.
and generous support of individuals The Leukaemia Foundation also funds
and corporate supporters to develop leading research into better treatments
and expand its services. and cures for blood cancers and related
blood disorders. The Foundation has
established the ALLG National Leukaemia
and Lymphoma Tissue Bank, at the
Princess Alexandra Hospital, and the
Leukaemia Foundation Research Unit at
the Queensland Institute for Medical
Research. In addition, the Foundation also
funds research grants, scholarships and
fellowships for talented researchers and
health professionals.
Foundation staff with health
professional qualifications
provide patients and their
families with information and
support across Australia.
Platelets
Support blood White
clotting to stop Blood Cells
bleeding
Form part of the
immune system
Getting to
know your bone
marrow, stem
cells and blood
11
Men Women
15
Haemoglobin g/L 102-130 104-132 107-137 110-139 113-143
lymphoma?
A small percentage of lymphomas occur
in people whose immune system has
been weakened (immunosuppressed)
either by a viral infection such as human
Many people who are immunodeficiency virus (HIV) or as
diagnosed with lymphoma a result of drugs which affect the
ask the question why me? function of the immune system
(immunosuppressants). These drugs are
Naturally, they want to know what has commonly used when someone has a
happened to them or what they might heart, lung or other organ transplant.
have done to cause their disease.
We do know that it is not contagious. Infection
You cannot catch lymphoma by being
In some cases, particularly in people
in contact with someone who has it. 19
who are immunosuppressed, infections
In most cases people who are with viruses such as Epstein-Barr virus
diagnosed with lymphoma have no (EBV) or the human T-cell leukaemia/
family history of the disease. Like lymphoma virus (HTLV-1) may damage
many cancers, damage to special developing lymphocytes and put people
proteins that control the growth and at a higher risk of developing lymphoma.
division of cells may play a role in
the development of lymphoma. Chemicals
The following are certain factors which Some evidence suggests that farmers
may put some people at a higher risk and other people who are exposed to
of developing this disease. high concentrations of agricultural
chemicals such as pesticides and
fertilizers may have a higher risk of
developing lymphoma.
Lifestyle
Certain lifestyle factors appear to
increase the risk of NHL including
smoking (follicular lymphoma) and
obesity (diffuse large B-cell lymphoma).
What are the Other symptoms may include:
regular and frequent fevers
signs and excessive sweating, usually at night
Some people do not have any Some of these symptoms may also be
seen in other illnesses, including viral
symptoms when they are first infections. So, most people with these
diagnosed with lymphoma. symptoms do not have lymphoma.
In these cases the disease may However, it is important to see your
Follicular lymphoma
Follicular lymphoma is another common
type of lymphoma representing around
25% of all cases. Follicular lymphoma
gets its name from the way in which the
lymphocytes are arranged in clusters
or circular structures called follicles,
within the lymph node. This type of
lymphoma is usually slow-growing, over
months or years (indolent). It is usually
well controlled with treatment but like
most indolent lymphomas, is not
commonly curable.
Learn about * For more information on your particular type of
lymphoma please contact the Leukaemia
your disease and become Foundation for a fact sheet.
a partner with your medical
team rather than a patient.
Chronic lymphocytic leukaemia (CLL)/ Cutaneous T-cell lymphomas
small lymphocytic lymphoma (SLL) Cutaneous T-cell lymphomas (including
CLL is the most common type of Mycosis fungoides and Sezary
leukaemia in the Western world. syndrome) primarily affect the skin and
It usually affects older people. This the lymph nodes. In the early stages
disease can present as either leukaemia these lymphomas are generally indolent.
(CLL) or lymphoma (SLL). Initially it tends Redness of the skin and intense itching is
to be an indolent disease, requiring little common, and treatment may involve the
or no treatment for many years. use of creams, emollients, medications
to help you stop itching, and ultraviolet
Mantle cell lymphoma light. Chemotherapy and radiotherapy
Mantle cell lymphoma is often more may also be used in more advanced
aggressive than the other small B-cell stage disease.
lymphomas and is usually widespread
when it is first diagnosed. AIDS-related lymphoma
26
Lymphomas that occur in people with
Burkitts lymphoma human immunodeficiency virus (HIV)
Burkitts lymphoma is a rare, high grade tend to be aggressive and quite
type of lymphoma. It can also present advanced when they are first diagnosed.
as leukaemia. Burkitts lymphoma
produces a mass of lymphoma cells Central nervous system lymphoma
often in the abdomen and can spread In the more high grade types of
very quickly (over days). It is usually disease, lymphoma can spread from
treated with high doses of its original site to the brain and spinal
chemotherapy and is frequently cured. cord. In the case of primary central
nervous system lymphoma, the
disease is only found in these
areas. Treatment usually involves
radiotherapy and chemotherapy that
specifically targets the lymphoma in
this area.
Staging A, B or E?
The extent to which the lymphoma has Each stage is described further
spread in your body is called the stage according to the symptoms you have
of the disease. In stages 1 and 2, when you are first diagnosed. If you
lymphoma is limited to one or two areas do not have any symptoms, the letter
of the body (early stage). In stages 3 A will appear after the stage of
and 4, the disease is more widespread lymphoma, for example stage 2A.
in the body (advanced stage). If you have symptoms such as fevers,
night sweats and unexplained weight
Stages of lymphoma loss, the letter B will be put after the
Stage 1 stage of your lymphoma, for example
stage 2B.
lymphoma is limited to one group
of lymph nodes or one organ/area The letter E is used when lymphoma
outside the lymph nodes has spread to an area or organ outside 27
the lymph nodes, for example 4E.
Stage 2
lymphoma is limited to two groups
of lymph nodes or organ/area outside
the lymph nodes either above or below
the diaphragm (the large muscle that
separates the stomach and the chest)
Stage 3
lymphoma is found in lymph nodes
and/or an organ or other area both
above and below the diaphragm
Stage 4
lymphoma has spread outside the
lymph nodes to one or more organs,
for example; the bone marrow, lungs,
liver and skin
Staging tests Computerised axial tomography
(CT scan or CAT scan)
Once a diagnosis of lymphoma is made,
further tests need to be done to find CT scans provide computer analysed,
out the extent to which the disease has three dimensional (3D) images of cross
spread in your body and the effect it is sections of your body. This technology
having on important body organs. is able to detect tiny changes in tissue
This information will help your doctor density which might indicate the
to decide on the best treatment for you. presence of an infection or a tumour.
The CT scan does not hurt and it usually
Diagnostic and staging tests takes less than an hour to complete.
Biopsy While the scan is being done you have
to lie flat and still on a cushioned table
Blood tests that moves slowly through the CT
Imaging tests: machine. The machine itself looks
28 like a giant ring surrounding the table.
x-rays Sometimes a special dye (called a
CT (computerized tomography) contrast) is used to enhance the quality
scans of the chest, abdomen of the pictures taken. The contrast may
and pelvis be either swallowed or injected into
a vein in your hand or arm before the
MRI (magnetic resonance imaging) scan. The CT scanner displays the
gallium scan contrast as it moves through the body,
highlighting areas to be examined
PET (positron emission tomography) more closely.
Bone marrow examination CT scans of chest, abdomen and
pelvis are often used to assess the
Blood tests
spread of lymphoma in the body.
Blood tests provide important
information on how well your bone The CT scan may make some
marrow, liver and kidneys are people feel claustrophobic, speak
functioning. These tests provide a with your doctor if you feel you
baseline set of results regarding your may experience this. Your doctor
disease and general health. They can may offer you a relaxant.
then be compared with later results to
see how well you are responding to
your treatment.
Magnetic resonance imaging (MRI) Positron emission
MRI is another body scanning tomography (PET) scan
technique. It uses a very strong magnet PET scanning uses radioactive glucose
and radio waves to produce very clear which is injected into a vein in your hand
and detailed three dimensional (3D) or arm. Special gamma cameras are
images of the body. An MRI may be used to trace the glucose as it moves
done when the doctor needs a very through your body and detect areas
clear picture of the brain and spinal affected by lymphoma. Using this
cord to see if these areas are technology, slow growing lymphomas
affected by cancer. can be distinguished from fast growing
ones because of the rate at which the
MRI is painless and usually takes about
glucose is used by the different cells.
an hour to complete. The MRI scan may
make some people feel claustrophobic, PET scans give a very accurate picture
speak with your doctor if you feel you of the actual stage of your lymphoma
may experience this. Your doctor may and are also used during treatment to 29
offer you a relaxant. determine your response.
Standard therapy
Standard therapy refers to types
of treatment which are commonly
used. These treatments have been
tried and tested both in clinical trials
and through long-term clinical use,
and have been proven to be effective
and reasonably safe.
Clinical trials Informed consent
Clinical trials (also called research Giving an informed consent means
studies) test new treatments, or that the potential risks and potential
administer standard treatments in a benefits of a proposed procedure or
new way, and compare their outcomes treatment have been fully explained
to established treatments both to see if to you. You will then be asked if you
the new treatment regimen works better, are willing to comply with the
and to compare the side effects. Some requirements of the trial, including
clinical trials are randomised, so that treatments, tests and the collection
some patients will be receiving the of relevant information about you and
new experimental treatment and others your disease. If you feel happy that you
receive the current standard treatment. have adequate information to make
Clinical trials are important because such a decision, you may then give
they provide vital information about how your informed consent.
treatment can be improved. Clinical trials
35
sometimes give access to new therapies You should never feel compelled
that have been tested elsewhere but are to be in a clinical trial. The decision to
not yet available locally. participate must always be voluntary,
after you have received all the
If you are considering taking part necessary information. Even after you
in a clinical trial make sure that you have agreed to be in a clinical trial
understand the reasons for the trial and signed the consent form, you
and what it involves for you. You also can change your mind, whether or
need to understand the benefits and not trial treatment has already started.
risks of the trial before you can give
your consent. Talk to your doctor
who can guide you in making the
best decision for you.
Chemotherapy Chemotherapy is usually given in
several cycles (or courses) with a rest
Chemotherapy literally means period of a few weeks in between each
therapy with chemicals. cycle. This is to allow the body to
Many chemotherapy drugs are recover from the side-effects of
chemotherapy. A typical chemotherapy
also called cytotoxics (cell regime for lymphoma involves six to
toxic) because they kill cells, eight cycles of a combination of drugs,
especially ones that multiply given every 2 or 3 weeks over a period
quickly like cancer cells. of several months.
Improved results have been achieved
Chemotherapy usually involves a by combining chemotherapy with
combination of drugs (combination immunotherapy like rituximab.
chemotherapy). The names of different Immunotherapy is a more recent
combinations of drugs are commonly treatment option for lymphoma and it
36
derived from the first letters of each of the works differently from other forms of
drugs used. For example, R-CHOP cancer therapy. Rituximab is the first of
chemotherapy, is commonly used to treat these promising agents available.
lymphoma, and involves the use of
Rituximab, Cyclophosphamide, Rituximab is one of a new group of
Hydroxydaunomycin (Doxorubicin), treatments called Targeted Therapies
Oncovin (Vincristine) and Prednisone. because it is specifically engineered to
R-CVP chemotherapy involves the use of target lymphoma cells. Once antibodies
Rituximab, Cyclophosphamide, Vincristine bind to these cells, a patients own
and Prednisone. Each drug targets the immune system is then able to
cancer from a different angle, making the recognise these cancer cells as foreign
combination of chemotherapy drugs and kill them.
more effective than a single drug, in Rituximab specifically targets a protein
destroying the cancer. called CD20, found only on the surface
of mature B-lymphocytes. It does not
affect other cells, which may explain
why it is usually well tolerated and has
fewer side-effects than many other
cancer therapies.
How is chemotherapy given? There are several different kinds of
There are many ways of giving central lines used; some are intended for
chemotherapy. It is usually given through short term use while others remain in
a vein (intravenously or IV) in your arm or place for months and even years. These
hand, or in tablet form (orally). For lines require special care to prevent
lymphoma, chemotherapy may also be infection. If necessary, the nurses at your
given intrathecally (into the spinal fluid) to treatment centre will teach you how to
prevent or treat CNS (central nervous look after your line.
system brain and spinal cord) disease. In many cases you do not need to stay in
If you are having several cycles of the hospital for chemotherapy. It is often
chemotherapy your doctor may given in the outpatients/day procedure
recommend that you have a central department of the hospital and patients
venous catheter (also called a central go home the same day. Sometimes
line) inserted. A central venous catheter however, depending on the type of
is a special line inserted through the skin, chemotherapy being given and your 37
into a large vein in your arm, neck or general health, you may need to stay in
chest. Once in place, chemotherapy and hospital for a short while.
any other IV drugs can be given through
the line and blood tests can usually be
taken from the line, without the need for
frequent needle pricks.
Side-effects of chemotherapy Effects on the bone marrow
Chemotherapy kills cells that multiply Chemotherapy temporarily affects the
quickly, such as cancer cells. It also bone marrows ability to produce
causes damage to fast-growing normal adequate numbers of these cells. As a
cells, including hair cells, and cells in your result, your blood count (the number of
mouth, gut and bone marrow. The side- white cells, platelets and red cells
effects of chemotherapy occur as a circulating in your blood) will generally
result of damage to these normal cells. fall within a couple of weeks of
The type of side-effects and their treatment. The length of time it takes for
severity varies from person to person your bone marrow and blood counts to
depending on the type of recover mainly depends on the type of
chemotherapy used, and how an chemotherapy given.
individual responds to it. There is no White cells
doubt that side-effects can be very
38 unpleasant at times but it is helpful to The point at which your white cell count
remember that most of them are is at its lowest is called the nadir. This is
temporary and reversible. usually expected 10 to 14 days after
having your chemotherapy. During this
It is important that you report any side- time you will be at a higher risk of
effects you are experiencing to your developing an infection. A blood test
nurse and doctor because many of will be arranged for you during this time
them can be treated successfully, to check your blood count. At this stage
reducing any unnecessary discomfort you may also be neutropenic, which
for you. Education sessions to make you means that your neutrophil count is low.
more aware of the common effects of Neutrophils are important white blood
chemotherapy are offered at most cells that help us to fight infection.
treatment centres.
While your white blood cell count Platelets
is low you should take sensible
Your platelet count may also be
precautions to help prevent infection.
affected by the chemotherapy you
These include avoiding crowds, as
are receiving, and you may become
much as possible, avoiding close
thrombocytopenic (a reduction in
contact with people with infections
the number of platelets circulating in
which are contagious (for example
the blood). When your platelet count
colds, flu, chicken pox) and only eating
is very low you can bruise and bleed
food which has been properly prepared
more easily.
and cooked (low bacterial). Your doctor
and nurse will advise you on how to During this time it is sensible to avoid
reduce your risk of infection while your sharp objects in your mouth such as
white cell count is low. chop bones or potato chips, as
these can cut you gums. Using a soft
Sometimes your doctor may decide
tooth brush also helps to protect your
to use a drug like G-CSF to help the 39
gums. If necessary, your doctor will
recovery of your neutrophil count.
prescribe a platelet transfusion to
This drug works by stimulating the
reduce the risk of bleeding until the
bone marrow to increase the production
platelet count recovers.
of neutrophils. G-CSF is given as an
injection under the skin (subcutaneous). Red cells
This is quite a simple procedure and the
If your red blood cell count and
nurses can usually teach you or a family
haemoglobin levels drop you may
member (or friend) to do this at home.
become anaemic. When you are
If you do develop an infection you may anaemic you feel more tired and
experience a fever which may or may lethargic than usual. If your
not be accompanied by an episode haemoglobin level is very low,
of shivering. This shivering is known your doctor may prescribe a red cell
as a rigor and is characterised by (blood) transfusion.
uncontrollable shaking. Infections
while you are neutropenic may be very
serious and need to be treated with
antibiotics as soon as possible.
When should a temperature of 38C or higher*
(even if it returns to normal) and/or
I am really positive
about the future. I ensure
I am aware of what my body
is telling me. My late-effects care
plan makes me feel my ongoing
health is being monitored.
Making Sometimes it is hard to remember
everything the doctor has said. It may
Chemotherapy Cure
60
Single drugs or combinations of drugs This means that there is no evidence of
which may be used to kill and prevent disease and no sign of the disease
the growth and division of cancer cells. reappearing, even many years later.
Although aimed at cancer cells,
chemotherapy can also affect rapidly Diaphragm
dividing normal cells and this is
A layer of muscle under the ribs that
responsible for some common side-
separates the stomach from the chest.
effects including hair loss and a sore
mouth (mucositis). Nausea and vomiting
are also common, but nowadays largely Disease progression
preventable with modern anti-nausea Where the disease gets worse
medication. Most side-effects are despite treatment.
temporary and reversible.
Echocardiogram
A special ultrasound scan of the heart.
Electrocardiogram (ECG) High dose therapy
Electrical trace of the heart. The use of higher than normal doses of
chemotherapy to kill off resistant and/or
Growth factors residual (left over) cancer cells that have
survived standard-dose therapy.
A complex family of proteins produced
by the body to control the growth,
division and maturation of blood cells by High-grade lymphoma
the bone marrow. Some are now A fast-growing lymphoma.
available as drugs as a result of genetic
engineering and may be used to Hodgkin lymphoma
stimulate normal blood cell production
A type of lymphoma - cancer of the
following chemotherapy or bone
lymphatic system. All other types of
marrow or peripheral blood cell
lymphoma come under the heading of
transplantation. For example G-CSF
non-Hodgkins lymphoma. 61
(granulocyte colony stimulating factor).
Hypothyroidism
Haematologist
A reduction in the normal function of the
A doctor who specialises in the diagnosis
thyroid gland.
and treatment of diseases of the blood,
bone marrow and immune system.
Immune system
Haemopoiesis The bodys defense system against
infection and disease.
The formation of blood cells.
Immunocompromised
Hickman catheter
When the function of the immune
A type of central venous catheter (see
system is reduced.
above) used for patients undergoing
intensive treatment such as bone
marrow or peripheral blood cell Immune suppression
transplantation. It may have a single, The use of drugs to reduce the function
double or triple tube or lumen. of the immune system.
Leukaemia Lymphatic system
A cancer of the blood and bone marrow A vast network of vessels, similar to
characterised by the widespread, blood vessels, that branch out into all the
uncontrolled production of large tissues of the body. These vessels carry
numbers of abnormal and/or immature lymph, a colourless watery fluid that
blood cells. These cells take over the carries lymphocytes, specialised white
bone marrow often causing a fall in cells that protect us against disease and
blood counts. If they spill out into the infection. The lymphatic system is part of
bloodstream however, they can cause the bodys immune system.
very high abnormal white cell counts.
Lymphocytes
Localised disease Specialised white blood cells which are
Disease that is confined to a small involved in defending the body against
area or areas. disease and infection. There are two
62 types of lymphocytes: B-lymphocytes
Low-grade lymphoma and T-lymphocytes. They are also
called B-cells and T-cells.
A slow-growing lymphoma.
Lymphoma
Lymph nodes or glands
Cancer that arises in the lymphatic
Structures found throughout the body,
system.
for example in the neck, groin, armpit
and abdomen, which contain both
mature and immature lymphocytes. Magnetic resonance imaging (MRI)
There are millions of very small lymph A body scanning technique which uses
glands in all organs of the body. a very strong magnet and radio waves
to produce very clear and detailed three
dimensional (3D) images of internal
organs and structures.
Malignancy Non-Hodgkin lymphomas
A term applied to tumours characterised The name given to a group of
by uncontrolled growth and division of lymphomas (cancer of the lymphatic
cells (see cancer). system) that differs in important ways
from Hodgkins lymphoma and are
Mucositis classified according to the appearance
of the cancer cells under the microscope.
Inflammation of the lining of the mouth
Non-Hodgkins lymphoma can be slow
and throat, which also can extend to the
growing (low grade), or fast growing
lining of the whole of the gastro-
(intermediate or high grade) and may be
intestinal tract (stomach and intestines).
treated in a variety of ways. New name
is B-cell and T-cell Lymphomas.
Neutropenia
A reduction in the number of circulating Oncologist
neutrophils, an important type of white General term used for a specialist doctor 63
blood cell. Neutropenia is associated who treats cancer by different means, e.g.
with an increased risk of infection. medical, radiation, surgical oncologist.
Relapse
The return of the original disease.
Stable disease T-lymphocyte
When the disease is stable it is A type of white cell involved in
not getting any worse or any better controlling immune reactions.
with treatment.
Thymus
Stage A gland found behind the breast bone
The extent or spread of disease in involved in the maturation of
the body. T-lymphocytes (T-cells).
Staging Tumour
An assessment of the extent or spread An abnormal mass of cells which
of disease in the body. may be non-malignant (benign) or
malignant (cancerous).
Standard therapy 65
The most effective and safest therapy Ultrasound
currently being used. Pictures of the bodys internal organs
built up from the interpretation of
Stem cells reflected sound waves.
Stem cells are primitive blood cells that can
give rise to more than one cell type. There White cells
are many different types of stem cells in Specialised cells of the immune system
the body. Bone marrow (blood) stem cells that protect the body against infection.
have the ability to grow and produce all the There are five main types of white blood
different blood cells including red cells, cells: neutrophils, eosinophils,
white cells and platelets. basophils, monocytes and lymphocytes.
X-ray
A form of radiation used in diagnosis
and treatment.
Notes
66
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dedicated to the care and cure of patients and families living with leukaemia,
lymphoma, myeloma and related blood disorders. The Foundation receives
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Notes
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Notes
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This information booklet is produced
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a series on leukaemia, lymphoma, myeloma,
MDS, MPN and related blood disorders.
Copies of this booklet can be obtained
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September 2014
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