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Version 1.2016
NCCN Non-HodGkin’s LymphomaS Series
Follicular
Lymphoma
Grade 1–2
Sponsored by
Available online at NCCN.org/patients
Ü
NCCN Guidelines for Patients®
Version 1.2016
Follicular Lymphoma
Grade 1‒2
Learning that you have cancer can be overwhelming. The goal of this book is
to help you get the best cancer treatment. It explains which cancer tests and
treatments are recommended by experts of follicular lymphoma.
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit
alliance of 26 of the world’s leading cancer centers. Experts from NCCN® have
written treatment guidelines for doctors who treat follicular lymphoma. These
treatment guidelines suggest what the best practice is for cancer care. The
information in this patient book is based on the guidelines written for doctors.
This book focuses on the treatment of follicular lymphoma. Key points of
the book are summarized in the related NCCN Quick Guide™. NCCN also
offers patient resources on diffuse large B-cell lymphoma, chronic lymphocytic
leukemia, chronic myelogenous leukemia, acute lymphoblastic leukemia,
and other cancer types. Visit NCCN.org/patients for the full library of patient
books, summaries, and other resources.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
1
Credits
NCCN aims to improve the care given to patients with cancer. NCCN staff work with experts to create helpful programs and resources for many
stakeholders. Stakeholders include health providers, patients, businesses, and others. One resource is the series of books for patients called
the NCCN Guidelines for Patients®. Each book presents the best practice for a type of cancer. The patient books are based on clinical practice
guidelines written for cancer doctors. These guidelines are called the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). Clinical
practice guidelines list the best health care options for groups of patients. Many doctors use them to help plan cancer treatment for their patients.
Panels of experts create the NCCN Guidelines®. Most of the experts are from NCCN Member Institutions. Panelists may include surgeons,
radiation oncologists, medical oncologists, and patient advocates. Recommendations in the NCCN Guidelines are based on clinical trials and the
experience of the panelists. The NCCN Guidelines are updated at least once a year. When funded, the patient books are updated to reflect the
most recent version of the NCCN Guidelines for doctors. For more information about the NCCN Guidelines, visit NCCN.org/clinical.asp.
NCCN staff involved in making the guidelines for patients and doctors include:
NCCN Guidelines for Patients
NCCN Guidelines
Dorothy A. Shead, MS
Director
Patient and Clinical Information Operations
Mary Dwyer, MS
Senior Manager, Guidelines
Laura J. Hanisch, PsyD
Medical Writer/ Patient Information Specialist
Lacey Marlow
Associate Medical Writer
NCCN Marketing
Susan Kidney
Graphic Design Specialist
Hema Sundar, PhD
Oncology Scientist/Senior Medical Writer
Rachael Clarke
Guidelines Data and Layout Coordinator
Sponsored and endorsed by
THE Leukemia & lymphoma society (LLS)
LLS is dedicated to developing better outcomes for blood cancer patients through research, education and patient services
and is happy to have this comprehensive resource available to patients with follicular lymphoma.
www.LLS.org/informationspecialists
Supported by NCCN Foundation®
The NCCN Foundation supports the mission of the National Comprehensive Cancer Network® (NCCN®)
to improve the care of patients with cancer. One of its aims is to raise funds to create a library of books for
patients. Learn more about the NCCN Foundation at NCCN.org/foundation.
© 2016 National Comprehensive Cancer Network, Inc. All rights reserved. The NCCN Guidelines for Patients® and illustrations
herein may not be reproduced in any form for any purpose without the express written permission of NCCN.
National Comprehensive Cancer Network (NCCN)
275 Commerce Drive • Suite 300
Fort Washington, PA 19034
215.690.0300
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
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Contents
Follicular Lymphoma
Grade 1‒2
How to use this book
57
Glossary:
5 Part 1
58
Dictionary
62Acronyms
Explains how and where this cancer starts.
65
NCCN Panel Members
13 Part 2
66
NCCN Member Institutions
Describes how doctors plan your
68
Index
4
Follicular lymphoma basics
Treatment planning
treatment.
23 Part 3
Overview of cancer
treatments
Describes the treatments used to cure or
control follicular lymphoma.
37 Part 4
Treatment guide
Presents treatment options based on the
cancer stage.
47 Part 5
Making treatment decisions
Offers tips for choosing the best treatment.
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How to use this book
Does the whole book
apply to me?
Who should read this book?
Follicular lymphoma is the second most
common type of non-Hodgkin’s lymphoma. Its
treatment is partly based on the cancer grade.
The cancer grades are 1–2, 3A, or 3B.
This book includes information for many
situations. Your treatment team can help. They
can point out what information applies to you.
They can also give you more information. As you
read through this book, you may find it helpful to
make a list of questions to ask your doctors.
The information in this book applies to grade
1–2. People with grade 1–2 cancer and those
who support them—caregivers, family, and
friends—may find this book helpful. It may help
you discuss and decide with doctors what care
is best.
Grade 3A and 3B are often treated like diffuse
large B-cell lymphoma. Visit NCCN.org/patients
for the patient book on diffuse large B-cell
lymphoma.
The recommendations in this book are based on
science and the experience of NCCN experts.
However, these recommendations may not be
right for you. Your doctors may suggest other
tests and treatments based on your health
and other factors. If other recommendations
are given, feel free to ask your treatment team
questions.
Where should I start
reading?
Making sense of medical
terms
Starting with Part 1 may be helpful. It explains
what follicular lymphoma is. It also explains
cancer grades. Knowing more about this cancer
may help you better understand its treatment.
In this book, many medical words are included.
These are words that you will likely hear from
your treatment team. Most of these words may
be new to you, and it may be a lot to learn.
Parts 2 through 5 address issues related
to treatment. Part 2 lists which health tests
and other steps of care are needed before
treatment. Part 3 briefly describes all the types
of treatments so you can understand your
options that are listed in Part 4. Tips for making
treatment decisions are presented in Part 5.
Don’t be discouraged as you read. Keep reading
and review the information. Don’t be shy to ask
your treatment team to explain a word or phrase
that you do not understand.
Words that you may not know are defined in the
text or in the Dictionary. Words in the Dictionary
are underlined when first used on a page.
Acronyms are also defined when first used
and in the Glossary. Acronyms are short words
formed from the first letters of several words.
One example is DNA for deoxyribonucleic acid.
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1
Follicular lymphoma basics
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Follicular Lymphoma, Version 1.2016
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1 Follicular
lymphoma basics
6 What is the lymphatic system?
8 What is follicular lymphoma?
10Do I have follicular lymphoma?
12Review
What is the lymphatic system?
You’ve learned that you have or
may have follicular lymphoma.
It’s common to feel shocked and
confused. Part 1 reviews some basics
about this lymphoma that may help
you learn about it and start to cope.
These basics may also help you start
planning for treatment.
The lymphatic system is one of 13 systems of the
human body. It transports fluids to the bloodstream
and fights germs. As such, it supports your bloodflowing (cardiovascular) and disease-fighting
(immune) systems.
Cells are the building blocks of tissue in the body. The
spaces between cells are filled with fluid. This fluid
is called interstitial or tissue fluid. Most tissue fluid
comes from parts of blood plasma that have passed
out of blood vessels. Cells also release waste and
other products into tissue fluid.
When tissue fluid increases, it drains into vessels.
Almost all of tissue fluid drains back into blood
vessels. The rest of it drains into lymph vessels.
Once inside of lymph vessels, tissue fluid is called
lymph. Lymph travels in lymph vessels back to the
bloodstream.
The lymphatic system also collects fat and some
vitamins from your gut. After you eat, your stomach
turns food into a liquid. Then, the liquid drains into
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Follicular lymphoma basics
What is the lymphatic system?
your small intestine. Within your small intestine, fat
and some vitamins are absorbed into lymph vessels.
This fatty lymph, called chyle, travels in lymph vessels
to the bloodstream.
Lymphocytes help fight germs. The three types of
lymphocytes are NK (natural killer) cells, B-cells, and
T-cells. Lymphocytes are made in bone marrow then
are moved by blood to the lymphatic system.
As lymph travels, it will pass through and be filtered
by lymph nodes. Lymph nodes are organized masses
of lymphoid tissue. There are hundreds of lymph
nodes throughout your body. See Figure 1.1. High
numbers of lymph nodes exist in the middle of your
chest, neck, armpit, groin, pelvis, and along your gut.
Other parts of your body that have many lymphocytes
are included in the lymphatic system. In children,
the thymus stores T-cells until they are able to fight
germs. Germs in blood are filtered and destroyed
by lymphocytes within your spleen. Your tonsils kill
germs in lymph that enter through your mouth and
nose. There are also small clumps of lymphatic tissue
in your gut, thyroid, breasts, lungs, eyes, and skin.
Lymph nodes and other lymphoid tissue are
defined by high numbers of white blood cells
called lymphocytes. Lymph also has lymphocytes.
Figure 1.1
Lymphatic system
The lymphatic system kills germs in the body and collects and transports lymph to the bloodstream.
Illustration Copyright © 2016 Nucleus Medical Media, All rights reserved. www.nucleusinc.com
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Follicular lymphoma basics
What is follicular lymphoma?
What is follicular lymphoma?
Follicular lymphoma is a cancer of B-cells that are
within the “factories” of your lymphatic organs. These
factories are called germinal centers. Germinal
centers are short-lived structures that are formed
in response to an outside antigen. They have
a dark and light zone. In the dark zone, B-cells
increase in number. At this stage, B-cells are called
centroblasts. After multiplying, B-cells enter the light
zone and undergo a number of normal changes to
make antibodies. B-cells in the light zone are called
centrocytes.
Cancer is a disease of cells. Lymphomas are cancers
that start in lymphocytes within the lymphatic system.
There are two main types of lymphomas. Hodgkin
lymphoma is defined by the presence of ReedSternberg or related cells. Non-Hodgkin’s lymphoma
includes all the other types of lymphoma.
Most non-Hodgkin’s lymphomas—85 out of every
100—are B-cell lymphomas. About 10 out of 100 are
T-cell lymphomas. A few have unknown cell origin.
It is now known that most Hodgkin lymphomas are
also from B-cells. Thus, Hodgkin and non-Hodgkin’s
lymphomas are more related than first thought.
Inside of cells are coded instructions for building
new cells and controlling how cells behave. These
instructions are called genes. Genes are a part
of DNA (deoxyribonucleic acid), which is grouped
together into bundles called chromosomes. See
Figure 1.2. Abnormal changes (mutations) in genes
cause normal B-cells to become cancer cells.
Researchers are still trying to learn what causes
genes to mutate and cause cancer.
Follicular lymphoma is a type of non-Hodgkin’s
lymphoma. It is a cancer of B-cells. There are many
types of B-cells and, thus, many B-cell cancers.
B-cells differ from one another based on the cell’s
stage of development. As B-cells “mature” they
change in their ability to make antibodies.
Cancer cells don’t behave like normal cells. First, the
mutations cause cancer cells to grow more quickly
and live longer than normal cells. Normal cells grow
and then divide to form new cells when needed.
They also die when old or damaged as shown in
Figure 1.3. In contrast, cancer cells make new cells
that aren’t needed and don’t die quickly when old or
damaged. Over time, the lymphoma cells may build
up in tissues and may travel in blood or lymph to
other sites. Without treatment, the cancer may cause
organs not to work.
Antibodies are Y-shaped proteins that are made in
response to the presence of antigens. Some antigens
enter your body from outside. Such antigens include
viruses, bacteria, chemicals, and pollen. Some
antigens are formed inside your body like those found
on tissue cells. Antibodies attach to antigens, which
triggers a response from your immune system.
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Follicular lymphoma basics
What is follicular lymphoma?
Figure 1.2
Genetic material in cells
Most human cells contain the “blueprint of life”—the plan by which our bodies are made
and work. The plan is found inside of chromosomes, which are long strands of DNA that are
tightly wrapped around proteins. Genes are small pieces of DNA that contain instructions for
building new cells and controlling how cells behave. Humans have about 24,000 genes.
Illustration Copyright © 2016 Nucleus Medical Media, All rights reserved. www.nucleusinc.com
Figure 1.3
Normal cell growth vs. cancer cell growth
Normal cells increase in number when they are needed and die when old or damaged.
In contrast, cancer cells quickly make new cells and live longer because of abnormal
changes in genes.
Illustration Copyright © 2016 Nucleus Medical Media, All rights reserved. www.nucleusinc.com
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1
Follicular lymphoma basicsDo I have follicular lymphoma?
Do I have follicular lymphoma?
The name, follicular lymphoma, is based on where
the cancer grows and how it looks. Germinal
centers form in the follicles of lymphatic organs.
The hematopathologist will look for related cells—
centroblasts and centrocytes. More importantly, he
or she will look for a follicular growth pattern. This
pattern has the shape of a circle.
Symptoms of follicular lymphoma may not appear for
years because the cancer has been growing slowly.
One of the first symptoms may be a swelling of one or
more lymph nodes. The nodes may be in your neck,
armpit, or groin area. The size of your lymph nodes
may increase then decrease again and again. Instead
of swollen nodes, a large tumor may grow near your
belly and block the flow of food, urine, or blood. When
your doctor suspects cancer, testing is needed. The
tests that are needed to confirm (diagnose) follicular
lymphoma are described next.
The hematopathologist will also assign a cancer grade.
Grading of follicular lymphoma is based on the number
of centroblasts seen when the microscope is at its
highest power. Grade 1-2 is defined by 15 or fewer
centroblasts per high-power field. Grade 3 is defined
by more than 15 centroblasts per high-power field.
Biopsy
Tissue or fluid must be removed from your body and
be tested to diagnose cancer. A biopsy removes
samples of fluid or tissue. To diagnose follicular
lymphoma, an incisional or excisional biopsy of the
tumor is advised. An incisional biopsy removes only a
part of the tumor through a cut made into your body.
An excisional biopsy removes the whole tumor and
not much else. The methods used to do either biopsy
depend on where the tumor is in your body.
Grade 3 is further divided into 3A and 3B. Grade 3A
is defined by a mix of centrocytes and centroblasts.
Grade 3B is defined by sheets of large centroblasts
and no centrocytes.
FNA (fine-needle aspiration) and a core needle
biopsy remove very small samples with a needle.
Neither should be used alone to diagnosis follicular
lymphoma. You may have cancer even if these
biopsies find no cancer.
Protein tests
The results of these tests and those described next
will be recorded in a pathology report. It’s a good idea
to get a copy of your pathology report. It’s used to
plan treatment.
For diagnosis, the hematopathologist needs to study
the proteins in the cells’ surface (membrane). This
is called immunophenotyping. Follicular cancer has
a common pattern or “signature” of proteins. See
Figure 1.4. An IHC (immunohistochemistry) panel
is a test for such proteins. It involves applying a
chemical marker to cells and then looking at them
with a microscope.
Hematopathology review
The biopsy samples will be sent to a special type
of pathologist. A pathologist is a doctor who’s an
expert in testing cells to find disease. For follicular
lymphoma, the pathologist should be a specialist
in hematopathology. Hematopathologists spend
all of their time looking at blood and bone marrow
and lymph nodes, so they become very good with
diagnosing blood cancers. The hemotopathologist will
first examine the samples using a microscope.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
The IHC panel should test for CD3, CD5, CD10,
CD20, BCL2, BCL6, cyclin D1, and CD21 or CD23.
Follicular lymphoma cells typically express CD10,
CD20, BCL2, and BCL6 but not CD5, CD43, or cyclin
D1. Rare cases may be missing CD10 or BCL2.
CD23 is found on some but not all follicular lymphoma
cells.
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1
Follicular lymphoma basicsDo I have follicular lymphoma?
Sometimes it is helpful to include Ki-67 and IRF4/
MUM1 in the IHC panel. Some research has linked
high numbers of Ki-67 with faster-growing cancers.
IRF4/MUM1 is often expressed in grade 3 follicular
lymphomas.
Flow cytometry is a newer method that can also be
used to assess the surface proteins on lymphoma
cells. This method involves first adding a marker—a
light-sensitive dye—to cells. Then, your blood will
be passed through a flow cytometry machine. The
machine measures surface proteins on thousands of
cells.
Flow cytometry may be done in addition to an IHC
panel. If done, it should test for CD5, CD10, CD19,
CD20, CD23, and kappa and lambda light chain
proteins. Light chain proteins are part of antibodies.
Genetic tests
Besides a protein signature, follicular lymphoma
also has common abnormal changes in genes. A
translocation is a switching of parts between two
chromosomes. A gene rearrangement is the fusion of
one gene with another gene to create a new gene.
A translocation of chromosomes 14 and 18 that
results in a BCL2 gene rearrangement is very
common to follicular lymphoma. However, these
abnormal changes are often not found in the pediatric
subtype of follicular lymphoma. A BCL6 gene
rearrangement is also absent in the pediatric subtype.
Testing may be useful to diagnosis this subtype.
Molecular genetic analysis should be the test
used to detect antigen receptor and BCL2 gene
rearrangements. A karyotype and FISH (fluorescence
in situ hybridization) are tests that detect
translocations and BCL6 rearrangements.
Figure 1.4 CD20 protein
Follicular lymphoma cells have a common pattern of proteins in their membrane. This
pattern includes the presence of CD10, CD20, BCL2, and BCL6 and no CD5, CD43, and
cyclin D1. CD23 is found on some but not all cells. Immunophenotyping is the process of
identifying the proteins in cells’ membranes.
Derivative work of Rituximab Binding to CD20 on a B Cell Surface by NIAID available at commons.wikimedia.org/wiki/
File:Rituxima_Binding_to_CD20_on_a_B_Cell_Surface_(6830897205).jpg under a Creative Commons Attribution 2.0
Generic license.
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1
Follicular lymphoma basicsReview
Review
• The lymphatic system consists of lymph and
a network of vessels and organs. It helps kill
germs in the body and transports fluids to the
bloodstream.
• Follicular lymphoma is often a slow-growing
cancer. Over time, it will spread from one
group of lymph nodes to the next and to sites
outside the lymphatic system.
• Lymphomas are cancers that start in
lymphocytes within the lymphatic system.
Follicular lymphoma starts in B-cells that are
from germinal centers found within lymphatic
organs.
• Incisional or excisional biopsy is needed to
diagnose follicular lymphoma.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
• The biopsy tissue should be tested by a
hematopathologist. The hematopathologist will
perform a number of tests that assess for cell
type, surface proteins, and maybe genetics.
12
2
Treatment planning
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2 Treatment planning
14Medical history
15Physical exam
16
Blood tests
18Imaging tests
19
Bone and marrow test
20
Heart tests
20
Fertility and pregnancy
22Review
Medical history
Doctors plan treatment with many
sources of information. One of these
sources is tests of your health and the
cancer. Part 2 describes who should
receive which tests before treatment.
Some of these tests are repeated
during and after treatment. Besides
tests, Part 2 describes other types
of care that are important to receive
before cancer treatment.
Your medical history includes any health events and
medicines you’ve taken in your life. You will be asked
about illnesses, injuries, health conditions, and more.
Some health problems run in families. Thus, your
doctor may also ask about the health of your blood
relatives.
Some signs and symptoms of follicular lymphoma are
enlarged lymph nodes, tiredness, a feeling of fullness
in your belly, and getting sick. This cancer may also
cause “B symptoms.” It’s important that your doctor
knows if you have them. These symptoms include
fevers, chills, night sweats, and weight loss without
dieting.
A medical history is one of the tests needed for
treatment planning. See Chart 2.1 for a complete list
of care that is recommended prior to treatment. Some
types of care are for anyone with follicular lymphoma
while others may be useful for some people.
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Treatment planningPhysical exam
Physical exam
Doctors should perform a physical exam along with
taking a medical history. A physical exam is a study of
your body for signs of disease. During this exam, your
doctor will listen to your lungs, heart, and gut. Parts
of your body will likely be felt to see if organs are of
normal size, are soft or hard, or cause pain when
touched.
For follicular lymphoma, there are certain parts of your
body that should be checked. Follicular lymphoma
is often found in lymph nodes, so areas with lots of
lymph nodes should be examined. High numbers of
lymph nodes exist in the middle of your chest, neck,
throat, armpit, groin, pelvis, and along your gut. The
size of your spleen and liver should also be assessed.
Results of your medical history and physical exam
will be used to rate your performance status.
Performance status is your ability to do daily
activities. It is used by doctors to assess if you can
undergo certain treatments.
Chart 2.1 Care before treatment
Must haves
Sometimes useful
• Medical history
• Uric acid
• Physical exam
• SPEP, quantitative immunoglobulins, or both
• Complete blood count with differential
• Hepatitis C testing
• Lactate dehydrogenase
• CT scan of your neck
• Beta-2 microglobulin
• Echocardiogram or MUGA
• Comprehensive metabolic panel
• Fertility support
• Hepatitis B testing
• CT, PET/CT, or both scans
• Bone marrow biopsy + aspiration
• Pregnancy test if you can have babies
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Treatment planning
Blood tests
Blood tests
show if the level of chemicals are too low or high.
Abnormal levels can be caused by cancer or other
health problems.
Blood tests are used to learn if cancer treatment
might be needed now. They are also used to find
unknown diseases including those related to follicular
lymphoma. It’s important to treat all illnesses. Blood
tests for follicular lymphoma are:
Hepatitis testing Hepatitis B and C can be important factors in the
treatment of follicular lymphoma. Hepatitis B can
become active again due to the cancer or some of
its treatments. Hepatitis C may limit how well cancer
treatment works. Thus, tell your treatment team if
you’ve ever been infected with hepatitis. For other
people, ask your treatment team if you should get
tested.
Complete blood count with differential
A CBC (complete blood count) measures the number
of blood cells in a blood sample. It includes numbers
of white blood cells, red blood cells, and platelets.
Your blood counts may be low or high because of
cancer or another health problem. It is an essential
test that gives a picture of your overall health.
Uric acid
Some people with follicular lymphoma are at risk for
tumor lysis syndrome (TLS, for short). This syndrome
can be life threatening. It occurs when the waste
released by dead cells is not quickly cleared out of
your body. This results in kidney damage and severe
blood electrolyte disturbances.
There are several types of white blood cells. A
differential counts the number of each type of cell.
It also checks if the counts are in balance with each
other. Your doctor can determine the cause of an
abnormal white blood count from this test.
Lactate dehydrogenase
Tumor lysis syndrome can occur among people
with follicular lymphoma who are undergoing strong
cancer treatments. The cancer treatment kills many
cancer cells and results in too much tumor cell waste
within in a short period of time.
Lactate dehydrogenase is a protein that is in most
cells. It gets into your blood when a cell is damaged.
Thus, a high level of lactate dehydrogenase is a sign
of cell damage. High levels can be caused by cancer
or other health problems. If related to cancer, high
levels may be a sign that treatment may be needed
now or soon.
Your doctors may want to know your uric acid level
before starting treatment. You may be given certain
medications that can help prevent tumor lysis
syndrome. Also, drinking plenty of water throughout
chemotherapy can help. Ask your treatment team for
more information.
Beta-2 microglobulin
Beta-2 microglobulin is a small protein made by
many types of cells, including lymphoma cells. It is
measured with a blood chemistry test. If related to
cancer, high levels may be a sign that treatment may
be needed now or soon.
Antibody testing
Antibodies (also called immunoglobulins) are proteins
that are made by B-cells. B-cells release antibodies
into the blood to protect you from viruses and
bacteria. There are three major types of antibodies in
blood—IgG, IgA, and IgM.
Comprehensive metabolic panel
Chemicals in your blood come from your liver, bone,
and other organs. A comprehensive metabolic panel
often includes tests for up to 14 chemicals. The tests
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Treatment planning
Blood tests
The amount of each type of antibody is measured
from a blood sample. This blood test is called
quantitative immunoglobulins. Testing will show if the
level of any type of antibody is abnormal—too high or
too low.
SPEP (serum protein electrophoresis) is a
test that measures the amount of monoclonal
immunoglobulins. People with follicular lymphoma
may sometimes have very high amounts of tumorspecific immunoglobulins into their bloodstream. This
may cause a “monoclonal” spike on the SPEP test.
The antibodies in a monoclonal spike are all copies
(clones) of one type of antibody. If you do not have all
five types of antibodies, your body will not be able to
fight illnesses well.
NCCN Guidelines for Patients®
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Some people with follicular lymphoma have low
levels of antibodies before cancer treatment. They
may be sick often. The low levels may even further
drop during cancer treatment. Testing of antibodies
can help your doctors know if you need treatment to
prevent or cure an infection. Testing will also show
whether you will need immunoglobulin replacement
therapy.
17
2
Treatment planningImaging tests
Imaging tests
PET/CT
Another imaging test combines CT with PET (positron
emission tomography). For PET, a sugar radiotracer
will be injected into your body. The radiotracer is
detected with a special camera. Cancer cells appear
brighter than normal cells because they use sugar
more quickly. PET/CT may be done with one or two
machines depending on the cancer center.
Imaging tests make pictures (images) of the insides
of your body. They can show which sites have cancer.
This information helps your doctors stage the cancer.
More information on cancer staging is in Part 4.
Your treatment team will tell you how to prepare for
the test. You may need to stop taking some medicines
and stop eating and drinking for a few hours before the
scan. Tell your doctors if you get nervous when in small
spaces. You may be given a sedative to help you relax.
Figure 2.1 Computed tomography machine
A CT machine is large and has a tunnel in the
middle. During the test, you will lie on a table that
moves slowly through the tunnel.
Imaging machines are large. You will likely be lying
down during testing. At least part of your body will
be in the machine. Figure 2.1 shows a CT machine,
which is described next.
After the test, you will likely be able to resume your
activities right away. If you took a sedative, you will
have a waiting period. You may not learn of the
results for a few days since a radiologist needs to see
the pictures. A radiologist is a doctor who’s an expert
in reading the images.
Diagnostic CT
A CT (computed tomography) of your chest, belly
area, and between your hip bones is needed. A CT
of your neck is sometimes useful to learn if cancer is
present. CT takes many pictures of a body part from
different angles using x-rays. A computer combines
the x-rays to make detailed pictures.
A contrast dye is used for diagnostic CT. It makes the
pictures clearer. The dye will be injected into a vein
in your hand or arm. You will also be given a liquid
contrast to drink.
The contrast may cause you to feel flushed or get
hives. Rarely, serious allergic reactions occur. Tell
your doctor and the technicians if you have had
problems with contrast in the past.
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Treatment planningImaging tests | Bone and marrow test
PET/CT may be given in addition to or instead of
CT. It can show the presence of cancer when other
tests do not. PET/CT is an essential test if you will
be treated with radiation for stage I or II cancer. Your
doctor will want to be sure that the cancer is not
widespread. PET/CT is also received before and after
treatment with cancer drugs to assess if treatment
is working. Read Part 4 for staging information and
when radiation therapy is an option.
Figure 2.2 Bone marrow biopsy
Bone and marrow test
Doctors use a bone marrow biopsy to remove a
sample of bone and marrow for testing.
A bone marrow biopsy removes a sample of bone and
soft bone marrow. A bone marrow aspiration removes
a small amount of liquid bone marrow. These tests
aren’t needed to diagnose follicular lymphoma.
However, your doctor may order these tests to
confirm cancer when it hasn’t spread much.
Often, these tests are done at the same time on the
back of hip bone. You may receive a light sedative
before the test. You will likely lie on your side as
shown in Figure 2.2. Some people lie on their belly.
Your doctor will clean your skin and then give local
anesthesia to numb the site. Once numb, a hollow
needle will be inserted into your skin and then pushed
into the bone to remove the liquid bone marrow with a
syringe. Then, a wider needle will be inserted into the
bone and rotated to remove bone and soft marrow.
These biopsies may cause bone pain and can bruise
your skin for a few days. The samples will be sent to
a lab for testing.
Illustration Copyright © 2016 Nucleus Medical Media, All rights
reserved. www.nucleusinc.com
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Treatment planning
Heart tests | Fertility and pregnancy
Heart tests
Fertility and pregnancy
Some cancer treatments can damage your heart.
Thus, your doctor may test how well your heart works
to plan treatment. You may receive one of the two
tests described next. If your heart isn’t working well,
you may receive other treatment.
Some cancer treatments can limit your ability to have
a baby. If you want the choice of having babies after
treatment or are unsure, tell your doctors. It may also
help to talk with a fertility specialist before you begin
cancer treatment. A fertility specialist is an expert in
helping people have babies. The fertility specialist
can discuss with you how to have a baby after
treatment. Some methods of fertility preservation are
discussed next. If you are a woman of childbearing
age, important information on pregnancy is also
addressed.
An echocardiogram is an imaging test of your heart.
It uses sound waves (ultrasound) to make pictures.
During this test, you will be lying down. Small patches
will be placed on your chest to track your heartbeat.
Next, a probe with gel on its tip will be slid across part
of your bare chest. A picture of your beating heart
will be seen at once on a screen. The pictures will be
recorded for future viewing.
Sperm banking
Men who want to father children after cancer
treatment can use sperm banking. Sperm banking
stores semen for later use. This is done by freezing
semen with sperm in liquid nitrogen. Talk to your
treatment team about the costs of and how well
sperm banking works.
A MUGA (multi-gated acquisition) scan measures
how well your heart is pumping blood. For this test,
patches will be placed on your chest to track your
heartbeat. Also, a radiotracer will be injected into
your vein. Pictures of your heart will be taken with a
special camera that can detect the radiation released
by the tracer.
Egg freezing and more
Like sperm banking, a woman’s eggs can be
removed, frozen, and stored for later use. Your frozen
eggs can be fertilized with sperm beforehand. Also,
a part of your ovary that contains eggs can be frozen
and stored.
Pregnancy test
Some cancer treatments can harm an unborn baby.
Get a pregnancy test before treatment if you may be
pregnant now. Your treatment options will depend
on the results. During treatment, take steps to avoid
getting pregnant. Your doctors can tell you which birth
control methods are best to use while on treatment.
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Fertility and pregnancy
My notes
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Treatment planningReview
Review
• Tell your doctor if you have recently had
fevers, night sweats, and weight loss without
dieting. These can be symptoms of follicular
lymphoma.
• A bone marrow biopsy removes a piece of
bone and marrow to test for cancer cells. An
aspirate removes liquid marrow. These tests
may be helpful before starting treatment.
• Your doctor will examine your body for signs
of disease. He or she will check if your lymph
nodes, liver, or spleen are large. Your doctor
will also rate your ability to do everyday
activities.
• You may undergo heart tests to see if you
are healthy enough to have certain cancer
treatments.
• Talk to a fertility specialist to learn about ways
to have babies after cancer treatment. If you
may be pregnant now, get a pregnancy test
since some cancer treatments can harm
unborn babies.
• Blood tests can be done to assess if cancer
treatment is needed and for other health
conditions.
• Imaging tests allow your doctors to see inside
your body without cutting into it. CT, PET/CT,
or both is needed of your torso.
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Overview of
cancer treatments
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3 Overview of cancer
treatments
25Chemotherapy
27Steroids
27Immunomodulators
28
Targeted therapy
29Radioimmunotherapy
30Radiation therapy
32
Stem cell transplant
35
Clinical trials
36Review
In Part 3, the main treatment types
for follicular lymphoma are briefly
described. Knowing what a treatment
is will help you understand your
treatment options listed in Part 4.
There is more than one treatment for
follicular lymphoma. Not every person
will receive every treatment described
in this chapter.
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Overview of cancer treatments
Chemotherapy
Chemotherapy
Chemotherapy may consist of one or more drugs.
When only one drug is used, it is called a single
agent. However, not all drugs work the same way,
so often more than one drug is used. A combination
regimen is the use of two or more chemotherapy
drugs. A steroid, targeted therapy, or both are often
added to chemotherapy. Steroids and targeted
therapy are described later in this chapter.
Chemotherapy, or “chemo,” includes drugs that
disrupt the life cycle of cancer cells so they can’t
increase in number. Chemotherapy is sometimes first
used to treat follicular lymphoma. If not first used, it is
often the next treatment received if other treatments
do not work.
Side effects of chemotherapy
Some chemotherapy drugs kill cancer cells by
damaging their DNA or by disrupting the making of
DNA. Other drugs interfere with cell parts that are
needed for making new cells. Thus, no new cells are
made to replace dying cells.
Side effects are unhealthy or unpleasant physical or
emotional responses to treatment. The reactions to
chemotherapy differ between people. Some people
have many side effects. Others have few. Some
side effects can be very serious while others can be
unpleasant but not serious. Most side effects appear
shortly after treatment starts and will stop after
treatment. However, other side effects are long-term
or may appear years later.
Many chemotherapy drugs work when cells are in
an active growth phase. During the active growth
phase, cells grow and divide to form a new cell.
Chemotherapy drugs that disrupt the growth phase
work well for cancer cells that are growing and
dividing quickly. Other chemotherapy drugs work
whether cells are in a growth or resting phase.
Chemotherapy can kill both cancer and normal cells.
Side effects of chemotherapy depend on many
factors. These factors include the drug type, amount
taken, length of treatment, and the person. In general,
most side effects are caused by the death of fastgrowing normal cells. These cells are found in the
blood, gut, hair follicles, and mouth. Thus, common
side effects of chemotherapy include low blood
cell counts, not feeling hungry, nausea, vomiting,
diarrhea, hair loss, and mouth sores. Lung damage
may also occur at the time of treatment. Late side
effects include another type of cancer, heart disease,
low levels of thyroid hormones (hypothyroidism), and
problems having babies (infertility).
Most chemotherapy drugs for follicular lymphoma are
liquids that are slowly injected into a vein. Some are
a pill that is swallowed. By any method, the drugs
travel in your bloodstream to treat cancer throughout
your body. Doctors use the term “systemic” when
talking about a cancer treatment for the whole body.
Chemotherapy and other drugs used to treat follicular
lymphoma are listed in Chart 3.1, page 27.
Chemotherapy is given in cycles of treatment days
followed by days of rest. This allows your body to
recover before the next cycle. Cycles vary in length
depending on which drugs are used. Often, a cycle is
2 to 4 weeks long.
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Follicular Lymphoma, Version 1.2016
Not all side effects of chemotherapy are listed here.
Please ask your treatment team for a complete list of
common and rare side effects. If a side effect bothers
you, tell your treatment team. There may be ways to
help you feel better. There are also ways to prevent
some side effects.
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Steroids | Immunomodulators
Steroids
Immunomodulators
Steroids are a type of drug that is often used to
relieve inflammation. Steroids also are toxic to
lymphoma cells and therefore have strong anti-cancer
effects. The steroids used to treat follicular lymphoma
are listed in Chart 3.1. Steroid is the short name for
corticosteroids.
The immune system is your body’s natural defense
against infection and disease. Immunomodulators
are drugs that modify different parts of the immune
system. Lenalidomide is an immunomodulator that
may be received with targeted therapy as a first-time
treatment. It is also an option if first-time treatment
does not work.
Steroids are a part of some chemotherapy
regimens. They are often given on the same days
as chemotherapy but only for a few days or a week.
Prednisone is made in pill form but dexamethasone
and methylprednisolone are made both as a liquid to
be injected or a pill to be swallowed.
Lenalidomide is made in pill form. It is given in cycles
of treatment days followed by days of rest. A cycle
may consist of 3 weeks of treatment and 1 week of
rest. It may also be given for 4 straight weeks. Cycles
may repeat until the cancer grows or side effects
become severe.
Most side effects of steroids fade away once the
drugs are stopped. Common side effects include
feeling hungry, trouble sleeping, mood changes, slow
wound healing, upset stomach, and swelling in the
ankles, feet, and hands.
Lenalidomide treats cancer in more than one way.
As an immunomodulator, it boosts the immune
system. It also helps stop cancer cells from
increasing in number. Third, it also works like a type
of targeted therapy called an angiogenesis inhibitor.
Angiogenesis inhibitors stop the growth of new blood
vessels that would provide food (nutrients) to the
cancer.
Common side effects include low blood counts,
diarrhea, itching, rash, and extreme tiredness despite
sleep (fatigue). Serious but less common side effects
include blood clots, bleeding disorders, loss of vision,
and skin cancer. Ask your treatment team for a full list
of side effects.
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Steroids | Immunomodulators
Chart 3.1 Drug treatment for follicular lymphoma
Generic name
Brand name (sold as)
Type of treatment
Bendamustine hydrochloride
Treanda®
Chemotherapy
Carboplatin
–
Chemotherapy
Chlorambucil
Leukeran®
Chemotherapy
Cisplatin
Platinol®
Chemotherapy
Cyclophosphamide
–
Chemotherapy
Cytarabine
Cytosar-U®
Chemotherapy
Dexamethasone
–
Steroid
Doxorubicin hydrochloride
–
Chemotherapy
Etoposide; Etoposide phosphate
Etopophos® Preservative Free
Chemotherapy
Fludarabine phosphate
Fludara®
Chemotherapy
Gemcitabine hydrochloride
Gemzar®
Chemotherapy
Ibritumomab tiuxetan
Zevalin®
Radioimmunotherapy
Idelalisib
Zydelig®
Targeted therapy
Ifosfamide
–
Chemotherapy
Lenalidomide
Revlimid®
Immunomodulator
Mesna
Mesnex® Injection
Chemoprotectant
Methylprednisolone;
Methylprednisolone acetate;
Methylprednisolone sodium
succinate
A-Methapred, Depo-Medrol®,
Medrol®, Solu-Medrol®
Steroid
Mitoxantrone hydrochloride
Novantrone®
Chemotherapy
Obinutuzumab
Gazyva™
Targeted therapy
Oxaliplatin
Eloxatin®
Chemotherapy
Prednisone
–
Steroid
Procarbazine hydrochloride
Matulane®
Chemotherapy
Rituximab
Rituxan®
Targeted therapy
Vincristine sulfate
–
Chemotherapy
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Targeted therapy
Targeted therapy
Common side effects of idelalisib include diarrhea,
fever, fatigue, nausea, cough, lung infection, belly
pain, chills, and rash. White blood counts are often
low when taking this medicine. However, there may
be a short-lived increase in lymphocytes when first
taking idelalisib. Serious but uncommon side effects
include liver and lung problems, skin problems,
severe diarrhea, and holes in your gut.
Targeted therapy describes a class of drugs that
stops the action of molecules that help cancer cells
grow. These drugs are less likely to harm normal cells
than chemotherapy. There are 2 types of targeted
therapy that are used to treat follicular lymphoma.
These types are kinase inhibitors and monoclonal
antibodies.
Rituximab
Rituximab is a monoclonal antibody that attaches to
a molecule called CD20. See Figure 3.1. It works
by marking cells for destruction but it may directly
kill the cells, too. It is sometimes used alone, with
chemotherapy, or with lenalidomide to treat follicular
lymphoma.
Kinases are molecules that move chemicals, called
phosphates, from one molecule to another. Kinase
inhibitors stop the phosphate from being moved.
Kinase inhibitors often block growth signals within
cancer cells. This reduces the number of new cancer
cells being made.
Monoclonal antibodies are man-made antibodies that
attach to proteins on cancer cells. The monoclonal
antibodies used to treat follicular lymphoma attach to
antigens. When antibodies are attached to antigens
on a cell, the cell is marked to be destroyed by your
immune system.
Figure 3.1 Anti-CD20 monoclonal antibody
Anti-CD20 monoclonal antibodies attach to follicular
lymphoma cells to mark them for destruction by
your immune system.
Targeted therapy for follicular lymphoma is briefly
described next. Some side effects are listed. Ask your
treatment team for a full list of common and rare side
effects. In Part 4, information on who should receive
these drugs is provided.
Idelalisib
Idelalisib is a kinase inhibitor. It stops a kinase called
PI3K (phosphoinositide 3-kinase delta). This kinase is
found inside of follicular lymphoma cells and normal
B-cells.
Idelalisib is an option if first-time treatment does not
work. It is made in pill form and is taken twice a day.
Your doctor will tell you how many pills you need for
your dose.
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Derivative work of Rituximab Binding to CD20 on a B Cell Surface
by NIAID available at commons.wikimedia.org/wiki/File:Rituxima_
Binding_to_CD20_on_a_B_Cell_Surface_(6830897205).jpg under
a Creative Commons Attribution 2.0 Generic license
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Overview of cancer treatments
Targeted therapy | Radioimunotherapy
Rituximab is a liquid that will be slowly injected into
your vein. It often takes a few hours to receive the full
dose. How often rituximab is received differs among
people. Ask your doctor for more information.
You may have an allergic reaction while receiving
rituximab. Other common side effects are chills,
infections, body aches, tiredness, and low blood cell
counts. Rituximab also increases your chances for
tumor lysis syndrome, heart problems, and blockage
and holes in your gut.
Obinutuzumab
Obinutuzumab is also an anti-CD20 monoclonal
antibody. It works by marking cells for destruction
but it may directly kill the cells, too. It may be used
to extend the good results of other treatments for
follicular lymphoma.
Obinutuzumab is a liquid that will be slowly injected
into your vein. It takes a few hours to get the full dose.
Obinutuzumab is given on some days during six 28day treatment cycles.
You may have an allergic reaction while receiving
obinutuzumab. Tumor lysis syndrome, infections, and
hepatitis are more likely while taking obinutuzumab.
Although not common, you may become confused,
dizzy, and have difficulty walking, talking, or seeing.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
Radioimmunotherapy
Ibritumomab tiuxetan is a radioimmunotherapy
drug used for follicular lymphoma. It consists of a
monoclonal antibody attached to a radioactive atom
(Yttrium-90). Ibritumomab is like rituximab as far as
attaching to CD20. Once attached to a cell, it releases
radiation that kills the cell and nearby cells. How
radiation kills cancer cells is explained in the next
section.
A course of treatment occurs in few steps. You will
receive one dose of rituximab then you’ll receive a
second dose 7 to 9 days after the first dose. Within
4 hours after the second dose, you will receive
ibritumomab tiuxetan. It is slowly injected into a vein
for about 10 minutes.
Read the prior section called Rituximab to learn of
its side effects. Side effects of ibritumomab include
reactions in your skin and mucous membranes.
Mucous membranes are in your mouth, nose,
bladder, and other areas. You may also have stomach
pains, nausea, and diarrhea. Late effects include
second cancers, although this is rare.
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Overview of cancer treatmentsRadiation therapy
Radiation therapy
the therapists operate the machine from the nearby
control room.
Radiation therapy consists of high-energy rays that
damage DNA. This either kills the cancer cells or
stops new cancer cells from being made. Radiation
can also harm normal cells. As a result, treatment
methods are always being improved to target the
tumor more precisely.
The therapists will be able to see, hear, and speak
with you. As treatment is given, you may hear noises.
One session takes less than 10 minutes. The types of
EBRT include:
• 3D-CRT (three-dimensional conformal
radiation therapy) – Treatment is completed
in about 6 weeks and uses photon beams that
match the shape of the tumor.
• IMRT (intensity-modulated radiation therapy)
– Treatment is completed in about 6 weeks
and uses photon beams of different strengths
based on the thickness of the tumor.
• Proton therapy – Treatment is completed in
about 6 weeks and uses proton beams that
deliver radiation mostly within the tumor.
Involved-site radiation therapy
ISRT (involved-site radiation therapy) is sometimes
used to treat follicular lymphoma. It can treat lymph
nodes in which the cancer first started and cancer
near to these nodes. It is given with a method called
EBRT (external beam radiation therapy). This method
delivers radiation with a machine that is outside your
body.
Treatment planning with a simulation session is
needed. During simulation, pictures of the tumor will
be taken after your body is moved into the position
needed for treatment. CT with contrast is used. PET/
CT and MRI (magnetic resonance imaging) often
enhance treatment planning. For tumors near the
breastbone, 4D-CT (four-dimensional computed
tomography) or fluoroscopy can account for tumor
movement from breathing. If your breathing causes
large movements, motion control methods during the
scans may be used.
IGRT (image-guided radiation therapy) can improve
how well the radiation beam targets some tumors.
IGRT uses the machine that delivers the radiation
to also take images of the tumor and normal body
structures. This can be done right before or during
treatment. These images are compared to the ones
taken during simulation. If needed, changes will be
made to your body position or the radiation beams.
Side effects of radiation
Most side effects of radiation depend on where the
treatment was given. However, many people feel
fatigue. Changes in skin are also common right after
treatment. Your treated skin may look and feel as if
it has a mild sunburn. It may also become dry, sore,
and feel painful when touched. You may also have
short-term hair loss, but only where treated.
Using the scans, your treatment team will plan the
best radiation dose, number and shape of radiation
beams, and number of treatment sessions. Beams are
shaped with computer software and hardware added
to the radiation machine. Radiation beams are aimed
at the tumor with help from ink marks on your skin.
During treatment, you will lie on a table in the same
position as done for simulation. Devices may be
used to keep you from moving. These may include a
mesh mask and body mold. You will be alone while
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Treatment to the head and neck can cause mouth
sores, dry mouth, changes in taste, and a sore throat.
Chest radiation can cause a dry cough or a sensation
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Overview of cancer treatmentsRadiation therapy
Supportive care
Supportive care doesn’t aim to treat cancer
but aims to improve quality of life. It is
also called palliative care. It can address
many needs. One example is treatment
for physical and emotional symptoms.
Supportive care can also help with treatment
decisions as you may have more than one
option. It can also help with coordination
of care between health providers. Talk
with your treatment team to plan the best
supportive care for you.
of a lump when you swallow. Radiation near your
belly can cause nausea and maybe vomiting, and
when given between your hip bones, diarrhea and
cramps.
Late side effects of radiation may also occur. Again,
the effects depend on the treatment site. Examples
include dry mouth, dental cavities, hypothyroidism,
lung scarring, heart disease, infertility, and second
cancers.
Not all side effects of radiation are listed here.
Please ask your treatment team for a complete list of
common and rare side effects. If a side effect bothers
you, tell your treatment team. There may be ways to
help you feel better. There are also ways to prevent
some side effects.
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Stem cell transplant
Stem cell transplant
Collecting your stem cells
The first step of a autologous stem cell transplant
is to collect, or harvest, the blood stem cells. Blood
stem cells are found in the bone marrow and in the
bloodstream. The methods to harvest differ based on
collecting from marrow or blood.
Hematopoietic stem cells are cells that develop
into mature blood cells. Hematopoietic stem cells
and mature blood cells are made in bone marrow.
Cancer or its treatment can damage or destroy the
cells in bone marrow. A stem cell transplant replaces
damaged or destroyed stem cells with healthy stem
cells, which form new marrow and blood cells. There
are two types of stem cell transplant.
If stem cells are collected from blood, a process
called apheresis will be done. First, medicine is given
to increase the number of stem cells in blood. Then,
some blood will be removed from a large vein most
likely in your arm. The blood will flow through a tube
and into a machine that removes stem cells. The rest
of the blood will be returned through the other arm.
Autologous stem cell transplant uses your healthy stem
cells to repair bone marrow. This treatment is also
called HDT/ASCR (high-dose therapy with autologous
stem cell rescue). Healthy stem cells will be collected
from you when imaging tests show that cancer
treatment is working. You will then receive intense
chemotherapy and maybe radiation to destroy any
remaining cancer cells. This intense treatment will also
destroy bone marrow, so your healthy stem cells will be
put back into your body to “rescue” your marrow.
Apheresis typically takes 4 to 6 hours and does not
require anesthesia. It may take two or more sessions
to obtain enough stem cells. During the procedure,
you may have lightheadedness, chills, numbness
around the lips, and cramping in the hands.
Bone marrow aspiration is used to remove bone
marrow. For this procedure, either regional anesthesia
or general anesthesia is given. Next, a needle will be
inserted through the skin into the hip bone to draw
out the bone marrow. The needle must be inserted
many times into one or more spots to collect enough
marrow. The marrow will then be processed to collect
the stem cells.
Allogeneic stem cell transplant uses healthy stem
cells that come from a donor. HLA (human leukocyte
antigen) typing is the test used to check if the donor
and your tissue type are a good fit. Chemotherapy will
be given to destroy cancer cells and suppress your
immune system from attacking the donor cells. The
transplanted stem cells will form new marrow and
attack remaining cancer cells. This attack is known
as the GVT (graft-versus-tumor) effect. On the other
hand, there is a serious risk of GVHD (graft-versushost disease). GVHD is when the donated cells see
the cells in your body as foreign and attack them.
Collection of the bone marrow takes about 1 hour.
The entire hospital stay will likely be 6 to 8 hours,
which includes recovery time. The aspiration will
likely cause some pain and soreness for a few days.
Anesthesia may cause nausea, headache, and
tiredness.
A stem cell transplant is not used at first to treat
follicular lymphoma. It is an option after second-line
and following treatments to kill remaining cancer cells.
Autologous stem cell transplant is more commonly
used for follicular lymphoma. More details on this
transplant are given next. An allogeneic stem cell
transplant may be an option for some people.
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After apheresis or aspiration, the harvested cells
will be combined with a preservative. Then, they will
be frozen and stored to keep them alive until the
transplant. This process is called cryopreservation.
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Stem cell transplant
High-dose chemotherapy
Before the autologous transplant, you will likely
receive high doses of chemotherapy. High doses are
given to kill any cancer cells that may remain after
prior treatment. Chemotherapy is often received for
several days. The transplant will occur 1 or 2 days
later to allow the chemotherapy to clear from your
body. Otherwise, the chemotherapy could damage
the healthy stem cells.
Transplanting your stem cells
After chemotherapy, you will receive your healthy
stem cells through a transfusion. A transfusion is a
slow injection of blood products through a central
line into a large vein. A central line (or central venous
catheter) is a thin tube. The tube will be inserted into
your skin through one cut and into your vein through
a second cut. Local anesthesia is used. This process
can take several hours to complete.
The transplanted stem cells will travel to your bone
marrow and grow. New, healthy blood cells will form.
This is called engraftment. It usually takes about 2 to
4 weeks.
Until then, you will have little or no immune defense.
You will need to stay in a very clean room at the
hospital. You may be given an antibiotic to prevent or
treat infection. You may also be given a blood platelet
transfusion to prevent bleeding and blood transfusion
to treat low red blood counts (anemia). While waiting
for the cells to engraft, you will likely feel tired and
weak.
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Clinical trials
Complementary and alternative medicine
CAM (complementary and alternative medicine)
is a group of treatments that aren’t often given
by doctors. There is much interest today in
CAM for cancer. Many CAMs are being studied
to see if they are truly helpful.
Complementary medicines are treatments
given along with usual medical treatments.
While CAMs aren’t known to kill cancer cells,
they may improve your comfort and wellbeing. Two examples are acupuncture for pain
management and yoga for relaxation.
Alternative medicine is used in place of usual
medicine. Some alternative medicines are
sold as cures even though they haven’t been
proven to work in clinical trials. If there was
good proof that CAMs or other treatments
cured cancer, they would be included in this
book.
It is important to tell your treatment team if you
are using any CAMs. They can tell you which
CAMs may be helpful and which CAMs may
limit how well medical treatments work.
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Clinical trials
Clinical trials
New tests and treatments aren’t offered to the
public as soon as they’re made. They first need to
be studied. A clinical trial is a type of research that
studies a test or treatment.
Clinical trials study how safe and helpful tests and
treatments are. When found to be safe and helpful,
they may become tomorrow’s standard of care.
Because of clinical trials, the tests and treatments in
this book are now widely used to help people with
follicular lymphoma. Future tests and treatments that
may have better results than today’s treatments will
depend on clinical trials.
New tests and treatments go through a series of
clinical trials to make sure they’re safe and work.
Without clinical trials, there is no way to know if a
test or treatment is safe or helpful. Clinical trials have
four phases. Some examples of the four phases for
treatment are:
Clinical trials have risks, too. Like any test or
treatment, there may be side effects. Also, new tests
or treatments may not help. Another downside may
be that paperwork or more trips to the hospital may
be needed.
To join a clinical trial, you must meet the conditions
of the study. Patients in a clinical trial are often alike
in terms of their cancer and general health. This is to
know that any progress is because of the treatment
and not because of differences between patients.
To join, you’ll need to review and sign a paper called
an informed consent form. This form describes the
study in detail. The study’s risks and benefits should
be described and may include others than those
described above.
Ask your treatment team if there is an open clinical
trial that you can join. There may be clinical trials
where you’re getting treatment or at other treatment
centers nearby. You can also find clinical trials
through the websites listed in Part 5.
• Phase I trials – aim to find the best dose of a
new drug with the fewest side effects.
• Phase II trials – assess if a drug works to
treat a specific type of cancer.
• Phase III trials – compare a new drug to the
standard treatment.
• Phase IV trials – test new drugs approved by
the U.S. FDA (Food and Drug Administration)
in many patients with different types of cancer.
Joining a clinical trial has benefits. First, you’ll have
access to the most current cancer care. Second, you
will receive the best management of care. Third, the
results of your treatment—both good and bad—will be
carefully tracked. Fourth, you may help other people
who will have cancer in the future.
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3
Overview of cancer treatmentsReview
Review
• Chemotherapy stops the life cycle of cancer
cells so they can’t increase in number.
• A stem cell transplant rebuilds bone marrow
by giving a person healthy blood stem cells.
An autologous transplant uses your healthy
stem cells to rebuild marrow damaged by
high doses of chemotherapy that was given
to kill cancer cells. An allogeneic transplant
suppresses your immune system with
chemotherapy then transfuses donor stem
cells that will attack cancer cells.
• Some steroids have anti-cancer effects and
may be used with chemotherapy.
• Lenalidomide is an immunomodulator. It treats
follicular lymphoma by modifying your immune
system and by other means.
• Three targeted therapies are used to treat
follicular lymphoma. Idelalisib stops some
growth signals within cancer cells. Rituximab
and obinutuzumab mark cancer cells for
destruction and may directly kill the cells, too.
• Clinical trials give people access to new tests
and treatments that otherwise can’t usually
be received. These new tests and treatments
may in time be approved by the FDA.
• Ibritumomab tiuxetan attaches to cancer cells
then releases radiation to kill them.
• Involved-site radiation therapy kills cancer
within lymph nodes and nearby by damaging
DNA.
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4
Treatment guide
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4 Treatment guide
40
4.1 Stage I and limited stage II
cancers
Lists treatment options for cancers
that are either above or below your
diaphragm. If the cancer is in more
than one cluster of lymph nodes, it is
not widespread.
42
4.2 Extensive stage II and
stage III‒IV cancers
Lists treatment options for
widespread cancers that are either
above or below your diaphragm in
two or more lymph node clusters,
cancers that are on both sides of
your diaphragm, or cancers that
have widely spread outside the
lymphatic system.
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Review
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DCIS
Treatment
guide
Genetic
Follicular
counseling
lymphoma
| Treatment
Part 4 is a guide to the treatment
options for people with follicular
lymphoma. Options are listed by
cancer stage. This information is
taken from the treatment guidelines
written by NCCN experts of follicular
lymphoma. These treatment
guidelines list options for people
with follicular lymphoma in general.
Thus, your doctors may suggest
other treatment for you based on your
health and personal wishes. Fully
discuss your treatment options with
your doctor.
Treatment process
Follicular lymphoma is often a slow-growing cancer.
It can take many years for this cancer to become
a problem. Because it is slow-growing, treatment
may not work as well as for other cancers. Follicular
lymphoma usually returns years after first-time
treatment. Thus, the treatment process will likely
occur over many years and consist of repeated
periods of treatment and follow-up care.
Follicular lymphoma is usually found after it is
widespread in the body. If widespread, you may not
start treatment right away. Read Part 4.2 to learn
more. If not widespread, your doctor may start
treatment right away to try to cure the cancer. If the
cancer is not cured, its growth may be stopped for a
long period of time.
Your doctor will plan your treatment based on many
factors. Your age, overall health, cancer stage, and
treatment goals can affect your options. Your doctor
may advise a certain cancer treatment now so that
others are still options down the road.
Most people have more than one option when being
treated for cancer the first time. After some types
of first-time treatment, your doctor may advise you
to receive more treatment. This “extra” treatment is
called either consolidation or maintenance treatment.
The goal of consolidation treatment is to kill any
lingering cancer cells that may be present in your
body. The goal of maintenance treatment is to prevent
the cancer from coming back. If the cancer does
return, there are treatments that have been proven in
clinical trials to work well.
Along with cancer treatment, you may also be treated
to prevent or control other health conditions. Such
actions are a part of supportive care. Health conditions
that are a concern for some people include tumor lysis
syndrome, reactivated viruses, and other infections.
Talk to your doctor about which health conditions you
may develop as a result of cancer treatment.
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counseling
I and limited
| Treatment
stage II cancers
4.1 Stage I and limited stage II cancers
Chart 4.1.1 First-time treatment
Treatment options
• Involved-site radiation therapy
• Observation if radiation therapy would be too harmful
• Rituximab ± chemotherapy
◦◦ If this treatment doesn't work well, involved-site radiation therapy may be received
• Rituximab ± chemotherapy + involved-site radiation therapy
Chart 4.1.2 Follow-up care
Type of care
Schedule of care
Medical history and physical exam
• Every 3–6 months for 5 years
◦◦ If normal results, then repeat every year or when needed
CBC, chemistry panel
• Every 3–6 months for 5 years
◦◦ If normal results, then repeat every year or when needed
Imaging tests
• Not more often than every 6 months for Years 1 and 2
• Not more often than every year for Year 3 and on
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Genetic
Stage
counseling
I and limited
| Treatment
stage II cancers
Chart 4.1.1 lists treatment options for stage I and
limited stage II cancers. Four options are listed.
Involved-site radiation therapy is the preferred
treatment choice for cancer confined to a small area.
There is good proof that this treatment works well.
However, radiation therapy may be too harmful for
some people. Others may refuse radiation. In either
case, observation may be an option for limited
cancers. Observation or “watch-and-wait” is a period
of testing to see if the cancer grows. Treatment may
be started once the cancer will cause symptoms or
problems.
A third option is rituximab with or without
chemotherapy. For chemotherapy, bendamustine,
CHOP, or a related regimen is often used. CHOP
consists of cyclophosphamide, doxorubicin,
vincristine, and prednisone. If tests suggest that
treatment didn’t work well, you may receive radiation
therapy next. Research is ongoing for this third option
but results so far are promising.
Chart 4.1.2 lists the follow-up care needed for
cancer that is fully or partly treated by first-time
treatment. If the cancer is the same or worse, read
Part 4.2 for treatment options.
Follow-up care includes a medical history, physical
exam, and lab and imaging tests. A test schedule
is listed in the chart but these tests may be done
whenever there are signs of cancer. CT is the
standard imaging test used during follow-up.
However, PET/CT may clarify if a mass found by CT
is cancer or just scar tissue.
The cancer might grow during follow-up care. If
growth occurs, a biopsy is needed. The removed
tissue will be tested to see if the type of cancer has
changed. If follicular cancer is still present, read Part
4.2 for treatment options. If the cancer has changed
into diffuse large B-cell lymphoma, read the related
NCCN Guidelines for Patients® for chemotherapy
options. Other options may include ibritumomab
tiuxetan, radiation therapy, a clinical trial, or
supportive care only.
A fourth option is rituximab followed by involved-site
radiation therapy. Chemotherapy may be added.
More research on this option is needed.
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Extensive
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stage| IITreatment
and stage III‒IV cancers
4.2 Extensive stage II and stage III‒IV cancers
Chart 4.2.1 First-time treatment
Treatment options
• Drug treatment
◦◦ Bendamustine + rituximab
◦◦ R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, prednisone)
◦◦ R-CVP (rituximab, cyclophosphamide, vincristine, prednisone)
◦◦ Rituximab
◦◦ Lenalidomide + rituximab
◦◦ Less harsh chemotherapy, (eg, chlorambucil, cyclophosphamide) ± rituximab
◦◦ Ibritumomab tiuxetan
• Clinical trial
• Local radiation therapy
Extra treatment options
• Rituximab
• Ibritumomab tiuxetan
• Observation
Chart 4.2.2 Follow-up care
Type of care
Schedule of care
Medical history and physical exam
• Every 3–6 months for 5 years
◦◦ If normal results, then repeat every year or when needed
CBC, chemistry profile
• Every 3–6 months for 5 years
◦◦ If normal results, then repeat every year or when needed
Imaging tests
• Not more often than every 6 months for Years 1 and 2
• Not more often than every year for Year 3 and on
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Genetic
Extensive
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stage| IITreatment
and stage III‒IV cancers
If you have an extensive stage II or stage III or IV
cancer, you may not have to start treatment right
away. Instead, you can start observation. This waitand-watch approach follows the care listed in Part
4.2.2. During this time, your doctor will look for signs
to start treatment. These signs include:
• The cancer is causing symptoms,
• The cancer is limiting how well your organs
work,
• The cancer is causing low numbers of blood
cells,
• The cancer has grown large or spread far,
• The cancer has caused your spleen to be very
large, and
• The cancer has been growing for at least 6
months.
withstand ibritumomab tiuxetan, but you must meet
certain conditions. These conditions include having
enough healthy bone marrow.
Besides the listed drug treatments, a clinical trial or
radiation therapy are options. You may be able to join
a clinical trial of a new treatment. Radiation therapy
is an option for people who are frail and unable to
receive drug treatment. Radiation therapy would not
cure the cancer. It may shrink the cancer and reduce
symptoms.
Rituximab may be used as a maintenance treatment
following chemotherapy with rituximab. It is received
one time every 8 weeks for 2 years. Rituximab is
also used as a consolidation treatment after taking
rituximab only. It is received one time every 8 weeks
for 8 months.
Research has shown that starting treatment before
these signs appear does not treat the cancer any
better. Your length of life will not be extended.
However, you may wish to start treatment before
these signs appear. In this case, there may be a
clinical trial you can join. If there are signs to start
treatment, read Chart 4.2.1 for more information.
Ibritumomab tiuxetan is another consolidation
treatment. It can be received if your first treatment
included chemotherapy. You must also have enough
healthy bone marrow. Be aware that more research is
needed to learn the full impact of having rituximab as
your first treatment followed by ibritumomab.
Chart 4.2.1 lists treatment options for extensive
Chart 4.2.2 lists the follow-up care needed for fully
stage II and all stage III and IV cancers. Treatment
with cancer drugs is one option. Bendamustine with
rituximab, R-CHOP, and R-CVP have been tested in
well-designed clinical trials and shown to work well.
All three are chemoimmunotherapies, which consist
of both chemotherapy and rituximab. Other drug
options are rituximab alone and lenalidomide with
rituximab.
Some cancer drugs can be harmful to people who are
older or quite sick. In these cases, rituximab may be
the preferred option. Another option is chemotherapy
that’s not too harmful. Such treatment includes
chlorambucil or cyclophosphamide. Rituximab may
be added to these drugs. Many people can also
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
or partly treated cancer. Follow-up care includes
medical history, physical exam, and lab and imaging
tests. A test schedule is listed in the chart but these
tests may be done whenever there are signs of
cancer. CT is the standard imaging test used during
follow-up. However, PET/CT may clarify if a mass
found by CT is cancer or just scar tissue.
The cancer might grow during follow-up care. If
growth occurs, a biopsy is needed. The removed
tissue will be tested to see if the type of cancer has
changed. For follicular cancer, you may be observed
first and only treated if signs that treatment is needed
appear. If treatment is needed, read Chart 4.2.3 for
treatment options. If the cancer has changed into
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Extensive
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stage| IITreatment
and stage III‒IV cancers
Chart 4.2.3 Second-time treatment
Treatment options
Extra treatment options
• Drug treatment
• Rituximab
◦◦ Bendamustine + rituximab
• Autologous stem cell transplant
◦◦ R-CHOP (rituximab, cyclophosphamide,
doxorubicin, vincristine, prednisone)
• Allogeneic stem cell transplant
◦◦ R-CVP (rituximab, cyclophosphamide, vincristine,
prednisone)
◦◦ Rituximab
◦◦ Lenalidomide ± rituximab
◦◦ Less harsh chemotherapy ± rituximab
◦◦ Ibritumomab tiuxetan
◦◦ Idelalisib
◦◦ Fludarabine + rituximab
◦◦ R-FND (rituximab, fludarabine, mitoxantrone,
dexamethasone)
◦◦ DHAP (dexamethasone, cisplatin, cytarabine) ±
rituximab
◦◦ ESHAP (etoposide, methylprednisolone,
cytarabine, cisplatin) ± rituximab
◦◦ GDP [gemcitabine, dexamethasone, (cisplatin or
carboplatin)] ± rituximab
◦◦ GemOx (gemcitabine, oxaliplatin) ± rituximab
◦◦ ICE (ifosfamide, carboplatin, etoposide) ±
rituximab
◦◦ MINE (mesna, ifosfamide, mitoxantrone,
etoposide) ± rituximab
◦◦ Brentuximab vedotin for CD30+ disease
◦◦ CEPP (cyclophosphamide, etoposide, prednisone,
procarbazine) ± rituximab
◦◦ CEOP (cyclophosphamide, etoposide, vincristine,
prednisone) ± rituximab
◦◦ DA-EPOCH (etoposide, prednisone, vincristine,
cyclophosphamide, doxorubicin) ± rituximab
• Clinical trial
• Local radiation therapy
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• Obinutuzumab
• Observation
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Extensive
counseling
stage| IITreatment
and stage III‒IV cancers
diffuse large B-cell lymphoma, read the related NCCN
Guidelines for Patients® for chemotherapy options.
Other options may include ibritumomab tiuxetan,
radiation therapy, a clinical trial, or supportive care
only.
Chart 4.2.3 lists treatment options for extensive
stage II and stage III and IV cancers that grow after
first-time treatment. Like first-time treatment, options
include chemotherapy with rituximab, rituximab alone,
and lenalidomide with or without rituximab.
There is good proof that ibritumomab tiuxetan works
well after first-time treatment. You must meet certain
conditions to take this medicine. These conditions
include having enough healthy bone marrow.
Idelalisib is a newer FDA-approved drug for follicular
lymphoma. It is approved for use if the cancer keeps
growing after at least two other drug treatments.
However, more research is needed to know how
idelalisib compares to other treatments.
Extra treatment options
If the cancer is fully or partly treated by drug
treatments, your doctor may suggest receiving more
treatment. Five options are listed in Chart 4.2.3. One
of which is observation (watch and wait).
Rituximab may be used as a maintenance treatment.
It is received one time every 12 weeks for 2 years. If
maintenance rituximab after first-time treatment had
little benefit, it probably won’t be helpful now either.
For some people, obinutuzumab may be used for
maintenance.
For consolidation, a stem cell transplant is an option.
You must be fairly healthy to have this treatment. An
autologous transplant is the more common type for
follicular lymphoma. In some cases, an allogeneic
transplant is an option.
Fludarabine with rituximab and R-FND are other
options. However, you should be aware that
fludarabine-based chemotherapy can prevent you
from having a stem cell transplant. It can also cause a
second cancer over time.
The other drug options listed in Chart 4.2.3 are used
to treat diffuse large B-cell lymphoma. However, they
may be helpful for follicular lymphoma, too. These
drugs can cause severe side effects.
Besides drug treatment, a clinical trial or radiation
therapy are options. You may be able to join a
clinical trial of a new treatment. Radiation therapy
is an option for people who are frail and unable to
receive drug treatment. Radiation therapy would not
cure the cancer. It may shrink the cancer and reduce
symptoms.
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DCIS
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guideReview
Genetic counseling | Treatment
Review
• Treatment options for follicular lymphoma are
based on the stage and size of the cancer.
• Treatment for extensive stage II and all
stage III and IV cancers may not to be
started right away. If treatment is needed,
chemoimmunotherapy has been shown
in clinical trials to work well. If the cancer
returns, there are multiple treatment options.
• For stage I and limited stage II cancers, the
preferred treatment for cancers confined to a
small area is radiation therapy. Rituximab with
or without chemotherapy is another option.
Radiation therapy may be received after
rituximab.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
• Follow-up care is for cancers that were partly
or fully treated. Your doctor will look for signs
of cancer growth. If tests suggest cancer
growth, a biopsy is needed.
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5
Making treatment decisions
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5 Making treatment
decisions
49It’s your choice
50
Questions to ask your doctors
54
Weighing your options
56Websites
56Review
Having cancer is very stressful.
While absorbing the fact that you
have cancer, you have to learn about
tests and treatments. In addition, the
time you have to accept a treatment
plan feels short. Parts 1 through 4
described the cancer and the test and
treatment options recommended by
NCCN experts. These options are
based on science and agreement
among NCCN experts. Part 5 aims
to help you make decisions that are
in line with your beliefs, wishes, and
values.
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5
Making treatment decisionsIt’s your choice
It’s your choice
The role patients want in choosing their treatment
differs. You may feel uneasy about making treatment
decisions. This may be due to a high level of stress.
It may be hard to hear or know what others are
saying. Stress, pain, and drugs can limit your ability to
make good decisions. You may feel uneasy because
you don’t know much about cancer. You’ve never
heard the words used to describe cancer, tests,
or treatments. Likewise, you may think that your
judgment isn’t any better than your doctors’.
Letting others decide which option is best may make
you feel more at ease. But, whom do you want to
make the decisions? You may rely on your doctors
alone to make the right decisions. However, your
doctors may not tell you which to choose if you have
multiple good options. You can also have loved
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
ones help. They can gather information, speak on
your behalf, and share in decision-making with your
doctors. Even if others decide which treatment you
will receive, you still have to agree by signing a
consent form.
On the other hand, you may want to take the lead
or share in decision-making. Most patients do. In
shared decision-making, you and your doctors share
information, weigh the options, and agree on a
treatment plan. Your doctors know the science behind
your plan but you know your concerns and goals. By
working together, you are likely to get a higher quality
of care and be more satisfied. You’ll likely get the
treatment you want, at the place you want, and by the
doctors you want.
49
5
Making treatment decisions
Questions to ask your doctors
Questions to ask your doctors
You will likely meet with experts from different fields of medicine. Strive to have helpful talks with
each person. Prepare questions before your visit and ask questions if the person isn’t clear. You can
also record your talks and get copies of your medical records. It may be helpful to have your spouse,
partner, or a friend with you at these visits. A patient advocate or navigator might also be able to come.
They can help to ask questions and remember what was said. Suggested questions to ask include:
What’s my diagnosis and prognosis?
It’s important to know that there are different types of cancer. Cancer can greatly differ even when
people have a tumor in the same organ. Based on your test results, your doctors can tell you which
type of cancer you have. He or she can also give a prognosis. A prognosis is a prediction of the pattern
and outcome of a disease. Knowing the prognosis may affect what you decide about treatment.
1. Where did the cancer start? In what type of cell?
2. Is this cancer common?
3. What is the cancer stage? Does this stage mean the cancer has spread far?
4. Is this a fast- or slow-growing lymphoma?
5. What other test results are important to know?
6. How often are these tests wrong?
7. Would you give me a copy of the pathology report and other test results?
8. Can the cancer be cured? If not, how well can treatment stop the cancer from growing?
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5
Making treatment decisions
Questions to ask your doctors
What are my options?
There is no single treatment practice that is best for all patients. There is often more than one
treatment option along with clinical trial options. Your doctor will review your test results and
recommend treatment options.
1. What will happen if I do nothing?
2. Can I just carefully monitor the cancer?
3. Do you consult NCCN recommendations when considering options?
4. Are you suggesting options other than what NCCN recommends? If yes, why?
5. Do your suggested options include clinical trials? Please explain why.
6. How do my age, health, and other factors affect my options?
7. Which option is proven to work best?
8. Which options lack scientific proof?
9. What are the benefits of each option? Does any option offer a cure? Are my chances any better
for one option than another? Less time-consuming? Less expensive?
10. What are the risks of each option? What are possible complications? What are the rare and
common side effects? Short-lived and long-lasting side effects? Serious or mild side effects?
Other risks?
11. What can be done to prevent or relieve the side effects of treatment?
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5
Making treatment decisions
Questions to ask your doctors
What does each option require of me?
Many patients consider how each option will practically affect their lives. This information may be
important because you have family, jobs, and other duties to take care of. You also may be concerned
about getting the help you need. If you have more than one option, choosing the option that is the
least taxing may be important to you:
1. Will I have to go to the hospital or elsewhere? How often? How long is each visit?
2. Do I have a choice of when to begin treatment? Can I choose the days and times of treatment?
3. How do I prepare for treatment? Do I have to stop taking any of my medicines? Are there foods I
will have to avoid?
4. Should I bring someone with me when I get treated?
5. Will the treatment hurt?
6. How much will the treatment cost me? What does my insurance cover? 7. Will I miss work or school? Will I be able to drive?
8. Is home care after treatment needed? If yes, what type?
9. How soon will I be able to manage my own health?
10. When will I be able to return to my normal activities?
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5
Making treatment decisions
Questions to ask your doctors
What is your experience?
More and more research is finding that patients treated by more experienced doctors have better
results. It is important to learn if a doctor is an expert in the cancer treatment he or she is offering.
1. Are you board certified? If yes, in what area?
2. How many patients like me have you treated?
3. How many procedures like the one you’re suggesting have you done?
4. Is this treatment a major part of your practice?
5. How many of your patients have had complications?
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5
Making treatment decisions
Weighing your options
Weighing your options
Deciding which option is best can be hard. Doctors
from different fields of medicine may have different
opinions on which option is best for you. This can be
very confusing. Your spouse or partner may disagree
with which option you want. This can be stressful. In
some cases, one option hasn’t been shown to work
better than another, so science isn’t helpful. Some
ways to decide on treatment are discussed next.
2nd opinion
very important decision. It can affect your length and
quality of life.
The time around a cancer diagnosis is very stressful.
People with cancer often want to get treated as soon
as possible. They want to make their cancer go
away before it spreads farther. While cancer can’t be
ignored, there is time to think about and choose which
option is best for you.
Support groups
Besides talking to health experts, it may help to talk
to patients who have walked in your shoes. Support
groups often consist of people at different stages of
treatment. Some may be in the process of deciding
while others may be finished with treatment. At
support groups, you can ask questions and hear
about the experiences of other people with follicular
lymphoma.
You may wish to have another doctor review your test
results and suggest a treatment plan. This is called
getting a 2nd opinion. You may completely trust your
doctor, but a 2nd opinion on which option is best can
help.
Compare benefits and downsides
Copies of the pathology report, a DVD of the imaging
tests, and other test results need to be sent to the
doctor giving the 2nd opinion. Some people feel
uneasy asking for copies from their doctors. However,
a 2nd opinion is a normal part of cancer care.
Every option has benefits and downsides. Consider
these when deciding which option is best for you.
Talking to others can help identify benefits and
downsides you haven’t thought of. Scoring each
factor from 0 to 10 can also help since some factors
may be more important to you than others.
When doctors have cancer, most will talk with more
than one doctor before choosing their treatment.
What’s more, some health plans require a 2nd opinion.
If your health plan doesn’t cover the cost of a 2nd
opinion, you have the choice of paying for it yourself.
If the two opinions are the same, you may feel more
at peace about the treatment you accept to have.
If the two opinions differ, think about getting a 3rd
opinion. A 3rd opinion may help you decide between
your options. Choosing your cancer treatment is a
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5
Making treatment decisions
Weighing your options
My notes
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Genetic
Websites
counseling
| Review
| Treatment
1.1 H1 Here
Websites
Review
American Cancer Society
• Shared decision-making is a process in which
you and your doctors plan treatment together.
Body text here.
cancer.org/cancer/non-hodgkinlymphoma/
detailedguide/index
• Asking your doctors questions is vital to
getting the information you need to make
informed decisions.
National Coalition for Cancer Survivorship
www.canceradvocacy.org/toolbox
• Getting a 2nd opinion, attending support
groups, and comparing benefits and
downsides may help you decide which
treatment is best for you.
National Cancer Institute
cancer.gov/types/lymphoma
NCCN
nccn.org/patients
The Leukemia & Lymphoma Society (LLS)
LLS.org/informationspecialists
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Glossary
Dictionary
Acronyms
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GlossaryDictionary
Dictionary
allogeneic stem cell transplant
A cancer treatment that replaces blood stem cells with donor
stem cells, which in turn make a new immune system and
attack the lymphoma.
cancer grade
Ratings of tumors that suggest how quickly the cancer cells
will grow.
cancer stage
Ratings of tumors that suggest the outlook of the disease.
anesthesia
Loss of feeling with or without loss of wakefulness that is
caused by drugs.
centroblast
A B-cell that quickly multiples within the germinal center of
lymph organs.
antibody
A protein made by white blood cells that helps fight off
infection. Also called an immunoglobulin.
centrocyte
A B-cell that undergoes normal changes to their germfighting ability within the germinal center of lymph organs.
antigen
Any substance that activates the immune system.
chemotherapy
Drugs that stop the life cycle of cells so they don’t increase in
number.
autologous stem cell transplant
A cancer treatment that destroys cancer cells with high
doses of chemotherapy then rebuilds destroyed bone
marrow with your own healthy blood stem cells. Also called
an HDT/ASCR (high-dose therapy with autologous stem cell
rescue).
chromosome
Strands of genetic material inside of cells.
B-cell
One of three types of a white blood cell called a lymphocyte.
chyle
A fatty liquid absorbed from the gut into the lymphatic
system.
B symptoms
Fevers, heavy night sweats, and weight loss without dieting
caused by B-cell cancers.
clinical trial
Research on a test or treatment to assess its safety or how
well it works.
beta-2 microglobulin
A small protein made by many types of cells.
complete blood count (CBC)
A test of the number of blood cells in a sample.
biopsy
Removal of small amounts of tissue or fluid to be tested for
disease.
comprehensive metabolic panel
Tests of up to 14 chemicals in your blood.
computed tomography (CT)
A test that uses x-rays to view body parts.
bone marrow
Soft, sponge-like tissue in the center of most bones where
blood cells are made.
consolidation treatment
Extra treatment given to kill any remaining cancer cells.
bone marrow aspiration
Removal of a small amount of bone marrow that is liquid to
test for disease.
contrast
A dye put into your body to make clearer pictures during
imaging tests.
bone marrow biopsy
Removal of a small amount of solid bone and bone marrow
to test for disease.
deoxyribonucleic acid (DNA)
A chain of chemicals inside cells that contains coded
instructions for making and controlling cells.
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GlossaryDictionary
diagnose
To identify a disease.
differential
Measurement of the different types of white blood cells
present in a blood sample.
image-guided radiation therapy (IGRT)
Radiation therapy that uses imaging tests during treatment to
better target the tumor.
imaging test
A test that makes pictures (images) of the inside of the body.
echocardiogram
A test that uses sound waves to make pictures of the heart.
immune system
The body’s natural defense against infection.
external beam radiation therapy (EBRT)
Treatment with radiation that is delivered by a machine into
the body.
immunoglobulin
A protein made by white blood cells that helps fight off
infection. Also called an antibody.
fatigue
Severe tiredness despite getting enough sleep that limits
one’s ability to function.
immunohistochemistry (IHC)
A test of cancer cells to find specific cell traits involved in
abnormal cell growth.
fertility specialist
An expert who helps men and women have babies.
immunomodulator
A type of drug that modifies some parts of the body’s
disease-fighting system.
flow cytometry
A test that looks at certain substances on the surface of cells
to identify the type of cells present.
fluorescence in situ hybridization (FISH)
A lab test that uses special dyes to look for abnormal
chromosomes.
fluoroscopy
A test that uses x-rays to view body parts in real time.
four-dimensional computed tomography (4D-CT)
A CT scan that can show the movement of organs.
intensity-modulated radiation therapy (IMRT)
Radiation therapy that uses small beams of different
strengths based on the thickness of the tissue.
involved-site radiation therapy (ISRT)
Treatment with high-energy rays (radiation) that is delivered
to lymph nodes and nearby sites with cancer.
karyotype
A test that uses a microscope to examine a cell’s
chromosomes.
gene
Instructions in cells for making and controlling cells.
kinase inhibitor
Cancer treatment that stops the transfer of phosphates,
which blocks growth signals to cancer cells.
gene rearrangement
The fusion of parts from two genes that creates a new gene.
lactate dehydrogenase
A protein that helps to make energy in cells.
general anesthesia
A controlled loss of wakefulness from drugs.
liver
An organ that removes waste from the blood and helps to
digest food.
germinal center
A short-lived structure that forms within an lymphatic organ in
response to germs.
human leukocyte antigen (HLA) typing
A blood test that finds a person’s unique set of proteins on
cells.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
local anesthesia
A controlled loss of feeling in a small area of the body
caused by drugs.
lymph
A clear fluid containing white blood cells.
59
GlossaryDictionary
lymph node
Small groups of special disease-fighting cells located
throughout the body.
positron emission tomography/computed
tomography (PET/CT)
A test that uses radioactive material and x-rays to view the
shape and function of organs and tissues.
lymph vessel
Tube-shaped ducts that carry lymph throughout the body.
proton therapy
Radiation therapy that uses protons to treat a disease. Also
called hadron therapy.
lymphatic system
A network in the body that collects and transports a fluid
(lymph) and fights germs.
quantitative immunoglobulin
A test that measures the amount of different types of
antibodies in the blood.
lymphocyte
A type of white blood cell that helps protect the body from
illness.
radiation therapy
The use of radiation to treat cancer.
lymphoma
Cancer that begins in white blood cells called lymphocytes
that are within the lymphatic system.
radioimmunotherapy
A treatment that attaches to cancer cells then releases
radiation.
maintenance treatment
Extra treatment given to prolong the good effects of prior
treatment.
regional anesthesia
A type of drug used for short-term loss of feeling or
awareness in a part of the body without loss of wakefulness.
medical history
All health events and medications taken to date.
sedative
A drug that helps a person to relax or go to sleep.
monoclonal antibody
Man-made antibodies that attach to proteins on cancer cells.
serum protein electrophoresis (SPEP)
A test that measures how many types of antibodies are
present.
multi-gated acquisition (MUGA) scan
A test of the heart that uses radiation to make pictures.
side effect
An unplanned physical or emotional response to treatment.
natural killer (NK) cell
One of three types of a white blood cell called a lymphocyte.
spleen
An organ to the left of the stomach that helps protect the
body from disease.
observation
A period of testing for changes in cancer status while not
receiving a specific treatment.
stem cell transplant
A cancer treatment that destroys bone marrow then replaces
it by adding healthy blood stem cells.
pathologist
A doctor who’s an expert in testing cells to find disease.
performance status
A rating of one’s ability to do daily activities.
steroid
A drug used to reduce redness, swelling, and pain, but also
to kill cancer cells. Also known as a corticosteroid.
physical exam
A review of the body by a health expert for signs of disease.
supportive care
Treatment for the symptoms or health conditions caused by
cancer or cancer treatment.
positron emission tomography (PET)
A test that uses radioactive material to see the shape and
function of body parts.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
targeted therapy
Drugs that stop the growth process that is specific to cancer
cells.
60
GlossaryDictionary
T-cell
One of three types of a white blood cell called a lymphocyte.
three-dimensional conformal radiation therapy
(3D-CRT)
Radiation therapy that uses beams that match the shape of
the tumor.
thymus
A gland located behind the breastbone.
tonsil
A group of tissue within the throat that contains many white
blood cells called lymphocytes and fights germs that enter
the mouth and nose.
translocation
The switching of parts between two chromosomes.
tumor lysis syndrome
A condition that occurs when many cancer cells die very
quickly and release their contents into the blood, which can
damage the kidneys and other organs.
ultrasound
A test that uses sound waves to take pictures of the inside of
the body.
uric acid
A chemical that is made and released into the blood when
cells and other substances in the body break down.
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GlossaryAcronyms
Acronyms
3D-CRT
three-dimensional conformal radiation therapy
IMRT
intensity-modulated radiation therapy
4D-CT
four-dimensional computed tomography
ISRT
involved-site radiation therapy
CAM
complementary and alternative medicine
MUGA
multi-gated acquisition
CBC
complete blood count
NK cell
natural killer cell
CT
computed tomography
MRI
magnetic resonance imaging
DNA
deoxyribonucleic acid
PET
positron emission tomography
EBRT
external beam radiation therapy
PI3K
phosphoinositide 3-kinase delta
FDA
Food and Drug Administration
SPEP
serum protein electrophoresis
FISH
fluorescence in situ hybridization
TLS
tumor lysis syndrome
FNA
fine-needle aspiration
NCCN Abbreviations and Acronyms
GVHD
graft-versus-host disease
NCCN®
National Comprehensive Cancer Network®
GVT
graft-versus-tumor
NCCN Patient Guidelines
NCCN Guidelines for Patients®
HDT/ASCR
high-dose therapy with autologous stem cell rescue
NCCN Guidelines®
NCCN Clinical Practice Guidelines in Oncology®
HLA
human leukocyte antigen
IGRT
image-guided radiation therapy
IHC
immunohistochemistry
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
62
State Fundraising Notices
State Fundraising Notices
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NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
64
NCCN Panel Members
NCCN Panel Members for
Non Hodgkin Lymphoma
Andrew D. Zelenetz, MD, PhD/Chair
Memorial Sloan Kettering Cancer Center
Leo I. Gordon, MD/Co-Vice Chair
Nancy Lee Harris, MD
Massachusetts General Hospital
Cancer Center
Robert H. Lurie Comprehensive Cancer
Center of Northwestern University
Francisco Hernandez-Ilizaliturri, MD
William G. Wierda, MD, PhD/CoVice Chair
Richard T. Hoppe, MD
The University of Texas
MD Anderson Cancer Center
Jeremy S. Abramson, MD
Massachusetts General Hospital
Cancer Center
Ranjana H. Advani, MD
Stanford Cancer Institute
Roswell Park Cancer Institute
Stanford Cancer Institute
Steven M. Horwitz, MD
Nishitha Reddy, MD
Vanderbilt-Ingram Cancer Center
Erin Reid, MD
UC San Diego Moores Cancer Center
Kenneth Roberts, MD
Yale Cancer Center/Smilow Cancer Hospital
Ayman A. Saad, MD
Memorial Sloan Kettering Cancer Center
University of Alabama at Birmingham
Comprehensive Cancer Center
Mark S. Kaminski, MD
Lubomir Sokol, MD, PhD
University of Michigan
Comprehensive Cancer Center
Christopher R. Kelsey, MD
Moffitt Cancer Center
Lode J. Swinnen, MB, ChB
Duke Cancer Institute
The Sidney Kimmel Comprehensive
Cancer Center at Johns Hopkins
UCSF Helen Diller Family
Comprehensive Cancer Center
Youn H. Kim, MD
Julie M. Vose, MD, MBA
Nancy Bartlett, MD
Susan Krivacic, MPAff
Lynn Wilson, MD, MPH
Ann S. LaCasce, MD
Joachim Yahalom, MD
C. Babis Andreadis, MD, MSCE
Siteman Cancer Center at BarnesJewish Hospital and Washington
University School of Medicine
John C. Byrd, MD
The Ohio State University Comprehensive
Cancer Center - James Cancer Hospital
and Solove Research Institute
Luis E. Fayad, MD
The University of Texas
MD Anderson Cancer Center
Richard I. Fisher, MD
Fox Chase Cancer Center
Martha J. Glenn, MD
Huntsman Cancer Institute
at the University of Utah
Thomas M. Habermann, MD
Mayo Clinic Cancer Center
Stanford Cancer Institute
Patient Advocate
Dana-Farber/Brigham and
Women’s Cancer Center
Matthew Lunning, DO
Fred & Pamela Buffett Cancer Center
Auayporn Nademanee, MD
City of Hope Comprehensive Cancer Center
Pierluigi Porcu, MD
The Ohio State University Comprehensive
Cancer Center - James Cancer Hospital
and Solove Research Institute
Oliver Press, MD, PhD
Fred Hutchinson Cancer Research Center/
Seattle Cancer Care Alliance
Rachel Rabinovitch, MD
University of Colorado Cancer Center
For disclosures, visit www.nccn.org/about/disclosure.aspx.
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
65
Fred & Pamela Buffett Cancer Center
Yale Cancer Center/Smilow Cancer Hospital
Memorial Sloan Kettering Cancer Center
Nadeem Zafar, MD
St. Jude Children’s Research Hospital/
University of Tennessee
Health Science Center
NCCN Member Institutions
NCCN Member Institutions
Fred & Pamela Buffett Cancer Center
Omaha, Nebraska
800.999.5465
nebraskamed.com/cancer
Case Comprehensive Cancer Center/
University Hospitals Seidman
Cancer Center and Cleveland Clinic
Taussig Cancer Institute
Cleveland, Ohio
800.641.2422 • UH Seidman Cancer Center
uhhospitals.org/seidman
866.223.8100 • CC Taussig Cancer Institute
my.clevelandclinic.org/services/cancer
216.844.8797 • Case CCC
case.edu/cancer
City of Hope Comprehensive
Cancer Center
Los Angeles, California
800.826.4673
cityofhope.org
Dana-Farber/Brigham and
Women’s Cancer Center
Massachusetts General Hospital
Cancer Center
Boston, Massachusetts
877.332.4294
dfbwcc.org
massgeneral.org/cancer
The Sidney Kimmel Comprehensive
Cancer Center at Johns Hopkins
Baltimore, Maryland
410.955.8964
hopkinskimmelcancercenter.org
Robert H. Lurie Comprehensive
Cancer Center of Northwestern
University
Chicago, Illinois
866.587.4322
cancer.northwestern.edu
Mayo Clinic Cancer Center
Phoenix/Scottsdale, Arizona
Jacksonville, Florida
Rochester, Minnesota
800.446.2279 • Arizona
904.953.0853 • Florida
507.538.3270 • Minnesota
mayoclinic.org/departments-centers/mayoclinic-cancer-center
Memorial Sloan Kettering Cancer
Center
New York, New York
800.525.2225
mskcc.org
Moffitt Cancer Center
Duke Cancer Institute
Tampa, Florida
800.456.3434
moffitt.org
Fox Chase Cancer Center
The Ohio State University
Comprehensive Cancer Center James Cancer Hospital and
Solove Research Institute
Durham, North Carolina
888.275.3853
dukecancerinstitute.org
Philadelphia, Pennsylvania
888.369.2427
foxchase.org
Huntsman Cancer Institute
at the University of Utah
Salt Lake City, Utah
877.585.0303
huntsmancancer.org
Fred Hutchinson Cancer
Research Center/
Seattle Cancer Care Alliance
Seattle, Washington
206.288.7222 • seattlecca.org
206.667.5000 • fredhutch.org
Columbus, Ohio
800.293.5066
cancer.osu.edu
Stanford, California
877.668.7535
cancer.stanford.edu
University of Alabama at Birmingham
Comprehensive Cancer Center
Birmingham, Alabama
800.822.0933
www3.ccc.uab.edu
UC San Diego Moores Cancer Center
La Jolla, California
858.657.7000
cancer.ucsd.edu
UCSF Helen Diller Family
Comprehensive Cancer Center
San Francisco, California
800.689.8273
cancer.ucsf.edu
University of Colorado Cancer Center
Aurora, Colorado
720.848.0300
coloradocancercenter.org
University of Michigan
Comprehensive Cancer Center
Ann Arbor, Michigan
800.865.1125
mcancer.org
The University of Texas
MD Anderson Cancer Center
Houston, Texas
800.392.1611
mdanderson.org
Vanderbilt-Ingram Cancer Center
Roswell Park Cancer Institute
Buffalo, New York
877.275.7724
roswellpark.org
Nashville, Tennessee
800.811.8480
vicc.org
University of Wisconsin
Carbone Cancer Center
Siteman Cancer Center at BarnesJewish Hospital and Washington
University School of Medicine
St. Louis, Missouri
800.600.3606
siteman.wustl.edu
St. Jude Children’s Research Hospital/
The University of Tennessee
Health Science Center
Memphis, Tennessee
888.226.4343 • stjude.org
901.683.0055 • westclinic.com
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
Stanford Cancer Institute
66
Madison, Wisconsin
608.265.1700
uwhealth.org/cancer
Yale Cancer Center/
Smilow Cancer Hospital
New Haven, Connecticut
855.4.SMILOW
yalecancercenter.org
Notes
My notes
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
67
Index
Index
biopsy 10, 19, 41, 43
stem cell transplant 32, 44–45
blood tests 16–18
steroids 27
cancer grade 10
supportive care 31, 39
chemotherapy 25–26, 28, 32–33, 40–43
targeted therapy 28–29
clinical trial 35, 41–43, 45, 51
complementary and alternative medicine 34
complete blood count 15–16, 40, 42
comprehensive metabolic panel 15–16
computed tomography 15, 18, 41, 43
consolidation treatment 39, 43, 45
diagnosis 10–11
fertility 20
immunohistochemistry 10
immunomodulators 27
involved-site radiation therapy 30–31, 40–41
lymphatic system 6
lymphocyte 7
lymphoma 8
maintenance treatment 39, 43, 45
medical history 14–15, 40–43
NCCN member institutions 66
NCCN panel members 65
observation 40–45
pathology report 10
physical exam 15, 40–43
positron emission tomography/computed
tomography 15, 18, 41, 43
radiation therapy 30, 40–45
radioimmunotherapy 29
NCCN Guidelines for Patients®
Follicular Lymphoma, Version 1.2016
68
Ü
NCCN Guidelines for Patients®
NCCN Non-HodGkin’s LymphomaS Series
Follicular Lymphoma
Grade 1–2
Version 1.2016
NCCN Foundation® gratefully acknowledges our advocacy supporter, Leukemia & Lymphoma Society, and our industry supporters
Gilead Sciences, Pharmacyclics, LLC an AbbVie Company, Teva Pharmaceuticals, and Pfizer, Inc. for their support in making available
these NCCN Guidelines for Patients®. NCCN independently develops and distributes the NCCN Guidelines for Patients. Our industry
supporters do not participate in the development of the NCCN Guidelines for Patients and are not responsible for the content and
recommendations contained therein.
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