Chronic Lymphocytic Leukemia: NCCN Guidelines For Patients

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NCCN Guidelines for Patients Version 1.2016
Chronic
Lymphocytic
Leukemia
Available online at NCCN.org/patients

NCCN Guidelines for Patients Version 1.2016
Chronic Lymphocytic
Leukemia (CLL)
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 chronic lymphocytic leukemia.
The National Comprehensive Cancer Network (NCCN) is a not-for-profit

alliance of 26 of the worlds leading cancer centers. Experts from NCCN have
written treatment guidelines for doctors who treat leukemias. 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 chronic lymphocytic leukemia. Key

points of the book are summarized in the NCCN Quick Guide series on
chronic lymphocytic leukemia. NCCN also offers patient resources on acute
lymphoblastic leukemia, chronic myelogenous leukemia, multiple myeloma,
and other cancer types. Visit NCCN.org/patients for the full library of patient
books, summaries, and other resources.
NCCN Guidelines for Patients

1
Chronic Lymphocytic Leukemia, Version 1.2016
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 NCCN Marketing

Dorothy A. Shead, MS, Director Mary Dwyer, MS Susan Kidney, Graphic Design Specialist
Patient and Clinical Information Operations Clinical Coordinator
Laura J. Hanisch, PsyD, Medical Writer/ Hema Sundar, PhD
Patient Information Specialist Oncology Scientist/Senior Medical Writer
Lacey Marlow Rachael Clarke
Associate Medical Writer Guidelines Data and Layout Coordinator
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 chronic lymphocytic leukemia.
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

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Contents
Chronic Lymphocytic
Leukemia (CLL)
4 How to use this book 67 Glossary:
68 Dictionary
5 Part 1 72 Acronyms
CLL basics
Explains how and where this cancer starts. 75 NCCN Panel Members
13 Part 2 76 NCCN Member Institutions
Treatment planning
Describes how doctors plan your 78 Index
treatment.
25 Part 3
Overview of cancer
treatment
Describes the treatments used to cure or
control CLL.
37 Part 4
Treatment guide
Presents treatment options based on your
health and age as well as features of the
cancer. Supportive care is also addressed.
57 Part 5
Making treatment decisions
Offers tips for choosing the best treatment.

3
How to use this book
Who should read this book? They can also give you more information. As you
read through this book, you may find it helpful to
The information in this book is about treatment make a list of questions to ask your doctors.
of chronic lymphocytic leukemia. It is the most
common type of leukemia in adults. It does The recommendations in this book are based on
not address treatment for small lymphocytic science and the experience of NCCN experts.
leukemia. Patients and those who support However, these recommendations may not be
themcaregivers, family, and friendsmay find right for you. Your doctors may suggest other
this book helpful. It may help you discuss and tests and treatments based on your health and
decide with doctors what care is best. other factors. If other suggestions 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 chronic lymphocytic leukemia is. Knowing In this book, many medical words are included.
more about this cancer may help you better These are words that you will likely hear from
understand its treatment. 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 Dont be discouraged as you read. Keep reading
other care are needed before treatment. Part 3 and review the information. Dont be shy to ask
briefly describes all the types of treatments. Part your treatment team to explain a word or phrase
4 explains which treatments are options for you that you do not understand.
and describes supportive care. Tips for making
treatment decisions are presented in Part 5. 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.
Does the whole book Acronyms are also defined when first used
apply to me? and in the Glossary. Acronyms are short words
formed from the first letters of several words.
This book includes information for many One example is CLL for chronic lymphocytic
situations. Your treatment team can help. They leukemia.
can point out what information applies to you.

4
1
CLL basics

5
1 CLL basics
7 What are lymphocytes?
8 What is CLL?
10 Do I have CLL?
12 Review
Youve learned that you have or may

have chronic lymphocytic leukemia.
Its common to feel shocked and
confused. Part 1 reviews some basics
about this leukemia that may help
you learn about it and start to cope.
These basics may also help you start
planning for treatment.

6
1 CLL basics What are lymphocytes?
What are lymphocytes? T-cells alert your body that germs are present, kill
diseased cells, and help B-cells.
There are many types of blood cells. Three main
types are platelets, red blood cells, and white blood Most blood cells are made in bone marrow. See
cells. Each type has a different job. Platelets help Figure 1.1. Bone marrow is the soft tissue in the
control bleeding. Red blood cells carry oxygen center of most bones. Blood cells leave bone marrow
throughout the body. White blood cells help fight and travel in blood throughout your body.
germs. They are a part of your bodys disease-fighting
(immune) system. There are many lymphocytes in bone marrow, blood,
and your lymphatic system. Your lymphatic system
Lymphocytes are a type of white blood cell and consists of fluid, called lymph, and a network of
include NK (natural killer) cells, B-cells, and T-cells. tissues. Lymph travels in lymph vessels and passes
NK cells release chemicals that kill diseased cells. through lymph nodes, which filter out germs and
B-cells make antibodies that mark germs for killing. waste. Other organs of the lymphatic system include
your thymus, spleen, and tonsils.
Figure 1.1
Blood cells in bone marrow
Most blood cells are first formed in the marrow of bones. Red blood cells, white blood cells, and
platelets are the three main types of blood cells. Lymphocytes are a type of white blood cell. They
help fight illness in your body.
Illustration Copyright 2015 Nucleus Medical Media, All rights reserved. www.nucleusinc.com

7
1 CLL basics What is CLL?
What is CLL? SLL are thought to be the same cancer but differ
in the fact that people with SLL do not have high
Cancer is a disease of cells. Leukemias are cancers numbers of white blood cells. Their treatment is much
of white blood cells and start in bone marrow and alike. The focus of this book is CLL. CLL occurs
blood. CLL (chronic lymphocytic leukemia) is one mostly in people who are middle aged or older.
type of leukemia that starts in lymphocytes called
B-cells. Lymphomas are cancers that start in Inside of cells are coded instructions for building
lymphocytes within the lymphatic system. However, new cells and controlling how cells behave. These
leukemias can spread to the lymphatic system, and instructions are called genes. Genes are a part
lymphomas, to bone and bone marrow. of DNA (deoxyribonucleic acid), which is grouped
together into bundles called chromosomes. See
CLL cells are found mostly within blood, bone marrow, Figure 1.2. Changes (mutations) in genes cause
and lymph nodes. Related, SLL (small lymphocytic normal B-cells to become cancer cells. Researchers
leukemia) is a cancer that also starts in B-cells but are still trying to learn what causes genes to change
occurs mostly within the lymphatic system. CLL and and cause cancer.
Figure 1.2
Genetic material in cells
Most human cells contain the blueprint of lifethe 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.

8
1 CLL basics What is CLL?
Changes in genes 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 arent needed and dont die quickly when old or
damaged.
CLL can be a fast- or slow-growing cancer. Often, it

grows slowly. If slow, you may not know you have CLL
for years because you have no symptoms. Over time,
CLL cells will crowd out healthy cells in bone marrow.
A normal number of red blood cells and platelets will
not be made. As a result, you may feel tired, lose
weight, and get sick easily. CLL may also spread to
your lymph nodes, liver, and spleen, and cause these
organs to enlarge.
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.

9
1 CLL basics Do I have CLL?
Do I have CLL? can be used to count B-cells, confirm clonality, and

do immunophenotyping. This method involves first
Your blood needs to be tested to confirm (diagnose) adding a markera light-sensitive dyeto cells.
CLL. Often, CLL is diagnosed during a routine blood Then, your blood will be passed through a flow
test that is part of your normal health care. For a cytometry machine. The machine measures surface
blood test, your doctor will insert a needle into your proteins on thousands of cells. Flow cytometry is
vein to remove a sample of blood. The needle may commonly used to diagnose CLL.
bruise your skin and you may feel dizzy from the
blood draw. Your blood sample will then be sent to a When being tested for CLL, mantle cell lymphoma
lab where a pathologist will test it. A pathologist is a needs to be ruled out. This cancer has high levels of
doctor whos an expert in testing cells to find disease. the protein called cyclin D1. There is too much cyclin
The number of abnormal B-cells in your blood must

be known for diagnosis. CLL requires the presence of
at least 5,000 abnormal B-cells per microliter of blood
(5 x 109/L). The B-cells have to be copies of the same Figure 1.4 CD20 protein
parent cell. This is called monoclonality.
CLL cells have a common pattern of proteins in their
For diagnosis, B-cells should also be tested for which membrane. This pattern includes the presence of
CD5, CD19, and CD23 proteins, some CD20, and no
proteins are in the cells surface (membrane). See CD10 proteins. Immunophenotyping is the process
Figure 1.4. This is called immunophenotyping. CLL of identifying the proteins in cells membranes.
cells typically have either kappa or lambda light chain
proteins but not both. Light chain proteins are part of
antibodies, which help to kill germs. CLL cells also
typically have CD5, CD19, and CD23 proteins, some
CD20, and no CD10 proteins.
If there are fewer than 5,000 monoclonal B-cells, no

enlarged lymph nodes, and no other signs of CLL,
you may have MBL (monoclonal B-lymphocytosis).
BML is common, especially among older adults. It is
not cancer and very few people with BML develop
CLL. The recommended care for BML is observation.
Observation or watch-and wait is a period of testing
to watch for changes in status. Some people wont
need treatment for years if at all.
A common test of cells is IHC (immunohisto-

chemistry). This method involves applying a
Derivative work of Rituximab Binding to CD20 on a B Cell Surface
chemical marker to cells and looking at them with a by NIAID available at commons.wikimedia.org/wiki/
File:Rituxima_Binding_to_CD20_on_a_B_Cell_Surface_
microscope. Flow cytometry is a newer method by (6830897205).jpg under a Creative Commons Attribution 2.0
which some cell tests can be done. Flow cytometry Generic license

10
1 CLL basics Do I have CLL?
D1 because of abnormal chromosomes in cells. To

rule out mantle cell lymphoma, your blood may be
tested with a cytospin machine for cyclin D1. Another
test option is FISH (fluorescence in situ hybridization)
to test for abnormal chromosomes.
Most often, flow cytometry on a blood sample can

be used to diagnosis CLL. However, for some
people, another method is needed. In these cases,
a biopsy of your lymph nodes is advised. A biopsy
removes tissue samples to test for cancer. You will
need anesthesia to numb the site. Then, part or all
of one or more lymph nodes will be removed through
a cut made in your skin. B-cells from the removed
nodes will be tested with an IHC panel for the
immunophenotype. The panel should include testing
for CD3, CD5, CD10, CD20, CD23, and cyclin D1
proteins.

11
1 CLL basics Review
Review
White blood cells are a part of your bodys Your blood needs to be tested to diagnose
immune system. Lymphocytes are a type of CLL. To diagnose, doctors look for very high
white blood cell and include NK cells, B-cells, numbers of abnormal B-cells. They also look
and T-cells. for proteins that are common and uncommon
to CLL cells.
Leukemias are cancers of white blood cells
and start in bone marrow and blood. CLL is
one type of leukemia that starts in B-cells.

12
2
Treatment planning

13
2 Treatment planning
14 Medical history
15 Physical exam
16 Blood tests
20 Imaging tests
21 Bone and marrow test
22 Heart tests
22 Fertility and pregnancy
23 Starting treatment
24 Review
Doctors plan treatment with many Medical history

sources of information. One of these Your medical history includes any health events and
sources is tests of your health and the medicines youve taken in your life. You will be asked
about illnesses, injuries, health conditions, and more.
cancer. Part 2 describes who should
Some health problems run in families. Thus, your
receive which tests before treatment. doctor may also ask about the health of your blood
Some of these tests are repeated relatives.
during and after treatment. Some signs and symptoms of CLL are enlarged
lymph nodes, tiredness, a feeling of fullness in your
belly, and getting sick. CLL may also cause
Besides tests, Part 2 describes other
B symptoms. Its important that your doctor knows
types of care that are important to if you have them. These symptoms include fevers,
receive before cancer treatment. chills, night sweats, and weight loss without dieting.
Everyone does not need to start CLL A medical history is one of the tests needed for
treatment right away. Part 2 ends with treatment planning. See Chart 2.1 for a complete list
of care that is recommended prior to treatment. Some
explaining how doctors decide when
types of care are for anyone with CLL while others
treatment should be started. may be useful for some people.

14
2 Treatment planning Physical exam
Physical exam nodes, so areas with lots of lymph nodes should be

examined. High numbers of lymph nodes exist in
Doctors often give a physical exam along with taking the middle of your chest, neck, throat, armpit, groin,
a medical history. A physical exam is a study of your pelvis, and along your gut. The size of your spleen
body for signs of disease. During this exam, your and liver should also be assessed.
doctor will listen to your lungs, heart, and gut. Parts
of your body will likely be felt to see if organs are of Results of your medical history and physical exam
normal size, are soft or hard, or cause pain when will be used to rate your performance status.
touched. Performance status is your ability to do daily
activities. It is used by doctors to assess if you can
For CLL, there are certain parts of your body that undergo certain treatments.
should be checked. CLL is often found in lymph
Chart 2.1 Care before treatment
Must haves Sometimes useful
Medical history Quantitative immunoglobulins
Physical exam Haptoglobin
FISH for chromosomes 11, 12, 13, and 17 Reticulocyte count and direct Coombs test
Karyotype Beta-2 microglobulin
DNA sequencing for IGHV and TP53 Lactate dehydrogenase
CD38 and ZAP-70 tests Uric acid
Complete blood count with differential CT scan
Comprehensive metabolic panel PET scan
Hepatitis B testing Bone marrow biopsy aspiration
Echocardiogram or MUGA Fertility support
Pregnancy test if you can have babies

15
2 Treatment planning Blood tests
Blood tests A complex karyotype is linked to a poorer prognosis.

A complex karyotype is when there are 3 or more
Blood tests are used to diagnose CLL as discussed unrelated defects in chromosomes that occur in more
in Part 1. They are also used for at least three other than one cell. The presence of a complex karyotype
reasons. First, blood tests can be used to know the may affect your treatment options. Read Part 4 for
outlook (prognosis) of CLL. Prognosis is a prediction more information.
of the pattern and outcome of a disease. Second,
some blood tests are used to know the extent (stage) DNA sequencing. DNA sequencing is a lab test of
of cancer. How staging is related to starting treatment blood or marrow that is used to look for mutations in
is discussed at the end of this chapter. Third, blood genes. This test reveals the order of the chemicals
tests can help to find other diseases including those that make up DNA. DNA sequencing is used to test
related to CLL. Its important to treat all illnesses. for mutations in the IGHV (immunoglobulin heavy-
Blood tests for CLL are: chain variable) region and TP53 genes.
Genetic tests Immunoglobulins are Y-shaped proteins that help fight

FISH test. It is very common for CLL cells to have germs. In Part 1, they were described by their other
abnormal chromosomes. In CLL cells, chromosomes nameantibodies. Normal antibodies are made of
that commonly have defects include chromosomes two heavy chain proteins and two light chain proteins.
11, 12, 13, and 17. FISH is a test that is used to See Figure 2.1. IGHV region genes in B-cells contain
search for abnormal chromosomes and genes. instructions for making the heavy chain protein.
These genes may or may not be mutated in people
FISH is sometimes used for diagnosis as described with CLL. Prognosis is good if IGHV is mutated.
in Part 1 but also for prognosis. It can be done using
either blood or bone marrow cells. It is a helpful test TP53 is the gene that makes a protein that signals
but not essential for treatment planning. for either the repair or destruction of damaged cells.
Thus, it helps to prevent tumors from forming. DNA
Missing (deleted) parts of chromosomes 11 or 17 are sequencing can be used to learn if this gene is
signs of a poor prognosis. A good prognosis is linked mutated. If mutated, prognosis is poor.
to deleted parts of chromosome 13, if it is the only
abnormal chromosome. Trisomy is when there are Cell protein tests
three copies of a chromosome in a cell instead of the To help decide prognosis, lab tests are done to look
normal two. Trisomy 12 is linked to neither a poor or for specific proteins in CLL cells. These proteins are
good prognosis. CD38 and ZAP-70. They are related to the IGHV
mutation. The presence of increased levels of either
Karyotype. A karyotype is a picture of the CD38 or ZAP-70 is a sign of a fast-growing cancer.
chromosomes in cells. It shows if there is a defect
in the size, shape, and number of chromosomes. Flow cytometry, IHC, or methylation analysis can be
A blood or bone marrow sample can be used. used to test for ZAP-70 status. Methylation analysis
Chemicals are added to the sample to start cell is the study of chemical tags, called methyl groups,
growth. For CLL, a chemical called CPG should be which attach to DNA. It is not a commonly used test
used. outside of a clinical trial. Likewise, testing for ZAP-70

16
protein is a challenge and should only be done within It is also used to stage the cancer and check if
a clinical trial. It is not an essential test for CLL. treatment is working.
Complete blood count with differential Comprehensive metabolic panel

A CBC (complete blood count) measures the number Chemicals in your blood come from your liver, bone,
of blood cells in a blood sample. It includes numbers and other organs. A comprehensive metabolic panel
of white blood cells, red blood cells, and platelets. often includes tests for up to 14 chemicals. The tests
Your blood counts may be low or high because of show if the level of chemicals are too low or high.
cancer or another health problem. It is an essential Abnormal levels can be caused by cancer or other
test that gives a picture of your overall health. health problems.
There are several types of white blood cells in your Hepatitis B testing
body. A white cell differential counts the number of CLL and some of its treatments can cause the
each type. It also checks if the counts are in balance hepatitis B virus to become active again. Thus, tell
with each other. Your doctor can learn from this test your treatment team if youve ever been infected with
what the cause of an abnormal white blood count is. hepatitis B. For others, ask your treatment team if you
should get tested.
Figure 2.1 Immunoglobulin (A.K.A antibody)
Antibodies attach to germs so your immune system can find and destroy the germs. Normal
antibodies are Y-shaped proteins made of two heavy chain proteins and two light chain proteins.
Within CLL cells, the genes for making the heavy chain protein sometimes arent normal.

17
Quantitative immunoglobulins red blood cells. Low numbers of reticulocytes is a sign

There are three major types of antibodies in blood. of pure red cell aplasia, and high numbers indicate
They are IgG, IgA, and IgM. Your blood can be tested hemolysis. The other test is a direct Coombs test.
to measure the amount of each type of antibody. This test can detect if antibodies are stuck to and
Testing will show if the level of any type of antibody is killing red blood cells.
abnormaltoo high or too low.
Beta-2 microglobulin
Some people with CLL have low levels of antibodies Beta-2 microglobulin is a small protein made by many
before cancer treatment. They may be sick often. types of cells, including CLL cells. It is measured with
Testing of antibodies can help your doctors know if a blood chemistry test. High levels of this protein may
you need treatment to prevent or cure an infection. be a sign of CLL that is harder to treat.
Haptoglobin Lactate dehydrogenase

Haptoglobin is a protein made by the liver. It attaches Lactate dehydrogenase is a protein that is in most
to free hemoglobin in blood to mark it for removal. cells. It gets into your blood when a cell is damaged.
Free hemoglobin is a protein with iron that was Thus, a high level of lactate dehydrogenase is a sign
released from destroyed red blood cells. of cell damage. High levels can be caused by cancer
or other health problems. If related to cancer, high
Low amounts of haptoglobin can be a result of levels may be a sign that treatment may be needed
autoimmune hemolytic anemia. Autoimmune now or soon.
hemolytic anemia is when your body mistakes
red blood cells for invaders and destroys them. Uric acid
Haptoglobin level is one of the tests needed to Some people with CLL are at risk for tumor lysis
confirm autoimmune hemolytic anemia. syndrome. This syndrome can be life threatening. It
occurs when the waste released by dead cells is not
Autoimmune hemolytic anemia is common among quickly cleared out of your body. This results in kidney
people with CLL. Advanced CLL and some of its damage and severe blood electrolyte disturbances.
treatments can cause it. A cancer treatment called
fludarabine should not be used if you have severe Tumor lysis syndrome can occur among people with
autoimmune hemolytic anemia. CLL who are undergoing strong cancer treatments.
The cancer treatment kills many cancer cells and
Reticulocyte count and direct Coombs test results in too much waste.
Low numbers of healthy red blood cells is called
anemia. There are many causes of anemia. Two Your doctors may want to know your uric acid levels
of the many causes are pure red cell aplasia and before starting treatment. You may be given certain
hemolysis. Pure red cell aplasia is when the early medications that can help prevent tumor lysis
(precursor) cells that form into red blood cells are syndrome. Also, drinking plenty of water throughout
almost absent in bone marrow. Hemolysis is when red chemotherapy can help. Ask your treatment team for
blood cells are being destroyed too early. more information.
If you have anemia, you should be tested for these

causes. Reticulocytes are precursor cells of mature

18
My notes

19
2 Treatment planning Imaging tests
Imaging tests belly area, and between your hip bones is advised.
CT scans received during treatment can help your
Imaging tests make pictures (images) of the inside doctors know if treatment is working.
of your body. They can show where cancer is.
Depending on the test, you may need to stop taking PET/CT scan
some medicines and stop eating and drinking for a few CT is sometimes done along with another imaging
hours before the scan. If you are nervous, you may be test called PET (positron emission tomography).
given a drug, called a sedative, to help you relax. For PET, a sugar radiotracer will be injected into
Imaging machines are large. You will likely be lying

down during testing. At least part of your body will
be in the machine. Figure 2.2 shows a CT machine,
Figure 2.2 Computed tomography machine
which is described next.
A CT machine is large and has a tunnel in the middle.
After the test, you will likely be able to resume your During the test, you will lie on a table that moves
activities right away. If you took a sedative, you will slowly through the tunnel.
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 whos an expert
in reading the images.
CT scan
CT (computed tomography) may be needed before
starting and during treatment. 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 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
bad reactions to contrast. Also, tell them if you get
nervous when in small spaces. You may be given a
sedative to help you relax.
CT is needed if you have symptoms suggesting your

lymph nodes are large. If needed, a CT of your chest,

20
2 Treatment planning Bone and marrow test
your body. The radiotracer is detected with a special Bone and marrow test
camera. Cancer cells appear brighter than normal
cells because they use sugar (glucose) more quickly. A bone marrow biopsy removes a sample of bone and
soft bone marrow. A bone marrow aspiration removes
PET/CT is often not useful for CLL. If given, it is used a small amount of liquid bone marrow. These tests
to help direct a needle into a lymph node for a biopsy. arent needed to diagnose CLL. However, your doctor
Your lymph nodes may be tested if your doctor thinks may order these tests to learn whats causing low
that CLL is turning into a fast-growing cancer like numbers of blood cells.
diffuse large B-cell lymphoma. PET/CT is an essential
test for this cancer. 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 2.3. Your doctor will clean your skin
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.
Figure 2.1 Bone marrow biopsy
Doctors use a bone marrow biopsy to remove a sample of bone and marrow for testing. A bone
marrow aspiration removes a small amount of liquid bone marrow.

21
2 Treatment planning Heart tests | Fertility and pregnancy
Heart tests Fertility and pregnancy

Some cancer treatments can damage your heart. Some cancer treatments can limit your ability to have
Thus, your doctor may test how well your heart works a baby. If you want the choice of having babies after
to plan treatment. If it isnt working well, you may treatment or are unsure, tell your doctors. It may also
receive other treatment. help to talk with a fertility specialist before you begin
cancer treatment. A fertility specialist is an expert in
An echocardiogram is an imaging test of your heart. helping people have babies. The fertility specialist
It uses sound waves (ultrasound) to make pictures. can discuss with you how to have a baby after
During this test, you will be lying down. Small patches treatment. Some methods of fertility preservation are
will be placed on your chest to track your heartbeat. discussed next. If you are a woman of childbearing
Next, a probe with gel on its tip will be slid across part age, important information on pregnancy is also
of your bare chest. A picture of your beating heart addressed.
will be seen at once on a screen. The pictures are
recorded for future viewing. Sperm banking
Men who want to father children after cancer
A MUGA (multi-gated acquisition) scan measures treatment can use sperm banking. Sperm banking
how well your heart is pumping blood. For this test, stores semen for later use. This is done by freezing
patches will be placed on your chest to track your semen with sperm in liquid nitrogen. Talk to your
heartbeat. Also, a radiotracer will be injected into your treatment team about the costs of and how well
vein. Pictures of your heart are taken with a special sperm banking works.
camera that can detect the radiation released by the
tracer. Egg freezing and more
Like sperm banking, a womans 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.

22
2 Treatment planning Starting treatment
Starting treatment may be helpful for prognosis but isnt used in this
book to decide starting treatment.
Part of treatment planning involves deciding when to
start treatment. Not all people with CLL need to start If you have Rai stage 0, I, and II CLL, treatment may
treatment right away. Starting treatment is based on not be needed now. You should be further assessed
symptoms of CLL, test results, and the cancer stage. to learn if treatment is needed. Signs to start
The cancer stage is a rating by your doctors that treatment include symptoms of active CLL, such as
suggests what the prognosis of the cancer is. drenching night sweats, severe fatigue, fever without
proof of infection, and unplanned weight loss. If these
The Rai staging system is used to decide whether to signs are present, treatment is advised. If these signs
start treatment. This system consists of five cancer are not present, observation is advised. Treatment
stages. The cancer stages are defined by the results can be started when any the listed signs appear or
of your physical exam and blood tests. The five the cancer advances to stage III or IV.
stages are:
Most people with stage III or IV CLL need to be
Stage 0 is defined by normal test results treated, even when newly diagnosed. In some cases,
except for high number of lymphocytes in observation may be an option if your blood cell
blood. The likelihood of the cancer getting counts arent too low and dont drop more. Treatment
worse is low. is advised if the cancer is stage III and IV and your
blood cell counts are falling.
Stage I is defined as high number of
lymphocytes in blood and enlarged lymph
nodes. The likelihood of the cancer getting
worse is intermediate.
Stage II is defined by an enlarged liver,

spleen, or both. The likelihood of the cancer
getting worse is intermediate.
Stage III is defined by a low hemoglobin level.

The likelihood of the cancer getting worse is
high.
Stage IV is defined by a low platelet count.

The likelihood of the cancer getting worse is
high.
You may hear of the Binet staging system. It is

another system used to stage CLL. It has three
stages labeled A, B, and C. The stages are based on
your physical exam and blood tests. The Binet system

23
2 Treatment planning Review
Review
Tell your doctor if you have recently had An aspiration removes liquid marrow. These
fevers, night sweats, and weight loss without tests may be helpful before starting treatment.
dieting. These can be symptoms of CLL.
You may undergo heart tests to see if you
Your doctor will examine your body for signs are healthy enough to have certain cancer
of disease. He or she will check if your lymph treatments.
nodes, liver, or spleen is large. Your doctor will
Talk to a fertility specialist to learn about ways
also rate your ability to do everyday activities.
to have babies after cancer treatment. If you
Blood tests can be done to assess the may be pregnant now, get a pregnancy test
prognosis of CLL and for other health since some cancer treatments can harm
conditions. unborn babies.
Imaging tests allow your doctors to see inside You may not need to start treatment for CLL
your body without cutting into it. CT and right away. Your doctors will decide whether to
PET/CT scans may be useful in certain cases. advise starting treatment based on the signs
and symptoms of CLL, test results, and the
A bone marrow biopsy removes a piece of
cancer stage.
bone and marrow to test for cancer cells.

24
3
Overview of
cancer treatments

25
3 Overview of cancer
treatments
26 Clinical trials
28 Chemotherapy
30 Steroids
30 Immunomodulators
31 Targeted therapy
33 Stem cell transplant
36 Review
Clinical trials
In Part 3, the main treatment types
New tests and treatments arent offered to the
that are recommended by NCCN public as soon as theyre made. They first need to
experts for CLL are briefly described. be studied. A clinical trial is a type of research that
studies a test or treatment. Clinical trials are the
These treatments are for people who
preferred treatment option of NCCN experts for CLL.
have or will be starting treatment.
Knowing what a treatment is will Clinical trials study how safe and helpful tests and
treatments are. When found to be safe and helpful,
help you understand your treatment they may become tomorrows standard of care.
options listed in Part 4. There is more Because of clinical trials, the tests and treatments in
this book are now widely used to help people with
than one treatment for CLL. Not every
CLL. Future tests and treatments that may have
person with CLL will receive every better results than todays treatments will depend on
treatment described in this chapter. clinical trials.
New tests and treatments go through a series of

clinical trials to make sure theyre 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:

26
3 Overview of cancer treatments Clinical trials
Phase I trials aim to find the best dose of a responses to treatment. Also, new tests or treatments
new drug with the fewest side effects. may not help. Another downside may be that
paperwork or more trips to the hospital are needed.
Phase II trials assess if a drug works to
treat a specific type of cancer. To join a clinical trial, you must meet the conditions
of the study. Patients in a clinical trial are often alike
Phase III trials compare a new drug to the in terms of their cancer and general health. This is to
standard treatment. know that any progress is because of the treatment
and not because of differences between patients.
Phase IV trials test new drugs approved by Likewise, some clinical trials are only open to people
the U.S. FDA (Food and Drug Administration) who have not started treatment while others are.
in many patients with different types of cancer.
To join, youll need to review and sign a paper called
Joining a clinical trial has benefits. First, youll have an informed consent form. This form describes the
access to the most current cancer care. Second, you study in detail. The studys risks and benefits should
will receive the best management of care. Third, the be described and may include others than those listed
results of your treatmentboth good and badwill be above.
carefully tracked. Fourth, you may help other people
who will have cancer in the future. Ask your treatment team if there is an open clinical
trial that you can join. There may be clinical trials
Clinical trials have risks, too. Like any test or where youre getting treatment or at other treatment
treatment, there may be side effects. Side effects centers nearby. You can also find clinical trials
are unhealthy or unpleasant physical or emotional through the websites listed in Part 5.

27
3 Overview of cancer treatments Chemotherapy
Chemotherapy Part 4 is a guide that explain who should receive

which treatments. You will learn which regimens
Chemotherapy, or chemo, includes drugs that may be part of your treatment. Chemotherapy is
disrupt the life cycle of cancer cells so they cant sometimes given in high doses and followed by a
increase in number. Some chemotherapy drugs kill stem cell transplant. Stem cell transplant is described
cancer cells by damaging their DNA or by disrupting later in this chapter.
the making of DNA. Other drugs interfere with cell
parts that are needed for making new cells. Thus, Side effects of chemotherapy
no new cells are made to replace dying cells. Side effects of chemotherapy differ between people.
Chemotherapy is often used to treat CLL. Some people have many side effects. Others have
few. Some side effects can be very serious while
Many chemotherapy drugs work when cells are in others can be unpleasant but not serious. Most side
an active growth phase. During the active growth effects appear shortly after treatment starts and will
phase, cells grow and divide to form a new cell. stop after treatment. However, other side effects are
Chemotherapy drugs that disrupt the growth phase long-term or may appear years later.
work well for cancer cells that are growing and
dividing quickly. Other chemotherapy drugs work Side effects of chemotherapy depend on many
whether cells are in a growth or resting phase. factors. These factors include the drug type, amount
Chemotherapy can kill both cancer and normal cells. taken, length of treatment, and the person. In general,
most side effects are caused by the death of fast-
Most chemotherapy drugs for CLL are liquids that are growing cells. These cells are found in the blood,
slowly injected into a vein. Some are made as pills gut, hair follicles, and mouth. Thus, common side
that can be swallowed. By any method, the drugs effects of chemotherapy include low blood cell counts,
travel in your bloodstream to treat cancer throughout not feeling hungry, nausea, vomiting, diarrhea, hair
your body. Doctors use the term systemic when loss, and mouth sores. Long-term side effects of
talking about a cancer treatment for the whole body. chemotherapy for CLL include increased risk for
Chemotherapy and other drugs used to treat CLL are getting infections.
listed in Chart 3.1.
Not all side effects of chemotherapy are listed here.
Chemotherapy is given in cycles of treatment days Please ask your treatment team for a complete list of
followed by days of rest. This allows the body to common and rare side effects. If a side effect bothers
recover before the next cycle. Cycles vary in length you, tell your treatment team. There may be ways to
depending on which drugs are used. Often, one total help you feel better. There are also ways to prevent
cycle is 4 weeks long. some side effects.
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.

28
3 Overview of cancer treatments Chemotherapy
Chart 3.1 Drug treatment for CLL
Generic name Brand name (sold as) Type of treatment
Alemtuzumab Campath Targeted therapy
Bendamustine hydrochloride Treanda Chemotherapy
Chlorambucil Leukeran Chemotherapy
Cladribine Leustatin Chemotherapy
Cyclophosphamide Chemotherapy
Cytarabine Cytosar-U Chemotherapy
Doxorubicin hydrochloride Chemotherapy
Fludarabine phosphate Fludara Chemotherapy
Ibrutinib Imbruvica Targeted therapy
Idelalisib Zydelig Targeted therapy
Lenalidomide Revlimid Immunotherapy
Methylprednisolone;
A-Methapred, Depo-Medrol,
Methylprednisolone acetate; Steroid
Medrol, Solu-Medrol
Methylprednisolone sodium succinate
Obinutuzumab Gazyva Targeted therapy
Ofatumumab Arzerra Targeted therapy
Oxaliplatin Eloxatin Chemotherapy
Pentostatin Nipent Chemotherapy
Prednisone Steroid
Rituximab Rituxan Targeted therapy
Vincristine sulfate Chemotherapy

29
3 Overview of cancer treatments Steroids | Immunomodulators
Steroids Immunomodulators
Steroids are a type of drug that is often used to The immune system is your bodys natural defense
relieve inflammation. Steroids can also have anti- against illness. Immunomodulators are drugs
cancer effects. Methylprednisolone is a corticosteroid that modify different parts of the immune system.
used to treat CLL. Read Part 4 for more information Lenalidomide is an immunomodulator used to treat
on when its used. CLL.
Methylprednisolone is given in high doses along with Lenalidomide is made in pill form. It is given in cycles
rituximab. Rituximab is described in the Targeted of treatment days followed by days of rest. A cycle
therapy section in this chapter. Methylprednisolone may consist of 3 weeks of treatment and 1 week of
can either be injected into your vein or swallowed rest. It may also be given for 4 straight weeks. Cycles
in pill form. It is often taken for a few days during a may repeat until the cancer grows or side effects
1-month cycle. become severe.
Prednisone is another steroid that is used to treat Lenalidomide treats cancer in more than one way. As
CLL. It is given along with some chemotherapy an immunomodulator, it boosts the immune system.
regimens. Prednisone is made in pill form and is It also helps stop cancer cells from increasing in
taken once a day with food. number. Third, it also works like a type of targeted
therapy called angiogenesis inhibitors. These drugs
Most side effects of steroids fade away once the stop the growth of new blood vessels that would
drugs are stopped. Common side effects include provide food (nutrients) to the cancer.
feeling hungry, trouble sleeping, slow wound healing,
upset stomach, and swelling in the ankles, feet, and Common side effects include low blood counts,
hands. Methylprednisolone with rituximab increases diarrhea, itching, rash, and fatigue. Serious but less
the likelihood of getting infections. 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.

30
3 Overview of cancer treatments Targeted therapy
Targeted therapy Common side effects include an allergic reaction when

receiving the medicine. Also, you may feel nausea,
Targeted therapy is a class of drugs that stops the vomit, get diarrhea, and have trouble sleeping. Blood
action of molecules that help cancer cells grow. It is counts are often low when taking this medicine. Taking
less likely to harm normal cells than chemotherapy. alemtuzumab will increase your chances of getting a
There are 6 targeted therapies that are used to treat cytomegalovirus or other infection.
CLL. Four of them are monoclonal antibodies and two
are kinase inhibitors. Ibrutinib
Ibrutinib is a kinase inhibitor. It stops a kinase called
Monoclonal antibodies are man-made antibodies that BTK (Brutons tyrosine kinase). This kinase is found
attach to proteins on cancer cells. The monoclonal inside of CLL cells and normal B-cells.
antibodies used to treat CLL attach to antigens. When
antibodies are attached to antigens on a cell, the cell Ibrutinib is usually taken without other cancer
is marked to be destroyed by your immune system. medicines to treat CLL. It is made in pill form and
taken once a day around the same time. Your doctor
Kinases are molecules that move chemicals, called will tell you how many pills you need for your dose.
phosphates, from one molecule to another. Kinase
inhibitors stop the phosphates from being moved. Common side effects of ibrutinib include diarrhea,
Kinase inhibitors often block growth signals within tiredness, muscle and bone pain, bruising, nausea,
cancer cells. This reduces the number of new cancer upper respiratory tract infection, and rash. There may
cells being made. be a short-lived increase in lymphocytes when first
taking ibrutinib. Serious but uncommon side effects
Next, the targeted therapies for CLL are briefly include bleeding, severe infections, heart and kidney
described. Some side effects are listed. Ask your problems, and other cancers.
treatment team for a full list of common and rare side
effects. In Part 4, information on who should receive Idelalisib
these drugs is provided. Idelalisib is a kinase inhibitor. It stops a kinase called
PI3K (phosphoinositide 3-kinase delta). This kinase is
Alemtuzumab found inside of CLL cells and normal B-cells.
Alemtuzumab is a monoclonal antibody that attaches
to a molecule called CD52. CD52 is found on CLL Idelalisib is used alone or sometimes with rituximab to
cells, healthy B-cells and T-cells, as well as other treat CLL. It is made in pill form and is taken twice a
cells. Alemtuzumab is used alone and sometimes with day. Your doctor will tell you how many pills you need
other medicines to treat CLL. for your dose.
Alemtuzumab is a liquid that will be slowly injected Common side effects of idelalisib include diarrhea,
into your vein. It may take up to two hours to get fever, fatigue, nausea, cough, lung infection, belly
the full dose. Alemtuzuamb can also be given as an pain, chills, and rash. White blood counts are often
injection under the skin. Alemtuzumab is often given low when taking this medicine. However, there may
three times a week for 12 weeks. be a short-lived increase in lymphocytes when first
taking idelalisib. Serious but uncommon side effects

31
3 Overview of cancer treatments Targeted therapy
include liver and lung problems, skin problems, You may have an allergic reaction while receiving
severe diarrhea, and holes in your gut. obinutuzumab. Tumor lysis syndrome, infections, and
hepatitis are more likely while taking obinutuzumab.
Obinutuzumab Although not common, you may become confused,
Obinutuzumab attaches to a molecule on CLL dizzy, and have difficulty walking, talking, or seeing.
cells called CD20. See Figure 3.1. It works by
marking cells for destruction but it may directly kill Ofatumumab
the cells, too. It is used alone and sometimes with Ofatumumab is another monoclonal antibody that
chemotherapy to treat CLL. attaches to CD20. However, it attaches to a different
part of CD20. It is used alone and sometimes with
Obinutuzumab is a liquid that will be slowly injected chemotherapy to treat CLL.
into your vein. It takes a few hours to get the full dose.
Obinutuzumab is given on some days during six 28- Ofatumumab is a liquid that will be slowly injected
day treatment cycles. into your vein. It takes about 6 hours to receive the
first dose. Other doses may be given in less time.
Ofatumumab is often given once a week for 8 weeks.
Then its restarted after a 4- or 5-week break. After
the break, ofatumumab is often received once a
Figure 3.1 Anti-CD20 monoclonal antibody month for four months.
Anti-CD20 monoclonal antibodies attach to CLL
cells to mark them for destruction by your immune You may have an allergic reaction while receiving
system. ofatumumab. Other common side effects include
low blood cell counts, infections, diarrhea, nausea,
fatigue, and rash. Hepatitis B can be reactivated while
taking ofatumumab.
Rituximab
Like obinutuzumab and ofatumumab, rituximab
also attaches to CD20. It works by marking cells for
destruction but it may directly kill the cells, too. It is
sometimes used alone, with chemotherapy, or with
another targeted therapy to treat CLL.
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 you will receive rituximab depends
on what other cancer medicines you are receiving.
You may have an allergic reaction while receiving

Derivative work of Rituximab Binding to CD20 on a B Cell Surface
by NIAID available at commons.wikimedia.org/wiki/File:Rituxima_ rituximab. Other common side effects are chills,
Binding_to_CD20_on_a_B_Cell_Surface_(6830897205).jpg under a
Creative Commons Attribution 2.0 Generic license
infections, body aches, tiredness, and low blood cell
counts. Rituximab also increases your chances for

32
3 Overview of cancer treatments Stem cell transplant
tumor lysis syndrome, heart problems, and blockage Conditioning chemotherapy

and holes in your gut. Before the transplant, you will receive chemotherapy.
The chemotherapy will suppress your immune system,
allowing the donor cells to grow. The high-dose
chemotherapy also destroys normal cells in the bone
Stem cell transplant marrow. This greatly weakens your immune system
so that your body doesnt kill the transplanted stem
Hematopoetic stem cells are cells that develop cells. Not every person can tolerate the high-dose
into mature blood cells. Stem cells and mature chemotherapy before the transplant. Side effects of
blood cells are made in bone marrow. The goal of a chemotherapy are described earlier in this chapter.
stem cell transplant is to cure cancer by replacing
unhealthy blood stem cells with healthy ones that will Transplanting stem cells
attack cancer cells. This is done by suppressing the After chemotherapy, you will receive the healthy stem
bone marrow and cancer with chemotherapy then cells through a transfusion. A transfusion is a slow
transplanting healthy blood stem cells. The healthy injection of blood products through a central line into
blood stem cells will grow, form new marrow and a large vein. A central line (or central venous catheter)
blood cells, and attack remaining cancer cells. is a thin tube. The tube will be inserted into your skin
through one cut and into your vein through a second
Using stem cells from a donor is called an allogeneic cut. Local anesthesia is used. This process can take
stem cell transplant. Besides a new immune system, several hours to complete.
another benefit of this transplant is the GVL (graft-
versus-leukemia) effect. The GVL effect is an attack The transplanted stem cells will travel to your bone
on cancer cells by the transplanted stem cells. marrow and grow. New, healthy blood cells will form.
This is called engraftment. It usually takes about 2 to
Allogeneic stem cell transplant is sometimes used to 4 weeks.
treat CLL. It is an option for some people after drug
treatment has been received. The steps of treatment Until then, you will have little or no immune defense.
with allogeneic stem cell transplant are described You may need to stay in a very clean room at the
next. hospital. You may be given an antibiotic to prevent
or treat infection. You may also be given a blood
HLA typing transfusion to prevent bleeding and to treat anemia.
Special testing must be done to find the right donor While waiting for the cells to engraft, you will likely
for you. The donor and your tissue type must be a feel tired and weak.
near-perfect match for this treatment to work. The
test used to check tissue type is called HLA (human
leukocyte antigen) typing. A blood sample is needed
to perform the test.

33
3 Overview of cancer treatments Complementary and alternative medicine
Complementary and alternative medicine
CAM (complementary and alternative medicine)

is a group of treatments that arent 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 arent known to kill cancer cells, they
may improve your comfort and well-being. 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 havent 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.

34
3 Overview of cancer treatments Notes
My notes

35
3 Cancer staging Review
Review
Clinical trials give people access to new tests Lenalidomide treats CLL by modifying your
and treatments that otherwise cant usually immune system and by other means.
be received. These new tests and treatments
Some targeted therapies for CLL mark the
may, in time, be approved by the FDA.
cancer cells for destruction by your immune
Chemotherapy stops the life cycle of cancer system. Other targeted therapies stop the
cells so they cant increase in number. cancer cells from receiving signals to grow.
Some steroids have anti-cancer effects and A stem cell transplant destroys bone marrow
may be used with chemotherapy. then replaces it by adding healthy stem cells
into your body.

36
4
Treatment guide

37
4 Treatment guide
40 4.1 Treatment for CLL with del(17p)
Lists treatment options for CLL that is
missing parts of chromosomes 17. Parts of
chromosome 11 may or may not be missing.
42 4.2 Treatment for CLL without del(17p)

and del(11q)
Lists treatment options for CLL that isnt
missing parts of chromosome 17 or 11.
48 4.3 Treatment for CLL without del(17p)

but with del(11q)
Lists treatment options for CLL that isnt
missing parts of chromosome 17 but is
missing parts of chromosome 11.
52 4.4 Supportive care

Lists treatment options for other health
conditions that are common among people
treated for CLL.
56 Review

38
4 Treatment guide CLL
What are my options?

Clinical trials are the preferred There are multiple treatment options for CLL.
Treatment options that are best for you depend on
treatment option of CLL experts for features of the cancer and sometimes your age and
people with CLL. If you are unable health status. Thus, treatment options in Part 4 are
grouped by these factors.
or dont want to join a clinical trial,
Part 4 lists other treatment options for The cancer feature that is very important for CLL
you. The first four sections in Part 4 treatment is whether there are missing parts of
chromosome 17. The standard of care differs based
address treatment for CLL, and the on this cancer feature. The word del(17p) is how
fifth section addresses supportive doctors refer to missing parts of chromosome 17,
and del(11q) for missing parts of chromosome 11. If
care.
unsure, ask your doctor if tests showed that there are
missing chromosome parts.
The information in Part 4 is taken
Part 4.1 is for people with CLL that is missing parts
from the treatment guidelines written of chromosome 17. TP53 is a gene within the part of
by NCCN experts of CLL. These chromosome 17 that is sometimes missing. A TP53
mutation assessed by DNA sequencing is another
treatment guidelines list options for
way to know if chromosome 17 is missing. Read Part
people with CLL in general. Thus, 4.1 to learn what is the standard of care for CLL with
your doctors may suggest other del(17p).
treatment for you based on your Parts 4.2 and 4.3 are for people with CLL that isnt
health and personal wishes. Fully missing parts of chromosome 17. If CLL has no
missing parts of chromosome 17 and 11, read Part
discuss your treatment options with
4.2. If CLL is only missing parts of chromosome 11,
your doctor. read Part 4.3. Treatment options in Parts 4.2 and 4.3
are further grouped by age and health status.
Before starting treatment, your doctor may want to

test the cancer again. Features of cancer can change
over time, so re-testing may be needed if some time
has passed. Testing of chromosomes 11, 12, 13,
and 17 with FISH is recommended. Also, karyotype
is needed. Your doctor may advise you to get an
imaging test

39
4 Treatment guide Treatment for CLL with del(17p)
4.1 Treatment for CLL with del(17p)
Chart 4.1.1 First-time treatments
Treatment options* (best options listed first)
1. Ibrutinib
2. High-dose methylprednisolone + rituximab
3. FCR (fludarabine, cyclophosphamide, rituximab)
4. FR (fludarabine, rituximab)
5. Obinutuzumab + chlorambucil
6. Alemtuzumab rituximab
*If this treatment works, consider having a stem cell transplant if complex karyotype present.
Chart 4.1.2 Treatments if prior treatment failed
Treatment options (best options listed first)
1. Ibrutinib 5. Lenalidomide rituximab
2. Idelalisib + rituximab 6. Alemtuzumab rituximab
3. Idelalisib 7. Ofatumumab
8. OFAR (oxaliplatin, fludarabine, cytarabine,

rituximab)

40
4 Treatment guide Treatment for CLL with del(17p)
Chart 4.1.1 lists first-time treatment options for CLL Chart 4.1.2 lists treatment options for if prior
that is missing parts of chromosome 17. A clinical trial treatment fails. Join a clinical trial if possible. If you
is advised. If youre unable or refuse to join a clinical cant, ibrutinib is the standard of care. A well-designed
trial, ibrutinib is the standard of care. Other options clinical trial of idelalisib with rituximab recently ended
include high-dose methylprednisolone with rituximab, and showed this option has good results. Other
FCR, FR, obinutuzumab with chlorambucil, and options include high-dose methylprednisolone with
alemtuzumab with or without rituximab. rituximab, lenalidomide with or without rituximab,
alemtuzumab with or without rituximab, ofatumumab,
If first-time treatment works, the next steps are based and OFAR.
on the presence of a complex karyotype. If theres no
complex karyotype, you may start observation. If a
complex karyotype is present, you have three options.
Think about getting a stem cell transplant. Besides a
stem cell transplant, you can join a clinical trial or start
observation.

41
4 Treatment guide Treatment for CLL without del(17p) and del(11q)
4.2 Treatment for CLL without del(17p) and del(11q)
Frail and sick
Chart 4.2.1 Treatments excluding purine analogs
2. Ibrutinib
3. Ofatumumab + chlorambucil
4. Rituximab + chlorambucil
5. Obinutuzumab
6. Rituximab
7. Chlorambucil
8. Pulse corticosteroids

42
When doctors plan treatment for CLL, one of the Chart 4.2.1 lists treatment options that are the
first steps is to exclude any treatment that is likely least likely to cause life-threatening infections.
to be life-threatening. Chemotherapy is sometimes Purine analogs arent included in the list. They have
part of the standard of care for CLL without del17(p). been shown to suppress white blood cells and in
However, some types are more likely to cause life- turn, increase your chances of getting an infection.
threatening infections to some people. Your doctor will Purine analogs include fludarabine, cladribine, and
decide your risk based on your fitness and health. pentostatin.
Options in Part 4.2 are grouped by fitness and Purine analogs can reduce normal white blood cells
health. In the first section, Frail and sick, options to very low levels. It can take years for some white
are listed for people who arent likely to be able to blood cells to increase to normal levels. If you take
survive a serious infection. Purine analogs a type of purine analogs, you may increase your chances for
chemotherapy are excluded as treatment options. getting life-threatening infections.
The second section, Older or quite sick, starts on Compared to purine analogs, there are safer
page 44. This section is for people who are: 1) 70 treatment options if you are physically frail and overall
years of age and older; or 2) younger than 70 years quite sick. Some of these treatments consist of both
but have serious health problems in addition to targeted therapy and chemotherapy. They include
cancer. Some of the treatment options for this group obinutuzumab with chlorambucil, ofatumumab with
include a purine analog. chlorambucil, and rituximab with chlorambucil. The
second drug listed in Chart 4.2.1 is ibrutinib. It is
The third section, Younger and fairly healthy, starts on included based on good results in well-designed
page 46. This section is for people who are younger clinical trials.
than 70 years of age and are fairly healthy besides
having cancer. The standard of care includes a purine Other options include taking just one cancer drug.
analog. These options are obinutuzumab, rituximab,
chlorambucil, and pulse corticosteroids. Pulse
corticosteroids are corticosteroids given in high doses
over 3 to 5 days.

43
Older or quite sick
Chart 4.2.2 First-time treatments including purine analogs
1. Obinutuzumab + chlorambucil 6. Obinutuzumab
2. Ibrutinib 7. Fludarabine rituximab
3. Ofatumumab + chlorambucil 8. Chlorambucil
4. Rituximab + chlorambucil 9. Rituximab
5. Bendamustine rituximab
Chart 4.2.3 Treatments if prior treatment fails
Treatment options*(best options listed first)
1. Ibrutinib 8. Rituximab + chlorambucil
2. Idelalisib + rituximab 9. Ofatumumab
3. Idelalisib 10. Obinutuzumab
4. Bendamustine rituximab 11. Lenalidomide rituximab
5. Reduced-dose FCR (fludarabine,

cyclophosphamide, rituximab)
6. Reduced-dose PCR (pentostatin,
13. Dose-dense rituximab
*If this treatment works, consider having a stem cell transplant next if you arent too sick.

44
Chart 4.2.2 lists first-time treatment options for Chart 4.2.3 lists treatment options for if first-time
older or younger sick people who have CLL that isnt treatment fails. Before starting treatment, your doctor
missing parts of either chromosome 17 or 11. Your may want to test the cancer again. Features of cancer
doctors may think you can withstand purine analogs. can change over time, so re-testing may be needed
However, the first few options listed arent as harsh if some time has passed. Tests of the chromosomes
on your body as purine analogs. in the cancer cells are advised. These tests include
FISH and karyotype.
Obinutuzumab plus chlorambucil has been the
standard of care for this group. It has had good If the features havent changed, ibrutinib alone and
results in well-designed clinical trials. The second idelalisib with rituximab are preferred options. They
drug listed in Chart 4.2.2 is ibrutinib. It is also included are preferred due to good results measured in well-
based on good results in well-designed clinical trials. designed clinical trials. There are 11 other options in
Chart 4.2.3 that are listed in order of preference of
Chlorambucil with ofatumumab and chlorambucil NCCN experts.
with rituximab are also good options. Less
preferred options are bendamustine with or without
rituximab and fludarabine with or without rituximab.
Obinutuzumab, chlorambucil, and rituximab may be
used alone to treat CLL. Rituximab alone is the least
preferred option.

45
Younger and fairly healthy
2. FR (fludarabine, rituximab)
3. PCR (pentostatin, cyclophosphamide, rituximab)
Treatment options*(best options listed first)
8. RCHOP (rituximab, cyclophosphamide,

1. Ibrutinib
doxorubicin, vincristine, prednisone)

2. Idelalisib + rituximab
rituximab)
3. Idelalisib 10. Ofatumumab
4. FCR (fludarabine, cyclophosphamide,

11. Obinutuzumab
rituximab)
5. PCR (pentostatin, cyclophosphamide,

12. Lenalidomide rituximab
rituximab)
6. Bendamustine rituximab 13. Alemtuzumab rituximab
7. Fludarabine + alemtuzumab 14. High-dose methylprednisolone + rituximab

46
Chart 4.2.4 lists first-time treatment options for If the features havent changed, ibrutinib alone and
younger, healthy people with CLL that isnt missing idelalisib with rituximab are preferred options. They
chromosome 17 or 11. Chemoimmunotherapy with are preferred due to good results measured in well-
FCR is the standard of care. FCR has been tested in designed clinical trials. There are 12 other options in
well-designed clinical trials and has had good results. Chart 4.2.4 that are listed in order of preference of
FR, PCR, and bendamustine with or without rituximab NCCN experts.
are other options.
If your treatment works, think about getting a stem
Chart 4.2.5 lists treatment options for if first-time cell transplant. You must be fairly healthy to have a
treatment fails. Before starting treatment, your doctor transplant. A transplant may improve the prognosis of
may want to test the cancer again. Features of cancer the cancer.
can change over time, so re-testing may be needed
if some time has passed. Tests of the chromosomes
in the cancer cells are advised. These tests include
FISH and karyotype.

47
4 Treatment guide Treatment for CLL without del(17p) but with del(11q)
4.3 Treatment for CLL without del(17p) but with del(11q)
Older or quite sick
1. Obinutuzumab + chlorambucil 6. Cyclophosphamide, prednisone rituximab

2. Ibrutinib
3. Ofatumumab + chlorambucil 8. Chlorambucil
4. Rituximab + chlorambucil 9. Rituximab
Chart 4.3.2 Treatments if prior treatment failed
1. Ibrutinib 8. Rituximab + chlorambucil
4. Bendamustine rituximab 11. Lenalidomide rituximab

6. Reduced-dose PCR (pentostatin,

13. Dose-dense rituximab

48
When doctors plan treatment for CLL, one of the without rituximab, cyclophosphamide and prednisone
first steps is to exclude any treatment that is likely with or without rituximab, reduced-dose FCR,
to be life-threatening. Chemotherapy is sometimes chlorambucil, and rituximab. Rituximab alone is the
part of the standard of care for CLL without del17(p). least preferred option.
However, some types are more likely to cause life-
threatening infections to some people. Your doctor will Chart 4.3.2 lists treatment options for if first-time
decide your risk based on your fitness and health. treatment fails. Before starting treatment, your doctor
may want to test the cancer again. Features of cancer
Treatment options in Part 4.3 are grouped by fitness can change over time, so re-testing may be needed
and health. People who are frail and sick should avoid if some time has passed. Tests of the chromosomes
purine analogs. Read Chart 4.2.1 in Part 4.2 to learn in the cancer cells are advised. These tests include
which options are advised by NCCN experts for this FISH and karyotype.
group.
If the features havent changed, ibrutinib alone and
The first section in Part 4.3 is called Older or quite idelalisib with rituximab are preferred options. They
sick. It is for people who are: 1) 70 years of age and are preferred due to good results measured in well-
older; or 2) younger than 70 years but have serious designed clinical trials. There are 11 other options in
health problems in addition to cancer. Some of the Chart 4.3.2 that are listed in order of preference of
treatment options for this group include a purine NCCN experts.
analog.
If your treatment works, think about getting a stem
The second section, Younger and fairly healthy, cell transplant. You must be fairly healthy to have a
starts on page 50. This section is for people who are transplant. A transplant may improve the prognosis of
younger than 70 years of age and are fairly healthy the cancer.
besides having cancer. The standard of care includes
a purine analog.
Chart 4.3.1 lists first-time treatment options for

older or younger sick people with CLL that is missing
parts of chromosome 11. Your doctors may think you
can withstand purine analogs. However, the first few
options listed arent as harsh on your body as purine
analogs.
Obinutuzumab plus chlorambucil has been the

standard of care for this group. It has had good
results in well-designed clinical trials. The second
drug listed in Chart 4.3.1 is ibrutinib. It is also included
based on good results in well-designed clinical trials.
Other options include ofatumumab with chlorambucil,

rituximab with chlorambucil, bendamustine with or

49
Younger and fairly healthy
Chart 4.3.3 First-time treatments
3. PCR (pentostatin, cyclophosphamide, rituximab)

1. Ibrutinib
rituximab)
4. FCR (fludarabine, cyclophosphamide, rituximab) 11. Lenalidomide rituximab
5. PCR (pentostatin, cyclophosphamide, rituximab) 12. Alemtuzumab rituximab
6. Bendamustine rituximab 13. High-dose methylprednisolone + rituximab
7. Fludarabine + alemtuzumab

50
Chart 4.3.3 lists first-time treatment options for If the features havent changed, ibrutinib alone and
younger, healthy people with CLL that is missing idelalisib with rituximab are preferred options. They
parts of chromosome 11. Options include FCR, are preferred due to good results measured in well-
bendamustine with or without rituximab, PCR, and designed clinical trials. There are 12 other options in
obinutuzumab with chlorambucil. Chart 4.3.4 that are listed in order of preference of
NCCN experts.
Chart 4.3.4 lists treatment options for if first-time
treatment fails. Before starting treatment, your doctor If your treatment works, think about getting a stem
may want to test the cancer again. Features of cancer cell transplant. You must be fairly healthy to have a
can change over time, so re-testing may be needed transplant. A transplant may improve the prognosis of
if some time has passed. Tests of the chromosomes the cancer.
in the cancer cells are advised. These tests include
FISH and karyotype, which are described in Part 2.

51
4 Treatment guide Supportive care
4.4 Supportive care
Chart 4.4 Supportive care by health condition
Health condition Type of supportive care
Medicine as needed
Severe ear, sinus, or lung infections Test blood for antibodies
If IgG <500 mg/dL, infusions of gamma globulin every month
Flu Influenza vaccine every year
Pneumococcal infection Vaccine every 5 years; Prevnar is preferred
Transfusion should be done according to hospital standards

Blood transfusion needed
All blood products should be radiated
Diagnosis with reticulocyte and haptoglobin counts and direct

antiglobulin test
Autoimmune hemolytic anemia If severe, stop taking fludarabine and do not take again
Treat with corticosteroids, IVIG, cyclosporin A, splenectomy, or
rituximab
Diagnosis with bone marrow test for cause of low platelets

Immune thrombocytopenic purpura Treat with corticosteroids, rituximab, IVIG, cyclosporin A,
splenectomy, eltrombopag, or romiplostim
Diagnosis with bone marrow test and test for parvo B19
Pure red cell aplasia Treat with corticosteroids, cyclophosphamide, cyclosporine or
anti-thymocyte globulin
If CLL is present in large amounts and you are at risk:

Tumor lysis syndrome
Consider taking medicine to prevent
If receiving purine-analogs, alemtuzumab, or both:
Herpes virus
Start taking medicine like acyclovir to prevent infection
If receiving purine-analogs, alemtuzumab, or both:
Pneumocystis pneumonia Start taking medicine like sulfamethoxazole and trimethoprim
to prevent illness
If receiving alemtuzumab:
Cytomegalovirus reactivation Start taking ganciclovir if virus is present or rising
Blood tests of virus are needed every 23 weeks
Continued on page 54.

52
Chart 4.4 lists some of the supportive care needs of live viruses or bacteria. Do not take live vaccines
people with CLL. Supportive care doesnt aim to treat including the vaccine for shingles. If you are unsure
cancer but aims to improve quality of life. It is also about a vaccine, ask your treatment team about it.
called palliative care.
Some people being treated for CLL will need a blood
Supportive care can address many needs. It can transfusion. It is very important that the transfusion is
address emotional and physical needs, such as done according to hospital standards. All blood should
relieving symptoms. It can also help with treatment be treated with radiation before the transfusion. This
decisions as you may have more than one option. will prevent the new blood from attacking your body.
Supportive care also includes help with coordination
of care between health providers. Talk with your Autoimmune cytopenias are health conditions in
treatment team to plan the best supportive care which your immune system becomes confused
for you. Supportive care is an important part of and reacts against your own blood cells. The most
your cancer care, especially during active cancer frequent of these among people with CLL are
treatment. autoimmune hemolytic anemia, immune-mediated
thrombocytopenia, and pure red blood cell aplasia.
You are more likely to get infections due to CLL or Diagnosis and treatment of these conditions are listed
its treatment. Some people with CLL get severe in Chart 4.5.
ear, sinus, or lung (pneumonia) infections again and
again. These infections may require going to the Tumor lysis syndrome was described in Part 2. It can
hospital or getting an injection of medicine rather than occur among people with large amounts of CLL who
taking pills. If you get severe infections, testing your are undergoing strong cancer treatments. If you are
antibodies (IgG level) is advised. If your level of IgG at risk, think about starting medicine to prevent this
is low (<500 mg/dL) and you have severe, recurrent illness.
infections, you could benefit by infusions of gamma
globulin (IVIG) every month to raise your IgG level Other health conditions listed in Chart 4.4 are linked
above 500 mg/dL. to specific cancer treatments. Read through the list to
see if any apply to you. Purine-analogs are a type of
Some vaccines to prevent illness are advised. chemotherapy that includes fludarabine, cladribine,
Get a flu shot every year and a pneumococcal and pentostatin. Anti-CD20 monoclonal antibodies
vaccine every five years. Some vaccines consist of include obinutuzumab, ofatumumab, and rituximab.

53
Chart 4.4 Supportive care by health condition (Continued from page 52.)
Health condition Type of supportive care
If receiving anti-CD20 monoclonal antibodies and alemtuzumab:

Hepatitis B Test to assess status
Start taking medicine to prevent
If receiving lenalidomide:
Consider preventing flare if large lymph nodes present
An increase in the size of organs Prevent with prednisone 20 mg for 57 days then reduce
with CLL after starting treatment amount over 57 days
(ie, tumor flare reactions) If flare occurs, treat with prednisone 2550 mg for 510 days
Antihistamines for rash and itching, such as cetirizine 10 mg
4X a day or loratadine 10 mg 1X a day
If receiving lenalidomide:
Blood clot Start taking aspirin 81 mg a day if high number of platelets
unless already on warfarin
If receiving ibrutinib:
Irregular, fast heart beat (ie, atrial
Consider non-warfarin anti-coagulation medicine
fibrillation)
If atrial fibrillation can't be controlled, switch to idelalisib
If receiving ibrutinib:
Stop taking ibrutinib if on warfarin
Serious bleeding Weigh the pros and cons of ibrutinib if on antiplatelet or
anticoagulant treatment
Stop ibrutinib before surgery and delay re-starting afterward
If receiving idelalisib:
Liver damage (ie, hepatotoxicity)
Stop idelalisib until problem is solved
Diarrhea or swollen colon (ie, colitis)
Stop idelalisib until problem is solved
Holes in gut
Stop idelalisib if it is likely caused holes in your gut
Inflammation of the lungs If receiving idelalisib:

(ie, pneumonitis) Stop idelalisib if symptoms appear

54

55
4 Treatment guide Review
Review
Treatment options for CLL are based on an first-time option based on good results in
features of the cancer and sometimes your clinical trials. FCR is the standard of care for
age and health status. people who are younger and healthy besides
having cancer.
Ibrutinib is the standard of care for CLL that is
missing parts of chromosome 17. People with CLL often need care for health
conditions related to the cancer or cancer
Treatment options for CLL that isnt missing
treatment. Treatment for conditions other than
parts of chromosome 17 are partly based on
cancer is part of supportive care. Talk to your
age and health status. Obinutuzumab with
treatment team about creating a supportive
chlorambucil has been the standard of care
care plan thats best for you.
for people who are frail, older, or quite sick.
However, ibrutinib has been recently added as

56
5
Making treatment decisions

57
5 Making treatment
decisions
59 Its your choice
60 Questions to ask your doctors
64 Weighing your options
66 Websites / Review
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.

58
5 Making treatment decisions Its your choice
Its your choice ones help. They can gather information, speak on
your behalf, and share in decision-making with your
The role patients want in choosing their treatment doctors. Even if others decide which treatment you
differs. You may feel uneasy about making treatment will receive, you still have to agree by signing a
decisions. This may be due to a high level of stress. consent form.
It may be hard to hear or know what others are
saying. Stress, pain, and drugs can limit your ability to On the other hand, you may want to take the lead
make good decisions. You may feel uneasy because or share in decision-making. Most patients do. In
you dont know much about cancer. Youve never shared decision-making, you and your doctors share
heard the words used to describe cancer, tests, information, weigh the options, and agree on a
or treatments. Likewise, you may think that your treatment plan. Your doctors know the science behind
judgment isnt any better than your doctors. your plan but you know your concerns and goals. By
working together, you are likely to get a higher quality
Letting others decide which option is best may make of care and be more satisfied. Youll likely get the
you feel more at ease. But, whom do you want to treatment you want, at the place you want, and by the
make the decisions? You may rely on your doctors doctors you want.
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

59
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 isnt 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:
Whats my diagnosis and prognosis?

Its 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. What tests will I have?
2. Where did the cancer start? In what type of cell?
3. Is this cancer common?
4. What is the cancer stage? Does this stage mean the cancer has spread far?
5. Is this a fast- or slow-growing leukemia?
6. What other test results are important to know?
7. How often are these tests wrong?
8. Would you give me a copy of the pathology report and other test results?
9. Can the cancer be cured? If not, how well can treatment stop the cancer from growing?

60
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?

61
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?

62
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 youre suggesting have you done?
4. Is this treatment a major part of your practice?
5. How many of your patients have had complications?

63
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 hasnt been shown to work
better than another, so science isnt helpful. Some
ways to decide on treatment are discussed next.
2nd opinion
The time around a cancer diagnosis is very stressful. very important decision. It can affect your length and
People with cancer often want to get treated as soon quality of life.
as possible. They want to make their cancer go
away before it spreads farther. While cancer cant be Support groups
ignored, there is time to think about and choose which Besides talking to health experts, it may help to talk
option is best for you. to patients who have walked in your shoes. Support
groups often consist of people at different stages of
You may wish to have another doctor review your treatment. Some may be in the process of deciding
test results and suggest a treatment plan. This is while others may be finished with treatment. At
called getting a 2nd opinion. You may completely trust support groups, you can ask questions and hear
your doctor, but a 2nd opinion on which option is best about the experiences of other people with CLL.
can help.
Compare benefits and downsides
Copies of the pathology report, a DVD of the imaging Every option has benefits and downsides. Consider
tests, and other test results need to be sent to the these when deciding which option is best for you.
doctor giving the 2nd opinion. Some people feel Talking to others can help identify benefits and
uneasy asking for copies from their doctors. However, downsides you havent thought of. Scoring each
a 2nd opinion is a normal part of cancer care. 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.
Whats more, some health plans require a 2nd opinion.
If your health plan doesnt 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

64
5 Making treatment decisions Weighing your options
My notes

65
5 Making treatment decisions Websites | Review
Websites Review
American Cancer Society Shared decision-making is a process in which
www.cancer.org/cancer/leukemia- you and your doctors plan treatment together.
chroniclymphocyticcll/index
Asking your doctors questions is vital to
getting the information you need to make
National Coalition for Cancer Survivorship
informed decisions.
www.canceradvocacy.org/toolbox
Getting a 2nd opinion, attending support
National Cancer Institute groups, and comparing benefits and
www.cancer.gov/types/leukemia downsides may help you decide which
treatment is best for you.
NCCN
www.nccn.org/patients
The Leukemia & Lymphoma Society (LLS)

www.LLS.org/informationspecialists

66
Glossary
Dictionary
Acronyms

67
Glossary Dictionary
Dictionary
allogeneic stem cell transplant bone marrow
A cancer treatment that suppresses bone marrow Soft, sponge-like tissue in the center of most bones
then replaces it by adding healthy blood stem cells where blood cells are made.
from a donor.
bone marrow aspiration
anemia Removal of a small amount of bone marrow that is
Abnormal low numbers of healthy red blood cells. liquid to test for disease.
anesthesia bone marrow biopsy

Loss of feeling with or without loss of wakefulness Removal of a small amount of solid bone and bone
that is caused by drugs. marrow to test for disease.
antibody cancer stage

A protein made by white blood cells that helps fight off A rating of tumors that suggest the outlook of the
infection. Also called an immunoglobulin. disease.
antigen chemotherapy
Any substance that activates the immune system. Drugs that stop the life cycle of cells so they dont
increase in number.
autoimmune hemolytic anemia
The wrongful destruction of red blood cells by the chromosome
immune system. Stands of genetic material inside of cells.
B symptoms clinical trial

High fevers, heavy night sweats, and fast weight loss Research on a test or treatment to assess its safety
without dieting caused by B-cell cancers. or how well it works.
B-cell complete blood count (CBC)

One of three types of a white blood cell called a A test of the number of blood cells in a sample.
lymphocyte.
complex karyotype
beta-2 microglobulin The presence 3 or more unrelated defects in
A small protein made by many types of cells. chromosomes that occur in more than one cell.
biopsy comprehensive metabolic panel

Removal of small amounts of tissue or fluid to be Tests of up to 14 chemicals in your blood.
tested for disease.
computed tomography (CT)
A test that uses x-rays to view body parts.

68
Glossary Dictionary
contrast gene
A dye put into your body to make clearer pictures Instructions in cells for making and controlling cells.
during imaging tests.
graft-versus-leukemia (GVL) effect
deoxyribonucleic acid (DNA) An attack on cancer cells by transplanted stem cells
A chain of chemicals inside cells that contains coded from a donor.
instructions for making and controlling cells.
haptoglobin
deoxyribonucleic acid (DNA) sequencing One of the proteins made by the liver.
A lab test used to look for abnormal changes in DNA.
hemoglobin
diagnose A protein with iron that is released from destroyed red
To identify a disease. blood cells.
differential hemolysis
Measurement of the different types of white blood The early death of red blood cells.
cells present in a blood sample.
human leukocyte antigen (HLA) typing
direct Coombs test A blood test that finds a persons unique set of
A lab test that detects if antibodies are stuck to and proteins on cells.
destroying red blood cells.
imaging test
echocardiogram A test that makes pictures (images) of the inside of
A test that uses sound waves to make pictures of the the body.
heart.
immune system
fatigue The bodys natural defense against disease.
Severe tiredness despite getting enough sleep that
limits ones ability to function. immunoglobulin
A protein made by white blood cells that helps fight off
fertility specialist infection. Also called an antibody.
An expert who helps men and women have babies.
immunohistochemistry (IHC)
flow cytometry A test of cancer cells to find specific cell traits
A test that looks at certain substances on the surface involved in abnormal cell growth.
of cells to identify the type of cells present.
immunomodulator
fluorescence in situ hybridization (FISH) A type of drug that modifies some parts of the bodys
A lab test that uses special dyes to look for abnormal disease-fighting system.
chromosomes.
lactate dehydrogenase
A protein that helps to make energy in cells.

69
Glossary Dictionary
liver mantle cell lymphoma

Organ that removes waste from the blood and helps A cancer that is defined by too many proteins called
to digest food. cyclin D1.
local anesthesia medical history

A controlled loss of feeling in a small area of the body All health events and medications taken to date.
caused by drugs.
methylation analysis
lymph A lab test that looks for chemical tags, called methyl
A clear fluid containing white blood cells. groups, on DNA.
lymph node monoclonal antibody

Small groups of special disease-fighting cells located Man-made antibodies that attach proteins on cancer
throughout the body. cells.
lymph vessel monoclonal B-lymphocytosis (MBL)

Tube-shaped ducts that carry lymph throughout the A health condition that features high numbers of
body. B-cells but is not cancer.
lymphatic system multi-gated acquisition (MUGA) scan

A network in the body that collects and transports a A test of the heart that uses radiation to make
fluid (lymph) and fights germs. pictures.
lymphocyte natural killer (NK) cell

A type of white blood cell that helps protect the body One of three types of a white blood cell called a
from illness. lymphocyte.
lymphoma observation
Cancer that begins in white blood cells called A period of testing for changes in cancer status while
lymphocytes that are within the lymphatic system. not receiving a specific treatment.
karyotype pathologist
A test that uses a microscope to examine a cells A doctor whos an expert in testing cells to find
chromosomes. disease.
kinase inhibitor performance status

A cancer treatment that stops the transfer of A rating of ones ability to do daily activities.
phosphates, which blocks growth signals to cancer
cells. physical exam
A review of the body by a health expert for signs of
disease.

70
Glossary Dictionary
positron emission tomography (PET) steroid

A test that uses radioactive material to see the shape A drug used to reduce redness, swelling, and pain,
and function of body parts. but also to kill cancer cells.
positron emission tomography/computed supportive care

tomography (PET/CT) Treatment for the symptoms or health conditions
A test that uses radioactive material and x-rays to caused by cancer or cancer treatment.
view the shape and function of organs and tissues.
targeted therapy
prognosis Drugs that stop the growth process that is specific to
The expected pattern and outcome of a disease cancer cells.
based on tests.
T-cell
pure red cell aplasia One of three types of a white blood cell called a
Very low numbers of the precursor cells to red blood lymphocyte.
cells in bone marrow.
thymus
purine analog A gland located in the throat, just beneath the voice
A type of chemotherapy that increases the likelihood box.
of serious infections.
tonsil
Rai staging system A group of tissue within the throat that contains many
The system used to stage chronic lymphocystic white blood cells called lymphocytes and fights germs
leukemia. that enter the mouth and nose.
reticulocyte tumor lysis syndrome (TLS)

A precursor cell to mature red blood cells. A condition that occurs when many cancer cells die
very quickly and release their contents into the blood,
sedative which can damage the kidneys and other organs.
A drug that helps a person to relax or go to sleep.
ultrasound
side effect A test that uses sound waves to take pictures of the
An unplanned physical or emotional response to inside of the body.
treatment.
uric acid
spleen A chemical that is made and released into the blood
An organ to the left of the stomach that helps protect when cells and other substances in the body break
the body from disease. down.
stem cell transplant vaccine

A cancer treatment that destroys bone marrow then A biological agent inserted into the body to prevent a
replaces it by adding healthy blood stem cells. disease.

71
Glossary Acronyms
Acronyms
BML PI3K
monoclonal B-lymphocytosis phosphoinositide 3-kinase delta
BTK SLL
Brutons tyrosine kinase small lymphocytic leukemia
CAM
complementary and alternative medicine
NCCN Abbreviations and Acronyms
CBC
complete blood count NCCN
National Comprehensive Cancer Network
CLL
chronic lymphocytic leukemia NCCN Patient Guidelines
CT NCCN Guidelines for Patients
computed tomography
NCCN Guidelines
DNA NCCN Clinical Practice Guidelines in Oncology
deoxyribonucleic acid
FDA
Food and Drug Administration
FISH
fluorescence in situ hybridization
GVL
graft-versus-leukemia
HLA
human leukocyte antigen
IGHV
immunoglobulin heavy-chain variable
IHC
immunohistochemistry
MUGA
multi-gated acquisition
NK cells
natural killer cells
PET
positron emission tomography

72
N C C N G U I D E L I N E S F O R PAT I E N T S
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Acute Lymphoblastic Leukemia Kidney Cancer Pancreatic Cancer

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Chronic Myelogenous Leukemia Multiple Myeloma Stages I and II Breast Cancer
Colon Cancer Non-Small Cell Lung Cancer Stage III Breast Cancer
Esophageal Cancer Ovarian Cancer Stage IV Breast Cancer
Hodgkin Lymphoma

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74
NCCN Panel Members
NCCN Panel Members for

Non Hodgkin Lymphoma
Andrew D. Zelenetz, MD, PhD/Chair Thomas M. Habermann, MD Oliver Press, MD, PhD
Memorial Sloan Kettering Cancer Center Mayo Clinic Cancer Center Fred Hutchinson Cancer Research Center/
Seattle Cancer Care Alliance
Leo I. Gordon, MD/Co-Vice Chair Nancy Lee Harris, MD
Robert H. Lurie Comprehensive Cancer Massachusetts General Hospital Rachel Rabinovitch, MD
Center of Northwestern University Cancer Center University of Colorado Cancer Center
William G. Wierda, MD, PhD/Co- Francisco Hernandez-Ilizaliturri, MD Nishitha Reddy, MD

Vice Chair Roswell Park Cancer Institute Vanderbilt-Ingram Cancer Center
The University of Texas
MD Anderson Cancer Center Richard T. Hoppe, MD Erin Reid, MD
Stanford Cancer Institute UC San Diego Moores Cancer Center
Jeremy S. Abramson, MD
Massachusetts General Hospital Steven M. Horwitz, MD Kenneth Roberts, MD
Cancer Center Memorial Sloan Kettering Cancer Center Yale Cancer Center/Smilow Cancer Hospital
Ranjana H. Advani, MD Mark S. Kaminski, MD Ayman A. Saad, MD

Stanford Cancer Institute University of Michigan University of Alabama at Birmingham
Comprehensive Cancer Center Comprehensive Cancer Center
C. Babis Andreadis, MD, MSCE
UCSF Helen Diller Family Christopher R. Kelsey, MD Lubomir Sokol, MD, PhD
Comprehensive Cancer Center Duke Cancer Institute Moffitt Cancer Center
Nancy Bartlett, MD Youn H. Kim, MD Lode J. Swinnen, MB, ChB

Siteman Cancer Center at Barnes- Stanford Cancer Institute The Sidney Kimmel Comprehensive
Jewish Hospital and Washington Cancer Center at Johns Hopkins
University School of Medicine Susan Krivacic, MPAff
Patient Advocate Julie M. Vose, MD, MBA
John C. Byrd, MD Fred & Pamela Buffett Cancer Center
The Ohio State University Comprehensive Ann S. LaCasce, MD
Cancer Center - James Cancer Hospital Dana-Farber/Brigham and Lynn Wilson, MD, MPH
and Solove Research Institute Womens Cancer Center Yale Cancer Center/Smilow Cancer Hospital
Luis E. Fayad, MD Matthew Lunning, DO Joachim Yahalom, MD

The University of Texas Fred & Pamela Buffett Cancer Center Memorial Sloan Kettering Cancer Center
MD Anderson Cancer Center
Auayporn Nademanee, MD Nadeem Zafar, MD
Richard I. Fisher, MD City of Hope Comprehensive Cancer Center St. Jude Childrens Research Hospital/
Fox Chase Cancer Center University of Tennessee
Pierluigi Porcu, MD Health Science Center
Martha J. Glenn, MD The Ohio State University Comprehensive
Huntsman Cancer Institute Cancer Center - James Cancer Hospital
at the University of Utah and Solove Research Institute
For disclosures, visit www.nccn.org/about/disclosure.aspx.

75
NCCN Member Institutions
NCCN Member Institutions

Fred & Pamela Buffett The Sidney Kimmel St. Jude Childrens
Cancer Center Comprehensive Cancer Research Hospital/
Omaha, Nebraska Center at Johns Hopkins The University of Tennessee
800.999.5465 Baltimore, Maryland Health Science Center
nebraskamed.com/cancer 410.955.8964 Memphis, Tennessee
hopkinskimmelcancercenter.org 888.226.4343 stjude.org
Case Comprehensive Cancer Center/ 901.683.0055 westclinic.com
University Hospitals Seidman Robert H. Lurie Comprehensive
Cancer Center and Cleveland Clinic Cancer Center of Northwestern Stanford Cancer Institute
Taussig Cancer Institute University Stanford, California
Cleveland, Ohio Chicago, Illinois 877.668.7535
800.641.2422 UH Seidman Cancer Center 866.587.4322 cancer.stanford.edu
uhhospitals.org/seidman cancer.northwestern.edu
866.223.8100 CC Taussig Cancer Institute University of Alabama at Birmingham
my.clevelandclinic.org/services/cancer Mayo Clinic Cancer Center Comprehensive Cancer Center
216.844.8797 Case CCC Phoenix/Scottsdale, Arizona Birmingham, Alabama
case.edu/cancer Jacksonville, Florida 800.822.0933
Rochester, Minnesota www3.ccc.uab.edu
City of Hope Comprehensive 800.446.2279 Arizona
Cancer Center 904.953.0853 Florida UC San Diego Moores Cancer Center
Los Angeles, California 507.538.3270 Minnesota La Jolla, California
800.826.4673 mayoclinic.org/departments-centers/mayo- 858.657.7000
cityofhope.org clinic-cancer-center cancer.ucsd.edu
Dana-Farber/Brigham and Memorial Sloan Kettering UCSF Helen Diller Family

Womens Cancer Center Cancer Center Comprehensive Cancer Center
Massachusetts General Hospital New York, New York San Francisco, California
Cancer Center 800.525.2225 800.689.8273
Boston, Massachusetts mskcc.org cancer.ucsf.edu
877.332.4294
dfbwcc.org Moffitt Cancer Center University of Colorado Cancer Center
massgeneral.org/cancer Tampa, Florida Aurora, Colorado
800.456.3434 720.848.0300
Duke Cancer Institute moffitt.org coloradocancercenter.org
Durham, North Carolina
888.275.3853 The Ohio State University University of Michigan
dukecancerinstitute.org Comprehensive Cancer Center - Comprehensive Cancer Center
James Cancer Hospital and Ann Arbor, Michigan
Fox Chase Cancer Center Solove Research Institute 800.865.1125
Philadelphia, Pennsylvania Columbus, Ohio mcancer.org
888.369.2427 800.293.5066
foxchase.org cancer.osu.edu The University of Texas
MD Anderson Cancer Center
Huntsman Cancer Institute Roswell Park Cancer Institute Houston, Texas
at the University of Utah Buffalo, New York 800.392.1611
Salt Lake City, Utah 877.275.7724 mdanderson.org
877.585.0303 roswellpark.org
huntsmancancer.org Vanderbilt-Ingram Cancer Center
Siteman Cancer Center Nashville, Tennessee
Fred Hutchinson Cancer at Barnes-Jewish Hospital 800.811.8480
Research Center/ and Washington University vicc.org
Seattle Cancer Care Alliance School of Medicine
Seattle, Washington St. Louis, Missouri Yale Cancer Center/
206.288.7222 seattlecca.org 800.600.3606 Smilow Cancer Hospital
206.667.5000 fredhutch.org siteman.wustl.edu New Haven, Connecticut
855.4.SMILOW
yalecancercenter.org

76
Notes
My notes

77
Index CLL
Index
biopsy 11, 15, 21
blood tests 1518
chemotherapy 18, 2833, 43, 49, 53
clinical trial 1617, 2627, 39, 41, 45, 47, 49, 51
diagnosis 1011, 5253
fertility 22
heart tests 22
imaging tests 2021, 39
immunomodulators 2930
medical history 1415
NCCN Member Institutions 76
NCCN Panel Members 75
physical exam 15
stem cell transplant 33, 4041, 4651
steroid 2930, 4243, 53
supportive care 5254
targeted therapy 29, 3132, 43

78

Chronic Lymphocytic
Leukemia
Version 1.2016
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NCCN Guidelines for Patients Version 1.2016

Available online at NCCN.org/patients

The National Comprehensive Cancer Network (NCCN) is a not-for-profit

This book focuses on the treatment of chronic lymphocytic leukemia. Key

NCCN Guidelines for Patients

NCCN Guidelines for Patients NCCN Guidelines NCCN Marketing

Supported by NCCN Foundation

National Comprehensive Cancer Network (NCCN)

NCCN Guidelines for Patients

NCCN Guidelines for Patients

Where should I start

NCCN Guidelines for Patients

NCCN Guidelines for Patients

Youve learned that you have or may

NCCN Guidelines for Patients

NCCN Guidelines for Patients

NCCN Guidelines for Patients

Changes in genes cause cancer cells to grow more

CLL can be a fast- or slow-growing cancer. Often, it

NCCN Guidelines for Patients

Do I have CLL? can be used to count B-cells, confirm clonality, and

The number of abnormal B-cells in your blood must

If there are fewer than 5,000 monoclonal B-cells, no

A common test of cells is IHC (immunohisto-

NCCN Guidelines for Patients

D1 because of abnormal chromosomes in cells. To

Most often, flow cytometry on a blood sample can

NCCN Guidelines for Patients

NCCN Guidelines for Patients

NCCN Guidelines for Patients

Doctors plan treatment with many Medical history

NCCN Guidelines for Patients

Physical exam nodes, so areas with lots of lymph nodes should be

Chart 2.1 Care before treatment

Must haves Sometimes useful

Medical history Quantitative immunoglobulins

Physical exam Haptoglobin

Karyotype Beta-2 microglobulin

DNA sequencing for IGHV and TP53 Lactate dehydrogenase

CD38 and ZAP-70 tests Uric acid

Complete blood count with differential CT scan

Comprehensive metabolic panel PET scan

Hepatitis B testing Bone marrow biopsy aspiration

Echocardiogram or MUGA Fertility support

Pregnancy test if you can have babies

NCCN Guidelines for Patients

Blood tests A complex karyotype is linked to a poorer prognosis.

Genetic tests Immunoglobulins are Y-shaped proteins that help fight

NCCN Guidelines for Patients

Complete blood count with differential Comprehensive metabolic panel

Figure 2.1 Immunoglobulin (A.K.A antibody)

NCCN Guidelines for Patients

Quantitative immunoglobulins red blood cells. Low numbers of reticulocytes is a sign

Haptoglobin Lactate dehydrogenase

If you have anemia, you should be tested for these

NCCN Guidelines for Patients