Additional Information and Resources Understanding CLL: A Guide for

Organizations Publications
American Cancer Society
(ACS)
Patients Who Want to Take Charge
Cancer Communication
National Office Published by PAACT of Chronic Lymphocytic Leukemia
1599 Clifton Road NE Patient Advocates for Advanced
Atlanta, GA 30329-4251 Cancer Treatments
1-800-ACS-2345 (1-800-227-2345) 1143 Parmelee Northwest
www.cancer.org Grand Rapids, MI 49504 Important information for patients and caregivers
Chronic Lymphocytic Leukemia (CLL) 616-453-1477
Foundation Telephone Support
c/o William D. Hoops, Esq The Leukemia & Lymphoma SocietySM –
1415 Louisiana Suite 3625 First Connection
Houston, TX 77002 1-800-955-4572
713-752-2350
www.cllfoundation.org
The Leukemia & Lymphoma SocietySM
1311 Mamaroneck Ave
White Plains, NY 10605
1-800-955-4572
www.leukemia-lymphoma.org
GrannyBarb and Art’s Leukemia Links
www.acor.org
Suggested Reading
Altman R, Sarg M. The Cancer Dictionary.
Henderson et al. Leukemia. Philadelphia, Pa:
WB Saunders Company; 1996.
Barbara Lackritz. Adult Leukemia:
A Comprehensive Guide for Patients and Families.
1st ed. Sebastopol, Calif: O’Reilly & Associates, Inc.;

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The Facts About Blood, Bone Marrow,
and Chronic Lymphocytic Leukemia (CLL)
How Do Healthy Blood and Bone Marrow Function? What Is Leukemia?
Blood carries oxygen and nutrients to all cells in the body and then carries away In 2001 approximately 31,500 adults were diagnosed with some form of
waste products produced by the cells. It is made up of plasma, a clear fluid, and leukemia, a cancer of the white blood cells, which causes the cells to reproduce
blood cells that are suspended in the plasma. There are 3 different categories of in an unregulated manner.1 The malignant cells develop abnormally and are not
blood cells: able to fight infection. They may multiply more quickly than usual or live longer than
normal cells, causing a build-up that begins to “crowd out” normal, healthy platelets
■ Red cells (erythrocytes) contain hemoglobin, which and red and white blood cells. As this happens, the body becomes unable to fight
gives blood its red color. Red cells pick up oxygen in infections, and symptoms such as fever, swollen glands, extreme tiredness, and
the lungs and carry it throughout the body. This is the abnormal bruising may begin to appear. There are 2 basic types of leukemias:
most common type of blood cell, making up about
■ Acute leukemias develop and progress very rapidly. They occur in both adults
45% of the blood
and children
■ Platelets (thrombocytes) control bleeding by allowing ■ Chronic leukemias develop and progress slowly. They occur most often in adults
blood to clot when cuts occur blood cells
What Is CLL?
■ White cells (leukocytes) are part of the immune system, which destroys germs CLL is a cancer of the blood and bone marow and is
and prevents infection. These cells can be found in the blood and in the tissues the most common adult chronic leukemia in the United
of the body. There are several different types of white cells: States.1 The American Cancer Society estimated that
- Monocytes, or macrophages, break down and remove damaged or dead 8100 people would be diagnosed with CLL in 2001.1
blood cells and germs It occurs most often in people over the age of 50 and
- Lymphocytes (B cells, T cells, and natural killer cells) produce antibodies affects about twice as many men than women.2 The
and provide the major defense against viral infections disease can affect either the B or T lymphocytes, but 95%
of all cases involve the B cells.2 Cancerous lymphocytes bone marrow
- Granulocytes (neutrophils, basophils, and eosinophils) provide the first defense
against many types of infections, including bacterial infections caused by CLL live much longer than normal cells and
do not fully mature or function properly in the bone marrow or the blood. Although
Blood cells are made in the bone marrow. In adults, active marrow is located in CLL progresses slowly, it is a serious disease, and currently there is no cure. In its
the back, hip, and shoulder bones, ribs, breastbone, and skull. Blood cells come early stages, CLL may not produce any signs or symptoms. In fact, about 25% of
from stem cells, which are able to clone themselves and can develop to form red
people with CLL are diagnosed as a result of a routine blood test.2
cells, white cells, or platelets. Different hormones determine which type of cell a
new, immature cell (or blast) will become when it matures. Cell production takes What Causes CLL?
place constantly in healthy marrow to supply fresh, healthy blood cells to the body. No one knows exactly what causes CLL, although scientists are working to find out.
The marrow also controls the quantity of each type of blood cell produced so that Current research indicates that an increased risk for CLL may be linked to some
the correct balance is maintained in the blood. viruses, increased age, genetics, exposure to certain chemicals such as benzene,
and some pesticides, herbicides, or fertilizers.1,2

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Understanding CLL and How to
Approach Treatment
How Do Doctors Know When Someone Has CLL? What Is the Goal of CLL Treatment?
Blood tests of people with CLL show high levels of white When your doctor decides to treat your CLL, he or she hopes to kill as many
blood cells. A diagnosis requires that the absolute lymphocyte cancerous cells as possible so that healthy, normal cells grow back in your bone
count be higher than 5000/mm3. In addition, to confirm the marrow, blood, and lymph system. This will make you feel better and may also
diagnosis of CLL, a doctor will perform tests to make sure that produce a symptom-free period, called a remission, which is the ultimate goal of
all of the cells can be traced to 1 malignant cell, which is called treatment. Don’t be discouraged if a particular treatment does not work against your
monoclonality.2 CLL because you can often try another type of treatment. You and your healthcare
team should discuss all of the different treatment approaches that are available.
What Does “Watchful Waiting” Mean?
After your CLL diagnosis, your doctor may tell you that it is best to “watch and Considering the Options
wait” rather than begin drug treatment. ”Watchful waiting” is considered the first There are a number of possible treatment options. Many of the available drugs
standard CLL treatment by many doctors. It involves tracking blood counts and can be given alone or together in different combinations. Your doctor may suggest
carefully watching for signs of disease. For many people, this may not seem like a specific approach to treatment, but as an active member of your treatment team,
any treatment at all, but because people can have CLL for very long periods of you should be involved in selecting the therapy. As you consider the choices, be
time before any signs of the disease appear, many physicians believe that earlier sure that you clearly understand the answers to the following questions:
drug treatment has no advantage. Leading physicians are currently debating the
■ What are the goals of treatment?
benefits of earlier active treatment for CLL.
■ What can be gained from the treatment?
Using Staging to Guide Treatment
Your healthcare team will probably rely on a staging system to define the stage of ■ What is the expected outcome of the treatment?
your CLL, determine the prognosis, decide when to begin active treatment, and help ■ What side effects, if any, may occur with the treatment?
guide the treatment selection process. Staging uses blood tests and physical exams
to classify CLL in terms of how much it has spread in the blood, bone marrow, and ■ What are the short- and long-term risks of the treatment?
body organs. The Rai Staging System was the first such system developed. It is ■ What other treatment options are available?
named after Dr. Kanti Rai, the physician who invented it, and establishes 5 stages
of disease progression. ■ What is the duration of the treatment?

Rai Staging System You and your healthcare team can

work together to determine realistic
Stage 0: Absolute lymphocytosis (more than 15,000 lymphocytes per treatment goals and select the best
cubic millimeter of blood); watch and wait is standard treatment possible treatment for your CLL.
Stage I: Absolute lymphocytosis and swollen lymph nodes; symptoms
may require active treatment
Stage II: Absolute lymphocytosis, swollen lymph nodes, and either a
swollen liver or spleen; people usually require treatment
Stage III: Absolute lymphocytosis and anemia with or without swollen lymph
nodes, liver, or spleen; nearly all people require treatment
Stage IV: Absolute lymphocytosis and thrombocytopenia (decrease in platelet
count) with or without anemia and swollen lymph nodes, liver, or
spleen; people require treatment

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Taking Charge of CLL
After the Diagnosis
How Can Emotions Be Managed? What Symptoms Should Be Reported to the CLL
A diagnosis of CLL is likely to be upsetting and scary to everyone involved. It is very Treatment Team?
normal to feel many different emotions, including confusion, sadness, fear, denial,
■ Fatigue— a feeling of tiredness that may be caused when white blood cells
hopelessness, or even anger. It is easy to understand why CLL can make people feel
build up and interfere with production of oxygen-carrying red blood cells
as though they have lost control of their own lives. The good news, however, is that
causing anemia
there is much to feel hopeful about. With the right care, people with CLL can live
comfortably for many years following their diagnoses, with long periods free of ■ Fever— caused by an infection due to a depressed immune system or an effect
symptoms. Although CLL is not curable, there are available treatment options, and that by-products of the cancerous white blood
researchers are always working to discover new and more effective therapies. cells are having on the brain
Through these efforts, the prognosis for good survival and quality of life will continue ■ Sudden weight loss, loss of appetite, or both —
to improve for people with CLL. common symptoms of cancer, though the cause
What Can People With CLL Do to Help With Their Own Care? is unknown
The doctors, nurses, and other healthcare providers who treat you will be experts ■ Night sweats— also a common symptom of
on leukemias; however, it will take a team effort for you to get better, and you will several types of leukemia
be a very important part of that team. Every person is unique, but for many people
with CLL, knowledge is power. It may be helpful for you to learn as much as possible ■ More colds or infections than usual — caused
about CLL and its treatment. Try to maintain a positive attitude, avoid stress, and by abnormal lymphocytes crowding out infection-
remain flexible as you undergo therapy and deal with fighting white blood cells called neutrophils
the effects of the disease. Be sure to ask questions, ■ Swollen glands (lymph nodes)— known as
explore all of the options, and communicate openly lymphadenopathy caused by cancerous
with your treatment team, family, and friends. Focusing lymphocytes building up in the lymph nodes,
on the disease itself and prospects for treatment may where healthy cells normally live and work
make you feel better and more in charge. Taking an to fight infections
active role in your own care will also help you assist
your medical team as they develop your treatment plan. ■ Feeling of fullness— when cancerous lymphocytes collect in the liver or spleen,
these organs may swell and cause a feeling of having a full stomach, sometimes
When Is It Time for Active Treatment? even leading to an increased belt size. Having a swollen spleen is known as
Your body will probably tell you when it is time for treatment. Your healthcare team splenomegaly, and a swollen liver is called hepatomegaly
will do tests and physical exams to help them determine when and how to actively ■ Bruising that’s slow to heal— may happen when lymphocyte buildup interferes
treat your CLL, but they will also need to rely on your reports of any symptoms that with the production of the platelets, the cells in blood that help stop bleeding.
you experience before making decisions. As an active part of the treatment team, A severe lack of platelets is called thrombocytopenia
you should be aware of what is happening to your body and trust your instincts
when you feel that something is wrong. Your doctor may decide to treat only the ■ Bone pain— can happen when the white blood cell buildup pushes on nerves
symptom itself—for example, by prescribing a drug to fight an infection. Sometimes, in the bone or when these cells weaken an area of bone, possibly even causing
however, the appearance of symptoms can mean that your CLL needs to be actively a fracture
treated. So watch for symptoms but don’t wait to discuss them with your doctor or ■ A feeling of ill health
nurse. It’s important for you to remember that effective CLL therapy can offer symptom-
free living and sometimes even a remission for a period of months or even years. ■ Lack of energy

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