2. If you have just been diagnosed
with chronic lymphocytic leukemia (CLL), you may be feeling many different
emotions. Or you may just feel numb. This resource can help you focus on the
next steps you can consider taking to treat your leukemia.
This resource was designed to help you and your loved ones find information
that supports a better understanding of CLL and your treatment options. You’ll
learn the value of working closely with your healthcare team. And you’ll learn
how to do it, by asking the right questions and communicating effectively.
This resource also offers suggestions for managing other important aspects
of your life, such as your relationships, emotional health, work, and finances.
This resource does not take the place of discussions with your healthcare team.
This book is a tool providing information about CLL and questions to consider
when meeting with your healthcare team.
Please note that all words that appear
in italics are listed in the Glossary
at the end of this book.
Let this resource be your
empowering guide,
assisting you on your
treatment journey.
4
8
10
12
16
20
24
28
30
36
38
In this resource you will find information about:
Understanding CLL
Tests You May Have
Stages of CLL
Partnering With Your Healthcare Team
Assessing Your Treatment Options
What To Expect During Treatment
Telling Family and Friends
Coping With Emotions
Managing Finances
Resources
Glossary
3. Understanding CLL
Leukemia is a disease of the blood and bone marrow.
Chronic lymphocytic leukemia (CLL) is one of several
forms of leukemia. In people with CLL, the bone marrow
produces too many abnormal white blood cells. To
understand CLL, you first need to know how blood cells
are made and what they do.
Taking a closer look at blood cells
The body makes blood in the bone marrow. Bone marrow is the soft tissue
inside of some bones. The process starts with the bone marrow making 2 kinds
of immature blood cells:
* Myeloid stem cells
* Lymphoid stem cells
Myeloid stem cells can develop into one of 3 types of mature blood cells:
* Red blood cells: carry oxygen to all parts of the body
* White blood cells: fight infection and disease
* Platelets: prevent bleeding by causing blood to clot
Lymphoid stem cells develop differently. They develop into 3 other types of
mature white blood cells called lymphocytes. The 3 types of lymphocytes are:
* B lymphocytes: make antibodies to help fight infection
* T lymphocytes: help B lymphocytes make antibodies
to fight infection
* Natural killer cells: attack cancer cells and viruses
Understanding CLL
4 5
Bone marrow
White blood cell
Platelet
Red blood cell
4. The CLL patient
The people who more often are diagnosed with
CLL are middle-aged or older. This condition is
also more common in white males, as well
as people of Russian-Jewish or Eastern
European-Jewish descent.
How CLL develops
With CLL, several things may happen:
* Lymphoid stem cells develop into abnormal CLL cells
* CLL cells do not become healthy white blood cells
* CLL cells grow and survive longer than normal cells
* There is uncontrolled CLL cell growth in the bone marrow
* CLL cells crowd out healthy blood cells in the bone marrow and blood
Symptoms may develop slowly over time
In general, CLL slowly gets worse over time. So you may have felt fine at the time of your
diagnosis. In fact, CLL usually is found during a routine blood test as part of a regular
physical exam.
Some people have a faster-growing form of CLL. This form of CLL is more likely to have
symptoms appear earlier. These symptoms may include:
* Swollen lymph nodes in the neck, underarm, stomach, or groin
* Pain or fullness below the ribs from an enlarged spleen
* Recurring infections
Other signs of CLL may include:
* Tiring easily
* Weight loss for unknown reasons
* Shortness of breath during light activity
Questions
to ask your healthcare provider about CLL
• Do I have a slower or faster-growing form of CLL?
• Could the symptoms I’m experiencing be caused by CLL?
• How does the disease progress?
• How long does it take for the disease to progress?
• How can I take care of myself?
• What do I need to know about this disease?
Understanding CLL
6 7
5. Tests to monitor CLL
After the diagnosis, your healthcare provider will use more tests to determine if the
disease has spread in the bone marrow, blood, and other parts of the body.
These tests may include:
* Chest x-ray: Uses an x-ray (a type of energy beam) to take a picture of your
organs, bones, and lymph nodes in the chest area
* MRI (magnetic resonance imaging): Uses a magnet, radio waves, and a
computer to take a series of detailed pictures of an area of the body
* CT scan (CAT scan): Uses a computer (and sometimes injected dye) to take a
series of pictures from different angles
* Blood chemistry studies:
Measures the levels
of certain substances
released into the blood
by organs and tissues.
Abnormal levels can be
a sign of disease in an
organ or tissue
* Antiglobulin test:
Looks for the presence
of antibodies (natural
immune substances) on
the surface of red blood
cells and platelets
Tests to diagnose CLL
Your healthcare provider used certain tests to diagnose your CLL. Tests
to diagnose CLL may include:
*Complete blood count (CBC): Looks at the number of blood cells and other
substances in a blood sample
*Cytogenetic analysis: Looks at changes in the
structure or number of chromosomes (structures carrying genetic
information) in the lymphocytes
*Immunophenotyping: Compares CLL cells to normal cells of the
immune system to diagnose specific types of leukemia
*Bone marrow aspiration and biopsy: The removal
of bone marrow, blood, and bone with a needle
inserted into the hipbone or breastbone
Questions
to ask your healthcare provider about testing
• Why do I need this test?
• Is this test covered by my insurance?
• How is the test done?
• How long will the test take?
• Can I come alone for this test?
Tests You May Have
8 9
6. *Too many lymphocytes in the blood
*No symptoms
*Too many lymphocytes in the blood
*Enlarged lymph nodes
*Too many lymphocytes in the blood
*Enlarged lymph nodes
*Enlarged liver or spleen
*Too many lymphocytes in the blood
*Enlarged lymph nodes
*Enlarged liver or spleen
*Too few red blood cells
*Too many lymphocytes in the blood
*Enlarged lymph nodes
*Enlarged liver or spleen
*Too few red blood cells
*Too few platelets
STAGE O
STAGE I
STAGE II
STAGE III
STAGE IV
Stages of CLL
To choose the right treatment
option for you, your healthcare
provider needs to know the
stage of your disease. Staging
refers to how far the disease has
progressed. The stages of CLL are:
Stages of CLL
10 11
7. Take an active role in your care
Remember that you have a say in setting up your treatment plan. Also, keep in mind
that your healthcare team truly wants to help. But they need your input to help them
do a better job. Ways you can take an active role in your care include:
* Learn all you can about CLL and its treatment. Use only sources you can
trust, such as government and national organizations’ materials and Web sites
* Write out a list of questions and concerns to bring to your appointments.
Put the most important ones at the top of your list
* Tell your healthcare team what information is most important to you,
how much detail you want, and when you want to get the information
* Ask your healthcare team to explain anything that is not clear to you
* Repeat what you heard to make sure you understood it correctly
* Take notes during appointments to review later
* Bring a family member or friend with you to appointments to help you
remember important information
* Talk with a nurse, who may be able to spend extra time answering
your questions
Partnering With Your Healthcare Team
Know your healthcare team
Creating and following your treatment plan is a team effort. It often requires the
skills of different professionals. Talk with your healthcare provider about which
specialists have the training and experience to best serve your needs.
These specialists might include:
*Medical oncologist:
a cancer doctor or physician
*Hematologist:
specializes in treating leukemia
*Nurse Practitioner
*Physician’s Assistant
*Radiation oncologist
*Surgeon
*Oncology nurse
*Registered dietitian
*Physical therapist
*Palliative care specialist:
helps manage symptoms
*Social worker
*Pharmacist
Your healthcare provider may refer you to
a specialist, or you can ask for a referral.
12 13
8. The value of good communication
Good communication with your healthcare provider can help you feel better
about the choices you are making. It also can help you feel more in control.
To help improve communications with your provider, try to:
* Ask as many questions as are needed for you to understand the information
* Ask for a simpler explanation that’s easier to understand
* Focus on getting answers rather than worrying how much time it’s taking
* Ask if there is any other important information you need to know
* Make sure that you completely understand everything your healthcare
provider talked about before you leave
Setting treatment goals
At this time, there is no treatment that can cure CLL. But there are effective treatment
options to help you manage the disease. Now is the time for you take an active role
and “team up” with the healthcare professionals listed on page 12. Be open and
assertive about your goals and concerns. By working closely together, you and your
healthcare team can create a plan that gets you moving toward your goals.
Ask your healthcare team about these goals of CLL treatment:
* Slowing the growth of CLL cells
* Achieving remission: no signs of CLL and/or you feel well enough to continue
with daily activities
* Extending survival time
* Helping you feel better by treating infections, fatigue, or other symptoms
Questions
to ask your healthcare provider about
preparing for treatment
Before you start treatment, you may want to ask:
• What medical records do I need to bring to my treatment session?
• How long will the treatment take?
• Can I go to treatment alone or should someone come with me?
• What are the possible side effects of treatment?
• After treatment, when should I call you about any problems?
Partnering With Your Healthcare Team
14 15
9. Know your treatment options
Depending on the stage of your CLL, your healthcare team may recommend one or a
combination of treatment options listed below. Ask your physician which option is
right for you. Treatment options for CLL include:
* Watchful waiting
- No treatment is given until symptoms appear to change
- An observation period that can last for years for some patients
- Problems other than the disease, such as infection, are treated
* Chemotherapy
- Medicines that kill the CLL cells or stop their growth
- May be taken orally or through a vein (IV)
- Combinations of drugs may be used
* Monoclonal antibodies
- Man-made versions of proteins (antibodies) that help the body’s
immune system (our natural defenses against infection and disease)
fight the leukemia
- Seek out and attack CLL cells without harming normal cells
- Kill CLL cells, stop their growth, or keep them from spreading
* Radiation therapy
- High-energy rays that kill CLL cells
- External radiation uses a machine aimed at a part of the body
- Internal radiation uses radioactive substances sealed in needles, seeds,
wires, or catheters placed into or near a cancerous area
* Surgery
- Splenectomy is the removal of the spleen
- Not curative, but may improve blood counts
- May relieve pressure on internal organs
- People can live without a spleen
* Clinical trials
- Studies using new drugs or new combinations of drugs
that are under investigation
- May include newly-diagnosed patients or patients with
advanced diseases
- Take place all over the country, so they can involve travel
* Stem cell transplant
- A hospital procedure in which people have chemotherapy and
then receive new bone marrow stem cells
- The new stem cells develop into healthy blood cells
- May only be available as part of a clinical trial
Assessing Your Treatment Options
16 17
10. Factors affecting the choice of treatment
The treatment you and your healthcare provider choose depends on:
* The stage of the disease
* Red blood cell, white blood cell, and platelet blood counts
* Whether you have symptoms, such as fever, chills, or weight loss
* Whether there is an enlarged liver, spleen, or lymph node(s)
Consider getting a second opinion
Getting a second opinion from another
oncologist may help you feel more comfortable
with the treatment your current oncologist
recommends. Or it may prompt you to ask
more questions about treating your CLL.
Before you make the appointment, check
with your healthcare provider to see
if it is covered by your insurance.
Questions
to ask your healthcare provider
about treatment options
• What is the stage of my disease?
• What are my treatment options?
• Why are you recommending this option?
• What are the possible risks and benefits?
• What side effects may I have?
• Will I need to stay in the hospital?
• How often is the treatment given or taken?
• How will we know if the treatment is working?
• Is the cost covered by my insurance?
• How will this affect my day-to-day life?
Assessing Your Treatment Options
18 19
11. Set expectations
At certain points during treatment, you may experience some side effects. Side effects
vary with the type and the amount of treatment you receive. They also vary among
individuals receiving the same treatment.
Fortunately, there are effective ways to manage side effects. There are medicines and
strategies you can use to prevent or improve symptoms. Before you start treatment,
ask a member of your healthcare team how to manage the possible side effects of
your treatment.
Prepare for side effects early on
Work with your entire healthcare team to create a plan for managing side effects
before you start treatment. Your team might include nurses, a dietitian, a social
worker, and others. Ask your healthcare provider what other specialists should be
on your team and how they may assist you throughout treatment.
What to Expect During Treatment
Some common side effects you
may have during treatment:
• Fatigue: feeling weak or tired
• Nausea/vomiting: upset stomach and loss of appetite
• Diarrhea: loose stools and problems with bowel control
• Hair changes: hair loss, possible changes in color and
texture when it grows back
• Bruising/bleeding easily: due to damage or loss of
healthy blood cells
• Increased risk of infection: due to lower levels of normal
white blood cells
20 21
12. Getting supportive care
Both your leukemia and treatment can lead to other health problems. These problems
may include getting infections and bleeding more easily. Supportive care can help
prevent or manage these problems. Examples of supportive care include:
* Antibiotics: To protect you from infections
* Possible advice from your healthcare team: To avoid crowds and people with
colds and other contagious diseases
* Blood transfusions: To treat anemia (low red blood cell levels) and its symptom
of feeling tired
Questions
to ask your healthcare provider
about side effects
• What are the possible side effects of my treatment?
• Is there medicine I can take to prevent or manage the side effects?
• Will I need to make special arrangements at home or with work
due to side effects?
• When should I call you if I am having side effects?
• Whom can I contact if I can’t reach you?
• Will I need to stay in the hospital?
What to Expect During Treatment
22 23
13. How to answer “What can I do to help?”
Patients hear this question a lot. Your first reaction may be to say that you don’t need
any help right now. Remember that your loved ones truly want to support you and be
useful to you. You can tell them they can help by:
* Just being themselves around you
* Listening to your problems without offering solutions
* Being at ease with you and not worrying about upsetting you
* Remembering you are the same person
You can also answer this question by being very specific about help you may need
now or in the future. For example, you can ask for help with:
* Taking care of children and pets
* Food shopping and cooking
* Providing rides to medical appointments
* Housecleaning
* Yard work
Telling Family and Friends
Talking with loved ones
Discussing your illness may be more difficult with a loved one than it is with someone
you’re not close to. But this is a step you should consider taking. It’s also a step that
can help you accept the reality of your situation and then move forward.
Getting started
Before you talk with your loved ones, think about whom you need to tell and how
much information you want to share. It may help to:
* Make a list of the people closest to you whom you need to tell in person
* Make a list of people less close to you who could be told by another
family member or friend
* Decide how often you can handle explaining your illness, treatment, and
prognosis (outlook). Have the name of a reliable Web site (see Resources section)
for them to visit for more information
*Identify “trigger points” or topics that are too sensitive for you to discuss. Plan a
way to quickly change the subject to something that’s easier to talk about
Hold a family meeting
You may find that talking one-on-one with your loved ones
is too hard. A social worker or trained counselor may be able
to help organize a family meeting for you. This may help
family members express their feelings more freely.
24 25
14. Changing roles
When a family member is ill, you may see changes in the roles and responsibilities of
different family members. Some changing roles and responsibilities include:
* Children may be asked to do more chores around the house
* A spouse or partner may take over bill paying, shopping, or yard work
* A spouse or partner may feel a need to get a job
When you’re used to being in charge and independent, it can be hard to ask for help.
Remember that by taking on new roles or responsibilities, family members often feel
they are supporting your efforts to fight your disease.
Keeping relationships strong
Sometimes relationships can grow stronger in
difficult times like these. To maintain an open and
honest relationship with your spouse or partner,
keep these suggestions in mind:
* As much as possible, try to keep your
relationship the way it was before your illness
* Express your feelings by talking more. Work with a
counselor if this is hard for you
* Be realistic about demands. Acknowledge any stress or guilt he
or she may have about time spent away from you
* Spend time apart. Give your spouse or partner time and space for his or her own
needs and to regain energy needed to support you
* Talk openly and honestly about changes in your sex life. A counselor can help
guide this discussion
Use the Web to stay connected
If you are comfortable sharing your updates with family and
friends, consider using the Internet. You may want to ask a
computer-savvy friend or family member to help you set up a
Web site or blog. This is an efficient way to give updates on your
medical status to family members and friends near and far.
Telling Family and Friends
26 27
15. Acknowledging your feelings
Because of your illness, you’ve likely experienced a range of emotions, from shock,
to fear, to denial. Keep in mind: It’s okay to feel a lot of emotions. Many patients feel
anxiety or depression. But when these emotions disrupt your daily life, it may be time
to seek help.
Talk with your healthcare provider about any signs of anxiety you notice,
which may include:
* Feeling tense and nervous
* Racing heartbeat
* Trouble breathing or catching your breath
* Having a lump in your throat or a knot in your stomach
If you have symptoms of depression that last more than 2 weeks, tell your healthcare
provider. These symptoms may include:
* Feeling helpless or hopeless
* Loss of interest in relationships and things you used to enjoy
* Loss of appetite
* Feeling short-tempered and grouchy
* Crying for long periods of time or many times a day
* Feeling “wired,” having racing thoughts or panic attacks
* Having trouble sleeping, such as sleeping too little, too much,
or having nightmares
Sharing your emotions
Sharing your feelings with others can help you be
more comfortable with these feelings. Start with
talking to your loved ones. If this is difficult, you can
reach out to others who know effective ways to help
you cope. These people might include:
* Members of your healthcare team
* Health psychologists
* Oncology social workers
* Other mental health experts
* Faith or spiritual counselors
Joining a support group
As alone as you may sometimes feel, remember that many other people are facing
similar challenges. You can connect with these people by joining a support group.
Some groups meet in person, by phone, or over the Internet. Hearing other people’s
stories can give you valuable insight into how to cope with your emotions.
Some group members prefer to simply listen and not talk. And that’s fine.
Your healthcare team may be able to direct you to a local support group.
Coping With Emotions
28 29
16. Taking a medical leave
Depending on the kind of treatment you receive, you may need to take some time
off from work. If you and your employer qualify under the Family and Medical Leave
Act (FMLA), you have the right to take an unpaid, job-protected medical leave with
continued health insurance coverage. The amount of time you are allowed to take off
can vary. Talk to your social worker or your human resources department at work to
get more details.
Having treatment can create some financial challenges for you and your family. Some
of these challenges may include:
*Less household income because you need to work less
or stop working
*Expensive or unaffordable treatment
*Treatment that is not fully covered by insurance
*Prescription drugs that are not covered by insurance
*Extra out-of-pocket expenses associated with some
treatments, such as transportation, childcare, lodging,
and in-home assistance
Ask your healthcare provider about
the cost of treatment up front
You will worry less when you face financial issues early on. Ask about the cost of the
treatment or medicine your healthcare provider recommends. Knowing the cost early
on gives you time to plan for any extra expenses.
Appoint a financial advocate
During treatment, you may not have enough time or energy
to manage your finances. You may want to consider asking a
family member or close friend to help you stay on top of bills,
insurance paperwork, and other financial matters. Knowing
you have someone in charge of your finances might improve
your peace of mind during this stressful time.
Managing Finances
30 31
17. Know your health insurance coverage
It is important to understand your insurance coverage. Since insurance plans often
change, it’s a good idea to review your coverage from time to time. Some important
costs you need to know include:
* Premium: The cost of the plan. Usually paid each month
* Deductibles: The fixed amount of annual expenses you need to pay before
insurance pays for it
* Co-payments: A fixed dollar amount you pay at the time of medical service
or when you pick up a prescription medicine
* Co-insurance: The percentage of expenses you share with your health plan.
For example, you may pay 20% and the plan pays 80%
* In-network and out-of-network: The cost of using a healthcare provider who is
in your plan’s network is usually much less than the cost of a provider who is not
in your plan’s network
* Lifetime maximum or “cap:” The most amount of money a plan will pay
while you are enrolled in the plan during your lifetime
When you don’t have enough coverage
If your insurance doesn’t fully cover the cost of your treatment or prescription
medicine, you still have options. Ask your healthcare team how you can find
out about:
* Patient assistance or prescription assistance programs through
pharmaceutical manufacturers
* Prescription discount/savings programs, such as Together Rx Access® Card
and state programs through the National Association of Counties
* Participating in a clinical trial in order to receive free or discounted
study medicine
* Co-pay assistance programs and foundations that help pay co-pay fees
or insurance premiums
When you don’t have private insurance
Ask your social worker if you may be eligible for benefits under a public program
funded by the government. These programs pay for health insurance, disability
benefits, or make cash payments to qualified patients. Ask if you may qualify for:
* Medicare
* Medicaid
* Veterans benefits
* Social Security Disability Income (SSDI)
* Supplemental Security Income (SSI)
Request a case manager from your insurance company
Find out if your insurance company can provide a case
manager to assist you. He or she will be the only person you
need to speak with about claims and your policy.
Managing Finances
32 33
18. Getting financial assistance
You can get financial aid for expenses related to your treatment in different ways.
A good first step is partnering with the financial services department at your
treatment center. They can help you get the most out of your insurance coverage.
You may also use these strategies for financial aid:
* Work with your healthcare provider to create a payment schedule
you can manage
* Apply for grants or financial aid from employers, labor unions,
community service organizations, religious or fraternal groups, or
cancer support organizations
Coverage Through COBRA
The Consolidated Omnibus Budget Reconciliation Act (COBRA)
allows people who lose, leave, or change jobs to
continue with their former employer’s insurance plan
for 18 to 36 months. This can help them have better coverage
for less money than they might have with an individual plan.
Ask your social worker or the human resources department
at work to give you more details.
Questions
to ask your healthcare provider
about managing finances
• What will be the cost of this treatment?
• Is this treatment expensive?
• Is there a similar treatment?
• Do you know if my insurance plan covers this treatment?
• Who can help me find out if I’m covered for this treatment?
• Do you know of any financial assistance programs for this treatment?
• Could I get this kind of treatment at a lower cost if I join a clinical trial?
• Is there any way the cost of this treatment could be
adjusted to match my financial situation?
• If I need to pay for treatment, can we work out a monthly
payment schedule that would not be a large financial burden to me?
Managing Finances
34 35
19. This is a list of helpful resources.
Please note that this was accurate
at the time of publication, but is
subject to change without notice.
Ask your healthcare team to
recommend more resources.
A national organization that provides information about cancer treatment and
support services for people with cancer and their loved ones.
www.cancer.org 1-800-227-2345
Information about clinical trials is provided by the National Cancer Institute, an agency
of the National Institutes of Health.
www.cancer.gov/clinical_trials
A worldwide voluntary agency that funds blood cancer research and provides
information and services for people with a blood cancer and their loved ones.
LLS gives patients access to the latest individual therapy options and blood cancer
clinical trials, financial assistance programs, and local support groups.
www.lls.org 1-800-955-4572
An agency of the National Institutes of Health, the NCI provides in-depth information
about many kinds of cancer and offers information about clinical trials.
www.cancer.gov 1-800-4-CANCER (1-800-422-6237) TTY: 1-800-332-8615
A national organization offering free information and support services to cancer
patients, their loved ones, caregivers, and the bereaved. CancerCare provides access
to educational publications and workshops, financial assistance programs, support
groups, and individual counseling with oncology social workers.
www.cancercare.org 1-800-813-HOPE (4673)
American
Cancer Society
Clinical trials
Leukemia &
Lymphoma
Society
National Cancer
Institute
CancerCare
Resources
36 37
20. Chemotherapy (KEE-moh-THAYR-uh-pee)
Treatment with drugs that kill cancer cells.
Chronic leukemia (KRAH-NIK LOO-kee-MEE-UH)
A slowly progressing cancer that starts in blood-forming tissue such as the bone
marrow, and causes large numbers of white blood cells to be produced and enter
the bloodstream.
Chronic lymphocytic leukemia (KRAH-nik LIM-foh-SIH-tik loo-KEE-mee-uh)
A slow-growing type of leukemia (blood cancer) in which too many lymphoblasts
(immature white blood cells) are found in the blood and bone marrow. Also called
chronic lymphoblastic leukemia.
Clinical trial
A type of research study that tests how well new medical approaches work.
Complete blood count (CBC)
A test to check the number of red blood cells, white blood cells, and platelets
in a sample of blood.
Cytogenetics (SY-toh-jeh-NEH-tix)
The study of chromosomes and chromosome abnormalities.
Hematologist (HEE-muh-TAH-loh-jist)
A doctor who specializes in treating blood disorders.
Immune system (ih-MYOON)
The complex group of organs and cells that defends the body against infections
and other diseases.
Glossary
Anemia (a-NEE-mee-a)
A condition in which the number of red blood cells is below normal.
Biopsy (BY-op-see)
The removal of cells or tissues, such as bone marrow, for examination by a
pathologist. The pathologist may study the tissue under a microscope or perform
other tests on the cells or tissue.
Blood
A tissue with red blood cells, white blood cells, platelets, and other substances
suspended in fluid called plasma. Blood takes oxygen and nutrients to the
tissues, and carries away waste.
Bone marrow (MAYR-oh)
The soft, sponge-like tissue in the center of most bones. It produces white blood
cells, red blood cells, and platelets.
Bone marrow aspiration (MAYR-oh as-pih-RAY-shun)
The removal of a small sample of bone marrow (usually from the hip) through a
needle for examination under the microscope.
Cancer
A term for diseases in which abnormal cells divide without control.
38 39
Many of the following definitions are listed in the book, What You Need to Know
AboutTM
Leukemia, which you can access for free on the National Cancer Institute (NCI)
Web site at www.cancer.gov. To find more definitions, visit the NCI Dictionary of Cancer
Terms at www.cancer.gov/dictionary.
21. Leukemia (loo-KEE-mee-uh)
Cancer that starts in blood-forming tissue such as the bone marrow and causes
large numbers of blood cells to be produced and enter the bloodstream.
Lymph nodes (limf)
Rounded masses of lymphatic tissue. Lymph nodes filter lymph (lymphatic fluid)
and store white blood cells. They are located along a system of lymphatic vessels.
Also called lymph glands.
Lymphocytic (LIM-foh-SIH-tik)
Referring to lymphocytes, a type of white blood cell.
Medical oncologist (MEH-dih-kul on-KAH-loh-jist)
A doctor who specializes in diagnosing and treating cancer using chemotherapy,
hormonal therapy, and biological therapy. A medical oncologist is often the main
healthcare provider for someone who has cancer.
Monoclonal antibodies (MAH-no-KLOH-nul AN-tih-BAH-deez)
A cancer treatment that uses natural substances made in the laboratory that help
the body’s immune system fight cancer. These substances seek out cancer cells and
kill them, block their growth, or prevent them from spreading.
Oncology nurse (on-KAH-loh-jee)
A nurse who specializes in treating and caring for people who have cancer.
Pathologist (puh-THAH-loh-jist)
A doctor who identifies diseases by studying cells and tissues using a microscope.
Remission
A decrease in or disappearance of signs and symptoms of cancer. In partial
remission, some, but not all, signs and symptoms of cancer have disappeared.
In complete remission, all signs and symptoms of cancer have disappeared,
although cancer still may be in the body.
Spleen
An organ that is part of the lymphatic system. The spleen makes lymphocytes,
filters the blood, stores blood cells, and destroys old blood cells. It is located on the
left side of the abdomen near the stomach.
Stem cell
A cell from which other cells develop. For example, blood cells develop from
blood-forming myeloid and lymphoid stem cells.
Supportive care
Also called palliative care, comfort care, and symptom management.
Care given to improve the quality-of-life of patients who have a serious
or life-threatening disease.
Watchful waiting
Closely monitoring a patient’s condition but withholding treatment until
symptoms appear or change. Also called observation.
White blood cell (WBC)
Refers to a blood cell that does not contain hemoglobin. White blood cells are
made by bone marrow and help the body fight infections and other diseases.
Glossary
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22. Notes Healthcare Contact Information
Use this page to list the contact information of your
healthcare team
Name
Specialty
Address
Phone number
Name
Specialty
Address
Phone number
Name
Specialty
Address
Phone number
Other important numbers
Case manager
Physical therapist
Spiritual advisor
Pharmacy
Hospital
Emergency contact
Emergency contact
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