Download Acute Myelogenous Leukemia: A Guide for Patients and Caregivers

Acute Myelogenous Leukemia:
A Guide for Patients and
Caregivers
LE UK E M I A
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possible by an education grant from
LYMPHOMA
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Introduction
Table of Contents
Acute myelogenous leukemia (AML) is a type of blood cancer.
Another name for AML is acute myeloid leukemia.
About 138,500 people in the United States are expected
to be diagnosed with a blood cancer in 2008. About 13,300
people in the United States are expected to be diagnosed
with AML in 2008.
This booklet is for patients with AML, their families and
caregivers. It will help patients, families and caregivers learn
about AML and how it is treated.
For more information on AML, order the free
LLS booklets Understanding Leukemia and
Acute Myelogenous Leukemia.
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PS66 35M 4/08
Inside
Booklet
TableThis
of Contents
Understanding Acute Myelogenous Leukemia (AML)
3
Treatment for AML
11
Side Effects of Treatment for AML
24
Coping with AML
33
What Should I Ask the Doctor?
36
We’re Here to Help 38
Medical Terms
39
Some words in the booklet may be new to you.
Check Medical Terms at the back of this booklet.
Or call LLS at (800) 955-4572.
This booklet from The Leukemia & Lymphoma Society (LLS) is for information only.
LLS does not give medical advice or medical services.
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Understanding Acute Myelogenous
Leukemia (AML)
AML is a type of cancer that starts in the marrow. Before you read
more about AML it will help to know a little about blood cells and
marrow.
About Marrow, Blood and Blood Cells
Marrow is the spongy center inside of bones.
Blood cells are made in the marrow. Blood cells begin as stem
cells. Stem cells become red cells, white cells and platelets in
the marrow. Then the red cells, white cells and platelets enter
the blood.
Platelets prevent bleeding and form plugs that help stop
bleeding after an injury.
Red cells carry oxygen around the body. When the number
of red cells is below normal this is called anemia. Anemia can
make you tired, pale or short of breath.
White cells fight infection in the body. There are 2 major types
of white cells: germ-eating cells (neutrophils and monocytes)
and lymphocytes.
Plasma is another part of the blood. It is mostly water. It also
has some vitamins, minerals, proteins, hormones and other
natural chemicals.
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What is a normal blood cell count?
Introduction 2
The ranges
of Cell
blood
cell counts below are for adults. They
Overview
of Stem
Transplantation
3 may
be a little different from lab to lab and for children and teens.
Normal Blood and Marrow 7
Red blood cell (RBC) count
Stem Cell Transplantation and Cancers of the Blood and Marrow
• Men: 4.5 to 6 million red cells per microliter of blood
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Testing to Identify Donors 12
• Women: 4 to 5 million red cells per microliter of blood
Collecting Stem Cells for Transplantation or Infusion
14
Hematocrit (the percent of the blood made up of red cells)
• Men: 42%
to 50%
T-lymphocyte
Depletion
17
• Women: 36% to 45%
Types of Stem Cell Transplantation 18
Hemoglobin
The Autologous Stem Cell Infusion (Autotransplant) Process
19
The Allogeneic Stem Cell Transplantation Process
21
Side Effects of the Conditioning Regimen
24
• Men: 14 to 17 grams per 100 milliliters of blood
• Women: 12 to 15 grams per 100 milliliters of blood
Platelet count
• Versus
150 toHost
450Disease
thousand platelets per microliter of blood 26
Graft
Reduced-intensity
Allogeneic
Stem
Cell Transplantation White blood cell
(WBC)
count
29
• 4.5 to 11 thousand white cells per microliter of blood
Leaving the Hospital 32
Differential (also called diff)
Aftercare 33
• This shows the percents of different types of white cells in
Research and Clinical Trials
34
the blood. The types of white cells counted are neutrophils,
eosinophils, and basophils. 35
Usually,
Social lymphocytes,
and Emotional monocytes,
Effects
adults have about 60% neutrophils, 30% lymphocytes, 5%
Glossary
37
the blood.
Resources
53
monocytes, 4% eosinophils and less than 1% basophils in
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Normal Marrow Cells and AML
Blast Cells
B
A
Panel A shows different types of normal marrow cells
seen through a microscope. These normal cells are in
various stages of development.
Panel B shows AML blast cells seen through a
microscope. These cells have stopped developing.
The marrow is filled with blast cells that do not develop
properly.
The cells shown in panels A and B are much larger than
actual cells. The cells are also stained with a special dye
so they can be seen more clearly.
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Causes
Table of Contents
People can get AML at any age. The chance of getting AML
increases with age. About 1 in 6 children with acute leukemia
has AML. In most cases doctors do not know what causes a
healthy cell to change to an AML-cell.
Some things that may increase the risk of getting AML are
• Some types of chemotherapy
• Radiation used to treat cancer
• Down syndrome
• Tobacco smoke
• Repeated exposure to the chemical benzene.
Benzene damages the DNA of normal stem cells. Tobacco
smoke is now the leading known source of benzene exposure.
Benzene is also found in certain industrial settings. There is strict
regulation in the U.S. and other countries that limits workplace
benzene exposure.
Most people with these risks do not get AML.
You cannot catch AML from someone else.
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Signs and Symptoms
The signs and symptoms for AML are common to many illnesses.
A person with AML may have
• Aches in legs, arms or hips
• Black-and-blue marks without clear cause
• Enlarged lymph nodes
• Mild fever
• Pale-looking skin
• Pinhead-size red spots under the skin
• Prolonged bleeding from minor cuts
• Shortness of breath during physical activity
• Slow-healing of cuts
• Swollen gums
• Tiredness or no energy.
Diagnosis and Type of AML
To diagnose AML, a blood test is done to
• Count the numbers of red cells, white cells and platelets
• See if there are any AML-cells.
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A bone marrow aspiration and a bone marrow biopsy are tests
used to
• Take a close look at AML-cells
• Find out how many AML-cells are in the marrow
• Identify the patient’s type of AML.
The cells are looked at under a microscope. Doctors use the
sample of cells from the aspiration to see the types of cells—for
example, blast cells. The sample can also be used for cytogenetic
analysis and immunophenotyping.
Cytogenetic analysis is a lab test to examine the
chromosomes of the AML-blast cells. Each cell in the
body has chromosomes that carry genes. Genes give the
instructions that tell each cell what to do.
Immunophenotyping is a test that is used to find the type
of AML.
It is important to know what type of AML a person has.
Knowing the patient’s AML type helps the doctor to plan
treatment. Patients with acute promyelocytic leukemia (APL)
need different treatment than patients with other types of AML.
More information about APL treatment is on page 19.
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Types of AML
There are 8 types of AML—M0 to M7. You may hear your
doctor talk about some of these types.
• M0, M1 and M2 are all myeloblastic leukemia. Most people
with AML have one of these types.
• M3 is acute promyelocytic leukemia (APL). About 1 in 10
adult AML patients has the APL type.
• M4 is acute myelomonocytic leukemia. About 1 in 5 AML
patients has this type.
• M5 is acute monocytic leukemia. About 15 out of 100 AML
patients have this type.
• M6 is acute erythroleukemia and M7 is acute megakaryocytic
leukemia. These types are rare.
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How Are the Blood and Bone Marrow
Tests Done?
For a blood test usually a small amount of blood is taken from
the patient’s arm with a needle. The blood is collected in tubes
and sent to a lab.
A bone marrow aspiration is done by removing a sample of cells
from the marrow. A bone marrow biopsy is done by removing a
very small amount of bone filled with marrow cells.
Both tests are done with a special needle. Some patients are
awake for the procedure. They get medication first to numb
the part of the body that will be used to get the sample of cells.
This is usually the patient’s hip bone. Some patients are sedated
(asleep) for the procedure.
Blood and marrow tests may be done in the doctor’s office or in a
hospital. A bone marrow aspiration and biopsy are almost always
done together.
Blood and marrow tests are also done to see if treatment is
destroying AML-cells.
The doctor uses information from all of the tests to decide
the type of treatment a patient needs. The type and length of
treatment may also depend on the patient’s age.
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Treatment for AML
It is important to get medical care in a center where doctors
are experienced in treating patients with AML. You can ask
your doctor how much experience he or she has treating AML
patients.
The goal of treatment for AML is to cure the disease. AML
is not easy to cure. Children have the best chance for a cure.
Almost half of children with AML are cured. Treatment does not
cure most adults with AML. But there has been improvement in
treatment results in recent years. Patients and caregivers should
talk to their doctors about getting treatment in a clinical trial.
Patients with acute promyelocytic leukemia (APL) have higher
cure rates overall compared to adults with other AML types.
There are 3 parts of treatment for AML, called induction
therapy, consolidation therapy and intensification therapy.
Induction therapy is explained on page 12. Consolidation
therapy and intensification therapy are explained on page 16.
11
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To decide the best treatment for the patient, the doctor considers
the patient’s
• Age
• General health
• AML type and if there are AML-cells in the spinal fluid
The doctor also considers if the patient’s AML-cells have
changes to chromosomes or genes—for example, about 1/3 of
AML patients have a change to the FLT3 gene in their AMLcells. Patients with a change to the FLT3 gene may need different
treatment than patients with a lower-risk type of AML.
Induction Therapy
Induction therapy is the first part of treatment with
chemotherapy. AML patients need to start induction
chemotherapy right away. Induction therapy is done in the
hospital. Patients are often in the hospital for 4 to 6 weeks for
this first part of treatment.
The aim of induction therapy is to
• Kill as many AML-cells as possible
• Get blood counts back to normal
• Get rid of all signs of the disease for an extended period of
time.
When there is no sign of AML this is called a remission.
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Chemotherapy is treatment with drugs that kill or damage
cancer cells. Some drugs are given by mouth. Most drugs are
given through a central line, port or PICC. Two or more drugs
may be used together for induction therapy.
Several types of drugs are used to kill AML-cells.
Each drug type works in a different way to kill the cells.
Combining drug types can strengthen the effects of the
drugs. Some of the drugs used to treat AML are listed on
page 15.
The first round of chemotherapy usually does not get rid of all
the AML-cells. Most patients will need more induction therapy.
Usually the same drugs are used for more rounds of treatment to
complete induction therapy.
Some drugs are approved for special uses. For example:
• All-trans retinoic acid (ATRA, tretinoin, Vesanoid®) and
arsenic trioxide (Trisenox®) are used to treat patients with
acute promyelocytic leukemia (APL)—a type of AML.
• Clofarabine (Clolar®) is approved for children (1 to 21
years) with acute lymphocytic leukemia (ALL) who have
not responded to other treatments. It is being studied as a
treatment for adults and children with AML.
• Gemtuzumab ozogamicin (Mylotarg®) is approved to treat
some relapsed AML patients 60 years and older. Mylotarg
is being studied as a treatment for some APL patients and
relapsed patients with other types of AML.
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New drug combinations are being studied. New uses for
approved drugs are also being studied. See page 30 for more
information about treatments under study.
Central Lines, Ports and PICCs
Central lines, ports or PICCs can be used to give medications,
nutrition and blood cells. They can be used to take blood
samples too. Central lines, ports and PICCs can stay in place
for weeks or months. You can talk to your doctor about the
best one for you or your child to use.
Central Line
This is a thin tube that is put under the skin and into a large
vein in the chest. The central line stays firmly in place. Another
word for central line is “catheter.”
Port
A port is a small device that is used with a central line
(catheter) to access a vein. The port is placed under the skin
of the chest. After the site heals, no dressings are needed and
no special home care is needed. To give medicines or nutrition,
or to take blood samples, the doctor or nurse puts a needle
through the skin into the port. A numbing cream can be put on
the skin before the port is used.
PICC or PIC Line
A PICC or PIC line is short for “percutaneously inserted central
venous catheter.” This type of catheter is inserted through a
vein in the arm.
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Some Drugs Used to Treat AML
Anti-tumor Antibiotics
DNA Repair Enzyme
• daunorubicin (Cerubidine®)
Inhibitors
• doxorubicin (Adriamycin®)
• etoposide (VP-16; VePesid®;
Etopophos®)
• idarubicin (Idamycin®)
• mitoxantrone (Novantrone®)
• teniposide (VM-26;
Vumon®)
Antimetabolites
Cell-Maturing Agents
• cytarabine (cytosine
arabinoside; ara-C;
Cytosar-U®)
• all-trans retinoic acid
(ATRA; tretinoin;
Vesanoid®)*
• cladribine (2-CdA;
Leustatin®)
• arsenic trioxide (Trisenox®)*
• fludarabine (Fludara®)
Monoclonal Antibody
• hydroxyurea (Hydrea®)
• gemtuzumab ozogamicin
(Mylotarg®)*
• 6-mercaptopurine
(Purinethol®)
Hypomethylating Agents
• methotrexate
• thioguanine (Tabloid®)
• clofarabine (Clolar®)*
• azacitidine (Vidaza®)
• decitabine (Dacogen®)
*Approved for special uses
(see page 13).
Information about side effects begins on page 24.
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Radiation Therapy
Sometimes radiation therapy may be used to treat a large mass
of AML-cells in the spine or brain called a chloroma.
Consolidation and Intensification Therapy
More treatment is usually needed even after an AML patient is
in remission. Some AML-cells may remain that are not found by
common blood or marrow tests. These parts of AML treatment
are called consolidation therapy and intensification therapy.
Chemotherapy is part of consolidation therapy for
AML. More chemotherapy—and in some cases a stem cell
transplant—are part of intensification therapy for AML
patients. Stem cell transplants are explained beginning on
page 17.
The doctor considers many things to decide what type of
consolidation and intensification therapy the patient needs,
such as:
• The patient’s overall health
• Certain changes to the genes in the AML-cells
• The availability of a stem cell donor.
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Patients stay in the hospital for consolidation therapy. The length
of time in the hospital depends on the treatment and any side
effects to treatment. Patients are often in the hospital for 4 to 6
weeks. Some patients may need to be in the hospital longer. For
intensification therapy, the length and treatment setting (hospital
or outpatient) depend on the intensification treatment plan.
Allogeneic Stem Cell Transplants (Allotransplants)
Allotransplants are used to treat some AML patients.
There are 2 reasons for doing allotransplants. They are
• To give strong doses of chemotherapy to kill more AMLcells
• To give the patient the donor immune cells to attack any
AML-cells that remain.
When the donor cells attack the AML-cells it is called graft
versus leukemia or GVL.
Allotransplants are done in the hospital. First, the patient is
given high-dose chemotherapy and/or radiation therapy. Stem
cells are taken from a donor. The donor can be a brother or
sister. Or the donor can be another person with stem cells that
“match” the patient’s. The donor stem cells are given to the
patient through an IV (intravenous) line or central line. The
donor stem cells go from the patient’s blood to the marrow and
help start a new supply of red cells, white cells and platelets.
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An allotransplant may be a choice for an AML patient if
• He or she has a type of AML that is hard to treat.
• The expected benefits of an allotransplant exceed the risks.
Doctors will discuss these with patients and parents of young
children with AML.
• There is a stem cell donor.
Allotransplants are a high-risk procedure.
For this reason, allotransplants may not be a good
treatment for some AML patients.
AML patients who get an allotransplant are usually between the
ages of 1 and 55. Doctors are studying a type of allotransplant
called reduced-intensity stem cell transplant (nonmyeloablative
transplant). It may be helpful for older patients or sicker
patients. More information about reduced-intensity stem cell
transplants is on page 33.
Autologous Stem Cell Infusions (Autotransplants)
Patients who do not have a matched donor for an allotransplant
and have not responded well to treatment may get very high
doses of chemotherapy and an autotransplant.
The patient’s own stem cells are used for an autotransplant.
Stem cells are taken from the patient’s blood or marrow and
stored before chemotherapy begins. They are infused back into
the patient’s blood after chemotherapy ends.
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The goal of an autotransplant is to restore the body’s
ability to make normal blood cells after high-dose
chemotherapy.
Cord Blood Stem Cell Transplants
The stem cells used for transplants can come from blood or
marrow—or from the blood in the umbilical cord after a baby’s
birth. A cord blood stem cell transplant may help patients who
need an allotransplant, but do not have another source of stem
cells.
Donated cord blood for transplants is collected from the
umbilical cord and placenta after a baby is delivered. The cord
blood is screened. If it meets standards, it is frozen and stored at
a cord blood bank for future use.
The free LLS booklet Blood and Marrow Stem
Cell Transplantation has more details on
allotransplant and autotransplant.
Acute Promyelocytic Leukemia (APL) Treatment
APL is the most curable subtype of AML. Patients with APL
need different treatment than patients with other AML subtypes.
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APL patients are treated with the drug all-trans retinoic acid
(ATRA). ATRA is given with chemotherapy. This treatment
brings many APL patients into remission.
Arsenic trioxide (ATO) is another drug used to treat APL
patients. ATO may be given to patients whose APL has returned,
or cannot be brought under control, with chemotherapy and
ATRA.
Other treatments are under study for APL patients:
• ATRA and ATO without chemotherapy. This treatment is
being studied for low-risk APL patients. ATRA and ATO,
combined with the drug Mylotarg®, is being studied in patients
with high-risk APL.
• Some high-risk APL patients may be treated with an
allotransplant or an autotransplant. Information about
transplants begins on page 17.
Acute Monocytic Leukemia Treatment
Some patients with acute monocytic leukemia may need more
treatment than patients with other AML subtypes.
AML-cells can invade the lining of the spinal canal or brain.
This complication is uncommon for most other types of AML.
The risk is greater for patients with acute monocytic leukemia.
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A spinal tap (also called a lumbar puncture) is used to check the
spinal fluid for AML-cells. The spinal cord and brain are parts of
the body that aren’t easily reached with IV chemotherapy. These
parts of the body are treated by injection into the spinal fluid.
When treatment is needed, a spinal tap (lumbar puncture) is
done. A needle is placed into the spinal canal in the lumbar
area (the lower part of the spine below the spinal cord). Then
spinal fluid is removed and chemotherapy (usually cytarabine) is
injected into the spinal canal. Radiation therapy may be given to
the spine or brain. Sometimes both chemotherapy and radiation
therapy are used. Spinal taps are done from time to time to
check if AML-cells are being killed.
AML Treatment in Children
There are about 3,800 new cases of childhood leukemia each
year in the U.S. About 1 in 6 children with acute childhood
leukemia has AML.
Induction therapy for children with AML starts with 2 or 3
drugs.
More treatment is needed after a child with AML is in remission.
This is called consolidation and intensification therapy. It
is given because some AML-cells may remain after induction
therapy. These AML-cells do not show up in standard blood
or marrow tests. Consolidation and intensification therapy in
children include a number of chemotherapy drugs.
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About 4 out of 5 children with AML go into remission.
About half of children with AML have no signs of disease
after 5 years. Most of these children are considered cured.
AML treatment is less likely to bring about a remission or cure
when children
• Have AML with very high white cell counts
• Are younger than 1 year of age
• Have certain chromosomes in their AML cells that are not
normal.
Allotransplants may be used in children who are not doing
well—or whose AML returns after high-dose chemotherapy
(called a relapse). Doctors will discuss the benefits and risks of
transplant with parents and older children.
AML Treatment in Older Patients
AML is more common in older patients. At least half of patients
are over 65 years old when their disease is diagnosed.
Today cures are possible for some older people with AML,
including those who may have other serious health problems.
But treatment results in adults are not as good as treatment
results in children.
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Healthy older patients can be treated with chemotherapy.
The type and dose of drugs may be changed for older
patients with other health problems.
Some healthy older patients can be treated with the same doses of
chemotherapy as younger adults. Sometimes older patients have
other medical problems, such as heart disease, kidney or lung
disease or diabetes. The doctor takes these other medical problems
into account to decide which drugs to use and in what dose.
The doctor will also consider
• The type of AML
• The patient’s physical ability to handle the treatment
• The patient’s feelings about the treatment approach.
Doctors are studying a type of allotransplant, called a reducedintensity transplant. This may be a good treatment for some
older adults. See page 33 for more information.
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Side Effects of Treatment for AML
The aim of treatment for AML is to kill AML-cells. Treatment
for AML also affects healthy cells. The term side effect is used
to describe how treatment affects healthy cells. Side effects for
AML treatment may be severe, but they usually go away once
treatment ends. Ask your doctor about the side effects to expect
from your treatment.
Treatment Side Effects—Blood Cell Counts
• The number of red cells may decrease (anemia). Red cell
transfusions (red cells that are donated and given to the
patient) may be needed to increase red cell counts.
• Patients also may have a drop in the number of platelets. A
platelet transfusion may be needed to prevent bleeding if a
patient’s platelet count is very low.
• A big drop in the number of white cells may lead to an
infection. These infections are usually treated with antibiotics.
Fever or chills may be the only signs or symptoms of infection.
Patients with an infection may also have
• Coughing
• Sore throat
• Pain when urinating
• Frequent loose bowel movements.
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Growth factors are sometimes given to increase white cells.
G-CSF (Neupogen®) and GM-CSF (Leukine®) are drugs that
increase the number of white cells.
Growth factors are only given to children in certain cases.
Scientists are studying which children with AML are most
likely to be helped by treatment with growth factors to prevent
infection.
To lower the risk of infection
• The patient, the patient’s visitors and medical staff need to
wash their hands well.
• The patient’s central line must be kept clean.
• Patients on chemotherapy should take good care of their teeth
and gums.
The doctor may talk about the absolute neutrophil count or
ANC, which is the number of neutrophils (a type of white cell) a
person has to fight an infection.
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Other Treatment Side Effects
Chemotherapy affects the parts of the body where new cells
form quickly. This includes the inside of the mouth and bowel,
and the skin and hair. The side effects listed here are common
during chemotherapy:
• Mouth sores
• Diarrhea
• Hair loss
• Rashes
• Nausea
• Vomiting.
Not all patients have these side effects. Treatment to
prevent or treat nausea, vomiting and diarrhea and other
side effects can help patients feel more comfortable.
Chemotherapy may cause the amount of uric acid to increase in the
blood of some AML patients. (Some patients also have a buildup
of uric acid from the disease itself.) Uric acid is a chemical made in
the body. A high level of uric acid can cause kidney stones.
Patients with high uric acid levels may be given a drug called
allopurinol (Aloprim®, Zyloprim®) by mouth. Another drug used
to treat high uric acid levels is called rasburicase (Elitek®), which
is given by vein.
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The free LLS booklet Understanding Drug
Therapy and Managing Side Effects has more
information about managing side effects.
Information about long-term and late effects of treatment begins
on page 28.
Refractory AML and Relapsed AML
Patients may have AML-cells in the marrow even after
treatment. This is called refractory AML. Some patients have a
remission after treatment but then AML-cells return later—this
is called a relapse.
With refractory AML, drugs that were not used in the first round
of treatment may be given. An allotransplant also may be used.
Allotransplant is described on page 17.
Patients who relapse may be treated with the same drugs as
newly diagnosed patients—or different drugs may be given.
Younger patients who have a matched donor may be given an
allotransplant.
The drug Mylotarg® is being used to treat some older patients
who have relapsed AML. More information about Mylotarg® is
on page 32.
27
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Long-term and Late Effects of Treatment
Long-term effects are medical problems that last for months or
years after treatment ends. Fatigue is an example.
Late effects are medical problems that do not show up until
years after treatment ends. Heart disease is an example.
Children and adults who have been treated for AML need to see
the doctor for follow-up care.
Children who are treated for AML may have
• Growth problems
• Fertility problems (ability to have children later on)
• Bone problems
• Heart problems
• Learning problems.
Adults who are treated for AML may have
• Fertility problems
• Thyroid problems
• Problems concentrating
• Persistent fatigue.
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Patients should talk with their doctors about any long-term or
late effects that may be related to their treatment. Parents should
talk to the doctor about when their child’s learning skills should
be checked.
These free LLS fact sheets have more information
on this topic:
• Long-term and Late Effects of Treatment for Childhood
Leukemia or Lymphoma
• Long-term and Late of Effects of Treatment in Adults
• Fertility
Follow-up Care
Medical follow-up is important for every AML patient. Followup care helps the doctor to see if there is a need for more
treatment.
Children and adults who have been treated for AML should see
their primary care doctor and an oncologist (cancer specialist)
for follow-up care. Patients should talk to the doctor about how
often to have follow-up visits. They can ask what tests they will
need—and find out how often to have the tests.
Follow-up care includes physical exams and blood tests.
Sometimes marrow tests are also needed. The doctor may advise
longer periods of time between follow-up visits if a patient
• Continues to be free of signs of AML
• Does not need medical care for any long-term or late effects.
29
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Clinical Trials
Clinical trials are used to study
• New drugs
• New treatments
• New uses for approved drugs or treatments.
Research has contributed to the growing number of patients
with AML who enter remission, stay in remission for years or
are cured.
Most children with AML are treated in clinical trials. Adults
with AML should talk to their doctors to see if a clinical trial
would be a good treatment for their type of AML.
Call the Information Resource Center at (800) 955-4572
to learn how you and your doctor can find out if a clinical
trial is right for you.
The free LLS free booklets Understanding
Clinical Trials for Blood Cancers and Acute
Myelogenous Leukemia have more information
about clinical trials.
To order free booklets, contact The Leukemia & Lymphoma
Society at www.LLS.org or (800) 955-4572.
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These are some of the types of trials under way:
Scientists are studying the exact genetic changes that cause a
normal cell to become an AML-cell. This research is leading
to the development of new treatments. These treatments could
block the effects of cancer-causing genes.
Risk-based therapy may provide targets for AML-specific therapy
in the future. This means that a patient’s AML-cells could be
studied to see what type of induction therapy, consolidation
therapy and intensification therapy would help them best.
Research on treatment for children and younger adults with
AML is aimed at further improving cure rates and decreasing
long-term and late effects of chemotherapy. Researchers are
studying risk factors and treatments for AML chemotherapy
complications such as infections, to make AML therapy safer for
children.
The AML-cells of some patients are not as easily killed by drugs
as those of other patients. This is called drug resistance.
Scientists are trying to understand why some AML-cells are
resistant to the effects of chemotherapy. This will help them
develop better treatments.
Scientists are studying immunotherapy, a type of treatment that
boosts the body’s natural defenses. The goal is to kill or prevent
the growth of AML-cells.
31
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Cytokines are natural substances made by cells. They can also
be made in the lab. Cytokines can be used to help
• Restore normal blood cells during treatment
• Build up the immune system to attack AML-cells.
FLT3 inhibitors are a new class of drugs under study. Several
FLT3-inhibitor drugs are being studied to treat AML.
Clofarabine (Clolar®) is being studied as a single treatment for
some newly diagnosed older adults with AML. Clolar® with
cytarabine is being studied to treat older adults with relapsed or
refractory AML.
Mylotarg® is a drug that is used to treat older patients who have
relapsed AML. It is being studied in combination with other
drugs to treat relapsed AML. It is also being studied with other
drugs to see if it is better than standard treatment for newly
diagnosed adults.
ATRA and arsenic trioxide. Doctors are also studying ATRA
and arsenic trioxide used together without Mylotarg® as a
treatment for APL.
Farnesyl transferase inhibitors, such as tipifarnib (Zarnestra®),
are being studied in older patients. Doctors are studying
how well the drug can keep patients with AML in remission.
Zarnestra® is also being studied for older adults in combination
with bortezomib (Velcade®).
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Doctors are studying a type of allotransplant, called a reducedintensity transplant (nonmyeloablative stem cell transplant).
This type of transplant begins with reduced-dose chemotherapy
treatment. The patient takes special drugs so that his or her
immune system does not reject the transplanted immune cells.
Over time, the donor stem cells replace the patient’s blood
and immune system cells. The donor stem cells also attack the
patient’s AML-cells.
Coping with AML
The news that you or your child has AML brings up many
feelings. People dealing with AML face unknowns about what
comes next. Together, you and your family can talk about your
concerns with your health care team. First you may want to
focus on learning what you need to know about AML and your
treatment or your child’s treatment. Then you can look ahead to
the hope of remission and recovery.
Making treatment choices can cause a lot of stress. It is
important to ask the health care team for help and guidance.
Talking about any medical concerns will help in making choices.
The team can also give emotional support and refer you to
sources of financial help.
Cancer treatment can be very costly. LLS has a Patient
Financial Aid Program that may be able to help with some of
33
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the costs of medications, treatment and transportation. To find
the chapter in your area and get information about the Patient
Financial Aid Program call (800) 955-4572. Or go to
www.LLS.org.
LLS has a Co-Pay Assistance Program. The program offers
patients assistance with private health insurance premiums,
private insurance co-pay obligations, Medicare Part B,
Medicare Plan D, Medicare Supplementary Health Insurance
and Medicare Advantage premium or co-pay obligations. The
prescription drugs covered by the program include drugs from
the pharmacy or drugs given by a health care provider in a
clinic, doctor’s office or hospital.
Patients with AML may also want to talk with their family and
friends about how they feel. Family and friends can help you
cope with what lies ahead. A friend or family member can go
with you to treatments. Also, patients with AML often get to
know one another. These friendships help too.
It is important for a patient whose mood does not improve
over time to seek medical advice. Depression should be treated
even when a person is undergoing AML treatment. LLS or the
patient’s health care team can give guidance and referrals for
depression treatment.
The free LLS booklets Each New Day and
Financial Health Matters have more details on
this topic.
To order free booklets, contact The Leukemia & Lymphoma
Society at www.LLS.org or (800) 955-4572.
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Helping Children Cope
Children with AML may feel scared and helpless. And they may
be too young to understand their illness and treatment.
Children with AML may have to deal with missing school, friends
and favorite activities. They may feel angry at doctors and nurses
for “hurting” them. They may be angry at their parents—they may
believe their parents let them get sick. Or they may be angry at
their parents for making them have tests and treatment.
One way to help children feel better about the changes in their
lives is to have them take part in “normal” activities as soon as
the doctor says it is okay.
Brothers and sisters of children with AML also need special
attention. They may be afraid of getting AML. They may feel bad
that their brother or sister is sick. They may be sad or angry that
their parents are not around as much.
Parents of a child with AML may want to talk to members of
their child’s health care team about how to
• Find enough time for everything
• Pay for treatment
• Best help their children.
The free LLS booklet Coping With Childhood
Leukemia and Lymphoma has more information
about helping children cope.
35
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What Should I Ask the Doctor?
Talk with the doctor about AML and how the doctor plans to
treat the disease. This will help you to be involved in your care—
or your child’s care—and to make decisions.
• What do the blood and marrow tests show? How do these
results compare to “normal”? When will these tests need to be
repeated?
• Will you send updates to my family doctor?
• What are the goals of treatment for the disease?
• Is there a standard treatment for the disease?
• What kind of treatment do you think is needed? Is there one
option that you recommend over the others? Why or why not?
• Where will the treatment be given? How many treatments will
be needed?
• What drug or drugs will be given? How will the drugs be given?
• Will I (or my child) be treated in a clinical trial?
• Will the treatment be paid for by my health plan?
• What side effects should be expected from treatment? What can
be done to help deal with side effects?
• Will I (or my child) need to change daily routines or avoid any
activities?
• Does this hospital have experience treating AML patients?
• What long-term or late effects of treatment should I know
about?
• How often and how long will I (or my child) need follow-up
visits?
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It may be helpful to write down the answers to your questions
and review them later. You may want to bring a family member
or friend with you to the doctor. The person can listen, take notes
and offer support. Some patients find it easier to tape record
information from the doctor and listen to the tape at home.
For question guides that you can print and take with you to
the doctor, visit www.lls.org and click on “What to Ask” under
Patient Services, Newly Diagnosed. These guides provide space
for you to write down your doctor’s answers to questions about
choosing a specialist, discussing treatments, learning about
clinical trials and more.
Patients with AML should talk with their family and friends
about how they feel. They can share what they know about the
disease. When family and friends know about AML it will help
them to cope.
Some Suggestions for Patients or Parents of Children with AML
• Keep all appointments with the doctor.
• Take all medicines as instructed by the doctor.
• Follow the doctor’s advice for preventing infection, such as
avoiding crowds and washing hands.
• Eat healthy foods each day; it is okay for patients to eat 4 or 5
smaller meals instead of 3 larger meals.
• Ask your treatment team for helpful tips for a patient who
doesn’t feel like eating.
• See the family doctor to keep up with other health care needs.
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Questions? Contact an Information Specialist at The Leukemia
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We’re Here to Help
LLS has chapters around the nation. The chapters offer support
groups and also can arrange for an AML patient to talk with
another person who has been treated for AML. To find the
chapter in your area, call (800) 955-4572. Or go to
www.LLS.org.
More Free LLS Booklets and Fact Sheets
Blood and Marrow Stem Cell Transplantation
Blood Transfusion
Choosing and Communicating with a Cancer Specialist fact
sheet
Choosing a Treatment Facility fact sheet
Fatigue fact sheet
Food and Nutrition Facts
Immunotherapy fact sheet
Learning & Living With Cancer: Advocating for your child’s
educational needs
Pictures of My Journey—Activities for kids with cancer
The Stem Cell Transplant Coloring Book
Understanding Leukemia
To order free booklets, contact The Leukemia & Lymphoma
Society at www.LLS.org or (800) 955-4572.
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Medical Terms
Absolute neutrophil count (ANC)
The number of neutrophils (a type of white blood cell)
that a person has to fight infection. It is calculated by
multiplying the total number of white blood cells by the
percent of neutrophils.
Anemia
Decrease in levels of hemoglobin in the blood.
Antibiotics
Drugs that are used to treat infections. Penicillin is one
type of antibiotic.
Antibodies
Proteins that help to fight infection in the body.
Basophil
A type of white cell that plays a part in allergies.
Blast cells
Early bone marrow cells, also known as myeloblasts.
About 1 to 5% of normal marrow cells are blast cells. In
AML 20% or more of marrow cells may be blast cells. 39
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Medical Terms
Central line
Special tubing the doctor puts into a large vein in the
upper chest to prepare a patient for chemotherapy
treatment. The central line is used to give the patient
chemotherapy drugs and blood cells, and to remove blood
samples. Also called an “indwelling catheter.”
Chemotherapy
Treatment with drugs or medicines to kill AML-cells.
Chloroma
A large mass of AML-cells, which may be treated with
radiation.
Clinical trials
A study done by doctors to develop better care and
treatment for cancer patients.
Consolidation therapy
Added treatment given to a patient even after the cancer
is in remission. It usually includes chemotherapy drugs
not used during induction treatment.
Cytogenetic analysis
The examination of the chromosomes of AML-cells to
give doctors information about how to treat patients. Cellsamples can be taken from blood or marrow.
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Medical Terms
Cytokines
Natural substances made by cells. They can also be made
in the lab. Today, growth factor cytokines can be used to
help restore normal blood cells during treatment. In the
future, immune cell cytokines may be used to treat AML.
Donor immune cells
The donated stem cells that a patient receives from a stem
cell transplant. These can help the patient make new
blood cells and new immune cells. Often, other immune
cells called “lymphocytes” are mixed in with the donor
stem cells. In time, the patient begins to make “donor”
type blood and immune cells.
Both the infused immune cells and the patient-made
donor type immune cells (lymphocytes) lead to 2 results:
“graft versus host” and “graft versus leukemia.” A strong
“graft versus leukemia” and a weak “graft versus host”
result usually means a better outcome for the patient.
Drug resistance
When a drug does not work or stops working.
Eosinophil
A type of white cell that plays a part in allergies.
41
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Medical Terms
FDA
Short name for the U.S. Food and Drug Administration.
The FDA looks at the results of drug studies and
determines if a drug is safe and effective.
FISH
The short name for “fluorescence in situ hybridization,”
a test to measure the presence in cells of a specific
chromosome or gene. This test can be used to plan
treatment and to measure the results of treatment.
FLT3 inhibitor
The FLT3 gene plays a role in a cell’s development. About
1/3 of people with AML have a change (mutation) to this
gene. Treatments that target this mutation may be used to
treat AML in the future.
Hematologist
A doctor who treats blood cell diseases.
Hemoglobin
The part of the red cell that carries oxygen.
Immune system
Cells and proteins that defend the body against infection.
Lymphocytes, lymph nodes and the spleen are some parts
of the immune system.
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Medical Terms
Immunotherapy
The term for treatments that can boost the body’s immune
system such as monoclonal antibody therapy. Other
immunotherapies are being studied for AML treatment
such as vaccines that would not prevent AML, but would
help the immune system’s attack against AML-cells.
Intensification therapy
Treatment given to a patient after induction and
consolidation therapy. It usually includes chemotherapy
and may include allotransplant or autotransplant.
Leukemia
A cancer of the marrow and blood.
Lymph nodes
Small bean-shaped organs around the body that are part
of the body’s immune system.
Oncologist
A doctor who treats patients with cancer.
Pathologist
A doctor who identifies disease by studying tissues under
a microscope.
43
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Medical Terms
PCR
The short name for “polymerase chain reaction,” a
sensitive lab test that can measure the presence of a cancercell marker in the blood or marrow. It is used to detect
remaining cancer cells that cannot be found by other tests.
Radiation therapy
Treatment with X-rays or other high-energy rays.
Refractory AML
Disease that does not respond to therapy.
Relapse or recurrence
When AML comes back after it has been successfully
treated.
Remission
No sign of AML and/or a period of time when the disease
is not causing any health problems for the patient.
Signs and symptoms
A sign is a change in the body that the doctor sees in an
exam or on a lab test result. A symptom is a change in the
body that a patient can see or feel.
Stem cell
A type of cell found in marrow that makes red cells, white
cells and platelets.
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Notes
45
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For more information, please contact:
or:
Home Office
1311 Mamaroneck Avenue
White Plains, NY 10605
Information Resource Center (IRC) 800.955.4572 (Language interpreters are available upon request.)
www.LLS.org
Our Mission: Cure leukemia, lymphoma,
Hodgkin’s disease and myeloma, and improve the
quality of life of patients and their families.
LLS is a nonprofit organization that relies on the generosity of individual, foundation and corporate contributions to
advance its mission. PS66 35M 4/08