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Leukemia - Acute Myeloid - AML - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Acute Myeloid Leukemia (AML). To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Leukemia is a cancer of the blood. It begins when healthy blood cells change and multiply uncontrollably. Acute myeloid leukemia (AML) is a type of leukemia that is a cancer of the blood-forming tissue in the bone marrow, the spongy. AML may also be called acute nonlymphocytic leukemia or acute myelogenous leukemia.

About bone marrow and blood cells

Bone marrow is the spongy, red tissue in the inner part of the large bones. It is where a person’s blood cells are made. Healthy immature blood cells are called blasts. Blasts mature into one of three different types of blood cells:

  • White blood cells, which fight infection in the body

  • Red blood cells, which carry oxygen and other nutrients throughout the body

  • Platelets, which help the blood to clot

About AML

In AML, the bone marrow makes many abnormal cancerous cells, also called blasts or myeloblasts because they look similar to healthy immature blast cells. Instead of becoming healthy mature blood cells, cancerous cells divide rapidly and uncontrollably. The cancerous cells are unable to mature and work like healthy blast cells, and they do not die easily.

Eventually, these myeloblasts fill up the bone marrow, preventing healthy cells from being made, and then build up in the bloodstream. They can also move into the lymph nodes, brain, skin, liver, kidneys, ovaries (in girls), testicles (in boys), and other organs. AML cells occasionally form a solid mass or tumor, called a chloroma.

Both children and adults can develop leukemia. This section is about AML that occurs in children, sometimes called pediatric AML. Learn more about AML in adults.

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If you would like additional introductory information, explore these related items. Please note these links will take you to other sections on Cancer.Net:

The next section in this guide is Statistics and it helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find information about how many children are diagnosed with this type of cancer each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

In general, leukemia is the most common childhood cancer. AML is the second most common form of leukemia in children, after acute lymphoblastic leukemia (ALL). About 500 children and 230 adolescents in the United States are diagnosed with AML each year. Childhood AML is most common during the first two years of life and during the teenage years.

The five-year survival rate is the percentage of people who survive at least five years after the cancer is found. The five-year survival rate for children under 14 with AML is 64%. However, the survival rates for AML vary based on the subtype.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of children with this type of cancer, so the actual risk for a particular individual may be different. It is not possible to tell a child how long he or she will live with AML. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Source: American Cancer Society and St. Jude Children’s Research Hospital.

The next section in this guide is Medical Illustrations and it offers drawings of body parts often affected by this disease. Or, use the menu on the left side of your screen to choose another section to continue reading this guide.

Leukemia - Acute Myeloid - AML - Childhood - Medical Illustrations

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find basic drawings of the common body parts affected by this disease. To see other pages, use the menu on the side of your screen.

Childhood Leukemia Anatomy

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Blood Anatomy

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The next section in this guide is Risk Factors and it explains what factors may increase the chance of developing this disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Doctors and researchers don’t know what causes most childhood cancers, including AML. Sometimes, AML may be caused by certain genetic or environmental factors. For example, children who have Down syndrome have an increased risk of AML during the first four years of life. Children with other disorders of the bone marrow are also at risk of developing AML, which slowly increases as they age. However, the reasons for this increased risk are not well understood.

In general, AML occurs more often in children younger than two. The number of people with AML increases again in late childhood (during the teenage years) and continues to increase throughout later adulthood.

The next section in this guide is Symptoms and Signs and it explains what body changes or medical problems this disease can cause. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with AML may experience the following symptoms or signs. Sometimes, children with AML do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. The early signs and symptoms of AML can look very much like the flu or other common childhood illnesses. Most of the signs and symptoms of AML are caused by the bone marrow making fewer healthy blood cells and the buildup of cancerous AML cells.

  • Fever

  • Chills

  • Aching bones and joints

  • Swollen lymph nodes

  • Bleeding and bruising easily

  • Paleness

  • Unhealthy, pale appearance or complexion

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. Your doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide. 

Leukemia - Acute Myeloid - AML - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose leukemia. Some tests may also help the doctor choose the treatment that may be the most effective. Not all tests listed will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition

  • Type of cancer suspected

  • Signs and symptoms

  • Previous test results

When a child has signs and symptoms of leukemia, the doctor will ask about the child’s medical history and perform a physical examination. In addition, the following tests may be used to diagnose AML:

  • Blood tests. Complete blood count (CBC) and cell type (called differential count) are blood tests done to count the number of each type of blood cell under a microscope and to check if they look abnormal.

  • Bone marrow aspiration and biopsy. These two procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.

    A pathologist then analyzes the samples. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The child’s skin in that area will be numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used. From this test, the doctor can find out whether the child has leukemia and, if so, what type of leukemia it is.

  • Molecular and genetic testing. Your doctor may recommend running laboratory tests to identify specific genes, proteins, and other factors involved in the leukemia. Examining the genes in the leukemia cells is important because AML can be caused by a buildup of mistakes (also called mutations) in the cell’s genes. Identifying these mistakes helps diagnose the specific subtype of AML and choose treatment options. In addition, the results of those tests can also be used to monitor how well treatment is working. Listed below are the more common molecular or genetic tests used for AML.

  • Cytochemical and immunohistochemical tests are laboratory tests that are used to find out the exact subtype of AML. In cytochemical tests, a special dye is used that stains the different types of leukemia cells differently based on the chemicals in the cells. For AML, immunohistochemical tests and a test called flow cytometry are used to find markers on the surface of the leukemia cells. The different subtypes of leukemia have different and unique combinations of cell surface markers.

  • Cytogenetics is a way to look at a cell’s chromosomes (long strands of genes) through a microscope to analyze the number, size, shape, and the arrangement of the chromosomes to find genetic changes in the leukemia cells. Sometimes, a chromosome breaks off and reattaches to another chromosome, which is called a translocation. Other times, part of a chromosome is missing, called a deletion. A chromosome can also be made more than once, most often called a trisomy. Some subtypes of leukemia are caused by chromosome translocations, deletions, or trisomies.

    Knowing if there are certain translocations may help doctors determine the AML subtype and plan the best treatment. Flourescence-in-situ-hybridization (FISH) is a way to detect chromosome changes in cancer cells and is being used more often to help diagnose and determine the subtype of leukemia. This test is done on tissue removed during a biopsy or aspiration (see above).

  • The molecular genetics of leukemia cells can also be used to help find out if a person needs more or less chemotherapy and/or stem cell transplantation (see the Treatment Options section). The goal of this type of testing is to look for very small genetic mutations, called sub-microscopic mutations. People who have the Flt3 (pronounced flit 3) genetic mutation, called an internal tandem duplication (ITD), and specifically those with the mutation on both versions of the gene, have a high risk that the cancer will come back after treatment.

    For children with this type of AML, the use of stem cell transplantation may lengthen their lives when used after the first complete remission (see the Treatment Options section). There are also new drugs being tested that target Flt3-ITD positive cells to find out if the drugs can better treat the leukemia. At the same time, research has shown that children with two leukemia cell gene mutations called nucleophosmin-1 (NPM1) and CEBPα have a better prognosis (chance of recovery) than those without these mutations. If a child has these mutations, the doctor may recommend chemotherapy without stem cell transplantation.

  • Recently, highly advanced tools that can look at a person’s entire genetic make-up, called whole genome testing and whole exome testing, have been developed. These methods of testing are still emerging but have been used to look for genetic mutations that can lead to cancer. However, these tests are still generally only available in research studies where they are being used to find out if using these tests improves diagnosis, treatment, and cure.

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is AML, these results also help the doctor describe the cancer and determine the subtype.

The next section in this guide is Subtypes and it helps explain the different subtypes of AML. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Leukemia - Acute Myeloid - AML - Childhood - Subtypes

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn about how doctors determine the subtype of AML. To see other pages, use the menu on the side of your screen.

AML blasts are classified based on how much they look like healthy immature bone marrow blast cells, and more recently, on the molecular and genetic testing of the leukemia cells (see the Diagnosis section). In the recent past, AML was divided into eight major subtypes according to a system called the FAB classification scheme, using levels M0 to M7, and was primarily based on their appearance. Now, a new method of subtyping AML is used that first takes into consideration the cytogenetic causes of AML. This is called the World Health Organization (WHO) 2008 classification. These subtypes include:

  • Acute myeloid leukemia with recurrent genetic abnormalities

    • AML with t(8;21)(q22;q22); RUNX1-RUNX1T1

    • AML with inv(16)(p13.1q22) or t(16;16)(p13.1;q22); CBFB-MYH11

    • Acute promyelocytic leukemia (APL) with t(15;17)(q22;q12); PML-RARA

    • AML with t(9;11)(p22;q23); MLLT3-MLL

    • AML with t(6;9)(p23;q34); DEK-NUP214

    • AML with inv(3)(q21q26.2) or t(3;3)(q21;q26.2); RPN1-EVI1

    • AML (megakaryoblastic) with t(1;22)(p13;q13); RBM15-MKL1

    • AML with mutated NPM1

    • AML with mutated CEBPα

  • Acute myeloid leukemia with myelodysplasia-related changes

  • Therapy-related myeloid neoplasms

  • Acute myeloid leukemia, not otherwise specified

    • AML with minimal differentiation

    • AML without maturation

    • AML with maturation

    • Acute myelomonocytic leukemia

    • Acute monoblastic/monocytic leukemia

    • Acute erythroid leukemia

      • Pure erythroid leukemia

      • Erythroleukemia, erythroid/myeloid

    • Acute megakaryoblastic leukemia

    • Acute basophilic leukemia

    • Acute panmyelosis with myelofibrosis

  • Myeloid sarcoma

  • Myeloid proliferations related to Down syndrome

    • Transient abnormal myelopoiesis

    • Myeloid leukemia associated with Down syndrome

Information about the cancer’s subtype will help the doctor recommend a treatment plan for your child. The next section in this guide is Treatment Options. Or, use the menu on the side of your screen to choose another section, to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of cancer. To see other pages, use the menu on the side of your screen.

Treatment overview

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best known treatments available) with newer approaches to treatments that may be more effective.

Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

An increasing number of pediatric cancer centers also have services for teenagers and young adults. Sometimes, adult cancer centers also offer clinical trials for teens and young adults with cancer.

Descriptions of each treatment option for AML are listed below. Two types of treatment commonly used to treat AML in children are chemotherapy and stem cell/bone marrow transplantation. Radiation therapy is used occasionally in specific situations. Sometimes, more than one treatment is used.

Treatment options and recommendations depend on several factors, including the subtype of AML, possible side effects, the patient’s preferences, and the patient’s overall health. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of the treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child's doctor and what you and your child can expect while receiving the treatment. Learn more about making treatment decisions

Chemotherapy

Chemotherapy is the most common treatment for AML. It is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. It is given by a pediatric hematologist-oncologist, a doctor who specializes in treating cancer in children with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed.

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Several treatment regimens have been developed that involve intensive use of several drugs. Following these regimens, about 85% of children will have an initial remission, and about 50% to 70% will be cured, meaning that the cancer never returns. See below for detailed descriptions about the levels of remission used to describe the state of disease. During treatment, children with AML need to be watched very carefully and often spend many weeks in the hospital because very low blood cell counts increase the risk of developing infections.

The choice of drugs depends on whether the child has previously been treated for AML, as well as other factors. Chemotherapy for AML is usually divided into two phases of treatment: induction and intensification.

  • Induction chemotherapy uses chemotherapy to destroy as many of the cancer cells as possible to make the AML to go into remission.

  • Intensification chemotherapy is used to destroy any cancer cells that may be hiding after induction chemotherapy has led to remission. This means that there are too few to detect by modern tests. Stem cell transplantation also can be used for intensification therapy (see below).

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, low blood cell counts, risk of infection, hair loss, nausea and vomiting, loss of appetite, or diarrhea.

These side effects usually go away once treatment is finished. The severity of side effects may also be affected by other factors, including genetic differences in the way the drugs are used by the body and the child’s overall health and well-being.

Doctors understand that everyone is different. Most children are initially treated similarly to other children with the same cancer. However, based on the side effects, doses or schedules may be changed. This is a constant balance between the effort to destroy all the cancer cells and the need to avoid severe side effects. Your child’s doctor will discuss changes to the treatment plan with you as they are needed, and not all children will need to have their chemotherapy changed.

There are two very unique subtypes of childhood AML that are treated differently from the rest:

  • Children with Down syndrome who develop AML under 4 years of age. The AML that develops in this case is more sensitive to chemotherapy, and less intense chemotherapy may be used with very good cure rates of nearly 90% survival at 5 years. 

  • Acute Promyelocytic Leukemia (APL) with t(15;17)(q22;q12). This leukemia results from two genes, PML and RARA, which due to chromosome abnormalities are brought next to each other. Two drugs, all-trans retinoic acid (ATRA) and arsenic trioxide, are unique agents and unlike traditional chemotherapy. This treatment approach, when combined with chemotherapy, has achieved excellent response rates above 90%. Other studies have shown a similar benefit when both drugs are used without chemotherapy.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications. Learn more about prescriptions by using searchable drug databases.

Stem cell transplantation/bone marrow transplantation

Children with AML have different risks of recurrence depending on the subtype. Recurrence is when the leukemia returns following treatment. For children with a higher risk of recurrence, it is more likely that the doctor will recommend stem cell transplantation to help prevent a recurrence.

A stem cell transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells called hematopoietic stem cells that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant rather than bone marrow transplant. That’s because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Before recommending stem cell transplantation, doctors will talk with the patient about the risks of this treatment. Doctors will also consider several other factors, such as the type of leukemia, results of any previous treatment, and patient’s age and general health.

Not all children with AML need stem cell transplantation. For instance, children with Down syndrome and the subtype called APL with t(15;17) do not need stem cell transplantation unless the AML recurs. AML with certain genetic changes (for example, chromosome abnormalities known as inv 16 and t[8;21], or molecular changes known as NPM1 or CEBPα) is not treated with stem cell transplantation unless the leukemia has recurred. Children with subtypes of AML that have lower risks of recurrence and therefore higher chances of cure can usually receive chemotherapy alone.

Doctors sometimes look at how well induction chemotherapy worked to decide whether stem cell transplantation will be used. Children without high risk factors for recurrence, such as FLT3-ITD, monosomy 7, monosomy 5 or deletion of the q arm of chromosome 5 (5q deletion), who have no MRD in their bone marrow after induction, also may be treated without use of a stem cell transplant in the first remission.

There are two types of stem cell transplantation depending on the source of the replacement blood stem cells:

  • Allogeneic (ALLO). ALLO transplantation is the type most often used for AML. An ALLO transplantation uses donated stem cells, from a related or unrelated donor.

  • Autologous (AUTO). AUTO transplantation uses the patient’s own stem cells.

For children with a higher risk for recurrence, when a related donor is available, stem cell transplantation is the preferred treatment after a child has a first remission. For children with the highest risk of recurrence and the poorest chance of recovery, stem cell transplantation with either a related or unrelated donor is often used in addition to chemotherapy after the child has a first remission.

In the past, transplantations from unrelated donors were not done unless the AML had recurred. However, as the safety of using stem cells/bone marrow from unrelated donors has improved, these types of transplants are being used more often to prevent recurrence for children with high risk AML. Clinical trials are studying the use of unrelated donor transplants for patients with AML that has certain high-risk features. Examples include a chromosome abnormality called monosomy 7 or a child who doesn’t experience a remission after their first induction chemotherapy.

The goal of stem cell transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and allow replacement blood stem cells to create healthy bone marrow.

Learn more about the basics of stem cell and bone marrow transplantation.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for AML is generally used only if the cancer has spread to the brain and does not respond to systemic chemotherapy and/or chemotherapy given into the spinal fluid. Radiation therapy may also be used to treat a chloroma when chemotherapy has not fully worked. As explained above, radiation therapy may also be used during a stem cell/bone marrow transplant.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, or loose bowel movements. Most side effects go away soon after treatment is finished. Radiation therapy can sometimes interfere with the normal growth and development of the child’s brain and body. Therefore, when possible, chemotherapy is used first to avoid radiation therapy. More information about long-term effects can be found in the Follow-up care section.

 Learn more about the basics of radiation therapy.

Getting care for symptoms and side effects

Leukemia and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the disease, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process.

Children often receive treatment for the leukemia and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy or radiation therapy. Talk with your child's doctor about the goals of each treatment in your child's treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of the specific treatment plan and palliative care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care

Describing the State of Disease

The following terms are used to describe the state of disease for children with AML:

  • Untreated AML. The child has not received any treatment except to relieve symptoms of the disease. The blood and/or bone marrow contains measurable amounts of leukemia cells, and the child may or may not have symptoms and signs of the disease.

  • Complete Remission AML. There are too few cancerous blast cells in the bone marrow to tell apart from healthy blasts under the microscope. Traditionally, this means there are fewer than 5% blasts in the bone marrow. New monitoring methods, called minimal residual disease (MRD; cancer cells not destroyed by treatment) methods, are better able to find fewer cancerous blasts, as well as tell the difference between cancerous blasts and healthy blasts. MRD methods are now being used more often to determine remission, and recent research has shown these methods are better able to predict the chance of curing the disease. The child usually does not have any signs or symptoms of the disease when in complete remission.

  • Partial Remission AML. The number of cancerous blast cells in the bone marrow is reduced but still can be seen under the microscope or by MRD methods, if appropriate. The child usually does not have any signs or symptoms of the disease, which only matters during initial therapy called induction (see above).

  • Recurrent AML. The disease has come back after the child had a period of remission (complete absence of symptoms; see above).

  • Refractory AML. The leukemia did not go into complete remission after treatment.

Remission and the chance of recurrence

As described above, a complete remission is when leukemia cannot be detected in the body or at very low levels, and the patient usually doesn’t experience any symptoms. This may also be called having “no evidence of disease” or NED. 

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of the disease returning. Understanding the risk of recurrence and the treatment options may help patients and their families feel more prepared if the leukemia does return. Learn more about coping with the fear of recurrence.

If the cancer does return after the original treatment, it is called recurrent (or relapsed) cancer. Most often, AML comes back in the bone marrow, but sometimes it may come back in the brain or other parts of the body.

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your child’s doctor will talk about the treatment options. Treatment usually includes chemotherapy followed by stem cell transplantation. However, each child’s treatment is planned based on his or her specific circumstances. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. For some children, recurrent AML can be cured.

Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

When cancer recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope.

Learn more about dealing with cancer recurrence.

If treatment fails

Although treatment is successful for the majority of children with cancer, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer.

This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life.

Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity.

Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

The next section in this guide is About Clinical Trials and it offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with AML. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease. 

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some children, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result.

Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating AML. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with AML.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient Safety and Informed Consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects.

Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for AML, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about AML, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

  • Genetic testing. The genetics of leukemia cells are being tested to see if they can help doctors decide which patients may need more or less intense treatment. These discoveries help doctors better understand the causes of leukemia, determine the prognosis for each child, and even develop new drugs that target these specific genetic changes.

  • Better detection. New methods to measure minimal residual disease can find one leukemia cell in 10,000 healthy cells, which can help determine the likelihood of recurrence. Increasingly, changes made to chemotherapy treatments and/or the use of stem cell transplantation are partly based on these new types of tests.

  • New drugs and combinations of drugs. Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to normal cells.

    Sorafenib (Nexavar) is a type of targeted therapy called a protein kinase inhibitor that specifically targets AML blasts with the Flt3 mutation. It is being tested in combination with chemotherapy for children newly diagnosed with AML. Other new drugs that may be used for AML are being tested in clinical trials or are in development in research laboratories. Learn more about the basics of targeted treatments.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current leukemia treatments in order to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of childhood leukemia research, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your child’s diagnosis, talk with the doctor or search online clinical trial databases now.

  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancer, called pediatric cancers on this website. Please note this link takes you to a separate ASCO website.

  • Visit the website of the Conquer Cancer Foundation to find out how to help support research for every cancer type. Please note this link takes you to a separate ASCO website. 

The next section in this guide is Coping with Side Effects and it offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about steps to take to help your child cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of leukemia, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

There are possible side effects for every cancer treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how your child will feel during treatment. 

Common side effects from each treatment option for AML are described in detail within the Treatment Options section. Learn more about the most common side effects of leukemia and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the subtype, the length and dosage of treatment(s), and your child’s overall health.

Talking with your health care team about side effects

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them.

And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with AML. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your child’s cancer care

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

The next section in this guide is Follow-up Care and it explains the importance of check-ups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

 ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

Care for children diagnosed with cancer doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including AML, should have life-long, follow-up care.

This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will also ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. Based on the type of treatment your child received, the doctor will plan what examinations and tests are needed to check for long-term side effects, such as problems with the heart, lungs, or growth hormones and the development of a learning disability.

Another possible long-term side effect is a secondary cancer. This is a new type of cancer that develops after treatment for the first cancer. While this risk is generally low, your child should be closely monitored for their entire life for secondary cancers. Your child’s doctor can recommend the necessary screening tests.

In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

Some children continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with your health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship and it describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. To see other pages, use the menu on the side of your screen.

What is survivorship?

The word survivorship means different things to different people, but it often describes the process of living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every patient and his or her family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain of how to cope with everyday life.

One source of stress may occur when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving in this article.

Healthy living after cancer

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

In addition, it is important that your child has recommended medical check-ups and tests (see Follow-up Care) to take care of his or her health. Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.
  • ASCO Answers Cancer Survivorship Guide: This 44-page booklet (available as a PDF) can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms.
  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Doctor to help start conversations with your child’s cancer care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some questions to ask your child's doctor or other members of your child's health care team, to help you better understand your child's diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you and your child.

You may want to print this list and bring it to your child's next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child's care.

Questions to ask after getting a diagnosis

  • What type of leukemia has been diagnosed?

  • What subtype of AML has been diagnosed? What does this mean?

  • Can you explain my child’s pathology report (laboratory test results) to me?

Questions to about choosing a treatment and managing side effects

  • What are the treatment options?

  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What are the possible side effects of this treatment, both in the short-term and the long-term?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be coordinating my child’s overall treatment?

  • How will this treatment affect my child’s daily life? Will he or she be able to attend school and perform his or her usual activities?

  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?

  • What support services are available to my child? To my family?

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having chemotherapy, stem cell transplantation, radiation therapy etc.

  • What chemotherapy will my child receive?

  • Should my child receive stem cell transplantation? Why or why not?

  • Will my child receive radiation therapy?

  • How long will my child need to stay in the hospital?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the risk of the cancer returning? Are there signs and symptoms I should watch for in my child?

  • What long-term side effects or late effects are possible based on the cancer treatment my child received?

  • What follow-up tests will my child need, and how often will he or she need them?

  • How do I get my child’s treatment summary and survivorship care plan to keep in my personal records?

  • Who will be coordinating my child’s follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood AML. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of the Cancer.Net’s Guide to Childhood AML. Use the menu on the side of your screen to select another section to continue reading this guide.