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Leukemia - Acute Myeloid - AML - Childhood - Introduction

Approved by the Lineagotica Editorial Board, 12/2017

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 Lineagotica’s Guide to Childhood Acute Myeloid Leukemia (AML). Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Leukemia is a cancer of the blood. It begins when healthy blood cells change and grow out of control. Acute myeloid leukemia (AML) is a type of leukemia that is a cancer of the blood-forming tissue in the bone marrow, the spongy tissue inside your bones. 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 3 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 out of control. 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.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Lineagotica:

  • Lineagotica Patient Education Videos: View short videos led by ASCO experts in childhood cancer and leukemia that provide basic information and areas of research.

The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with this disease and general survival rates. You may use the menu to choose a different section to read in this guide.  

Leukemia - Acute Myeloid - AML - Childhood - Statistics

Approved by the Lineagotica Editorial Board, 01/2019

ON THIS PAGE: You will find information about the number of children who are diagnosed with AML each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

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). Childhood AML is most common during the first 2 years of life and during the teenage years. In the United States, about 730 people under age 20 are diagnosed with AML each year.

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for children with all subtypes of AML is 66%. For people under 20, the 5-year survival rate is 67%. However, the survival rates for AML vary based on the subtype.

It is important to remember that statistics on the survival rates for children with AML are an estimate. The estimate comes from annual data based on the number of children with this cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your child’s doctor if you have any questions about this information.  Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts and Figures 2019, the ACS website (January 2019), and the Children’s Oncology Group (COG) CureSearch for Children’s Cancer.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by childhood AML. Use the menu to choose a different section to read in this guide. 

Leukemia - Acute Myeloid - AML - Childhood - Risk Factors

Approved by the Lineagotica Editorial Board, 12/2017

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. Use the menu to see other pages.

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 4 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 2. 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. It explains what body changes or medical problems this disease can cause. You may use the menu to choose a different section to read in this guide.

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

Approved by the Lineagotica Editorial Board, 12/2017

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Children with AML may experience the following symptoms or signs. Sometimes, children with AML do not have any of these changes. Or, the cause of a symptom may be a different 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

  • Unhealthy, pale appearance or complexion

If you are concerned about any changes you experience, 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 figure 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 the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Diagnosis

Approved by the Lineagotica Editorial Board, 12/2017

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, leukemia. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory (see below).

This list describes options for diagnosing this type of leukemia. Not all tests listed below will be used for every person. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

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 2 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. Other types of anesthesia (medication to block the awareness of pain) may also 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 have a high risk that the cancer will come back after treatment.

      For children with this type of AML, the use of a medical treatment called 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 positive cells to find out if the drugs can better treat the leukemia. At the same time, research has shown that children with 2 leukemia cell gene mutations called nucleophosmin-1 (NPM1) and CEBPα have a better prognosis (chance of recovery) than those without these mutations. If the leukemia 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. It helps explain the different subtypes of AML. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Subtypes

Approved by the Lineagotica Editorial Board, 12/2017

ON THIS PAGE: You will learn about how doctors determine the subtype of AML. Use the menu to see other pages.

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 8 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. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Treatment Options

Approved by the Lineagotica Editorial Board, 12/2017

ON THIS PAGE: You will learn about the different treatments doctors use for children with this type of cancer. Use the menu to see other pages.

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 very low numbers of 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. The child usually does not have any signs or symptoms of the disease, which only matters during initial therapy called induction (see below, under Chemotherapy).

  • 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.

Treatment overview

In general, cancer in children is uncommon. This means 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. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

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. Talk with your child’s doctor about the goals of each treatment 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 ending 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, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs given 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 2 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/bone marrow 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 after 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 2 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 2 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.

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. The doctors use chemotherapy and/or radiation therapy to destroy the cancer cells before the transplant takes place.

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, whether there is a low or high risk of recurrence, whether there is any MRD after induction therapy, and patient’s age and general health.

Not all children with AML need stem cell transplantation. Children with subtypes of AML that have lower risks of recurrence and therefore higher chances of cure can usually receive chemotherapy alone. 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.

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, 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 2 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, ALLO 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 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.

Side effects depend on the type of transplant, your child’s general health, and other factors.

Learn more about the process ofstem 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. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or 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. Total body irradiation (TBI) is a type of radiation therapy that is given to the entire body to prepare the body to receive the transplant.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and 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 treatments intended to slow, stop, or eliminate the cancer, 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 at the same time that they receive treatment to ease side effects. In fact, patients who receive both at the same time 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. 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

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 new cycle of testing will begin again to learn as much as possible about the recurrence. After this 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 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 doesn’t work

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.

Hospice care is a type of palliative care for people who are expected to live less than 6 months. It is designed to provide the best possible quality of life for people who are near the end of life. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations.

Nursing care and special equipment can make staying at home a workable option 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. It offers more information about research studies that are focused on finding better ways to care for people with cancer. You may use the menu to choose a different section to read in this guide.

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

Approved by the Lineagotica Editorial Board, 12/2017

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. Use the menu to see other pages.

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 tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. 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 can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

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 a way to contribute to the progress in treating AML. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with AML.

Insurance coverage of clinical trials costs differs by location and by study. In some programs, some of the patient’s expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your child’s treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

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:

  • Describe all of the patient’s options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • 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.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

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.

Lineagotica 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. {PRE-ACT Logo/Link to be inserted}

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Latest Research

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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. Use the menu to see other pages.

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 best diagnostic and treatment options 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 genetic 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 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:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. You may use the menu to choose a different section to read in this guide.

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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. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how they feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.

As your child prepares to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care.” It is an important part of your child’s treatment plan, regardless of his or her age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for AML are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your child’s general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late 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.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in response.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations, in a separate part of this website.

Caring for a child with cancer

Family members and friends often play an important role in taking care of a person with AML. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

When your child has AML, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care and it explains the importance of checkups after your child finishes cancer treatment. You may use the menu to choose a different section to read in this guide. 

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

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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. Use the menu to see other pages.

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.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead.  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 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.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

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 when treatment is completed.

Some children continue to see their oncologist, while others transition back to the 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, and with 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. It describes how to cope with challenges in everyday life after a cancer diagnosis. You may use the menu to choose a different section to read in this guide.

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ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes 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 about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing 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 when 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 place 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.

It is important that your child has recommended medical checkups 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 Lineagotica:

  • Survivorship Resources: Lineagotica 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: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Lineagotica 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 Health Care Team to help start conversations with your child’s cancer care team. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Questions to Ask the Health Care Team

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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. Use the menu to see other pages.

Talking often with your health care team 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 Lineagotica’s free mobile app for a digital 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 available for 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 leading 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 of cancer care, who can help me?

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

  • Whom should I call with questions or problems?

  • Is there anything else I should be asking?

Questions to ask about your child’s treatment plan

  • 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 each treatment?

  • How long will it take to give each treatment?

  • What side effects can my child 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 chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • 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 leading 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. It offers some more resources on this website beyond this guide that may be helpful to you. You may use the menu to choose a different section to read in this guide.

Leukemia - Acute Myeloid - AML - Childhood - Additional Resources

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ON THIS PAGE: You will find some helpful links to other areas of Lineagotica that provide information about cancer care and treatment. This is the final page of Lineagotica’s Guide to Childhood AML. Use the menu to go back and see other pages.

Lineagotica includes many other sections about the medical and emotional aspects of cancer, 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 Lineagotica: