Oncologist-approved cancer information from the American Society of Clinical Oncology

Leukemia - Acute Lymphoblastic - ALL - Childhood


Last Updated: September 27, 2011

This section has been reviewed and approved by the Cancer.Net Editorial Board,  09/11

Overview

Leukemia is a cancer of the blood. Leukemia begins when normal blood cells change and grow uncontrollably. Acute lymphocytic leukemia (ALL) is a cancer of the lymphocytes, a type of white blood cell involved in the body’s immune system. It is the most common type of childhood cancer. ALL can also be called acute lymphoblastic leukemia, or acute lymphoid leukemia.

About lymphocytes

Lymphocytes are made in the bone marrow, the spongy, red tissue in the inner part of the large bones. Lymphocytes are found in the blood, lymph nodes, and spleen. Healthy lymphocytes fight bacterial and viral infections. In people with ALL, new lymphocytes do not develop into mature cells, but stay as immature cells called lymphoblasts.

About ALL

When a child has ALL, the lymphoblasts fill the bone marrow and crowd out other normal cells, preventing the production of red blood cells, many other types of normal white blood cells, and platelets (cells that help blood to clot). If the bone marrow is not functioning correctly, the child may experience anemia, easy bruising or bleeding or infection.

  • Anemia is from too few red blood cells that carry oxygen to tissues. Anemia can lead to fatigue, irritability, sleepiness, paleness, shortness of breath, and a rapid heartbeat.

  • Bruising or bleeding from injuries may occur more easily, because the blood cannot clot normally when the platelet count is low.

  • Infection may occur more often if the blood has too few normal white blood cells. Many types of white blood cells are needed for normal, healthy functions.

The leukemic lymphoblasts may also collect in the child’s lymph nodes and cause them to swell. Lymphoblasts may also spread to other organs, including the skin, liver, spleen, ovaries (in girls), testicles (in boys), and the spinal fluid.

This section is about ALL in children, sometimes called childhood ALL or pediatric ALL. Learn more about acute lymphocytic leukemia in adults.

Find out more about basic cancer terms used in this section.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available in PDF) that offers an easy-to-print introduction for this type of cancer.

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

  • Cancer.Net En Español: Read about childhood ALL in Spanish.

Or, choose “Next” (below, right) to continue reading this detailed section. To select a specific topic within this section, use the icon panel located on the right side of your screen.

Statistics

ALL is the most common type of childhood cancer. Each year, an estimated 2,900 children and adolescents younger than 20 are diagnosed with ALL. It is most common in younger children, especially children ages two and three. The five-year survival rate (the percentage of people who survive at least five years after the cancer is detected) of children with ALL is 89% for children younger than 14 and 50% for adolescents aged 15 to 19.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of cancer in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with childhood ALL. 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: The National Cancer Institute

Medical Illustrations

Childhood Leukemia Anatomy

Larger image

Childhood Leukemia Anatomy

Larger image

Risk Factors

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors can 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.

Although doctors don’t know what causes the vast majority of childhood leukemia, some evidence shows that certain genetic factors play a role in ALL. Children who are born with conditions that cause an abnormal immune system, such as Down syndrome, ataxia telangiectasia, and Bloom syndrome, may have a higher risk of developing leukemia. A child with an identical twin that develops ALL before age six has an increased risk of developing leukemia. If an identical twin develops leukemia within the first few months of life, the other twin will almost always develop the same type of leukemia.

Symptoms and Signs

Children with ALL often experience the following symptoms or signs. Sometimes, children with ALL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. The early signs of ALL can look very much like the flu or other common illnesses. When one or more of these symptoms lasts for longer than one would expect, or you are worried about a symptom or sign on this list, please talk with your child’s doctor.

  • Frequent infections

  • A fever that doesn’t go away

  • Feeling weak and tired all the time

  • Bone pain

  • Swollen lymph nodes (in the neck, under the arms, and groin, for example)

  • Paleness

  • Bruising or bleeding easily

  • Difficulty breathing

  • Headache

The child’s doctor may also detect an enlarged liver or spleen during a physical examination.

Your child’s doctor will ask you questions about the symptoms your child is experiencing to help find out the cause of the problem, called a diagnosis. This may include how long your child has been experiencing the symptom(s) and how often.

If cancer is diagnosed, relieving symptoms and side effects 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.

Diagnosis

Doctors use many tests to diagnose cancer and find out if it has spread. Some tests may also determine which treatments may be the most effective. A patient history, physical examination, complete blood cell count (CBC), and bone marrow aspiration (see below) are the main procedures used to diagnose ALL, and each is used to diagnose ALL or rule out other conditions.

Blood tests. A CBC provides a count of each type of cell in the blood. The blood count may also show abnormal leukemia cells. The blood count is abnormal, in some way, for nearly all children with ALL at the time of diagnosis.

Bone marrow aspiration. A bone marrow aspiration is recommended if the blood test shows unusual blood counts or immature cells in the blood, or if the doctor suspects that a child may have leukemia. Bone marrow has both a solid and a liquid part. An aspiration removes a sample of fluid with a needle. The sample is then analyzed by a pathologist. A common site for a bone marrow aspiration is the pelvic bone, which is located in the lower back by the hip. The skin is usually numbed with medication beforehand, and other types of anesthesia may be used.

From this test, the doctor can determine whether the child has leukemia and, if so, what type of leukemia it is. The doctor or nurse will collect multiple samples of bone marrow at the same time for other tests, such as chromosome and molecular genetic analyses and immunophenotyping (see Classification). These additional tests are often extremely important to determine the most appropriate treatment plan.

Lumbar puncture (spinal tap). A lumbar puncture can determine if the leukemia has spread to the cerebral spinal fluid (CSF). CSF is the fluid that flows around the brain and the spinal cord. During a lumbar puncture, the doctor takes a sample of the CSF to look for leukemia cells. Doctors generally give an anesthetic to numb the lower back before the procedure and/or use anesthesia. Whether or not there is leukemia in the central nervous system helps doctors choose the most appropriate treatment. There are many times when it is appropriate to give medicine to treat or prevent leukemia of the central nervous system at the same time as the lumbar puncture.

Learn more about what to expect when having common tests, procedures, and scans.

After these diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer; this is called classification. Learn more about the first steps to take after a diagnosis of cancer.

Classification

While there is no staging system for pediatric ALL compared to other types of cancer, there are a number of factors that help doctors choose the best treatment plan and determine the chance that the cancer will come back after treatment. Doctors plan the child’s treatment based on these and other factors:

Age. Infants younger than 12 months and children age 10 and older need more intensive treatments.

White blood cell counts. Children with higher white blood cell counts need more intensive treatments. Commonly, white blood cell counts are labeled as higher if they are more than 50,000 per microliter (ml).

Immunophenotyping. This term refers to a test that shows the types and amounts of proteins produced (expressed) by the leukemia cells. Knowing if the cancer cells express the proteins more closely resembling those of normal white blood cells called B-cells or T-cells will help doctors plan appropriate treatment and is useful to help predict how the cancer will respond to treatment.

Genetic abnormalities in the leukemia cells. Abnormal numbers of chromosomes, abnormal structural changes in a chromosome, or certain molecular genetic changes in the chromosomes of leukemia cells may affect outcome and treatment. Note that the genetic changes referred to here are changes in the genetic material of the leukemia cells, not the child’s cells--most children with leukemia have completely normal genes.

Response to early treatment. How the leukemia responds to the first one to four weeks of treatment (determined by examining the child’s blood or bone marrow) may predict the overall response to treatment. Recent studies have shown that some children may need more intense treatment to improve the chance of a cure. This includes children whose cancer is not responding well to early treatment or those who have high levels of residual leukemia cells (cells remaining after treatment) at the end of remission induction (see Treatment).

Treatment

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

Untreated ALL. The child hasn’t yet received any treatment.

ALL in remission. There are normal levels of white and other blood cells after treatment. Physical examinations, blood counts, and bone marrow aspirates show no detectable leukemia. Remission is the absence of signs or symptoms of leukemia. However, it is very important to continue treatment, even when a child is in remission, to keep the leukemia from coming back.

Recurrent ALL. Recurrent ALL is cancer that comes back after the child has had some period of remission. The leukemia may recur in the bone marrow, spinal fluid, testicles (for boys), or less commonly, in other areas of the body.

Refractory ALL. The leukemia did not go into remission, despite remission induction treatment (see below).

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 proven treatments available) with newer treatments that may be more effective. Investigating 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, all 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. In many cases, a team of doctors treats a child with cancer; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for childhood ALL are listed below. Three types of treatments are used to treat childhood ALL: chemotherapy, radiation treatment, and stem cell transplantation/bone marrow transplantation. Sometimes, these treatments are used in combination. Treatment options and recommendations depend on several factors, including the type and classification of cancer, possible side effects, and the patient’s preferences and overall health. Learn more about making treatment decisions.

Chemotherapy

Chemotherapy is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. Chemotherapy is given by a pediatric oncologist; medical oncologist, a doctor who specializes in treating cancer with medication; or a hematologist, a doctor who specializes in treating blood disorders. A chemotherapy regimen (schedule) usually consists of a specific number of cycles of drugs 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.

Chemotherapy is the primary treatment for ALL. Some of the drugs used as chemotherapy are also used to treat other illnesses. For example, prednisone (multiple brand names) is often used to treat not only ALL, but asthma, poison ivy, and allergic reactions. Chemotherapy may be given by mouth (orally), injected into a vein or muscle, or injected into the cerebral spinal fluid (CSF). It is generally done in four phases:

Remission induction therapy uses chemotherapy to kill as many of the cancer cells as possible to cause the cancer to go into remission.

Central nervous system directed therapy kills any cancer cells in the central nervous system and prevents the spread of the cancer to the spinal fluid.

Consolidation therapy begins when the child’s cancer has gone into remission. Higher doses of chemotherapy, or drugs not used during previous treatment, are used to kill the majority of the remaining cancer cells.

Continuation or maintenance therapy lasts for two to three years to kill any residual leukemia.

The side effects of chemotherapy depend on the individual and the dose used, but they can include short term side effects like fatigue, loss of appetite, nausea and vomiting, diarrhea, and liver dysfunction. If a drug called vincristine (Oncovin, Vincasar) is part of your child’s chemotherapy, there may be muscle weakness and nerve pain. These side effects usually go away once treatment is finished. Other side effects related to chemotherapy that may persist or develop after treatment is finished include bone and joint problems and learning problems. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug. The degree to which children experience side effects may also be affected by other factors, including genetic differences in the way the medications are processed by the body, the child or teen’s age when diagnosed, and their overall health and well-being.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your 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 your child’s prescriptions by using searchable drug databases.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to kill 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 ALL is generally used only when the cancer has spread to the brain, spinal fluid, or a boy’s testicles, or in high-risk disease to help prevent the spread of leukemia to the spinal fluid. Radiation therapy is more often used for patients with T-cell leukemia.

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. However, long-term side effects of radiation treatment to the brain and body can occur and may possibly include hormone problems affecting growth and metabolism, learning problems, and an increased risk of developing a second cancer including a brain tumor. Skin, salivary gland, and thyroid cancers can also occur after treatment for ALL (see After Treatment). Learn more about radiation therapy.

Stem cell transplantation/bone marrow transplantation

Stem cell transplantation is most often used as a treatment for ALL if the leukemia has recurred. Rarely, transplantation may be recommended as part of the initial therapy when leukemia is associated with very high risk features. A stem cell transplant is a medical procedure in which diseased bone marrow is replaced by highly specialized cells, called hematopoietic stem cells. Hematopoietic stem cells are 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, because it is the blood stem cells that are typically being transplanted, not the actual bone marrow tissue.

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

There are two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO).

In an ALLO transplant, stem cells are obtained from a donor whose tissue matches the patient’s on a genetic level; this testing is called HLA-typing. Most often, a patient’s brother or sister serves as the donor, although unrelated donors can serve as the donor too. Millions of people worldwide have volunteered to donate stem cells for patients who do not have matched family members; your health care team will search a computer registry to look for a match. In addition, a donation of stem cells derived from umbilical cord blood is sometimes considered if family donors are not available.

In an AUTO transplant, the patient’s own stem cells are used. The stem cells are obtained from the patient when he or she is in remission from previous treatment. The stem cells are then frozen until they are needed, usually after the high-dose treatment (explained below) is completed.

In both types, the goal of transplantation is to prevent the cancer cells in the marrow, blood, and other parts of the body from returning. The transplant allows the patient’s marrow to be replaced with healthy blood stem cells from another source. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many cancer cells as possible. This also destroys the patient’s bone marrow tissue and suppresses the patient’s immune system so that, in an ALLO transplant, the donor cells are not rejected by the body. After the high-dose treatment is given, blood stem cells are infused into the patient’s vein to replace the bone marrow and restore normal blood counts from donor cells. Sometimes, ALLO transplants can also be performed after giving lower doses of chemotherapy and/or radiation therapy that are still sufficient to suppress the immune system and allow growth of the donor cells. These transplants, sometimes termed “mini-transplants” or reduced-intensity transplants, have less immediate side effects, allowing the procedure to be used for frailer patients.

For both ALLO and AUTO transplant types, the replacement cells engraft (begin to make new blood cells) and turn into healthy, blood-producing tissue in 10 days to three weeks. Destroying the patient’s own marrow reduces the body’s natural defenses, temporarily leaving the patient at an increased risk of infection. Until the patient’s immune system is back to normal, patients may need antibiotics and blood transfusions, and they need to follow certain safety restrictions provided by the health care team to help avoid infections.

In an ALLO transplant, another major risk is that the donor’s cells will recognize the patient’s body as foreign, causing graft-versus-host disease (GVHD). GVHD may be a mild or serious complication of allogeneic transplants, and can even be fatal. Other side effects may include liver problems, diarrhea, infections, and rashes. However, GVHD can also be a benefit because the donor cells can recognize the cancer cells as foreign and destroy these cells, a mechanism that is one of the major reasons why ALLO transplantation generally works so well over the long term. The risk of GVHD can be reduced with exact HLA-type matching and the use of preventive drugs.

In an AUTO transplant, there is little risk of GVHD because the replacement stem cells are the patient’s own cells. However, there is a risk in an autologous transplant that some of the cells that are put back into the patient could still be cancerous. Learn more about bone marrow and stem cell transplantation.

Recurrent ALL

Once your child’s treatment is complete and there is a remission (also called “no evidence of disease” or NED), talk with your child’s doctor about the possibility of the cancer returning. Many families feel worried or anxious that the cancer will come back. Learn more about coping with this fear.

If the ALL recurs, 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 treatment options. Often the treatment plan will include the therapies described above (such as chemotherapy and radiation therapy) but may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Just as for newly diagnosed patients, clinical trials typically offer the best chance of cure.

If the ALL recurs, treatment depends on many factors, including the type of treatment the child received originally, the length of time between the initial diagnosis and the recurrence, and whether leukemia cells are found in the bone marrow, CSF, testicles, or in a combination of these sites at the time of recurrence.

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 it 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. 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.

Find out more about common terms used during cancer treatment.

About Clinical Trials

Doctors and scientists are always looking for better ways to treat children with ALL. To make scientific advances, doctors create research studies involving people, called 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. New treatments are commonly the best available therapy modified in ways that may bring about a better result. 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 doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

People decide to participate in clinical trials for many reasons. For most patients, 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 children with ALL. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with ALL.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare in general, and placebos are never used in clinical trials for the treatment of children with cancer. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

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. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find clinical trials.

For specific topics being studied for childhood ALL, learn more in the Current Research section.

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. 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 trials ends, and/or if the patient chooses to leave the clinical trial before it ends.

Side Effects

Cancer and its treatment can cause a variety of side effects. However, doctors have made major strides in recent years in reducing pain, nausea and vomiting, and other physical side effects of cancer treatments. Many treatments used today are less intensive but as effective as treatments used in the past. Doctors also have many ways to provide relief to patients when such side effects occur.

Fear of treatment side effects is common after a diagnosis of cancer, but it may be helpful to know that preventing and controlling side effects is a major focus of your health care team. Before treatment begins, talk with your child’s doctor about possible side effects of the specific treatments you will be receiving. The specific side effects that can occur depend on a variety of factors, including the type of cancer, its location, the individual treatment plan (including the length and dosage of treatment), and your child’s overall health. Common side effects for each treatment option are described in detail within the Treatment section.

Ask your child’s doctor which side effects are most likely to happen (and which are not), when side effects are likely to occur, and how they will be addressed by the health care team. Also, be sure to communicate with the doctor about side effects your child experiences during and after treatment. Care of a patient’s symptoms and side effects is an important part of a person’s overall treatment plan; this is called palliative or supportive care. It helps people with cancer at any stage of illness be as comfortable as possible. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them.

Be sure to talk with your doctor about the level of caregiving your child may need during treatment and recovery, as family members and friends play an important role in the care of a child with ALL. Learn more about caregiving.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. A diagnosis of childhood ALL is stressful and can bring difficult emotions. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies. Learn more about the importance of addressing such needs, including concerns about managing the cost of your medical care.

A side effect that occurs more than five years after treatment is called a late effect. Treatment of late effects is an important part of survivorship care. Learn more about late effects or long-term side effects by reading the After Treatment section or talking with your child’s doctor.

After Treatment

After treatment for ALL ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including ALL, should have life-long, follow-up care.

Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects, such as learning disabilities, anxiety, bone and joint damage, heart damage, and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should address the child’s quality of life, including any developmental or emotional concerns. Learn more about childhood cancer survivorship.

For most childhood ALL survivors, there are relatively few significant long-term side effects. A recent study showed that patients who did not receive radiation therapy and have been in remission at least 10 years were similar to the general population in terms of rates of health care coverage, marriage, and employment. Survivors should be sensitive to their level of functioning and level of stress, and they may need counseling if they have any problems. It is important that children have trouble with school have neuropsychological testing to find the cause. Tutoring in academic subjects or providing help in achieving appropriate organizational skills is very important since many problems are correctable with help. Survivors should also be evaluated for bone or joint pain as it may be caused by treatment-related destruction of the bone.

If a child did not receive radiation therapy and intensive chemotherapy with cyclophosphamide (Cytoxan, Clafen, Neosar) and/or etoposide (VePesid, Toposar), secondary cancers and infertility (the inability to have children) are rare. Future heart problems are rare, but if types of drugs called anthracyclines, such as doxorubicin (Adriamycin) or daunorubicin (Cerubidine, Rubidomycin), were used during treatment, periodic heart muscle testing with an echocardiogram may be recommended. Although the risk to any one person is small, radiation therapy increases the risk of hormone problems affecting growth and metabolism and second cancers including brain tumors. Radiation, high-dose chemotherapy, and spinal fluid injections of chemotherapy like methotrexate (multiple brand names) and cytarabine (Cytosar-U, Tarabine PFS) also increase the risk of learning problems.

Patients should receive follow-up screening at gradually increasing intervals to monitor for:

  • Recurrence (rare after the end of the second year), after chemotherapy is completed

  • Liver disease, caused by chemotherapy or transfusion-related infection (both very rare)

  • Heart disease

  • Bone health

  • Fertility issues

  • Endocrine (hormonal) changes, if radiation therapy was used

  • School problems (as described above)

  • Problems related to getting insurance coverage

Note that much of the data used to demonstrate that childhood cancer survivors are good candidates for insurance will come through the collection of long-term, follow-up data on survivors.

The child’s family is encouraged to organize and keep a record of the child’s medical information so that, 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. The doctor’s office can help you compile this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

Children who have had cancer can also 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 a balanced diet, 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 the next steps to take in survivorship.

Find out more about common terms used after cancer treatment is complete.

Current Research

Doctors are working to learn more about ALL, how to best treat it, and how to provide the best care to people 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.

Monitoring leukemia recurrence. New methods for detecting small numbers of leukemia cells that can’t be seen under a microscope were introduced in the 1990s. These techniques are now being used to detect minimal residual disease (MRD) after remission. There are times when measurements of MRD, in blood or bone marrow samples, will be used to determine your child’s risk level and treatment. Research is ongoing to determine the level of MRD, measured at which time point, that affects the rate of recurrence. This research also looks at whether changes in treatment will change the meaning of MRD measurements and their effect on the cure. Currently, researchers are studying the relationship between the biology of the leukemia cells and these measurements.

New treatments. Finding new ways to treat leukemia are important areas of research. New drugs to kill leukemia cells, such as the T-cell-specific drug nelarabine (Arranon) and the antibody epratuzumab (LymphoCide) are being studied and may improve the cure rate for children with ALL in the future. Other new treatments—antibodies, chemotherapy, and other biologically active treatments—are being studied with the hope that they will increase the cure rate and/or decrease the likelihood of side effects.

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

Learn more about common statistical terms used in cancer research.

Looking for More about Current Research?

If you would like additional information about the latest areas of research regarding childhood ALL, explore these related items:

Or, choose “Next” (below, right) to continue reading this detailed section.

Questions to Ask the Doctor

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.

  • What type of leukemia does my child have?

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

  • Will more tests be needed to confirm the diagnosis?

  • What are the results of the analysis of the spinal fluid? What does this mean?

  • What are the results of the bone marrow aspiration? What does this mean?

  • What are the results of the cytogenetic studies done? What does this mean?

  • What are the treatment options?

  • What clinical trials are open to my child?

  • What treatment plan do you recommend? Why?

  • 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 and follow-up care?

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

  • What can I do to protect my child from infection during and after treatment?

  • When should I call the doctor or hospital if there is a problem while at home with my child?

  • 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?

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

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

  • Are there blood tests or check-ups that can be done closer to home?

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

Patient Information Resources

In addition to Cancer.Net, there are other sources of information about this type of cancer available online. Cancer.Net maintains a list of national, not-for-profit organizations that may be helpful in finding additional information, services, and support. As always, be sure to talk with your doctor about questions you may have about information you find about this disease.

View organizations that offer information on this specific type of cancer.