Leukemia, Part 2 — Treatment, Side Effects, Restrictions, and Implications for School

Treatment

A person with leukemia is treated by a doctor who specializes in the treatment of cancers, called an oncologist or a hematologist. The doctor is the best person to explain treatment, because it will differ depending on the type of leukemia, the age of the patient and many other factors. The treatment for leukemia generally includes chemotherapy. Sometimes, the treatment will also include radiation therapy, and bone marrow or stem cell transplant.

People with acute leukemia need to start treatment right away. The goal of treatment is to bring about a "remission", where the signs and symptoms of leukemia disappear. Treatment will continue after remission has been achieved in order to prevent a relapse, or return of the disease. Many children with acute leukemia can be cured.

Having leukemia is not easy. Therefore, in addition to the anti-cancer treatments, a child with leukemia might receive other types of treatment. These treatments might be needed to control pain, nausea or other side effects. Some treatment can also help with the emotional distress of having leukemia. These types of treatment may be called symptom management, supportive care or palliative care.

Chemotherapy

Medications are developed in laboratory.

Chemotherapy refers to the many different types of drugs that are used to get rid of cancer cells. Chemotherapy is usually given in cycles or courses: a treatment period, followed by a recovery period, and then another treatment period as the process repeats. Some chemotherapy can be given in an outpatient clinic, a doctor's office, or even at home. Other drugs must be given in the hospital, where the young person will stay for a few days.

Chemotherapy can be given in several different ways:

  • by mouth (orally) in the form of liquid or pills
  • by injection directly into a vein (intravenously or IV)
  • through a catheter (a thin, flexible tube) placed in a large vein, often in the top part of the chest. Catheters stay in place for many months or years, and are useful for patients who will require many courses of IV treatments. It removes the need to place a needle in the vein each time chemotherapy or other medications are needed. Instead, the health care professional can inject drugs into the catheter, preventing much discomfort.
  • in shots (subcutaneously)
  • into the spinal fluid. These are called intrathecal (in'-truh-THEE'-kuhl) medications. The procedure that is used to give chemotherapy into the spinal fluid is called a "lumbar puncture". Medication is given to make the child sleepy, so the procedure will not be remembered. During the lumbar puncture, chemotherapy is injected directly into the spinal fluid. This method of administering the chemotherapy helps get rid of cancer cells that might be in the brain and spinal fluid, which cannot be reached when the chemotherapy is given any other way. Intrathecal medication can also be administered through a device called an "Ommaya reservoir". The reservoir is placed under the child's scalp, and a catheter leads to the spinal fluid. Chemotherapy drugs can then be injected directly into the reservoir.

Radiation therapy

Radiation therapy, also called radiotherapy, uses high-energy rays to kill leukemia cells. A large machine directs radiation at the spleen, the brain, or other parts of the body where leukemia cells have collected. Some patients get total-body irradiation, which is radiation that is directed to the whole body. This is usually given before a bone marrow or stem cell transplant. Radiation may be given at a hospital or at a clinic. Often, the patient comes each day for several weeks to get a radiation treatment, and then goes home.

Stem cell transplant

Sometimes, a young person with leukemia will receive a stem cell transplant. This allows the patient to be treated with very high doses of chemotherapy or radiation. These high doses can be more effective at destroying all of the leukemia cells in the body. However, they can also destroy the normal cells in the body. Following this treatment, the patient receives healthy stem cells through a flexible tube placed in a large vein in the neck or chest area. New blood cells develop from the transplanted stem cells, replacing the leukemia cells. The patient usually stays in the hospital for several weeks after the transplant, until the transplanted stem cells begin to produce enough white blood cells to protect the child from infection. After receiving a stem cell transplant, a student must stay out of school for several months, until the immune system can fight off infections.

Cord blood as source for stem cell transplant.

There are several types of stem cell transplantation:

  • Bone marrow transplantation — Stem cells come from the bone marrow.
  • Peripheral stem cell transplantation — Stem cells come from peripheral blood.
  • Umbilical cord blood transplantation — For a child who does not have a donor, the doctor may use stem cells from umbilical cord blood donated when a new baby is born. This blood is very rich in stem cells and has often worked well for transplants.

Stem cells come from the patient or from a donor. A donor is another person who has the same or similar type of bone marrow. A brother or sister often provides the best match for bone marrow.

  • Autologous stem cell transplantation — This type of transplant uses the patient's own stem cells. The stem cells are removed from the patient and treated to kill any leukemia cells that are present. The cells are then frozen and stored, to be given back to the patient following high dose chemotherapy or radiation therapy.
  • Allogeneic stem cell transplantation — This type of transplant uses healthy stem cells from a donor. The patient's brother, sister or parent may be the donor, if the bone marrow is compatible. If not, an unrelated donor is sought from a registry of potential bone marrow donors across the continent.
  • Syngeneic stem cell transplantation — If the patient has an identical twin, syngeneic stem cells may be used for transplantation.

Other treatment considerations

Due to the frequent infections that people with leukemia may acquire, antibiotics and other drugs may be given frequently. The doctors, nurses, and other members of the health care team may advise the young person to stay away from football games, grocery stores, the mall, and other places where there may be crowds and people with colds and other contagious diseases. An infection should be treated seriously, and medical attention should be sought immediately. Patients may need to stay in the hospital for intravenous antibiotics and other treatments.

Transfusions of red blood cells or platelets are commonly needed during leukemia therapy. Red blood cells will give the patient more energy, and platelets will reduce the risk of serious bleeding. These transfusions can be given in an outpatient setting, such as a clinic or the doctor's office.

Dental care is also very important during treatment for leukemia, because both the leukemia and the chemotherapy can make the mouth sensitive, easily infected and likely to bleed. The doctor and dentist will help the patient and parents understand proper care of the mouth during treatment.

Possible treatment side effects

It is common for a person with leukemia to have side effects from treatment. The treatments for cancer must be strong enough to rid the patient of leukemia cells, but healthy cells might be damaged as well. The type and severity of side effects will depend on the specific chemotherapy given and the doses used; whether radiation is given and the doses used; and many other factors.

Chemotherapy side effects

The side effects of chemotherapy depend mainly on the specific drugs used and the doses given. In general, anticancer drugs affect cells that divide rapidly, such as leukemia cells. The other rapidly dividing cells that may be affected by chemotherapy include:

  • Blood cells — These cells fight infection (white blood cells), help blood clot (platelets), and carry oxygen to all parts of the body (red blood cells). When these blood cells are affected, the child is likely to get infections, bleed or bruise easily, and feel tired or weak. There are medicines that can help increase the quantity of these cells quickly. Alternatively, blood transfusions may be given to help red blood cells and platelets recover.
  • Hair loss is common.
  • Hair root cells — Chemotherapy may cause the person to have partial or complete hair loss. This is a temporary side effect, and the hair will grow back when treatment is completed. However, the hair may be a different color or texture than it was before chemotherapy treatments.
  • Cells of the digestive tract — Mucositis is a term to describe sores that may go from the mouth all the way through the other end of the digestive tract (anus). In addition to mucositis, the person receiving chemotherapy may experience nausea, vomiting, diarrhea or a poor appetite. Many of these side effects can be controlled with medications.

Radiation side effects

Side effects of radiation therapy vary from person to person, and depend on the dose and site of the treatments. Some patients may become very tired as the treatment continues, and it is important to get enough rest during this time. The skin over the treatment area may become red, dry and tender. The doctor or radiation oncologist may suggest ways to treat the skin.

Stem cell transplantation

The risk of infection, bleeding and other side effects increases with stem cell transplantation, because of the very high doses of chemotherapy or radiation that must be given.

Graft-versus-host disease (GVHD) can occur in children who receive stem cells from a donor. In GVHD, the donated stem cells react against the patient's tissues. The organs that are most often affected include the liver, skin and digestive tract. GVHD can be mild or severe, and can occur any time after the transplant. Steroids or other drugs may help.

Physical, dietary and other restrictions

Physical restrictions will vary from person to person. The doctor and health care team will let the patient know what physical restrictions are necessary. If the patient has a central line or intravenous catheter, precautions should be taken to ensure that it does not become dislodged or kinked. When platelet levels are low, the health care team may recommend restriction of physical education and recess activities. Other limitations may be suggested to prevent catching an infection, such as avoiding large crowds and using good hand washing techniques. However, it is recommended that the young person with leukemia participates in school as much as possible throughout treatment.

Good nutrition is very important.

It is important for an individual with leukemia to try to eat well during treatment. Sufficient calories and protein must be consumed for the patient to maintain weight and strength, heal the body, and permit normal growth. Good nutrition can help the patient feel stronger and more energetic. However, it is sometimes difficult to eat well during treatment due to the side effects of anti-cancer medications. The doctor or dietitian may offer suggestions to help maintain a healthy diet. If a person receives a stem cell transplant, some foods may be restricted to control exposure to bacteria. Again, the doctor and healthcare team are the best source for more information.

Implications for school

The diagnosis of leukemia may carry significant implications for a child in school, and the management of leukemia at school has several facets. Educators must consider the physical, psychosocial, and cognitive or educational issues of this diagnosis to ensure that the student with leukemia is successful in school.

The physical aspects of leukemia must be addressed at school. The following accommodations and adaptations may be warranted for a child with leukemia:

  • Due to the possibility of fatigue, a child with leukemia may need to rest during the school day. It is usually best to do this in the nurse's office or another location away from peers, to avoid creating the perception that the child is "different".
  • Restroom privileges should be flexible and provided when needed.
  • Exercise may benefit the child with leukemia by increasing muscle strength. The student should be encouraged to participate in all physical activities at school. The student's abilities and limitations should be evaluated daily, and individual limitations recognized. These limitations may be related to strength, stamina or endurance, and often will vary daily. For example, steroids might create fluid retention and weight gain, which would limit the student's mobility. The child should be encouraged to participate as much as possible, but should be allowed to set personal limits on each day's physical activity.
  • Physical stamina should be evaluated by the school nurse, and any modifications or accommodations that are indicated should be incorporated into the student's IEP.

Psychosocial concerns for the student with leukemia may be significant. Due to frequent absences, frequent infections, and limitations on physical activity, the student with leukemia will flow in and out of school and will often struggle to "fit in". The student may feel excluded by peers and unable to keep up socially. To promote healthy psychological, emotional and social adjustment, the school should consider the following:

  • Educate peers, with the consent of the child and parents, about leukemia. The hospital school teacher is a good resource for offering a presentation; suggesting materials; and assisting with the education of educators, peers and other interested community members.
  • Encourage peers to stay in contact with the student during school absences. Cards, letters, phone calls, e-mails and text messages can bridge the gap when a friend with a chronic illness must miss school and activities.
  • Use this opportunity to teach peers about supporting a friend, showing compassion, and other essential life lessons.
  • Study groups are important.
  • Identify academically strong peers to mentor the student after returning from an absence. A peer can "fill the student in" on what was missed during the illness, and can help provide a smooth re-entry to school.
  • Help the student find areas of expertise and ways to excel in the school environment. Mentoring support could be included in the IEP to help the student develop and maintain a strong self-concept.
  • Include social work or counseling services as part of the IEP. The presence of someone at school in whom the student can confide, and who can act as the student's advocate, can be a significant asset. The student may need the opportunity to discuss concerns and fears about dying, the future in general, keeping up in school, social pressure, other family members, and many other issues.

KU Kids Healing Place

During treatment for leukemia, there are many challenges for the child and family. In addition to the essential medical treatments, it is important to care for the psychological, social and spiritual needs of the patient and the family. This type of care, called palliative care, previously had been reserved for only the sickest patients. However, research has demonstrated that palliative care helps maintain normalcy throughout treatment, recovery and life. Today, every child with leukemia receives the benefit of palliative care, along with the family members. The KU Kids Healing Place (KUKHP), through the Department of Pediatrics at the University of Kansas Medical Center, focuses on treating all aspects of the child and family, ensuring that each receives the care needed to maintain psychological, social and spiritual well-being during treatment for leukemia and on into life. The entire treatment team will work to ensure that the needs of the child are recognized and addressed both in the hospital and in the community, including school, sports, worship and activities. KUKHP partners with school professionals, peers, clergy, coaches, scout leaders and many others to ensure that the child continues to grow and achieve in all environments.


For more information

Part 1 — Introduction, Incidence and Symptoms

Curesearch

Leukemia and Lymphoma Society

National Cancer Institute

Contributed by:

Mukta Kumar, MD
Assistant Professor
Section Chief
Division of Pediatric Hematology and Oncology
Department of Pediatrics
University of Kansas Medical Center

Kathy Davis, MSEd, PhD
Associate Professor
Project Director, Connected Kansas Kids
Director, KU Kids Healing Place
University of Kansas Medical Center