Questions About Cancer? 1-800-4-CANCER

Young People with Cancer: A Handbook for Parents

  • Posted: 07/31/2003

What About Treatment?

Surgery
Chemotherapy
Radiation Therapy
Immunotherapy
Bone Marrow and Peripheral Blood Stem Cell Transplants
Complementary and Alternative Medicine
Hospitalization

To plan the best treatment, the doctor and treatment team will look at your child's general health, type of cancer, stage of the disease, age, and many other factors. Based on this information, the doctor will prepare a treatment plan that outlines the exact type of treatment, how often your child will receive treatment, and how long it will last. Each child with cancer has a treatment plan that is chosen just for that child; even children with the same type of cancer may receive different treatments. Depending on how your child responds to treatment, the doctor may decide to change the treatment plan or choose another plan.

Before treatment begins, your child's doctor will discuss the treatment plan with you, including the benefits, risks, and side effects. Then you and the treatment team will need to talk with your child about the treatment. After the doctor fully explains the treatment and answers your questions, you will be asked to give your written consent to go ahead with treatment. Depending on your child's age and hospital policy, your child may also be asked to give consent before treatment.

The treatment plan may seem complicated at first. But the doctor and treatment team will explain each step, and you and your child will soon become used to the routine. Many parents find it helpful to get a copy of the treatment plan to refer to as the treatment proceeds. It also helps them in arranging their own schedules. Do not be afraid to ask questions or speak up if you feel something is not going right. Your child's doctor is often the best person to answer your questions, but other members of the treatment team can give you information, too. If you feel as though you need extra time with the doctor, schedule a meeting or phone call. Remember, you are part of the treatment team and should be involved in your child's treatment.

What Are the Different Types of Cancer Treatment?

The types of treatment used most often to treat cancer are surgery, chemotherapy, radiation therapy, immunotherapy, and bone marrow or peripheral blood stem cell transplantation . Doctors use these treatments to destroy cancer cells. Depending on the type of cancer, children may have one kind of treatment or a combination of treatments. Most children receive a combination of treatments, called combination therapy.

Treatments for cancer often cause unwanted or unpleasant side effects such as nausea, hair loss, and diarrhea. Side effects occur because cancer treatment that kills cancer cells can hurt some normal cells, too. As your child begins treatment, you may want to keep the following in mind.

  • The kinds of side effects and how bad they will be depend on the kind of drug, the dosage, and the way your child's body reacts.
  • The doctor plans treatment so that your child has as few side effects as possible.
  • The doctor and treatment team have ways to lessen your child's side effects. Talk with them about things that can be done before, during, and after treatment to make your child comfortable.
  • Lowering the treatment dosage slightly to eliminate unpleasant side effects usually will not make the treatment less able to destroy cancer cells or hurt your child's chances of recovery.
  • Most side effects go away soon after treatment ends.

Remember that not every child gets every side effect, and some children get few, if any. Also, how serious the side effects are varies from child to child, even among children who are receiving the same treatment. The doctor or treatment team can tell you which, if any, side effects your child is likely to have and how to handle them. If you know what side effects can occur, you can recognize them early.

Surgery

For many solid tumors, surgery is an essential part of the treatment. Surgery is a local therapy to remove the tumor. Tissue around the tumor and nearby lymph nodes may also be removed during the operation. Sometimes radiation or chemotherapy is used first to shrink the tumor before it is removed. Shrinking the tumor makes the surgery easier.

Helping Your Child Face Fears About Surgery

Your child is likely to have many worries about surgery. Your child may ask:

  • What is it like to be put to sleep?
  • Will I feel a lot of pain?
  • Will my body be changed?
  • How will I feel about my body after the operation?
  • Will my parents be with me when I wake up?

Here are some suggestions that might help your child face surgery:

  • Give honest answers to your child's questions. Your child may lose trust in you if what you say does not match what really happens. Your child needs to trust you.
  • Learn as much as you can about your child's operation. To give the correct answers to your child's questions, you will need to find out as much as possible about what will happen. The doctors and other members of the treatment team can give you the facts you need to prepare your child.
  • Visit the operating and recovery rooms before the surgery. To help children get ready for surgery, many hospitals encourage them to visit the rooms where they will be during surgery and recovery. They can meet and talk with the people who will be there. For instance, young children may be shown a surgical mask and given one to try on or to put on a toy or another person.
  • Talk with your child about feelings and concerns. Above all, try to get your child to talk about any feelings or concerns he or she has about the surgery.

Possible Side Effects of Surgery

Side effects from surgery depend on the location of the tumor, the type of operation, the child's general health, and other factors. Common side effects include pain, headaches, nausea, and constipation. These effects may be from the surgery, pain medicine, or lack of exercise. The doctor will give your child medicine, as needed, to help ease these side effects and other symptoms.

Children and Amputations

In the past, amputations were often necessary to remove bone tumors in the arms and legs. Depending on the type of tumor, however, doctors more and more can use procedures that spare the limb and make amputation unnecessary. Fewer children suffer the loss of a limb. Your child's treatment team will explain the options available to you.

For some children, however, amputation remains the best choice. These children have special concerns. They wonder what it will be like not to have an arm or leg. Will they be able to do everyday things? How will they do them? How will others act toward them? They may feel a lack of wholeness after surgery. Sometimes it is more difficult for parents than for children to adjust to an amputation. Generally, younger children adjust more quickly. Adolescents have special concerns. They may be more sensitive about the way they look to others. They also may worry about how the amputation will affect developing and keeping relationships, participating in sports activities, getting married, and having children.

It may be helpful for your child to see how others have adjusted to an amputation. Meeting other children who have had amputations and who are doing well can be very helpful. Your child will learn that he or she can have a full and active life - most children can participate in the same activities they did before having an amputation. They can still walk, run, ride a bicycle, ski, swim, and even mountain-climb. It may also help for the treatment team to show your child an artificial limb, or prosthesis, and other devices or aids that will help with movement.

After surgery, your child will be aware of a bulky dressing or bandage at the site of the surgery. Your child may feel "phantom pain," an eerie but common feeling. Sensations such as cold, itching, and pain are felt in the limb as if it were still part of the body. Doctors do not know what causes phantom pain. The best explanation is that the brain has been accustomed to receiving messages from the nerves in the limb that has been amputated. It takes time for the brain to get used to the nerve fibers that remain and the new messages from the stump. Sometimes a light massage and changing the position of the stump will offer some relief. The doctor will usually start medication ahead of time to ease your child's pain and can also order some medicine to treat the phantom pain when it happens.

As part of the rehabilitation, a physical therapist will help your child with exercises to strengthen the muscles needed to support a temporary prosthesis. These exercises are often hard and can be painful, so your child needs to be encouraged and supported during this time. Once the muscles become stronger, the doctor may order a temporary prosthesis for your child. The prosthesis is made by a prosthetist, a person skilled in making artificial limbs. The temporary prosthesis will be bulkier and heavier than the permanent one. The way it looks may be disappointing, but the added heaviness will further strengthen the stump and the bulkiness will protect it. Once the stump is fully healed, and your child is able to move the limb well with the temporary prosthesis, fitting for the permanent prosthesis will begin.

Health professionals will be available to help your child and family throughout the entire process - from making treatment choices to adjusting to the permanent prosthesis. Drawing upon the strength and comfort of family members and joining a support group may also help you cope.

Chemotherapy

Chemotherapy is the use of "anticancer drugs" to treat cancer. Chemotherapy is systemic therapy, which means that the drugs flow through the bloodstream to nearly every part of the body to kill cancer cells wherever they may be. Because some anticancer drugs work better together than alone, chemotherapy may consist of more than one drug. This approach is called combination chemotherapy

Depending on the type of cancer your child has and which drugs are used, chemotherapy may be given in one or more of these ways:

  • By mouth (oral medication) - The drugs are swallowed in liquid or pill form. If your child has trouble swallowing pills, you can break the pills into smaller pieces, or you may crush and mix them with applesauce, jam, pudding, or other food that your child likes.
  • Intravenously (IV) - The drugs are injected by needle into a vein or into an IV line.
  • Intramuscular injection (IM) - The drugs are injected by needle into the muscle. Your child will know it as a "shot."
  • Subcutaneous injection (SC) - The drugs are injected by needle just below the skin. Your child will also know this as a "shot."
  • Intrathecal injection (IT) - The drugs are injected by needle into the spinal fluid

Although your child may be able to receive chemotherapy treatments at home, he or she will probably need to go to the hospital or doctor's office to receive IV drugs or injections. Depending on the medicine, your child may need to stay in the hospital, perhaps overnight or longer.

Oral Chemotherapy

When possible, involve your child in this treatment. For example, you may want to keep a special calendar to help your child track when medicine should be taken. Older children, particularly adolescents, may want to be responsible for taking and keeping track of their medication. Even so, you still need to make sure that the medicine is being taken as ordered. Be sure to notify the doctor if your child misses any doses of medication or if he or she vomits them up.

Intravenous Chemotherapy

Your child will get the drug through a thin needle put into a vein, usually on the hand or in the arm. In babies and very small children, the needle may be placed in a vein in the scalp. Although getting chemotherapy usually does not hurt, it may be painful when the IV needle is put in, and the drugs may cause a burning feeling. If the drug leaks from the vein, it may burn the skin, so care must be taken to make sure the IV line is firmly in place. The nurse or doctor must act right away if the needle comes out of the vein.

Another way to give IV chemotherapy is through a catheter. The catheter remains in place during the course of treatment so that drugs can be given without having to place a needle into the vein over and over again. The most commonly used are central venous catheters. While the child is under general or local anesthesia, the catheter is usually put into a large vein in the chest by making a small incision (cut) near the collarbone. Two types of central venous catheters are commonly used.

  • One type of catheter is an external venous catheter (for example, a Broviac or Hickman catheter). In this type of catheter, the plastic tube extends outside the body.
  • The second type (for example, a Port-a-Cath catheter) is placed under the skin and needs to have a needle placed into it each time it is used. This type of catheter may be more appealing to adolescents or for families who cannot take care of a catheter that needs special daily care.

In addition to chemotherapy, pain medicine and blood transfusions can be given through the catheter, and blood can be drawn from the body through the catheter.

Side Effects of Chemotherapy

Side effects can occur when the anticancer drugs affect not only the cancer cells but healthy cells as well. Different drugs produce different side effects. Ask your doctor or nurse what side effects your child is most likely to have and when they are likely to occur. Side effects are either acute (they happen right away) or delayed (they happen days, weeks, or years after chemotherapy). The most common side effects of chemotherapy are listed in the following chart.

You may also find these NCI materials useful:

You can receive copies from the NCI-supported Cancer Information Service (CIS) by calling 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615. Also, many NCI publications may be viewed or ordered online.

Side Effects of Chemotherapy:

DIGESTIVE TRACT PROBLEMS

Side EffectWhat You Can Do
Nausea and Vomiting
  • Ask your child's doctor about medicines to control nausea and vomiting and/or sedatives to help your child sleep through nausea.
  • Ask your doctor if it is alright to give your child milk or antacids before taking oral anticancer drugs. Certain oral anticancer drugs should not be taken with milk.
  • Feed your child light foods 3-4 hours before treatment.
  • Encourage your child to eat small amounts of food often and slowly.
  • Avoid serving sweet, greasy, and spicy foods or foods that have strong odors.
  • Serve your child cold meals, such as sandwiches, instead of hot foods.
  • Encourage your child to take liquids first, and then wait 30-60 minutes before eating solids. Most children tolerate liquids better than solids.
  • Have your child rest after meals.
  • If your child is vomiting, do not give anything to eat or drink until it is under control. Once the vomiting is under control, give small amounts of clear liquids (for example, water, broth, milk-free ices, and gelatin desserts). Begin with 1 teaspoon every 10 minutes; gradually increase the amount to 1 tablespoon every 20 minutes; and, finally, try 2 tablespoonfuls every 30 minutes. When your child can keep down clear liquids, try denser liquids (for example, strained cereal, pudding, yogurt, milkshakes, cream soups). Give small amounts as often as your child can keep them down. Gradually work up to solid foods.
Diarrhea
  • Contact your doctor if your child's diarrhea is severe; that is, more than three loose stools per day.
  • Avoid giving your child fatty foods.
  • Try serving foods that are high in proteins and calories but low in fiber, such as plain or vanilla yogurt, rice with broth, or noodles.
  • Serve your child foods and liquids that are high in sodium and potassium. Foods high in potassium that do not cause diarrhea are bananas, peach and apricot juices, and boiled or mashed potatoes.
Constipation
  • Call your doctor if your child goes more than 2 days without having a bowel movement.
  • Encourage your child to drink more fluids, such as apple juice.
  • Make sure your child gets some exercise.
  • Serve your child high-fiber foods, such as wholegrain breads and cereals; brown rice; dried fruits, such as raisins and prunes; and raw fresh vegetables.
Heartburn or stomach ache
  • Ask your child's doctor about giving your child an antacid.
  • Avoid serving your child foods that are fried, greasy or very spicy.

MOUTH PROBLEMS

Side EffectWhat You Can Do
Sore mouth or throat, mouth sores
  • Ask your child's doctor for medicine (sprays, special mouthwashes, and lozenges) for your child's mouth.
  • Give your child a sponge toothbrush or cotton swab to brush his or her teeth.
  • Have your child rinse his or her mouth every 2-3 hours and after meals, using baking soda solution or water.
  • Avoid serving very cold, hot, spicy, or acidic foods.
  • Try serving soft foods.
  • Contact your child's doctor if your child has mouth sores, painful areas, or patches of red or white in the mouth.
Change in taste - foods have less taste or a bitter metallic tasteTry well-seasoned foods or tart foods such as oranges, lemonade, or lemon tart. (Do not try these foods if your child has a sore mouth, throat, or gums.) Pizza and taco chips frequently become children's favorite foods.

SKIN AND HAIR PROBLEMS

Side EffectWhat You Can Do
Hair loss
  • Use a mild shampoo.
  • Cut your child's hair short.
  • Avoid using hair dryers and electric curlers.
  • Use a wide-tooth comb.
  • If you are planning to have your child wear a wig, select it before all your child's hair comes out.
  • If you want to cover your child's head, try a variety of hats and scarves.
  • Protect your child's scalp from sun and cold.
Redness of skinCall your doctor if redness, pain, or swelling occurs.
Dry, itching skinUse mild soap and moisturizers. (If the child is receiving radiation therapy, check with your child's doctor before using moisturizer.)
Moist skinWash your child's skin 2-3 times each day. Pat dry with a clean towel and lightly powder with cornstarch.
RashesCall your child's doctor, who may order medication.
Sun sensitivity
  • Avoid sun exposure.
  • Use an SPF 30 or higher sun-blocking lotion.
Swelling, redness, or pain at the needle site where chemotherapy drugs are givenCertain drugs given intravenously can cause burns and sores on your child's skin if they leak out of the vein. Tell your doctor or nurse right away if leaking occurs.

KIDNEY AND BLADDER PROBLEMS

Side EffectWhat You Can Do
Bladder irritation and infection
  • Give your child plenty of fluids, especially on the day of treatment and on days before and after treatment. The amount of fluids depends on your child's size, so discuss this with your child's doctor.
  • Avoid giving drinks with caffeine.
  • Report to the doctor if your child has pain or burning when urinating, frequent urination, a feeling of having to urinate right away, reddish or bloody urine, or if he or she is not able to urinate.
Change in urine color and strong urine odorSome drugs cause the urine to turn orange, red, or bright yellow and to have a strong odor. Ask the doctor if a change in urine color is likely.

NERVE PROBLEMS

Side EffectWhat You Can Do
Damage to nervesCertain chemotherapy can damage nerves, causing difficulties with walking and talking or jaw pain. Call the doctor if any of these problems occurs.

BONE PROBLEMS

Side EffectWhat You Can Do
Stress fracturesSome chemotherapy can weaken bones and cause stress fractures. Notify the doctor if your child develops pain in the arms or legs or if your child develops a limp.

SYSTEMIC PROBLEMS (involving the entire body)

Side EffectWhat You Can Do
FeverCall the doctor if your child's temperature goes over 100.4°F or 38°C. Do not give your child any over-the-counter medications to reduce the fever unless told to do so by the doctor.
Flu-like symptomsCall the doctor. Symptoms may occur a few hours to a few days after chemotherapy. They include muscle aches, headache, tiredness, slight fever, chills, and poor appetite. These symptoms also may be from either an infection or the cancer.
InfectionMany anticancer drugs lower the number of white blood cells, making it harder for the body to fight infection. Here is what you can do:
  • When possible, avoid taking your child into crowds. Also, avoid being around people with colds, flu, or any other contagious diseases, or anyone who has had a recent immunization with a vaccine containing live viruses (regular measles; German measles, or rubella; mumps; polio; and chickenpox).
  • Call the doctor if your child is exposed to known infectious illnesses (for example, measles or chickenpox).
  • If the white blood count falls too low, the doctor may postpone the next treatment or give a lower dose of drugs for a while.
Anemia/fatigueChemotherapy can lower the bone marrow's ability to make red blood cells, causing anemia. Here is what you can do:
  • Look for weakness, tiredness, dizziness, chills, or shortness of breath.
  • Call the doctor if your child develops any of these symptoms.
Blood clotting problems (bleeding)Chemotherapy can affect the body's ability to make platelets, the blood cells that help the blood to clot. Without enough platelets, your child may bleed or bruise more easily than usual; a blood transfusion may be needed. Here is what you can do:
  • Look for bruises, small red or purple spots under the skin, bleeding from the gums or nose, reddish or pinkish urine, or black or bloody bowel movements.
  • Call the doctor if your child develops any of these symptoms.
Swelling/fluid retention
  • Call the doctor if you notice swelling or puffiness in your child's face, hands, feet, or abdomen.
  • Your child's doctor may recommend limiting table salt and salty foods and/or order medicine to get rid of the extra fluid.
Allergic reaction
  • Look for fever, fainting, rash, difficulty breathing.
  • Call the doctor immediately. This side effect can be serious, but it is not common.

Long-term Side Effects of Chemotherapy

Ask your child's doctor and treatment team about health problems that may occur later as a result of the chemotherapy. A few chemotherapy drugs can cause lasting damage to the body's organs. For example, heart problems sometimes show up years after treatment, and children who have been treated with these drugs may need regular checkups by a cardiologist. Your child's later ability to have children may also be affected by chemotherapy. Finally, depending on the specific chemotherapy your child received, your child may be at risk of developing a second cancer.

Radiation Therapy

Radiation therapy is treatment with high-energy rays to damage or destroy cancer cells. Like surgery, radiation therapy is a local therapy. The rays are aimed at the part of the body that has cancer, and the treatment destroys cancer cells in the treated area. Doctors may use radiation therapy before surgery to shrink a tumor. After surgery, radiation therapy may be used to stop the growth of cancer cells that remain.

How Does Radiation Therapy Work?

All human body cells, including cancer cells, contain a substance called DNA. DNA tells the cells how to form and grow. In radiation therapy, the radiation harms the DNA inside the cancer cells, causing them to die before more cells are made. Tumors will shrink as the cancer cells die.

Getting Ready for Radiation Therapy

Before treatment begins, a doctor who specializes in radiation therapy will talk with you and your child about treatment. The doctor also will mark the exact area on your child where the radiation will be given. Marking ensures that the treatment is given in the same place each time. These marks, or small tattoos, are not painful to receive - the skin is only pricked - and they need to stay in place all during treatment. Although the skin may become tender during radiation, it is important to avoid using any soaps or lotions near the markings or the part of the body receiving the radiation without the approval of the radiation team. Lotions are often okay if removed hours before treatment.

Because you would be exposed to radiation, you will not be allowed to stay in the room with your child during the treatment. Your child will not be radioactive during or after radiation therapy, so no one need fear being close to your child.

What Will Happen During Radiation Therapy?

Radiation therapy does not cause pain. It is much like having a regular x-ray taken, except that your child needs to hold still longer. Because some young children are often unable to be still, the doctor may give a young child medicine to help him or her relax or to put him or her to sleep. The parts of your child's body that are not being treated will be covered by special shields made of lead to protect those body parts from the radiation.

Lessening Your Child's Fears

Some children may find the machines scary. Most radiation departments will give you and your child a tour of the area before the first treatment, so both of you can see what the machines look like. Younger children may be afraid of being left alone in the room. You can tell your child that you will be right outside. In some hospitals, you may be able to see your child receive treatment through closed-circuit television or viewing windows; your child may feel better just knowing that you are watching.

Side Effects of Radiation Therapy

The high doses of radiation that kill cancer cells can also hurt normal cells. When this happens, side effects occur. With radiation therapy, the side effects depend on the treatment dose and the part of the body being treated.

The following chart gives information on the most common side effects of radiation therapy.

Side Effects of Radiation Therapy:

ALL RADIATION SITES

Side EffectWhat May Help
Tiredness/fatigueMake sure your child gets extra sleep and rest.
Redness. blistering of skin
  • Leave the irritated skin open to the air.
  • Clean your child's skin as directed.
  • Use ointments only if the doctors approve.
  • Keep your child out of the sun as much as possible.
  • Use at least an SPF 30 sun-blocking lotion.
Hair loss (occurs only in the area being treated)
  • Your child's hair should grow back within weeks to 3 months after treatment ends, but some areas receiving higher doses may not grow back.
  • Use a mild shampoo.
  • Cut your child's hair short.
  • Avoid hair dryers and electric curlers.
  • Protect your child's scalp from cold and sun.
  • Use a wide-tooth comb.
  • If you plan to have your child wear a wig, select it before all your child's hair comes out.
  • If you want to cover your child's head, try different hats and scarves.
  • Ask your child's doctor for medicine

HEAD AND NECK RADIATION SITES

Side EffectWhat You Can Do
Sore mouth(sprays, mouthwashes, and lozenges) for your child's mouth.
  • Give your child a sponge toothbrush or cotton swab to brush his or her teeth.
  • Have your child rinse his or her mouth every 2-3 hours and after meals using baking soda solution or water.
  • Avoid mouthwashes that have a high alcohol content, which may irritate mouth sores.
  • Avoid serving very cold, hot, spicy, or acidic foods.
  • Try serving soft foods.
  • Contact the doctor if your child has mouth sores, painful areas, or patches of red or white in the mouth.
Dry mouth
  • Drink plenty of water.
  • Suck on sugar-free hard candy or ice pops, or chew sugar-free gum.
  • Rinse with a mouthwash recommended by the doctor.
  • Serve foods with sauces, gravies, and salad dressings to make them moist and easier to swallow.
  • Drink liquids with meals.

STOMACH AND ABDOMEN RADIATION SITES

Side EffectWhat You Can Do
Nausea and vomiting
  • Ask your child's doctor about medicines to control nausea and vomiting and/or sedatives to help your child sleep through the nausea.
  • Feed your child light foods 3-4 hours before treatment.
  • Encourage your child to eat small amounts of food often and slowly.
  • Avoid serving sweet, greasy, and spicy foods and foods with strong odors.
  • Serve your child cold meals, such as sandwiches, instead of hot foods.
  • Encourage your child to take liquids first, and then wait 30-60 minutes before eating solids. Most children tolerate liquids better than solids.
  • Have your child rest after meals.
  • If your child is vomiting, do not give anything to eat or drink until it is under control. Once the vomiting is under control, give small amounts of clear liquids (for example, water, broth, milk-free ices, and gelatin desserts). Begin with 1 teaspoon every 10 minutes; gradually increase the amount to 1 tablespoon every 20 minutes; and finally, try 2 tablespoonfuls every 30 minutes. When your child can keep down clear liquids, try denser liquids (for example, strained cereal, pudding, yogurt, milkshakes, cream soups). Give small amounts as often as your child can keep them down. Gradually work up to solid foods.
Diarrhea
  • Contact your doctor if your child's diarrhea is severe, that is, more than three loose stools per day.
  • Avoid giving your child apple juice.
  • Avoid giving your child fatty foods.
  • Try foods high in proteins and calories but low in fiber, such as plain or vanilla yogurt, rice with broth, or noodles.
  • Serve your child foods and liquids high in sodium and potassium. Foods high in potassium that do not cause diarrhea are bananas, peach and apricot juices, and boiled or mashed potatoes.
  • Make sure your child drinks plenty of liquids.

Long-Term Side Effects of Radiation Therapy

Radiation therapy also may affect your child in the future. For example, radiation to the brain may cause learning and coordination problems, especially in very young children. Thus, it may be helpful to consider neuropsychological testing following treatment. Radiation therapy may also affect your child's growth or may cause a second cancer to form in the treated area years after treatment. Therefore, the doctor may delay radiation therapy or, if possible, choose another treatment, such as chemotherapy. Your child's treatment team has no way to know exactly what, if any, long-term effects your child may have, but they can help you know what the possible effects might be.

Immunotherapy

The immune system - the body's system for defending itself - knows when substances that should not be there, such as bacteria and viruses, are in the body and then attacks them. The system also knows when cells have changed, such as when cells become cancerous, and then attacks them. Immunotherapy, also known as biological therapy, was developed to take advantage of the body's own ability to fight disease.

In immunotherapy, substances called biological response modifiers (BRMs) are given to cancer patients. BRMs are substances that are normally made by the body to fight cancer and other diseases. Scientists can make large amounts of BRMs to use in cancer treatment. These BRMs destroy cancer cells and change the way the body reacts to a tumor. They may also help the body replace noncancerous cells destroyed by chemotherapy.

Several types of BRMs are used to treat cancer. Four are discussed here: cytokines, interleukins, colony-stimulating factors, and monoclonal antibodies.

  • Cytokines are proteins formed in small amounts by all human cells to help control the working of cells. Interferon, one type of cytokine, helps the immune system slow the rate of growth and division of cancer cells, causing them to become sluggish and die. In children who have cancer, these agents have been tested against leukemia, osteosarcoma, brain tumors, and neuroblastoma.
  • Interleukins, another type of cytokine, are made by lymphocytes. Interleukin-2, one of the most studied interleukins, causes certain kinds of white blood cells to grow and destroy tumors.
  • Colony-stimulating factors are proteins that cause bone marrow cells to develop platelets, red blood cells, and white blood cells.
  • Monoclonal antibodies recognize specific antigens, substances that the body senses do not belong or regards as "outsiders," on the surface of cancer cells. These antibodies can be directed against a certain cell type. They can be used to attack and damage or destroy cancer cells. They may also be used to deliver anticancer drugs or radiation directly to specific cancer cells. This technique is still being developed and is used only in clinical trials.

Side Effects of Immunotherapy

Depending on the exact type of treatment, immunotherapy often causes flu-like symptoms such as chills, fever, muscle aches, weakness, loss of appetite, nausea, vomiting, diarrhea, and, at times, a rash. Sometimes the patient will bleed or bruise easily. Depending on how serious these problems are, hospitalization may be needed during treatment. These side effects usually go away after treatment ends. Ask your child's doctor about coping with the side effects.

Bone Marrow and Peripheral Blood Stem Cell Transplants

Some children who have leukemia or other types of cancer may need a bone marrow transplant (BMT) or a peripheral blood stem cell transplant (PBSCT). In these treatments, the blood cells in the diseased or damaged bone marrow - the spongy material that fills the inside of bones and makes blood cells - are replaced with healthy cells (stem cells), which will grow new healthy cells.

Stem cells are immature cells that produce the three types of blood cells:

  • white blood cells, which fight infection
  • red blood cells, which carry oxygen to and remove waste products from organs and tissues
  • platelets, which enable the blood to clot.
Most stem cells are found in the bone marrow, but some - called peripheral blood stem cells (PBSCs) - are collected from the bloodstream. Umbilical cord blood also contains stem cells. If your doctor proposes a stem cell transplant for your child, the stem cells may come from a donor's bone marrow, bloodstream, or umbilical cord blood or from your child's own bone marrow or bloodstream.

Healthy stem cells grow in two ways:

  • They divide to form more stem cells.
  • They mature into white cells, red cells, and platelets.
When transplanted into a cancer patient, stem cells can rescue the damaged blood-forming system.

Two circumstances create the need for a transplant. The first is when the cancer itself has injured the bone marrow. BMT and PBSCT are commonly used in the treatment of leukemia and lymphoma. The second circumstance is when a treatment requires such large doses of chemotherapy or radiation therapy that the child's bone marrow is damaged during treatment. Chemotherapy and radiation therapy target all cells that divide rapidly. Cancer cells divide more rapidly than most healthy cells and so are destroyed by the therapies. Bone marrow cells, however, also divide more rapidly than other healthy cells, so high-dosage treatment can have a damaging effect on them as well.

A BMT or PBSCT can be done in three ways: as an autologous transplant, an allogeneic transplant, or a syngeneic transplant.

  • Autologous transplant - The child's own stem cells or PBSCs cells are used. They can be obtained from the bone marrow or from blood, using the apheresis procedure. Stem cells are collected while the child is in remission. To make sure that any cancer cells that remain are destroyed, the marrow may be treated with anticancer drugs. After the marrow or PBSCs are collected, the child receives high-dose chemotherapy, usually over 2 to 6 days, and, frequently, total body irradiation, during which the whole body is radiated, in one dose or in many doses over several days, to get rid of the cancer. The collected marrow or PBSCs are then returned to the child through a vein, as in a blood transfusion.
  • Allogeneic transplant - The marrow or PBSCs from a sibling, parent, or someone not related to the child are used for the transplant. The transplant material must be as closely matched to the patient's blood cells as possible. Cord blood transplant is allogeneic.
  • Syngeneic transplant - The perfectly matched marrow or PBSCs from an identical twin are used for the transplant.

Before the transplant, a catheter is usually inserted into a large vein in the chest for transplanting the marrow or PBSCs, as well as for giving blood, antibiotics, and other drugs and for drawing blood. The child is given high doses of anticancer drugs and/or radiation. When the cancer cells - along with some healthy bone marrow cells - are destroyed, the new, healthy marrow or PBSCs can be given. The healthy marrow or PBSCs are given through the catheter and travel through the bloodstream to the bone marrow where they start to make red and white blood cells and platelets.

It usually takes 14 to 30 days after the transplant for the transplanted stem cells to make enough white blood cells to fight infection and to make other blood cells. During this time, your child will be at higher risk for infections, anemia, and bleeding. Complete recovery of your child's immune system can take 1 to 2 years after an autologous, allogeneic, or syngeneic transplant. Your child may need to remain in a hospital room that is kept as free as possible from anything that may cause an infection. Supportive care, which includes receiving blood transfusions and antibiotics, will be given.

Supportive Care

Children having a BMT or PBSCT usually stay in the hospital for 1 to 2 months (sometimes longer), although outpatient BMT can be done for children who have brain tumors. Children receiving BMT or PBSCT may need supportive care.

For more information on side effects from chemotherapy and radiation therapy, see the charts in those sections.

Graft-Versus-Host Disease

Graft-versus-host disease (GVHD) may occur in patients who receive bone marrow or peripheral stem cells from a donor. In GVHD, donated stem cells realize they are in a different body, so they may attack the patient's tissues, such as the liver, skin, or digestive tract. GVHD can be mild or very severe and can occur any time after the transplant - even years later. The doctor may give drugs to reduce the risk of GVHD and to treat the problem if it occurs.

Supportive Care for BMT and PBSCT

ProblemSupportive Care Provided
Low counts of all types of blood cells
  • Isolation from people with infectious diseases
  • Transfusion with blood products, including platelets and red blood cells
  • Treatment with proteins that increase the number of white blood cells
Infections
  • Intravenous antibiotics
  • Isolation from other people
Gastrointestinal Infections
  • Low-bacteria diet
  • Mouth care
  • Liquid antibiotics
Difficulty eating enough foodIntravenous nutrition-giving nutrients through a vein

Complementary and Alternative Medicine

Complementary and alternative medicine (CAM) includes a broad range of healing philosophies, approaches, and therapies. A therapy is generally called complementary when it is used in addition to conventional treatments; it is often called alternative when it is used instead of conventional treatment. (Conventional treatments are those that are widely accepted and practiced by the mainstream medical community.)

It is important that the same scientific evaluation used to assess conventional treatments be used to evaluate complementary and alternative therapies. Conventional cancer treatments have generally been studied for safety and effectiveness through clinical trials, which are research studies with people. Some complementary and alternative therapies have not been studied in clinical trials.

Questions to Ask Your Child's Health Care Provider About Complementary and Alternative Therapies

  • What benefits can be expected from this therapy?
  • What are the risks associated with this therapy?
  • Do the known benefits outweigh the risks?
  • What side effects can be expected?
  • Will the therapy interfere with conventional treatment?
  • Is this therapy part of a clinical trial? If so, who is sponsoring the trial?
  • Will the therapy be covered by health insurance?

Others, which once were not accepted by the mainstream medical community, are gaining acceptance in cancer therapy - not as cures, but as complementary therapies that may help patients feel better and recover faster. One example is acupuncture. Other therapies, such as laetrile, have been studied and found to be ineffective and potentially harmful.

If you have questions about complementary or alternative therapies, discuss them with your child's doctor or treatment team.

Hospitalization

Being in the hospital is often scary for any child, especially at first. It is a whole new world to learn about - new people and strange machines, procedures, and routines. Adding a touch of home by having pictures of family members and friends, drawings, and other personal things in your child's room can help make the hospital a less scary place. These homey touches can help start a conversation between the hospital staff and your child.

One of the scariest things for many children is being separated from their parents and siblings. Many hospitals and treatment centers help your family and your child spend as much time together as possible by allowing you to visit anytime and having beds for parents in the child's room or bedrooms nearby. If the hospital does not have beds for you, you might ask to sleep in a chair near your child's bed.

Most hospitals have playrooms for children who are patients. Playrooms often have toys, games, arts and crafts supplies, and tape players, giving children a chance to play and talk with each other in much the same way that they do with their friends at home or in school. The playroom setting allows children to relax and become more comfortable in the hospital. Playroom staff, trained in working with children who have serious illnesses, can talk to parents and other members of the treatment team about the fears or concerns a child may share through play.

If your child cannot get out of bed to go to the playroom, child-life workers - trained staff who help coordinate play, schoolwork, and other activities for the child - may make bedside visits.

For older children who are trying to separate themselves from you and be more on their own, being in the hospital may thwart their drive for independence. At a time when young people are normally doing more on their own, cancer makes them rely on you more. As a result, adolescents may make it known, loudly and often, that they are unhappy. They may refuse treatment, break hospital rules, miss outpatient appointments, and rebel in other ways.

Children of any age will often cooperate more if given treatment choices that do not cause problems with their care. Parents can help children become more independent by allowing them to share the responsibility for their care. Some hospitals also make a special effort to help children cope with illness and being in the hospital, such as allowing teenagers to dress in street clothes whenever possible and to have friends visit. Some hospitals have equipment that allows the child to interact with his or her classmates in their classroom.