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Treatments | Chemotherapy

What is the purpose?

Chemotherapy has the main purpose of destroying cancer cells. Healthy cells divide and grow in a controlled behavior and pattern. Cancer cells are different in that they grow uncontrollably and in a non-behaved pattern. Cancer cells come in contact with healthy cells, destroy or take over, and then copy themselves many times over.

Chemotherapy is the use of chemicals or other medications to interfere with the cancer cell's ability to grow and multiply. The physician and treatment team will first have to diagnose the type of cancer. Then, a treatment program will be developed that identifies specific chemotherapy drugs and the recommended dosage.

The positive side of chemotherapy is that it can interfere with the cancer cell's ability to grow and multiply. The negative side is it adversely affects healthy cells in the child. The healthy cells most affected by chemotherapy are those which rapidly divide and grow, such as bone marrow, gastrointestinal tract, hair follicles, etc. This is what causes side effects such as risk to infection, anemia, risk of bleeding, diarrhea, constipation, and loss of hair. Chemotherapy will continue to be a major part of the physicians' and hospitals' recommended treatment programs until breakthroughs in cancer research, such as gene therapy and "smart bombs," provide a cure for childhood leukemia.

How is chemotherapy given to children?

Chemotherapy consists of drugs or other medications given to interfere with the growth of cancer cells. The three most common methods for administering chemotherapy are orally, intramuscular/intrathecal, and intravenous. We found the method recommended by the physician and treatment team will depend upon the age of the child, the type of leukemia, and the specific type of chemotherapy drugs.

• Oral Chemotherapy - The oral method is the easiest and least painful method of the four. The medicine comes in the form of a pill, capsule or liquid. The benefit is the ease of the child taking the medicine, unless the child is of an age where swallowing a pill is a problem. We found that it was better to use liquid chemotherapy when it was available versus crushing up a pill and mixing it in a liquid or other food for Jennifer to eat. She generally had mouth sores and loss of appetite, plus the taste of the crushed up pill was not completely masked by the liquid or foods.
• Intramuscular/Intrathecal - Chemotherapy administered by this method takes the form of an injection into the muscle or spinal column of the child. Intramuscular injections typically are given in the buttocks, arm or thigh. Intrathecal injections are given into the spinal tap to destroy any cancer cells that may penetrate the spinal column. The injection is painful and the chemotherapy drug can cause a burning sensation as it is injected. The parents should inquire about the number of intramuscular/intrathecal injections based upon the protocol plan for that child.
• Intravenous - The intravenous or IV method is where the chemotherapy is injected directly into the child's vein. Children diagnosed with leukemia typically receive a number of IV injections. The IV injection by needle is also painful. Once in the veins, the drugs can cause the burning sensation previously mentioned. Moreover, if the drug leaks from the vein, it can severely burn the skin. IV insertions can eventually damage the child's veins. The physician may therefore recommend the child have minor surgery to insert a catheter or implanted port. This allows the child to receive chemotherapy at home and avoid injection shots of chemotherapy.
• Catheter - The common types of catheters used are the Hickman, Broviac, or Groshung which are produced by different manufacturers. A rubber tube is surgically inserted into the child's central veins while they are under general or local anesthesia. The tube is then tunneled through the surface skin, usually between the neck and the shoulder. The child receives a stitch to close the surface incision. The child will have a clear bandage over the catheter to protect it from infection.

  The parents should ask the nurses for training on how to change the catheter dressing (generally 3 times a week) to prevent infection. The parents or child will use daily heparin flushes to prevent blood from clotting in the external tube. We found practicing on a mannequin or working with the nurses in the hospital was important in reducing the fear of Jennifer when her catheter was cleaned or the dressing was changed. Great care must be taken by the parents to prevent infection of the central line of the catheter.

  The child will also receive blood products and platelets through this catheter.
   

• Implanted Port - An implanted port is sometimes used in young children that will tend to pull on the lumens of the catheter. The port is round in shape and is surgically inserted under the skin surface of the chest wall between the neck and shoulder area. The chemotherapy is then injected through a needle through the top skin surface to gain access to the vein.

  The implanted port also has the additional benefit that the child can receive blood tests and blood products without being pricked.

What questions should I ask the treatment team and the hospital?

We found that chemotherapy is generally recommended to the parents by the physicians and hospitals. The parents should also ask what other treatments, such as nutritional and alternative/homeopathy treatments would be recommended by the supervising physician. A number of the nutritional and alternative/homeopathy treatments are not effective once a child has undergone a chemotherapy protocol. We encourage every parent at this juncture to have a full and candid discussion with their physician so they will not regret down the road in not asking this question.

The following list is compiled from the experience of the Stroud family and other parents that have made the decision to use chemotherapy. Questions that should be asked include:

• What is the track record of the supervising physician and hospital in chemotherapy treatments for this child's type of leukemia and age group?
• Will the treatment team/hospital provide names and addresses of prior patients/parents as referrals?
• Is the treatment team/hospital part of a pediatric oncology group? If so, what is the proposed protocol for the chemotherapy treatment? Request a treatment plan map or calendar.
• Does the hospital have a specialized oncology physician and treatment team? What is their current case load?
• Ask to visit the hospital and visit the room and physical facilities available to the chemotherapy patient and his or her family.
• Inquire about hotel/housing accommodations available for out of town families, since chemotherapy is often injected in five to seven day intervals.
• Ask about the hospital visitation policy for families and friends. May the parents spend the night with their child when the side effects of chemotherapy are severe?
• What are the hospital's procedures for dealing with chemotherapy side effects? What are the most common side effects for your child's type of chemotherapy protocol and age group?
• What religious support and services are available to the child and the family?

What are some helpful chemotherapy hints for a parent?

• Chemotherapy Protocol - Most hospitals are members of a pediatric oncology group "POG." These national oncology groups have developed specific protocols based upon a child's type of leukemia. The parents should discuss with the physician the chemotherapy protocol and any variations due to the POG affiliation.
• Administration Methods - Depending upon the type of leukemia, the administration method can be either oral, intramuscular/intrathecal, or intravenous. The parents will have to work with their child to take liquids and pills. Treats and special foods to encourage the child are important after weeks or months of swallowing pills. The parents should inquire whether or not a catheter or implanted port is best suited for their child's age and the length of time for the chemotherapy treatment. We received a broviac catheter the first week of Jennifer's hospitalization. She was diagnosed with acute myeloid leukemia and the chemotherapy protocol called for 3-five day injections of chemotherapy drugs. Some on a 24 hour continuous basis.
• Side Effects - Chemotherapy drugs affect not only the cancer cells but also the healthy cells. Typically, the healthy cells most affected are rapid growing cells such as hair follicles, reproductive system, bone marrow and the gastrointestinal tract. The damage to the healthy cells causes the side effects of chemotherapy. We found it important to anticipate side effects and learn ways to minimize their adverse affect on Jennifer.

  The parent should ask the nurses, other parents, and the medical team as to what side effects should be anticipated. In addition, the chemotherapy drug summary sheets often will list the most common side effects. The reading is a little scary, but it will help parents anticipate side effects.
   

• Examples of Side Effects - Side effects are often classified as common or uncommon, and immediate or delayed (days to weeks after chemotherapy). The common immediate side effects are nausea, vomiting, pain and burning at the chemotherapy injection site. The less common immediate side effects are allergenic reactions (such as a rash or hives) and swelling of the eyelids, hands and feet. Common delayed side effects include hair loss, mouth soreness, ulcers, constipation, low blood count thereby increasing the risk of anemia, and infection. Uncommon delayed side effects can include jaundice (which is the yellow coloring of the skin and eyes due to liver problems), bladder irritation, and nervous system changes such as tiredness and lack of coordination.
• Blood Products - Children often need blood and platelet transfusions since the chemotherapy also damages red blood cells. Parents should ask if family members or healthy friends have the same blood type as their child. A select group of healthy donors can provide consistent blood products. This helped Jennifer because platelets lasted longer and her energy level was higher.
• Controlling Side Effects - Once the parent and child are made aware of potential side effects, then the next step is to minimize or eliminate them. A number of the side effects Jennifer experienced could be offset by other drugs, changes in her diet, and changes in her daily routine. Nutritional therapy was also effective to reduce side effects and increase the quality of her life. The Reference section lists past proven methods to help parents.
• Long Term Effects - The parents need to weigh the long-term permanent effects of chemotherapy. Depending upon the type of leukemia and the chemotherapy protocol, the cancer cells may be controlled or eliminated, but the damage to the healthy cells can cause long-term effects. Manufacturers of the chemotherapy drugs will caution that certain chemotherapy drugs can have the following long-term effects:

  Physical strength and stamina may be reduced, some children may have reduced pulmonary function due to lung damage, thyroid dysfunction and stunting of growth sometimes occur. Problems with sexuality and sterility can also occur when the child reaches adolescence and young adulthood. See the Reference section for information that can help parents.
   

• Learn About Individual Chemotherapy Drugs - The parents may find themselves on the experimental side of chemotherapy drugs. Since leukemia is an aggressive disease, new drugs are developed on a weekly or monthly basis. The parent should request from the physician, or have the physician request from the drug company, a drug summary sheet for each chemotherapy drug. The drug summary sheet will list special precautions to reduce side effects, identify side effects, describe the medical and brand name of the chemotherapy drug, and describe the general administration method.

  We used some experimental drugs where a drug summary sheet was not available. The best advice is to request the names and telephone numbers of parents of children who received similar drugs or physicians who administered these types of drugs. The National Cancer Institute (1-800-4-CANCER) can be helpful in identifying current information on specific drugs. I also used the World Wide Web to specifically research the medical and brand name of the chemotherapy drug. Chemotherapy is not an exact medical science. The parents can best serve their children by being educated and aware of the type drugs recommended for their child. Information that can help parents is available in the Reference section.
   

• Financial Considerations - Review your insurance policy, if applicable, with the financial administrators at the hospital. Ask for specific categories of expenses that are covered, what out-of-pocket deductibles the family will have to pay, and any financial aid for items that are not covered. Policies often will provide more coverage for "centers of excellence." Be sure to review this with your insurance company before consenting to a chemotherapy protocol and selecting a hospital.