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Handbook for Parents

Table of Contents
When to contact the treatment team

General Information
Diagnosis
Paediatric Oncol. Grp.
Haematology Staff
What Is Cancer?
What Is a Protocol?
How Does Being ...
Tests
Treatment
Taking Care of Your Child at Home
Infection
Side Effects of Cancer
Glossary

Other Links
Mtl. Children's Hosp
Sick Kids - Toronto
Oncolink

Side Effects of Cancer Treatment

1. GENERAL

Most chemotherapy drugs and radiation kill cancer cells by preventing them from reproducing. Normal body cells and cancer cells reproduce by dividing: that is, one cell becomes two cells, two cells become four cells, and so on. In normal cells, this is how a cut or scrape heals, or how hair grows. Cancer cells accumulate in the body because more are produced through cellular reproduction than die. This is unlike the situation in normal tissues, where the number of cells produced is in exact balance with those that die (except in the normal, growing tissues of a child). Normal cells are able to repair themselves much more effectively than cancer cells, so that only those normal cells that reproduce the most rapidly are killed. It is when these normal cells are killed that we see many of the side effects of chemotherapy.

Chemotherapy is a chemical way of treating cancer. Special chemotherapeutic drugs are given orally, or intravenously, or by injection into a muscle or under the skin. These medications, once in the blood stream, act upon cells that divide rapidly. The drugs affect cancer cells as well as other cells that divide rapidly. The normal cells which are most often affected by chemotherapy include: the gastrointestinal tract, hair, bone marrow (where blood cells are formed), and the reproductive system. Because of this, certain side effects may occur. These side effects are almost always temporary. It is very important that your child's physician or nurse be notified by phone of any of the side effects described in this section, or if you have questions with regard to these side effects.

The treatment team's goal is to cure your child's cancer. At the same time, they want your child and family to live as normal a life as possible. You, as a parent, and they, as health care professionals, are important members of your child's treatment team. The team can work together to manage the side effects of treatment, provide both emotional and physical support when needed, and encourage independence and a return to normal life as soon as possible.

2. MOUTH SORES

The cells that line the inside of the mouth are one type of cell that must reproduce rapidly in order to repair damage done by the teeth, sharp or rough foods, and other normal wear and tear. When chemotherapy temporarily prevents this repair, the mouth lining can break down and result in mouth sores. This may also occur with radiation therapy to the mouth and surrounding area. Please inform the team if your child develops red or white areas or open sores inside the mouth. If this happens, here are a few suggestions which may help to make him or her more comfortable:

  1. Proper mouth care is essential. Teeth should be brushed with a soft brush after each meal. Infants' and toddlers' teeth should be cleaned with a soft cloth wrapped around your finger.

    If mouth sores or bleeding prevent brushing, the mouth should be rinsed before and after each meal. Your doctor may prescribe a mouthwash or you can use a solution of 1/4 teaspoon each of salt and baking soda, mixed with a cup of water. Avoid commercial mouthwashes, which contain alcohol, because they will sting and burn the sore areas.
  2. If mouth sores become painful, the doctor may prescribe medicine to numb the sore areas. This medicine is most effective when used as a mouth rinse immediately before a meal, because the numbing effect wears off quickly. However, if your child gargles with this medicine to ease throat pain, he or she should wait at least thirty minutes before eating or drinking because it can numb the gag reflex at the back of the throat and cause choking.
  3. Feed your child soft, non-spicy foods, such as mashed potatoes and gravy, ice cream, jelly, custards, and scrambled eggs. Cut foods in small pieces or puree them in the blender if necessary.
  4. Avoid foods with sharp or rough edges, such as potato chips or tacos. Acidic foods such as tomatoes, orange juice, or pickles will irritate the tender areas. Avoid them also.
  5. Foods served chilled or at room temperature will feel better to a child with a sore mouth than will warm foods.
  6. A straw may be helpful for directing fluids away from sore areas of the mouth.
  7. If your child refuses to drink fluids or is unable to swallow saliva, he or she should be examined by the treatment team.

3. DIARRHOEA

Some chemothapy can cause diarrhoea. Radiation therapy that includes the area of the stomach or intestines can cause diarrhoea. If your child has problems with this, the treatment team will need to know about the colour, size, and number of diarrhoea stools per day. Here are some suggestions which may ease bowel irritation:

  1. Ask your child to lie down or sit quietly after meals:  this will decrease intestinal activity.
  2. Serve small amounts of food frequently, rather than serving fewer large meals.
  3. Avoid spicy hot foods, fried or fatty foods, and milk products when your child has diarrhoea.
  4. Avoid foods which are high in fibre, such as fresh fruit and vegetables, and cooked vegetables such as broccoli, corn, and cauliflower.
  5. Serve your child a soft, bland diet that is high in potassium. Foods which are high in potassium but which do not cause diarrhoea include bananas, potatoes, and apricot or peach nectar.
  6. It may be helpful to feed your child only clear liquids for the first 12 - 24 hours after diarrhoea has first started. After that, begin slowly to feed bland, low fibre solids.

Call the treatment team if your child becomes lethargic or excessively tired, has more than eight large diarrhoea stools in one day, goes more than eight hours without urinating, or if the diarrhoea does not improve after two days.

4. CONSTIPATION

Constipation can be caused by decreased fluid intake, by a diet too low in fibre, by lack of exercise, or by the chemotherapy drug Vincristine. Here are some suggestions which may help correct the problem:

  1. Give your child a warm drink, such as warm apple juice or cocoa, around the time that he or she usually has a bowel movement.
  2. Increase the amount of fibre in your child's diet by serving fresh fruit and vegetables, whole grain cereals and breads, dried fruit (apricots, raisins, prunes, etc.) and oatmeal cookies. In addition, you may add bran to casseroles, cookies, and bread before baking.
  3. Encourage your child to drink more fluids --- especially fruit juices.
  4. Encourage your child to get more exercise through play, if he or she is not already getting sufficient exercise.

If none of these measures helps, let us know. Sometimes a stool softener will be prescribed to prevent constipation. Do not give your child a laxative unless one is prescribed by the doctor.

5. NAUSEA AND VOMITING

Nausea and vomiting are caused by irritation of the stomach lining or by direct stimulation of the nausea and/or vomiting centres of the brain. These centres are separate from each other so your child may feel nauseated without vomiting, or may vomit without feeling nauseated. This is why your child may continue to eat even though he or she cannot keep anything down.

Typically, drug-induced nausea and vomiting begin within one to two hours after ingestion of a drug and may last anywhere from minutes to hours. Episodes of severe nausea and vomiting lasting longer than 12 hours should be reported to the treatment team. Some chemotherapy drugs do not cause nausea or vomiting; others are only mildly irritating, and some can cause intense reaction. Reactions are very individual, and your child may not react in the same way as another child receiving the same drug.

Sometimes older children and adolescents develop what is called anticipatory nausea and vomiting. This is where the child becomes nauseated and may even vomit at the thought of chemotherapy. The child may begin to get sick the night before chemotherapy, or whenever you come close to the hospital. Remember, your child cannot control this reaction, and needs your support and understanding. If your child develops this type of anticipatory nausea, discuss it with the treatment team, as they may be able to help you and your child with this problem.

There are a number of medications available to treat nausea and vomiting caused by chemotherapy. What works for one child may not work for another. The team will work with you to discover which drug or drugs are the most effective for your child.

Drowsiness is a side effect of many of the medications used for nausea and vomiting. Many older children and adolescents refuse the medication because they do not like the "drugged" feeling. In fact, they prefer to be awake and vomiting than to be asleep and "out of control". Being in control is an important issue at this age or stage of development, and it might be wise to respect your child's feelings in this area. The treatment team can work around this problem to reach a compromise that will minimise drowsiness and other side effects.

Most of your child's problems with nausea and vomiting will occur in the hospital or clinic, but if there continues to be a problem at home, here are some suggestions which may help to increase your child's comfort:

  1. Serve meals in a well-ventilated room which is as free as possible from cooking and other smells.
  2. Feed your child small, frequent meals.
  3. Avoid fried foods, spicy or very rich foods, and foods with strong odours.
  4. Try not to serve your child's favourite foods when he or she is nauseated, because your child may begin to associate this food with feeling sick.
  5. During periods when your child vomits frequently, rinse his or her mouth well after each episode, because stomach acid left in contact with the teeth and mucous membranes will cause tooth decay, and may irritate an already tender mouth.
  6. Feed only sips of cool, clear liquids until the child tolerates these well, then advance to liquid foods, then slowly to solids.
  7. If your child has received a chemotherapy treatment which is likely to cause prolonged vomiting, continue anti-nausea drugs for at least 12 hours after your child receives chemotherapy. If the drug wears off and your child starts vomiting, it will be much more difficult to control.

6. BONE MARROW SUPPRESSION (Low Blood Counts)

Cells of the bone marrow, because they reproduce themselves rapidly, are also adversely affected by many chemotherapy drugs and radiation. Bone marrow cells make blood cells which are released into the bloodstream when they are needed.

There are three important types of cells produced in the bone marrow:

  1. Red Blood Cells (RBC's)
  2. White Blood Cells (WBC's)
  3. Platelets

Each of these types of cells has different functions, and it is when your child's blood counts, or levels of the different blood cells, are low and unable to perform their specific functions that he/she may experience adverse effects.

Of all the complications of chemotherapy, bone marrow suppression is the one which will cause your child the most treatment delays and modifications, and the most unscheduled trips to the hospital. In most cases you will not begin to see effects of the chemotherapy on the bone marrow until about 5 - 7 days after the treatment drug was given. Your child will probably be at home when the counts reach their lowest point, so it will be necessary for you to know what to look for, what to do, and when to notify the treatment team.

A. RED BLOOD CELLS (RBC'S)

RBC's carry oxygen for energy to all the organs of the body. The number of RBC's in the blood stream is measured by the Haematocrit and Haemoglobin. When these are low, your child is said to be anaemic. You will notice that your child tires easily and looks pale when the haematocrit is low. If it drops below a certain level, your doctor may order a red blood cell transfusion. On most occasions, though, the RBC counts will recover on their own. There are several things that you can do to support your child when he/she is anaemic:

  1. Encourage frequent rest periods. While some children will do this for themselves, others play just as hard as usual and become over-tired and cranky. You know your child, and will recognise when your help is needed.
  2. Provide a diet high in iron because iron is needed for RBC production. Foods which are high in iron include dark green leafy vegetables, red meat and liver, prunes, raisins, and iron fortified breads and cereals.

When your child is recovering from the effects of chemotherapy, he/she may not feel like eating anything, especially those things that have good nutritional value, (see section on diet and nutrition). It is important not to make eating an issue of contention. Provide balanced meals but do not become too upset if your child refuses them: RBC counts will recover anyway.

B. WHITE BLOOD CELLS (WBC's)

White blood cells fight infections, and when the WBC count is low, your child will be more likely to get sick from viral or bacterial infections. There are different kinds of WBC's, and it is the neutrophils that are most important in fighting dangerous bacterial infections. Other names for neutrophils are granulocytes or polys. When your child's absolute neutrophil count (ANC) is low (neutropenia), and a bacterial infection is suspected, he/she may need to be treated with antibiotics. When the treatment team tells you that your child's counts are low enough that you need to take special precautions, here are some guidelines to follow:

  1. Avoid large crowds and people who are sick.  The treatment team may ask you to keep your child out of school while blood counts are low.
  2. Do not take rectal temperatures or use rectal suppositories. Anything pushed into the rectum might tear the lining of the intestine and let germs from the stool into your child's bloodstream.
  3. If your child cannot co-operate for an oral temperature check, then his/her temperature should be taken inside the armpit (axillary).
  4. If your child runs a fever (above 101.3oF or 38.5oC), he/she should be examined by the physician. Admission to the hospital for observation and/or antibiotic therapy may be necessary.
  5. If your child is "just not acting right", even if he/she is not running a fever, you should contact us to determine if it is necessary for the child to be examined.
  6. Good hand washing by all family members, while always important, is especially necessary when your child's WBC count is low.

C. PLATELETS

Platelets are needed for the blood to clot normally. When your child's platelet count is low (thrombocytopenia), he/she may be more prone to bleeding. Symptoms of a low platelet count are:

  1. Increased bruising (including small, red, pinpoint bruises called petechia).
  2. A nosebleed that is difficult to stop.
  3. Gums that bleed easily or bleeding from small cuts or scrapes that is hard to stop.

If you suspect that your child's platelets are low, a platelet count should be done. When the platelet count drops below a certain level, the doctor may order a platelet transfusion. When special precautions are necessary to protect your child from injury, here are some guidelines to follow:

  1. Avoid contact sports (football, soccer, ice hockey, etc.) or play (skateboarding, bicycling, etc.) that could result in physical injury.
  2. Use a soft-bristled tooth brush, a tooth sponge, or a clean soft cloth to gently clean the teeth; anything harder may cause irritation and bleeding. Do not schedule dental procedures (including teeth cleaning) when the platelet count is low.
  3. Your child should not have intramuscular injections until the platelet count rises to a safe level, or until a platelet transfusion has been given.
  4. If your child is constipated, the doctor may prescribe stool softeners because hard bowel movements can cause rectal bleeding. (See the section on "Constipation" for dietary treatment of constipation).
  5. Avoid foods with sharp edges that could cut the inside of the mouth.

If bleeding does occur while the platelet count is low, it may be difficult to stop. Any time there is bleeding which is difficult to control, you should report the incident to us. The following suggestions may help guide you as to what to do in specific situations:

(i) NOSEBLEEDS:

Keep your child in a sitting position. Instruct your child to breathe through the mouth. Apply pressure by gently, but firmly, pinching the nostrils closed. Continue this pressure. If the bleeding still does not stop, bring your child to the hospital.

(ii) BLEEDING OF THE GUMS OR MOUTH:

If the bleeding is in an area that is easy to reach, apply gentle pressure until bleeding stops. If you cannot apply pressure, have your child hold ice water in his/her mouth until the bleeding stops. Again, if the bleeding does not stop, bring your child to the hospital.

(iii) A CUT THAT DOES NOT STOP BLEEDING ON ITS OWN:

With a clean, dry cloth, hold gentle but firm pressure over the cut for at least 10 minutes. If possible, elevate the body part that is injured above the level of the heart. If the bleeding continues, take your child to the hospital. Do not apply a tourniquet to control bleeding because this could cause permanent tissue damage. If a cut is deep, and the blood seems to be coming in spurts, apply pressure to the cut and bring your child to the hospital immediately.

(iv) BLEEDING THAT IS SPREADING OR SWELLING UNDER THE SKIN:

With a soft cloth or an ice pack, hold firm, but gentle pressure over the area for at least 10 minutes. If possible, elevate the area above the level of the heart. If the bleeding does not stop, bring your child to the hospital.

(v) SUDDEN SEVERE HEADACHE OR COLLAPSE

This could be caused by bleeding inside the head. If this should occur, you should keep your child in a sitting position and bring him/her to the hospital immediately.

Your child's blood counts will be checked at least weekly while receiving chemotherapy, and more often if it is necessary. This close monitoring should help keep severe bleeding problems from occurring. However, you should be prepared for unforeseen occurrences because your quick action will help prevent serious injury to your child.

Most of the time, your child's counts will be at a level where he/she should be able to fight infection, maintain normal activity levels, and prevent uncontrolled bleeding without these special precautions and treatments. During the times when your child's blood counts are normal, it is very important that your child be allowed to participate in normal activities with other children. The treatment team will be glad to discuss with you any questions you may have about the safety and appropriateness of your child's activities.

7. PAIN

Some of the side effects of chemotherapy and radiation, such as mouth sores or digestive problems, can cause pain or discomfort. You should not give your child Aspirin or products containing ASA (acetylsalicylate) because such products can increase bleeding problems and irritate the stomach. Read labels of over-the-counter medications carefully, and if they contain aspirin or acetylsalicylate, do not give them to your child. Pepto-Bismol is one example of an over-the-counter medication containing ASA which you might use if you did not read the label. As a general rule, you should check with us before giving your child any medications not prescribed by the doctor. Tempra or Tylenol is generally safe and effective for mild pain and temperature control.

If your child has severe or persistent pain, or pain and fever at the same time, you should contact us. A severe headache when platelets are low, or a stiff neck accompanied by fever should be reported to us immediately.

Vincristine can cause muscular aches in the arms or legs and jaw pain. If your child has been treated with Vincristine and is having this kind of pain, but it cannot be controlled by Tylenol or Tempra, let your treatment team know.

8. BODY IMAGE CHANGES

Changes in physical appearance may be the most upsetting side effects of chemotherapy for you and your child. Hair loss, excessive weight gain or weight loss, and skin rashes are all physical changes which your child may experience. With the support of family members, close friends, and members of the health care team, your child will finish therapy with a positive self image. Each child is different, and it is impossible to predict exactly what changes your child will experience. The treatment team can give you some idea of what to expect, however, based on your child's medications and treatment plan.

A. HAIR LOSS (ALOPECIA)

Hair loss caused by chemotherapy or radiation therapy to the head is almost always reversible. In fact, many children will re-grow a full head of hair while still on treatment. Do not be surprised if the new hair comes in lighter or darker in colour, curly when it used to be straight, or thicker than it was.

Not all children become completely bald; some will experience only thinning. Moreover, patterns of hair loss may differ from one child to another: some children seem to lose their hair overnight, while others may lose it over a period of days to weeks.

The loss of one's hair, while not life threatening, can be the most traumatic part of receiving cancer treatment. You may be able to predict the emotional effect that hair loss is likely to have on your child. Many young children will be just as happy without hair because they do not have to comb, brush, or wash it. In fact, it may be more upsetting for parents than it is for children. Older children, who do not like to be different from other children, will need support and help in dealing with hair loss.

If your child wants to wear a wig, you may want to shop around before hair loss becomes very noticeable, so that hair colour and style can be duplicated closely. Males, as well as females may want to wear wigs. Wigs are available in natural hair or synthetic hair. Either type can be styled by a beautician to match your child's hair closely. Synthetic hair wigs are generally less expensive and easier to care for. Let the treatment team know if you need help in this area. Some children may choose to wear a scarf or bandanna. These can make an attractive and comfortable head covering when worn alone or with a wig. There are many creative ways to wear these head coverings. Ask for ideas and pamphlets on the subject.

Finally, a word about health. Bare heads lose heat in the Winter time and get sunburned in Summer. Encourage your child to use appropriate head protection in the form of a hat, wig, scarf, or sun-screen during these times.

B. EXCESSIVE WEIGHT GAIN OR LOSS

Steroids such as Prednisone or Decadron may cause increased appetite, excessive weight gain (particularly in the face and abdomen), and fluid retention. These effects will disappear when steroids are discontinued. If your child is on intermittent courses of steroids, he/she may need clothes in two sizes to remain comfortable during the weight fluctuations.

It is important to realize that children on steroids may be genuinely hungry and may become extremely hungry without warning. These children need access to snacks at all hours. Much of the weight gain from steroids is from fluid retention. While taking steroids, your child should avoid salty foods and foods high in sodium which will increase fluid retention. (See section on Nutrition).

Because chemotherapy interrupts normal metabolism, your child may lose weight even while eating a well balanced diet. The treatment team will monitor your child's weight and nutrition status closely and provide nutritional support through the dietician if necessary. If excessive weight loss or weight gain causes problems with friends and schoolmates or makes your child self-conscious, your acceptance, support, and understanding will be very important. Please let the team know if your child is having problems in this area because they may be able to help.

C. SKIN CHANGES

(i) RASHES

Some chemotherapy drugs can cause skin rashes such as acne, or hives. These rashes can be side effects or allergic reactions to the medication. For this reason, it is best to inform us of any skin changes your child develops so that we can decide what treatment (if any) is necessary.

(ii) EXTRAVASATION

Some chemotherapy drugs can cause tissue damage if they accidentally leak outside the vein. These drugs are called vesicants, and leakage into the body tissue is called extravasation. These drugs are always given intravenously, and you should know which, if any, of the drugs your child receives are vesicants. Extravasation can still occur even when a central line is used, though it is rare. The effects of extravasation vary from mild tissue irritation or redness to serious tissue damage requiring hospitalization and even surgery. Usually extravasation can be detected immediately, but occasionally effects may be delayed. If your child complains of pain or burning in an area where he/she has recently (within the last two or three days) received a vesicant drug, extravasation may have occurred. Pain and discomfort can be eased by putting an ice pack on the area. If the vesicant drug your child received was Vincristine or Vinblastine, you should apply warm soaks instead of ice. If you suspect that extravasation has occurred, contact us for further instructions.

9. OTHER SIDE EFFECTS OF TREATMENT

The side effects reviewed in the previous sections are those which occur most commonly in children receiving cancer treatment. Many of the medications used to treat cancer share common side effects, such as suppressing the bone marrow, or causing hair loss or nausea. Each treatment drug may also have individual properties which lead to specific side effects for that drug. Body organs such as the kidneys, liver, heart, or brain may be affected by certain drugs and radiation. These effects may range from very mild to very serious or even to life-threatening in some children.

You will receive a list of the medications with which your child will be treated, along with a list of all the known side effects of these medications. The team will also review with you the protective measures that can be taken and the tests that can be performed to detect the onset of problems. If serious side effects occur, modifications may be made to your child's treatment plan, or treatment may be interrupted or stopped.

Not all children experience the same side effects to the same treatments. Every attempt will be made to prevent complications from occurring and to deliver the treatments in the safest manner possible.

10. LONG TERM SIDE EFFECTS OF TREATMENT

During the past 20 years there have been many major advances in the treatment of childhood cancer. This, in turn, has created a population of childhood cancer survivors, which continues to grow and to teach us about the long term effects of cancer treatment in children.

Children who are successfully treated for cancer, may in later years, develop abnormalities or "late effects" related to the therapy (radiation, chemotherapy, or surgery) they received earlier. These late effects can include psychosocial problems, learning disabilities, various growth and development problems, organ (heart, liver, lung or kidney) damage, reproductive problems, and the development of second cancers. Many of the problems which can develop are specific to treatments your child may or may not receive.

These are obviously difficult issues to consider when your child is first diagnosed and treated for cancer. The treatment of cancer includes complicated therapies with significant side effects, and these risks must be weighted against the benefits that can be expected with treatment. Your child will be carefully monitored to avoid preventable side effects from developing. It is important that you feel comfortable discussing these aspects of cancer treatment with your child's treatment team. When your child has completed treatment, it will be recommended that he or she receive continuous follow-up until adulthood is reached. The schedule and the testing necessary will be explained to you by your treatment team and will depend on the type of cancer and the type of therapy given.