Childhood Cancer
Chemotherapy drugs and their possible side effects
This section describes common and infrequent side effects of anticancer drugs, which may be overwhelming to read. Please remember, each child is unique and will handle most drugs without major problems. Most side effects are unpleasant, but not serious, and subside when the medication stops. The experiences of parents included here may provide insight, comfort, and suggestions should your child have an unusual side effect. If you have any concerns after reading these descriptions, consult with your child’s oncologist.
The chemotherapy made Rachel’s tastes change, so we adapted to what she liked or would eat. She lived on bland or very salty foods, like pickles and bacon. Basically, we gave her whatever she wanted to eat, whenever she wanted it.
Remember to keep all chemotherapy drugs in a locked cabinet away from children and pets.
Side effects terminology
Many of the side effects caused by the drugs described in this chapter have medical names that may be unfamiliar to you. The following table defines these terms. This way, you can understand what the members of your child’s treatment team mean when they discuss side effects or when they write these terms in your child’s chart or electronic medical record.
| Medical Name | Description |
| Alopecia | Hair loss |
| Amenorrhea | Absence of a menstrual period |
| Anemia | Low red blood cell count, which causes weakness, fatigue, and paleness |
| Dyspnea | Shortness of breath; breathing difficulties |
| Dysuria | Painful urination |
| Hematuria | Blood in the urine |
| Hemorrhagic cystitis | Inflammation of the bladder; characterized by pus or blood in urine, pain with urination, and decreased urine flow |
| Hyperpigmentation | Darkening of the skin |
| Hypertension | High blood pressure |
| Hypotension | Low blood pressure |
| Jaundice | Yellowish discoloration of the skin or eyes, caused by too much bilirubin in the blood; jaundice may indicate liver toxicity |
| Myelosuppression | Decreased bone marrow activity, resulting in lowered counts of all blood components (red blood cells, white blood cells, and platelets) |
| Neutropenia | Not enough neutrophils (white blood cells that fight infection); this condition increases the risk of infection |
| Pancytopenia | Reduction in the number of all kinds of blood cells (red blood cells, white blood cells, and platelets) |
| Peripheral neuropathy | Pain, numbness, tingling, swelling, or weakness, usually in the hands, feet, or lower legs; caused by damage to the nerves that transmit to the extremities; usually temporary |
| Petechiae | Small red spots under the skin caused by bleeding in tiny blood vessels |
| Photosensitivity | Sensitivity to the sun; can cause sunburn, rash, skin discoloration, hives, and itching |
| Stomatitis | Inflammation or irritation of the membranes of the mouth; mouth sores |
| Thrombocytopenia | Not enough platelets, resulting in poor blood clotting, bleeding, bruising, and petechiae |
Chemotherapy drugs
This section lists drugs commonly used to treat children newly diagnosed with solid tumors.
Actinomycin-D (ack-tin-o-MY-sin) or Dactinomycin (dack-tin-o-MY-sin)
How given: Intravenous (IV)
How it works: Interferes with DNA and RNA
Precaution: Burning pain and swelling can occur if any of the drug leaks into tissues.
Common side effects:
• Low blood cell counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Loss of appetite
• Nausea and vomiting
• Hair loss
• Potentiates (makes stronger) the effect of radiation in the body. This drug is normally not given while the child is undergoing radiation therapy. After radiation, doses of actinomycin D/dactinomycin may cause the tissues in the radiation field to become inflamed (called radiation recall).
Infrequent side effects:
• Mouth sores
• Diarrhea
• Fever and chills
• Rash
• Difficulty swallowing
• Liver damage
Busulfan (byoo-SUL-fan)
How given: Pills by mouth (PO)
How it works: Alkylating agent that interferes with DNA to prevent cell division
Precaution: The child should have lung function tests for early detection of possible toxicities.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding, and cause weakness, fatigue, and paleness
• Patchy darkening of the skin
• Nausea, vomiting, and diarrhea (usually mild)
• Fever
• Loss of appetite
• Mouth sores
• Dry mouth
• Liver damage
Infrequent side effects:
• Lung toxicity (sometimes permanent)
• Cataracts (with long-term use)
• Blurred vision
• Mental confusion
• Seizures
Hints for parents: Giving your child busulfan at bedtime often decreases nausea and vomiting. Promptly report any respiratory, visual, or neurological symptoms to your child’s doctor or nurse. Schedule your child’s pulmonary function tests the week before starting a new cycle of therapy so test results will be available for your child’s doctor to review.
Carboplatin (car-bo-PLAT-un)
How given: Intravenous (IV)
How it works: Inhibits DNA replication, RNA transcription, and protein synthesis
Precautions: The child may be given extra fluids to prevent possible kidney toxicity. A diuretic drug, called mannitol, may also be given to decrease the risk of kidney damage. Children are also usually given a baseline hearing test and then another hearing test before each dose.
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Altered taste
Infrequent side effects:
• Ringing in the ears
• Hearing loss
• Problems with coordination
• Numbness or tingling in fingers and toes
• Kidney damage
Hints for parents: Make sure that you have adequate antinausea medication at home after your child receives this drug. Taste distortion may alter your child’s food preferences. Promptly report to the doctor any hearing problems, such as ringing in the ears, problems hearing in the classroom, or background noise interference. Also report any fine motor coordination problems, such as difficulty buttoning clothes, writing, or picking up small objects.
Our son did experience ringing in his ears and had some questionable hearing tests during treatment with carboplatin, but a recent thorough hearing test after we finished showed his hearing is near perfect.
Cisplatin (sis-PLAT-un)
How given: Intravenous (IV)
How it works: Inhibits DNA replication, RNA transcription, and protein synthesis
Precautions: The child should be given large amounts of IV fluids while receiving cisplatin to prevent kidney damage. A diuretic drug, called mannitol, may also be given to decrease the risk of kidney damage. All urine output should be measured during the infusion. The child should be given a baseline hearing test before cisplatin is given and be monitored for possible hearing loss.
• Nausea and vomiting
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Loss of appetite
• Taste distortion
• Hearing loss
• Ringing in the ears
• Abnormal sodium, potassium, calcium, or magnesium levels
• Kidney damage
• Tingling and weakness in the hands and feet
• Temporary hair loss
Infrequent side effects:
• Low blood pressure
• Allergic reactions
• Rapid or slow heart rate
• Liver damage
• Dizziness, agitation, paranoia
• Temporary blindness, color blindness, or blurred vision
Missy’s protocol required her to have both cisplatin as well as carboplatin (for her stem cell transplant). Both of these drugs, over the course of her treatment, damaged her high-pitch frequency hearing so much that her speech development took a turn for the worse. She needed hearing aids to help correct the problem.
Hints for parents: Administering IV fluids for several days after receiving cisplatin can help eliminate the drug from your child’s system. Because elimination of this drug is much slower than many other agents, make sure you have adequate antinausea medication on hand at home. Promptly report any hearing or neurological symptoms to your child’s doctor or nurse.
Cyclophosphamide (sye-kloe-FOSS-fa-mide)
How given: Intravenous (IV)
How it works: Alkylating agent that disrupts DNA in cancer cells, preventing reproduction
Precaution: The child should drink lots of water or be given large amounts of IV fluids while taking cyclophosphamide to prevent bladder damage. A drug called mesna is also given to prevent bladder damage. Antinausea drugs should be given before and for several hours after this drug is administered.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea, vomiting, and diarrhea
• Loss of appetite
• Temporary hair loss
• Mouth sores
Infrequent side effects:
• Blood in urine
• Cough or shortness of breath
• Skin rash, dryness, and darkening
• Metallic taste during injection of the drug
• Blurred vision
• Irregular or absent menstrual periods in postpubertal girls (temporary)
• Permanent sterility in postpubertal boys (rare at routine doses, more common at doses given for transplants or for high-risk or relapse treatment)
Christine breezed through the Cytoxan® infusions. She would go to Children’s in the afternoon, they would give her lots of IV fluids, and then ondansetron [Zofran®] a half hour before the Cytoxan®. She would sleep through the night with absolutely no nausea, because they were so good about giving her the ondansetron all night and the next morning. It was hard on me because I had to wake up every 2 hours to change her diaper so that the nurse could weigh it to make sure she was passing enough urine.
Doxorubicin (Dox-o-ROO-bi-sin)
How given: Intravenous (IV)
How it works: Antibiotic that prevents DNA from forming, thus preventing cancer cells from multiplying
Precautions: Doxorubicin is a red color, and urine will turn red for a day or two after each dose. This is normal. Burning pain and swelling can occur if the drug leaks into tissues.
Common side effects:
• Low blood cell counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Temporary hair loss
• Mouth sores
Infrequent side effects:
• Loss of appetite
• Diarrhea
• Burning pain and swelling if any drug leaks into tissues
• Heart damage
• Shortness of breath
• Fever and chills
• Abdominal pains
The Adriamycin® just burned right through my son. He never got mouth sores, but he sure had problems at the other end. They had him lie on his stomach with the heat lamp on his bare bottom. His whole bottom was blistered so badly that it looked like he’d been in a fire. They used to mix up what they called “Magic Butt Paste,” and I’ll never forget the recipe: one tube Nystatin® cream, one tube Desitin®, and Nystatin® powder. It was like spackle that they would just slather on. He had a lot of gastrointestinal bleeding, too, so he was continuously getting platelets.
Other than red urine and the expected low counts, hair loss, and nausea, Christine had no problems from her many doses of Adriamycin®. We check her heart function every 2 years, though, because that problem can develop years later.
How given: Intravenous (IV) injection or infusion; pills by mouth (PO)
How it works: Prevents DNA from reproducing and causes cells to die
Precautions: No live vaccines should be given while taking etoposide. It also interacts with several common drugs and herbs, such as aspirin, cyclosporine, glucosomide, and St. John’s wort. Etoposide may cause birth defects if taken during pregnancy. Burning pain, swelling, and tissue damage can occur if any drug leaks into tissues.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Loss of appetite
• Nausea and vomiting
• Temporary hair loss
• Temporary changes in menstrual cycle in girls
Infrequent side effects:
• Low blood pressure
• Shortness of breath
• Numbing of fingers and toes
• Fever with or without chills
Fluorouracil (Floor-ROAR-ah-sill)
How given: Intravenous (IV)
How it works: Antimetabolite that prevents DNA synthesis and blocks RNA translation
Precaution: Children should be monitored for possible liver toxicity.
Common side effects:
• Low blood cell counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Mouth sores
• Blurred vision
• Darkening of the skin
Infrequent side effects:
• Temporary hair loss
• Brittle nails
• Extreme sensitivity to the sun
• Rash
• Itching
• Watery eyes
• Soreness and redness of the soles of the feet and palms of the hands
Coley received several different chemotherapy drugs to treat her hepatoblastoma, including 5-FU. She lost a lot of weight and her hair fell out. She also had a lot of vomiting, but the antinausea drugs helped a great deal.
Ifosfamide (eye-FOSS-fah-mide)
How given: Intravenous (IV)
How it works: Alkylating agent that disrupts DNA in cancer cells, preventing reproduction
Precautions: The child should be given extra fluids by mouth or intravenously during infusion. Mesna, a drug that protects the bladder, should also be given. Your child must urinate every 1 to 2 hours during the treatment, and her urine will be tested for blood. Grapefruit or grapefruit juice may affect the effectiveness of this drug, so parents should check with the doctor about whether their child should avoid these while taking vincristine.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Temporary hair loss
• Nausea and vomiting
• Dizziness
• Excessive sleepiness and mental confusion
Infrequent side effects:
• Kidney damage that may be permanent
• Bladder irritation and bleeding
• Liver damage
• Irritation to veins used for administration
Hints for parents: Have your child drink plenty of fluid, if possible, prior to treatment. This drug is usually given over 3 to 5 consecutive days, so make sure you have an adequate supply of antinausea medicine at home for your child. This drug may cause the kidneys to lose important substances, such as calcium and phosphorus, and it may be necessary for your child to take oral supplements.
Irinotecan (eye-rin-oh-TEE-can)
How given: Intravenous (IV)
How it works: Plant alkaloid that disrupts the structure of DNA, preventing cell reproduction
Precaution: Seizure medications may affect the metabolism of irinotecan
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Loss of appetite
• Nausea and vomiting
• Abdominal cramping and diarrhea
• Excessive sweating, salivation, and facial flushing during administration
• Temporary hair loss
• Fatigue
Infrequent side effects:
• Mouth sores
• Muscle cramps
• Temporary liver damage
• Sugar in the urine
• Dizziness
• Numbness and tingling of hands and feet
Hint for parents: Many of the side effects that occur while, or immediately after, your child receives this drug may be controlled by the administration of a drug called atropine.
The big side effect that comes along with irinotecan is diarrhea. There are two forms: early and late. Early diarrhea could happen even during the infusion (we had this problem during the second dose). Late diarrhea is every bit as much irinotecan’s fault but might not be so obvious, because it can take 4 to 11 days post-infusion to show up. I guess I should say that there are really two other forms: the kind you can tolerate as a mild inconvenience and the more potent kind. Most doctors suggest that Imodium A-D® (over the counter) be given per label instructions, and if that doesn’t control the diarrhea, you should call them for something more. Our second-line drug was Lomotil® by prescription (we gave that and Imodium® and still had no luck). Use common sense with any diarrhea. Call in if it seems out of line, and hydrate, hydrate, hydrate to replace the fluids.
Melphalan (MEL-fa-lan)
How given: Pills by mouth (PO)
How it works: Alkylating agent that interferes with DNA, RNA, and nucleic acid function
Precaution: The child should drink lots of water or be given large amounts of IV fluids while receiving melphalan.
Common side effects:
• Low blood cell counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Temporary hair loss
• Menstrual irregularities
Infrequent side effects:
• Nausea and vomiting
• Skin rashes
• Mouth sores
• Lung scarring
Methotrexate (meth-o-TREX-ate)
How given: Intravenous (IV) infusion
How it works: Antimetabolite that replaces nutrients in the cancer cells, causing cell death
Precautions: Children should not be given extra folic acid in vitamins or the methotrexate will not be effective. Several drugs can cause methotrexate to stay in the system too long or worsen its side effects. Some of these drugs include aspirin, non-steroidal anti-inflammatory drugs, penicillin, bactrim, septra, and several anti-seizure drugs. Children taking methotrexate are very sensitive to the sun and should always wear protective clothing and sunscreen.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Extreme sun sensitivity
• Diarrhea
• Skin rashes
Infrequent side effects:
• Mouth sores
• Temporary hair loss
• Nausea and vomiting
• Loss of appetite
• Fever, with or without chills
• Temporary liver damage
• Temporary kidney damage
• Shortness of breath and dry cough
• Nervous system damage (can be temporary or permanent)
• Neurotoxicity that can cause learning disabilities
• Redness at the site of previous radiation (called radiation recall)
My daughter had serious problems with rashes during treatment with methotrexate. The doctors thought that she had developed an allergy. She often would be covered with rashes that looked like small, red circles with tan, flaky skin inside. They were extremely itchy.
Topotecan (toe-poe-TEE-can)
How given: Intravenous (IV)
How it works: Plant alkaloid that interferes with an enzyme involved in maintaining the structure of DNA
Precaution: Dosing may need to be adjusted for children with kidney damage.
Common side effects:
• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Diarrhea
• Loss of appetite
• Temporary hair loss
• Headache during the infusion
• Dizziness and light-headedness during the infusion
• Fever
• Fatigue
Infrequent side effects:
• Mouth sores
• Skin rashes
• Kidney damage
• Elevated blood pressure and heart rate
• Blood in the urine
Hint for parents: Your child may have diarrhea during treatment with this drug. It can persist for several days after therapy is completed.
Matthew tolerated the topotecan very well. He had the usual nausea and vomiting that he experienced with other chemotherapy drugs, though. He wouldn’t eat much during the treatments, but within a day or two he was usually back to his old self again.
Vincristine (Vin-CRIS-teen)
How given: Intravenous (IV) injection or infusion
How it works: Alkaloid (derived from the periwinkle plant) that causes cells to stop dividing
Precautions: Care should be taken to prevent vincristine from leaking at the IV site because it will damage tissue. Before taking the first dose of vincristine, your child should be started on a program to prevent constipation. Vincristine interacts with several other chemotherapy drugs, so care should be taken in planning the dosing schedule. Grapefruit or grapefruit juice may affect the effectiveness of this drug, so parents should check with the doctor about whether their child should avoid these while taking vincristine.
Common side effects:
• Severe constipation
• Pain (may be severe) in jaw, face, back, joints, and/or bones
• Foot drop (child has trouble lifting front part of foot)
• Numbness, tingling, or pain (may be severe) in fingers and toes
• Extreme weakness and loss of muscle mass
• Drooping eyelids
• Temporary hair loss
• Pain, blisters, and skin loss if drug leaks during administration
Infrequent side effects:
• Headaches
• Dizziness and light-headedness
• Seizures
• Paralysis, including vocal cord paralysis
Hints for parents: Start your child on a stool softener at the beginning of treatment with this drug (do not wait!) and give it consistently. Joint pain (in the jaw, wrists, elbows, and knees) is a temporary side effect, but it is often severe enough to warrant an oral narcotic. Watch your child’s gait and strength, especially going up and down stairs and performing fine-motor activities, such as coloring, writing, or buttoning clothes. Report problems in these areas promptly because your child’s doctor may choose to alter the dose. Sometimes medications (e.g., gabapentin, also known by the brand name Neurontin®) and physical therapy are necessary to counteract the side effects of this drug.
My daughter was diagnosed with hepatoblastoma when she was 3 months old. Her chemo included vincristine, 5-FU, cisplatin, and doxorubicin. She had really bad mucositis and nausea/vomiting during the first two rounds of chemo. I told them that the sound of her crying had changed, and she was coughing a lot during feedings. It turns out her vocal cords were paralyzed from the vincristine. She was in a lot of pain and needed to be on a continuous drip for that. They removed vincristine from the next two chemo rounds. I couldn’t nurse her anymore so they put a G-tube in because they were afraid she might aspirate and get pneumonia.
Preston (diagnosed age 10) had an awful time from vincristine. He would develop cramping in his lower legs, and would just curl up in bed, in great pain. It would start a couple of days after he received the vincristine, and would last a week. I would massage his legs, use hot packs, and give him Tylenol®. I would have to carry him into the clinic, because he couldn’t walk. I did some research and discovered that when the bilirubin is high, the child can’t excrete the vincristine and therefore the toxicity is increased. We lowered his vincristine dose and got him into physical therapy.
Soon after diagnosis at age 5½, Robby became so weak that he stopped walking. He did not walk for at least a week, maybe more. When Robby did walk, he was up on his toes. I kept asking the doctors about it, and they poohpoohed it, saying it was just the vincristine. Finally, I took Robby to the pediatrician, who was horrified at how bad his feet had gotten. We immediately started daily physical therapy and major exercises and got traction boots to wear at night.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups