Childhood Brain and Spinal Cord Tumors
Chemotherapy drugs and their possible side effects
This section contains both common and infrequent side effects of anticancer drugs, along with parent and survivor experiences and suggestions. You may be overwhelmed by reading about all the potential side effects of each drug. 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 parent experiences 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 neuro-oncologist.
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. This table defines those terms so you can understand what the members of your child’s treatment team mean when they discuss side effects.
| Medical Name | Description (most of these conditions are temporary) |
| Alopecia | Hair loss |
| Amenorrhea | Absence of a menstrual period |
| Anemia | Low red blood cell count, which causes weakness, fatigue, and paleness |
| Arrhythmia | Abnormal electrical rhythm in the heart; the term is usually used to describe an abnormal heartbeat |
| Aseptic necrosis | Death of bone tissue, caused by reduced blood supply |
| Bowel perforation | A hole that develops in the stomach or intestine |
| Conjunctivitis | Inflammation or infection of the membrane that lines the eyelids (eyes can be red, irritated, crusty and watery; vision may be blurry) |
| Dyspnea | Shortness of breath; breathing difficulties |
| Dystonia | Muscle contractions that result in repetitive twisting or movement of a limb or other body part, which may be painful |
| 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 |
| Hyperglycemia | Increased blood sugar |
| Hypoglycemia | Decreased blood sugar |
Chemotherapy drugs
This section lists drugs commonly used to treat brain and spinal cord tumors.
Bevacizumab (bev-a-SIZ-u-mab)
How given: Intravenous (IV) injection; intrathecal (IT) injection
How it works: Bevacizumab is an angiogenesis inhibitor that inhibits the growth of new blood vessels.
Precaution: Children must be monitored closely for signs of bleeding or kidney toxicity.
Common side effects:
- Nosebleeds
- High blood pressure
- Dry skin
- Back pain
- Headaches
- Irritation of the nose
Infrequent side effects:
- Bowel perforation
- Serious bleeding
- Wound healing problems
- Kidney problems
Bleomycin (blee-oh-MY-sin)
How given: Intramuscular (IM), subcutaneous (SQ), intravenous (IV), intracavitary
How it works: Bleomycin binds with DNA to stop cell growth.
Precautions: A small percentage of children are allergic to this drug. Lung function tests are used to detect possible lung toxicity.
Common side effects:
- Hair loss
- Mouth sores
- Nausea, vomiting
- Weight loss and loss of appetite
- Darkening of the skin
- Thickening of skin on palms, fingers, soles of feet
- Fever, with or without chills
Infrequent side effects:
- Lung toxicity (potentially permanent)
- Allergic reactions
- Joint swelling
Hints for parents: Plan on staying with your child during the short time that the drug is given in case an allergic reaction occurs. Promptly report any shortness of breath, cough, or other breathing difficulties to the nurse or doctor.
Busulfan (byoo-SUL-fan)
How given: Pills by mouth (PO)
How it works: Busulfan is an 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 (temporary)
- Lung toxicity (potentially permanent)
- Cataracts (with long-term use)
- Blurred vision
- Mental confusion
- Seizures
Hints for parents: Giving your child the medicine 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 prior to starting a new cycle of therapy so that test results will be available for your physician to review.
Carboplatin (car-bo-PLAT-un)
How given: Intravenous (IV)
How it works: Carboplatin inhibits DNA replication, RNA transcription, and protein synthesis.
Precautions: The child may be given extra fluids to prevent possible kidney toxicity. Mannitol, a diuretic medication, is sometimes given with this drug to increase urine output. Children are also usually given a baseline hearing test and then another hearing test before each dose.
Common side effects:
- 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
- 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.
Carmustine (CAR-mus-teen)
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.
How given: Intraveneous (IV)
How it works: Carmustine is an alkylating agent that disrupts DNA and RNA replication, resulting in cell death.
Precautions: Give through central venous catheter or newly placed peripheral IV. Baseline pulmonary function tests are necessary.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea and vomiting
- Hair loss that is not permanent
- Patchy brown discoloration of the skin
- Low blood pressure if rapidly infused
- Irritation along the vein if given through a peripheral IV
Infrequent side effects:
- Diarrhea
- Inflammation of the esophagus
- Clots in blood vessels in the liver
- Permanent lung damage
- Permanent kidney damage
- Second cancer (cancer that occurs as a result of treatment)
- Facial flushing and dizziness
Hints for parents: The serious side effects of this drug are generally only seen at the high doses used as part of a stem cell transplant. Report any shortness of breath or dry, nonproductive cough to your child’s physician promptly. Your child should have pulmonary function tests performed prior to starting therapy with this drug and at specified intervals thereafter. The drug is reconstituted in alcohol, and some children act intoxicated after a high dose is given.
Cisplatin (sis-PLAT-un)
How given: Intravenous (IV)
How it works: Cisplatin is a platinating agent that 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 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.
Common side effects:
- 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
- Abnormalities of sodium, potassium, calcium, and magnesium
- Kidney damage
- Tingling and weakness in the hands and feet
- Hair loss that is not permanent
Infrequent side effects:
- Low blood pressure
- Allergic reactions
- Rapid or slow heart rate
- Damage to the liver
- 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.
Molly had a pineoblastoma, had surgery, then was placed on a clinical trial for infants with medulloblastoma. She was too young for radiation. She had vincristine and cisplatin, Cytoxan®, thiotepa, carboplatin, and a few others. She had a good bit of muscle wasting from the vincristine, but did really well with the “platins” with no hearing loss. Molly is 3 years old now, and is doing physical therapy twice a week just for muscle strength issues from the vincristine and being in the hospital for so long.
Hints for parents: Administering IV fluids at home 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 that 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) injection
How it works: Cyclophosphamide is an 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® may be given to prevent bladder irritation. 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
- Hair loss that is not permanent
- Mouth sores
Infrequent side effects:
- Bleeding from the bladder
- Cough or shortness of breath
- Skin rash, dryness, and darkening of the skin
- 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 high-risk or relapse treatment or for transplants)
Erica just could not tolerate the Cytoxan®. She had continuous vomiting. At one point she had lost more than one third of her body weight. Our HMO (health maintenance organization) wouldn’t authorize using ondansetron (a very effective antinausea drug) because it was so expensive.
Dacarbazine (da-KAR-ba-zeen)
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 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.
How given: Intravenous (IV)
How it works: Dacarbazine is an alkylating agent that prevents cancer cell reproduction.
Precautions: The child should be given an antinausea drug prior to infusion. Dacarbazine causes severe skin reactions if it leaks outside the IV.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea, vomiting, and diarrhea
- Hair loss that is not permanent
- Sun sensitivity
- Loss of appetite
- Mouth sores
- Flu-like symptoms, including low fever and body aches
Infrequent side effects:
- Pain on injection if the drug is given through a peripheral vein
- Clotting in blood vessels in the liver
- Allergic reactions
- Confusion, blurred vision, and seizures
Hints for parents: Make sure to have an adequate supply of antinausea medication at home during treatment with this drug. Ibuprofen or Tylenol® will help relieve flu-like symptoms if your child develops these. Promptly report any neurological or visual symptoms to your child’s doctor or nurse. Avoid prolonged sun exposure and use SPF 30 sunscreen liberally when your child is outside.
Dexamethasone (dex-a-METH-a-zone)
See Prednisone
Etoposide (e-TOE-poe-side)
How given: Intravenous (IV) injection or infusion; pills by mouth (PO)
How it works: Etoposide 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. It can also irritate the vein where it is injected or damage nearby tissue if it leaks out of the vein.
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
- Hair loss that is not permanent
- 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
Gemtuzumab (jem-TOO-zah-mab)
How given: Intravenous (IV)
How it works: Gemtuzumab is a monoclonal antibody that binds to and enters cancer cells, then delivers a substance that causes the cells’ DNA to break, thus inhibiting growth. It is a targeted therapy that only affects cancer cells.
Precautions: Although few side effects have been reported, in very rare cases, patients suffer from veno-occlusive disease (VOD), in which the small veins in the liver become blocked. This condition is a medical emergency. The signs of VOD include swelling or tenderness of the liver and increased bilirubin levels in the blood.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Fever
- Chills
Infrequent side effects:
- Liver toxicity
- Mouth sores
- Rashes
- Cold sores or fever blisters
Ifosfamide (eye-FOSS-fah-mide) How given: Intravenous (IV)
How it works: Ifosfamide is an 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.
Common side effects:
- Hair loss that is not permanent
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- 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.
Interferon-alpha (in-ter-FEAR-on-AL-fah)
How given: Subcutaneous (SQ), intramuscular (IM), or intravenous (IV) injection
How it works: Interferon-alpha boosts the body’s immune system, enabling it to fight cancer cells. It may also directly interfere with the growth of malignant cells.
Precautions: In very rare cases, interferon-alpha can cause permanent vision loss or congestive heart failure. Patients using interferon should have regular thyroid tests. The drug interacts with theophylline, a drug used to treat respiratory diseases.
Common side effects:
- Fatigue
- Flu-like symptoms
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
Infrequent side effects:
- Dizziness or confusion
- Depression, anxiety, or irritation
- Swelling or irritation at the injection site
- Insomnia
- Abdominal pain, nausea, vomiting, and diarrhea
- Temporary hair loss
- Rashes, sweats, dry skin, or itching
- Allergic reaction
- Tingling in hands and feet
- Swelling of feet and ankles
- Changes in taste or smell
- Dry mouth
- Temporary liver or kidney toxicity
- Chest pain or irregular heartbeat
Irinotecan (eye-rin-oh-TEE-can)
How given: Intravenous (IV)
How it works: Irinotecan is a plant alkaloid that disrupts the structure of DNA, preventing cell reproduction.
Common side effects:
- Loss of appetite
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea and vomiting
- Abdominal cramping and diarrhea
- Excessive sweating, salivation, and facial flushing during administration
- Hair loss that is not permanent
- Fatigue
Infrequent side effects:
- Mouth sores (stomatitis)
- Muscle cramps
- Temporary damage to the liver
- Skin rash
- Sugar in the urine
- Dizziness
- Numbness and tingling of hands and feet
Hints 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 like a shadow 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.
Seizure medications may affect the metabolism of irinotecan, and families should check with their medical team about interaction of seizure medications with other chemotherapy drugs as well.
Lomustine (low-MUS-teen)
How given: Capsules by mouth (PO)
How it works: Lomustine is an alkylating agent that interferes with DNA and RNA replication, resulting in cell death.
Precautions: Your child will probably have baseline pulmonary function tests performed, and these will be repeated at specified intervals throughout treatment with this drug.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea and vomiting
- Loss of appetite
- Hair loss that is not permanent
Infrequent side effects:
- Mouth sores
- Kidney damage
- Permanent lung damage
- Disorientation and confusion
- Menstrual cycle irregularities
- Second cancer (cancer that occurs as a result of treatment)
Hints for parents: Give your child her dose of this drug at bedtime to decrease the possibility of nausea and vomiting. Promptly report any shortness of breath or dry, non-productive cough to your child’s doctor.
Methotrexate (meth-o-TREX-ate)
How given: Intravenous (IV) infusion
How it works: Methotrexate is an 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, including allergic reactions
- Diarrhea
- Skin rashes
Infrequent side effects:
- Mouth sores
- Temporary hair loss
- Nausea and vomiting
- Loss of appetite
- Fever, with or without chills
- Liver damage (temporary)
- Kidney damage (temporary)
- 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 (“radiation recall”)
Hints for parents: Most of the common side effects of this drug are temporary and reversible. Mouth sores can be quite painful, and your child may not eat or drink well when she has them. Always remember to have your child use sunscreen when playing outside (SPF 30 or higher). Minor skin rashes can be treated effectively with over-the-counter cortisone cream. When given as high-dose therapy, methotrexate requires administration of a reversing agent (antidote) called leucovorin. It is critical that your child begin the leucovorin at the correct time to prevent serious, possibly irreversible, side effects.
Prednisone (PRED-ni-zone)
Dexamethasone (dex-a-METH-a-zone)
Carl was on an experimental IV high-dose methotrexate protocol funded through the National Institutes of Health. Side effects ranged from nausea and vomiting to diarrhea, sore bones, mood swings, and disorientation.
These two steroids are grouped together because they are closely related chemically and have similar action and side effects. The biggest difference in side effects appears to be the increased risk of avascular necrosis (death of bone due to decreased blood supply) from dexamethasone.
Dexamethasone is given in high doses as a chemotherapy drug and in low doses to prevent nausea. To see the side effects of dexamethasone when it is used as an antinausea drug, look under “Drugs given to prevent nausea” later in the chapter.
How given: Pills or liquid by mouth (PO), intravenous (IV), or intramuscular (IM) injection
How they work: These drugs are hormones that kill lymphocytes.
Precautions: Every parent interviewed described problems that their child had while on prednisone or dexamethasone. The side effects ranged from mild to severe, but were universal. At high doses, steroids create major behavioral problems in children, which gradually subside after the drug is stopped.
Common side effects:
- Mood changes, from extreme irritability to rage
- Increased appetite and food obsessions
- Increased thirst
- Indigestion
- Weight gain
- Fluid retention
- Round face and protruding belly
- Sleeplessness
- Nightmares
- Nervousness, restlessness, hyperactivity
- Loss of potassium
- Loss of bone mass
- Hypersensitivity to lights, sound, and motion
Infrequent side effects:
- Decreased or blurred vision
- Seeing halos around lights
- Increased sweating
- Weakness with loss of muscle mass
- Muscle cramps or pain
- Swelling of feet or lower legs
- High blood pressure
- High blood sugar
- Hallucinations
Rachel had a dual personality on steroids. She would be fine one minute and then fly into a rage. One time, she literally had an argument with herself. She asked to watch a tape, and then for 20 minutes she argued with herself over whether she should watch the tape. It was painful to watch.
Steroids were the worst drugs for Katy. She hallucinated horrible things. She’d scream that boys were chasing her or that her heart had stopped beating. She’d sob that I was melting and would disappear. She’d dig her fingers into my arm begging me to help her. She sometimes did this all night, and nothing consoled her. She slept very little while taking steroids. She spent day after day and night after night in my arms while I rocked her in the rocking chair, only leaving my arms to eat huge amounts of food. She would eat an entire loaf of bread, and always asked to have “butter spread on it like icing on a cake.” She has never once said that since ending treatment.
Procarbazine (pro-KAR-ba-zeen)
When you add steroids to a teen boy’s already hyped up emotional level, you get ignition. It helped to talk to him about how it would change how he feels and thinks. After a while, he could describe how he was becoming more agitated and wanted to stay in his room alone. He really didn’t like being crabby and angry and would voluntarily isolate himself. I suggested ways for him to control his environment while on the steroids so things wouldn’t irritate him as much. He also knew that rules of behavior did not change just because he was on steroids.
How given: Pills by mouth (PO)
How it works: Procarbazine is an alkylating agent that prevents cancer cell reproduction.
Precautions: This drug is best taken at bedtime, and it is often helpful to take antinausea medicine 30 minutes before taking the drug. Adverse effects, such as headache, tremor, excitation, heart arrhythmias, and visual problems, may occur if the drug is taken with foods rich in tyramine such as fermented cheese, cured meat, and fava beans.
Common side effects:
- Low blood counts 2 to 3 weeks after taking the drug
- Nausea, vomiting, and diarrhea
- Mouth sores
- Skin rash and itching
- Sun sensitivity
- Light sensitivity, double vision
- Low blood pressure
- Rapid heart rate
- Flu-like symptoms, including low fever and body aches
- Tingling and weakness in hands and feet, dizziness, lethargy, nightmares, hallucinations, seizures
Infrequent side effects:
- Frequent urination
- Blood in the urine
- Drug interactions with ephedrine, epinephrine, tricyclic antidepressants, certain narcotic drugs (Demerol®), antihistamines, barbiturates, and certain high blood pressure medications
- Increased side effects if the drug is taken with tyramine-rich foods, such as those listed in the “Precautions” section above
Hints for parents: Make sure to have an adequate supply of antinausea medication at home during treatment with this drug. Give your child the antinausea medication about 30 minutes before giving this drug. Ibuprofen or Tylenol® will help relieve flu-like symptoms if your child develops these. Promptly report any neurological or visual symptoms to your child’s doctor or nurse. Avoid prolonged sun exposure, and use SPF 30 sunscreen liberally if your child is outside. Be sure to tell the doctor if your child is taking any drugs that can enhance the side effects of this drug. Avoid tyramine-rich foods while your child is taking this drug.
Temozolamide (tem-oh-ZO-la-mide)
How given: Capsules by mouth (PO)
How it works: Temozolamide works as an alkylating agent to interfere with DNA replication, causing cell death.
Precautions: Capsules should not be broken open. If this inadvertently occurs, avoid inhaling the powder or directly touching it.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Hair loss that is not permanent
- Nausea and vomiting
- Headache
- Constipation
- Fatigue
Infrequent side effects:
- Seizures
- Dizziness
- Poor coordination
- Weakness on one side of the body
- Infertility
- Second cancer (cancer that occurs as a result of treatment)
Hints for parents: Give your child this medication at bedtime to decrease nausea. Capsules should be swallowed whole and not chewed. The manufacturer states that mixing with applesauce or apple juice is acceptable for children who cannot swallow capsules.
Thalidomide (tha-li-DO-mide)
I gave Nikki her Zofran® and Temodar® [temozolomide] every night for 42 nights on and 28 off. I let her eat dinner and dessert and do a time check. One hour after her last bite, she would take 4 mg Zofran and 1 hour following that, I’d give her the Temodar® [temozolomide].
How given: Capsules by mouth (PO)
How it works: Thalidomide is an anti-angiogenesis agent that may disrupt the blood supply to the tumor, resulting in death of tumor cells.
Precautions: Girls of childbearing age must not become pregnant while taking this drug because it can cause serious birth defects.
Common side effects:
- Drowsiness and excessive sleeping
- Tingling and weakness of the hands and feet
- Constipation
- Dizziness when sitting or standing up
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
Infrequent side effects:
- Slow heart rate
- Allergic reactions
- Severe skin reactions (Stevens-Johnson syndrome)
- Severe birth defects
Hints for parents: Your child should take this drug at bedtime. Give your child a stool softener during therapy with this drug to prevent constipation.
Thiotepa (thigh-oh-TEE-pah)
How given: Intramuscular (IM), intrathecal (IT), intravenous (IV)
How it works: Thiotepa is an alkylating agent that disrupts DNA and inhibits protein synthesis.
Precautions: A small percentage of children have an allergic reaction to this drug.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea and vomiting
- Loss of appetite
- Headache and dizziness
- Weakness of the legs and tingling after intrathecal injection
Infrequent side effects:
- Hair loss that is not permanent
- Allergic reactions
- Severe mouth sores
- Bronzing, redness, peeling skin
- Confusion, cognitive impairment
- Impaired fertility
- Second cancer (cancer occurring as a result of treatment)
Hints for parents: Two to three showers per day are necessary to reduce the possibility of serious skin reactions. When skin peeling occurs, keeping the skin clean and dry is very important. Your child may become very confused for several days after receiving this drug and, depending on her age and developmental level, may require much patience and comforting.
Topotecan (toe-poe-TEE-can)
How given: Intravenous (IV)
How it works: Topotecan is a derivative of a plant alkaloid and interferes with an enzyme involved in maintaining the structure of DNA.
Precautions: Dose 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
- Hair loss that is not permanent
- 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
Hints for parents: Your child may have diarrhea during treatment with this drug that persists for several days after therapy is completed.
Vinblastine (vin-BLAS-teen)
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.
How given: Intravenous (IV)
How it works: Vinblastine is an alkaloid derived from the periwinkle plant that causes cells to stop dividing.
Precautions: Care should be taken to prevent leakage of vinblastine from the IV site. The child should take medications to prevent constipation.
Common side effects:
- Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
- Nausea and vomiting, usually mild
- Constipation
- Pain and a burn if the medicine leaks into the tissues
Infrequent side effects:
- Hair loss that is not permanent
- Mouth sores
- Headache
- Numbness or tingling in fingers and toes
Hints for parents: This drug is often given weekly for a number of weeks. Start a mild stool softener when your child begins taking this drug. If your child develops a burning sensation in the anus from the medication, promptly notify your child’s doctor or nurse.
Vincristine (Vin-CRIS-teen)
How given: Intravenous (IV) injection or infusion
How it works: Vincristine is an alkyloid derived from the periwinkle plant. It causes cells to stop dividing.
Precautions: Care should be taken to prevent leakage of vincristine from 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 functioning of this drug, so parents should check with the doctor about whether their child should avoid these while taking vincristine. Children on vincristine should be tested frequently for kidney and liver toxicity.
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
- Hair loss that is not permanent
- Pain, blisters, and skin loss if drug leaks during administration
Infrequent side effects:
- Headaches
- Dizziness and light-headedness
- Seizures
- Paralysis
Hints for parents: This drug is given weekly for a number of weeks and then monthly. Start your child on a stool softener at the beginning of treatment with this drug and give it consistently. Jaw pain is an early and 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 to your doctor promptly so your child’s dose can be altered. Sometimes medications (e.g., Neurontin®) and physical therapy are necessary to counteract the neurological effects of this drug.
Erica (diagnosed at age 1) once had a vincristine burn on her arm at the IV site. It was red when we went home from the clinic, but by the second day it was badly burned. She developed a blister as big as a half dollar, which left a bad scar. It hurt and was sensitive for a long time. She also developed severe foot drop (she could not lift up the front part of her foot) and fell a lot.
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 5 ½, Robby became so weak in the hospital 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. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites