Drugs used to treat children with cancer are known by various names, which can get very confusing. You may hear the same drug referred to by its generic name, an abbreviation, or one of several brand names, depending on which doctor, nurse, or pharmacist you talk to. The list below provides the generic name of the most commonly used chemotherapy drugs and some of the most common brand names.

This section lists the drugs most commonly used to treat children newly diagnosed with leukemia. It explains how the drugs are given, how they work, and the most common side effects. To learn about less common side effects, visit http://chemocare.com/chemotherapy/drug-info.

Allopurinol (al-o-PUR-in-all)

How given: Pills by mouth; IV infusion

Common side effects:

• Rash
• Diarrhea
• Nausea
• Liver toxicity

Arsenic trioxide (AR-sen-ick try-OX-ide)

How given: IV injection or infusion over several hours

Precaution: Arsenic trioxide is associated with a serious condition known as APL differentiation syndrome. This complication is characterized by breathing difficulties, lung and heart problems, fluid retention, and weight gain.

Common side effects:

• Nausea and vomiting
• Cough
• Fatigue
• Dizziness
• Headache
• Rapid heartbeat
• Swelling of arms, hands, feet, and lower legs
• Rash or itching
• Fever
• Swelling at the injection site
• Insomnia
• Numbness or tingling
• Itching
• Diarrhea

We worked out a system with the hospital and home health company to give most of the arsenic doses at home. We’d go to the hospital on Mondays where they would access the port and give the first dose (2-hour infusion). Then, we’d go home and a home health nurse would bring the next four doses to us, each in a little container that looked like a grenade. Every day, one of these would be hooked to the line from his port, and he could just carry it around in his pocket while it infused. After his Friday dose, we’d deaccess the port.

L-Asparaginase (L-a-SPARE-a-jin-ase)

How given: IM injection

Types: The three types of L-asparaginase are E. coli asparaginase, Erwinia asparaginase, and pegylated asparaginase (also called PEG- or PEG-L-asparaginase).

Precautions: Occasionally a child will have a severe allergic reaction to L-asparaginase. It is important that the drug be given by trained medical personnel who have emergency equipment available. The child should be monitored at the clinic for 20 to 30 minutes after receiving the drug in case a reaction occurs. If a child has a reaction to one type of asparaginase, one of the other forms of this drug may be tried. If the child reacts to all forms of asparaginase, use of the drug is usually stopped.

Common side effects:

• Nausea and vomiting
• Fever and chills
• Loss of appetite and weight
• Fatigue
• Headaches
• Sleepiness
• Stomach or abdominal cramps
• Allergic reaction, including swelling, difficulty breathing, and rash

Meagan had no problem with the L-asparaginase other than that the shots in her thigh were painful. I’d recommend that parents put EMLA® on two hours before the shot to reduce the pain.

• • • • •

A couple of hours after Preston’s third dose of L-asparaginase his leg began to swell up around the injection site. His leg grew to three times its normal size. The doctors switched him to a different kind of L-asparaginase for all subsequent doses, and he had no further problems.

Bosutinib (boe-SUE-ti-nib)

How given: Pill by mouth

Precaution: Do not chew, crush, or break the pills; avoid grapefruit and grapefruit juice.

Common side effects:

• Diarrhea
• Nausea and vomiting
• Abdominal pain
• Low platelet count
• Rash

Busulfan (byoo-SUL-fan)

How given: Pills by mouth

Precaution: Children 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)
• Loss of appetite

Hints for parents: Giving your child busulfan at bedtime may decrease nausea and vomiting. 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.

Cyclophosphamide (sye-kloe-FOSS-fa-mide)

How given: IV injection or infusion

Precautions: 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 given.

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
• Temporary hair loss

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 two hours to change her diaper so that the nurse could weigh it to make sure she was passing enough urine.

Cytarabine (sye-TARE-a-been)

How given: IV infusion; intrathecal injection; subcutaneous injection

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
• Mouth sores
• Headache

I told my daughter’s oncologist how happy I was that she had not had any severe nausea after her first few doses of ARA-C (cytarabine). His only reply was, “It’s cumulative.” Within an hour, on the long drive home, she was vomiting constantly. We became ensnared in a 2-hour traffic jam. She ran out of clean clothes, so for two hours, I repeatedly carried her to the side of the road, a naked, bald, 25-pound 4-year-old with tubing hanging from her chest, and supported her as she dry-heaved. The people in the cars around us were in tears and kept asking if there was anything they could do to help. I just focused on comforting her, and getting her home to that vial of ondansetron in our fridge.

Dasatinib (da-SA-ti-nib)

How given: Pills by mouth

Precaution: Do not chew, crush, or break the pills.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Diarrhea
• Headache
• Fatigue
• Muscle and bone pain
• Rash
• Slowed growth
• Fever
• Fluid in legs and around the eyes

Daunorubicin (daw-no-ROO-bi-sin)

How given: IV injection or infusion

Precautions: Daunorubicin causes urine to turn red; this discoloration is normal. This drug can injure the heart muscle, so heart function must be monitored during and after treatment. If daunorubicin leaks into the tissue surrounding the injection site, it can cause localized tissue damage.

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
• Mouth sores

My son didn’t have any problems from daunorubicin, but I sure worried about heart damage. I went to a conference and learned that the cut-off dose was below what he had on the protocol. I requested an echocardiogram, and his heart function was normal, but I know we need to follow this for life.

Dexamethasone (dex-a-METH-a-zone)

See Prednisone

Doxorubicin (dox-o-ROO-bi-sin)

How given: IV injection or infusion

Precautions: Doxorubicin causes urine to turn red; this discoloration is normal. This drug can injure the heart muscle, so heart function must be monitored before starting the drug and throughout treatment. If doxorubicin leaks out into the tissue surrounding the injection site, it can cause localized tissue damage.

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
• Mouth sores

The Adriamycin® (doxorubicin) 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. That’s when they decided that he wouldn’t have the delayed intensification phase.

• • • • •

Other than red urine and the expected low counts, hair loss, and nausea, Christine had no problems from her many doses of doxorubicin. She is now 29 and has an EKG (electrocardiogram) and echocardiogram every two years. So far, no problems.

Etoposide (e-TOE-poe-side)

How given: IV injection or infusion; pills by mouth

Precautions: This drug interacts with several common drugs and herbs, such as aspirin, cyclosporine, 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
• Temporary hair loss

Filgrastim (fil-GRA-stim)

How given: Subcutaneous injection; IV infusion

What it is: Filgrastim is a colony stimulating factor that stimulates the production of white blood cells (WBCs). This medication does not treat cancer; it helps increase WBC counts after chemotherapy.

Common side effects:

• Nausea and vomiting
• Low platelet counts, which may increase risk of bleeding
• Fever
• Bone pain

Fludarabine (flew-DARE-a-bean)

How given: IV injection or infusion

Precautions: This drug can cause infertility. If the child needs a blood transfusion while taking fludarabine, the blood must be irradiated to minimize the chance of an autoimmune reaction.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Weakness
• Nausea and vomiting
• Loss of appetite
• Fever, with or without chills
• Cough

Idarubicin (eye-dah-ROO-buh-sin)

How given: Slow IV injection

Precautions: Idarubicin causes urine to turn red; this discoloration is normal. This drug can injure the heart muscle, so heart function must be monitored before starting the drug and throughout treatment. If idarubicin leaks out into the tissue surrounding the injection site, it can cause localized tissue damage.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Temporary hair loss
• Abdominal cramps and diarrhea
• Decreased appetite
• Mouth sores

Ifosfamide (eye-FOSS-fah-mide)

How given: IV infusion

Precautions: The child should be given extra fluids by mouth or IV during infusion. Mesna, a drug that protects the bladder, should also be given.

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
• Loss of appetite
• Blood in the urine

Hints for parents: Have your child drink plenty of fluids, if possible, prior to treatment. This drug is usually given over three to five 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 your child may need to take oral supplements.

Imatinib (im-AT-in-ib)

How given: Pills by mouth, taken with food and water

Precautions: This drug causes birth defects if taken during pregnancy. It also interacts with many other medications and with grapefruit juice. Tell the doctor about all medications your child takes and avoid grapefruit and grapefruit juice.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Swelling of face, feet, and hands
• Muscle cramps and bone pain
• Bone pain
• Diarrhea
• Skin rash
• Fever

Isotretinoin (eye-soe-TRET-i-noin)

See Tretinoin

Melphalan (MEL-fa-lan)

How given: Pills by mouth; IV infusion

Common side effects:

• Low blood cell counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting

Mercaptopurine (mer-kap-toe-PYOOR-een)

How given: Pills by mouth

Precautions: Certain drugs, including allopurinol and sulfa-based antibiotics, can worsen side effects of mercaptopurine or depress blood counts. Mercaptopurine can raise blood levels of uric acid, resulting in kidney damage.

Note: See earlier section in this chapter called “Different Responses to Medications” to review the genetic tests that determine whether and how quickly your child might metabolize this drug.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Liver toxicity
• Loss of appetite
• Nausea and vomiting

My son was diagnosed with B-cell ALL. He is currently in long-term maintenance and doing very well. During interim maintenance he had a severe drop in all counts. This was labeled as pancytopenia. His marrow shut down. When this first happened all counts were at rock bottom, and they thought he had relapsed. He was tested for TPMT, and we found out the full dosage of 6-MP was poisoning him. He is currently being treated at 50% of the standard dose and being monitored through bimonthly CBCs [complete blood counts]. The doctor will slowly increase the dosage to maintain a desired ANC if needed.

Methotrexate (meth-o-TREX-ate)

How given: Pills by mouth; IV infusion; IT or IM injection

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
• Mouth sores
• Headaches, tingling pain down legs, and spinal irritation (when given by IT injection)
• Neurotoxicity that can cause learning disabilities (depends on dose and child’s age)
• 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 (SPF 30 or higher) when playing outside. 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.

My daughter had serious problems with rashes during maintenance. The doctors thought she had developed an allergy to the weekly methotrexate. She often would be covered with rashes that looked like small, red circles with tan, flaky skin inside. They were extremely itchy and unattractive. We spent hundreds of dollars at the dermatologist trying various prescription remedies. None worked. In desperation, I went to our local herbalist and asked if she had anything totally nontoxic, which would help the rash but not affect her chemotherapy. She sold me a small tub of salve made from olive oil, vitamin E oil, and calendula flowers. We checked with my daughter’s oncologist before using it. It totally cured the rash after two days and worked each time that the rash reappeared. What a relief!

• • • • •

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.

• • • • •

My son developed learning disabilities from his high-dose methotrexate protocol. He received tutoring through high school and is doing extremely well in college.

Mitoxantrone (mye-TOX-an-trone)

How given: IV injection

Precautions: Mitoxantrone can injure the heart muscle, so heart function must be monitored before starting the drug and throughout treatment. If mitoxantrone leaks out into the tissue surrounding the injection site, it can cause localized tissue damage.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Nausea and vomiting
• Fever
• Liver toxicity

Mycophenolate mofetil (MYE-koe-FEN-oh-late MOE-fe-til)

How given: Pills by mouth

Precautions: Do not chew, crush, or break the pills; take on an empty stomach.

Common side effects:

• Anxiety
• Back pain
• Constipation or diarrhea
• Headache
• Nausea and vomiting
• Trouble sleeping

Nilotinib (nye-LOE-ti-nib)

How given: Pills by mouth

Precautions: Do not chew, crush, or break the pills; avoid grapefruit and grapefruit juice.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Rash
• Headache
• Itching
• Nausea and vomiting
• Cough
• Diarrhea
• Constipation
• Fatigue
• Muscle and bone pain
• Slowed growth

Ponatinib (poe-NA-ti-nib)

How given: Pills by mouth

Precautions: Do not chew, crush, or dissolve the pills; avoid grapefruit and grapefruit juice.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• High blood pressure
• Rash
• Increased blood sugar
• Abdominal pain
• Constipation
• Fatigue and weakness
• Headache
• Dry skin
• Fever
• Joint pain
• Decreased appetite
• Liver toxicity

Prednisone (PRED-ni-zone) and dexamethasone (dex-a-METH-a-zone)

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 “Antinausea Drugs Used During Chemotherapy” later in the chapter.

How given: Pills or liquid by mouth; IV or IM injection

Precautions: Every parent who contributed stories for this book 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
• Weight gain
• Heartburn
• Fluid retention
• Round face and protruding belly
• Sleeplessness and nightmares
• Nervousness, restlessness, hyperactivity
• Muscle weakness with loss of muscle mass
• Hypersensitivity to lights, sound, and motion
• Muscle cramps or pain
• Swelling of feet or lower legs
• High blood pressure
• High blood sugar

Judson was a hyper, high-strung child who became extremely hyperactive when he was on prednisone. My recommendation for other parents dealing with this difficult side effect is to run—don’t walk—to your nearest library or bookstore and get some books on hyperactive behavior in children. It is important that parents understand this problem and learn to deal with it in a loving way. Remember, too, that this side effect will go away when the prednisone is out of the child’s system. Judd would be hyperactive for the entire two weeks, desiring to eat every 15 minutes or so, making noises constantly, itching all over, sleeping less, having a terrible temper, and losing his fine motor and concentration skills.

During this time he would develop bad behavior because we could not parent him the way we would normally. A few days after his prednisone ended, we would become very firm and structured in our parenting, and he would return to his normal behavior patterns. My son has been in remission 10 years, has never exhibited abnormal hyperactivity since ending chemotherapy, and is a well-adjusted teen and an excellent student.

• • • • •

Meagan is very emotionally labile after only two doses of prednisone. She is very frustrated, quick to anger, hits, screams. For those five days we try to stay home, and this helps to decrease the stimulation. We plot it out on the calendar in advance so that we can plan accordingly. I think the kids deserve some tender, loving care while taking prednisone. Of course, I don’t allow the hitting, but I do try hard not to aggravate the situation when she is on prednisone. I can see how she is uncomfortable being out of control, but she just can’t help it.

• • • • •

Prednisone sends Stephan into a whirlwind of emotions. Sometimes he seems especially happy, and the rest of the time he is in tears at the drop of a hat. We explained to Stephan that the pill can make him feel this way, and it’s okay to tell us, “I’m grumpy and I need to be alone for awhile.” He gets physical side effects, too. He takes prednisone five days a month, and, like clockwork, on Day 6 he gets itchy, on Day 7 he aches all over, on Day 8 he has severe back, chest, arm, and leg pain, and on Day 9 he starts to feel better.

• • • • •

Preston didn’t act out while on prednisone; instead he became depressed and too compliant. He spent most of his time moodily cooking himself food and eating. We bought a second wardrobe of sweat pants with elastic waists so that he would be comfortable.

• • • • •

Rachel had a dual personality on prednisone. 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.

• • • • •

Prednisone and dexamethasone were the worst drugs for Katy. When she was on steroids for a month straight, 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.

• • • • •

Elke is currently in long-term maintenance for ALL. After one particularly bad steroid pulse, I told her oncologist about how heart-rending it was to watch a 3-year-old repeatedly wail, “I’m so sad!” while lying despondently on the couch. Her doctor prescribed potassium supplements to counteract the severe depression and mood swings caused by the dexamethasone. She starts the potassium a couple days before she begins the steroid pulse, and ends a couple of days after. Although she is by no means even-tempered during her pulses, she no longer seems despondent. The potassium has also greatly decreased the muscular pain she always suffered from the steroids.

• • • • •

Jeremy never slept well when he was on prednisone. He had nightmares of doctors chasing him through the hospital halls. He had a lot of night sweats and was hungry all night and day. He slept with a loaf of bread, and when we would go places, he always carried a can of Campbell’s® chicken soup and a can opener. He desperately needed to make sure that he would never be without food.

• • • • •

When you add steroids to a teen boy’s already hyped up emotional level, you get ignition. My son was ages 14 to 19 when taking steroids. 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.

• • • • •

Jody just seemed a little high while on prednisone. He was crazy for food but didn’t have any behavior problems. He had lots of energy.

Thioguanine (thigh-oh-GWAN-neen)

How given: Pills taken by mouth on an empty stomach

Precaution: In some cases, thioguanine (6-TG) has caused liver problems. If your child’s abdomen rapidly enlarges, call your doctor immediately.

Note: See earlier section in this chapter called “Different Responses to Medications” to review the genetic tests that determine whether and how quickly your child might metabolize 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
• Mouth sores
• Headaches
• Loss of appetite
• Liver toxicity
• Swelling of the legs, hands, and feet

Tay’s abdomen slowly began to enlarge and then it suddenly went from a little bloated to huge. He looked pregnant and his abdomen was rock hard. He gained 10 pounds in one day—from 55 to 65 pounds. It affected his white, red, and platelet counts. Tay was taken off all meds. He was given potassium by mouth, albumen by IV, and several blood and platelet transfusions. It was very scary! He also ran a fever off and on, and we were in the hospital for days. Once his abdomen shrank and his counts stayed steady we went home.

Tretinoin (TRET-in-oin) and Isotretinoin (iso-TRET-in-oin)

How given: Capsules taken by mouth; do not crush, chew, or dissolve capsules

Precautions: These medications interact with several antibiotics and other classes of drugs. People using these drugs should avoid taking vitamin A or any multivitamins containing it, as this vitamin can cause toxic levels to build up in the body.

Common side effects:

• Low blood counts, which may increase risk of infection or bleeding and cause weakness, fatigue, and paleness
• Headaches
• Fever
• Dry skin
• Bone and joint pain
• Rashes
• Nausea and vomiting
• Flu-like symptoms
• Swelling of feet and ankle
• Abdominal pain
• Liver toxicity

Vincristine (vin-CRIS-teen)

How given: IV injection or infusion

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.

Note: The side effects of vincristine are most obvious during induction and consolidation, when it is given weekly. It is generally better tolerated during maintenance when it is given monthly.

Common side effects:

• Severe constipation
• Temporary hair loss
• Nausea and vomiting
• 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
• Pain, blisters, and skin loss if drug leaks into tissues
• Abdominal cramps
• Changes in taste

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 strong pain medications. 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 needed to counteract this drug’s side effects.

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.

• • • • •

Vincristine incapacitated Katy. She couldn’t walk, lift her head, or open one eyelid. She had trouble swallowing and stayed in bed for weeks during induction and consolidation. I read the package insert for vincristine and discovered that the manufacturer recommended that vincristine be given at least 12 to 24 hours before asparaginase to minimize toxicity. Katy’s protocol required that both drugs be given at the same time. I negotiated with the doctors and had her schedule changed so that these two drugs were given on different days. She was soon back on her feet, but still, after a year off treatment, she has generalized muscle weakness and problems with balance.

• • • • •

My daughter Elke (age 2 ½ at diagnosis of ALL) is very sensitive to the neuropathic effects of vincristine. During induction she developed breathing and swallowing issues due to vocal cord paresis, had severe jaw and leg pain, and could not walk. Her doctors quickly started her on Neurontin® (generic name: gabapentin) to combat the neuropathy. She is currently in long-term maintenance and taking Elavil® for the same purpose. Although these are off-label uses of these medications, they are fairly effective at alleviating some of the pain caused by the vincristine. Since the damage done by vincristine can be long-term and cumulative, it is important to be proactive in addressing its side effects. Elke may not be able to run yet but she can walk, thanks to the continuous use of these medications and the willingness of her doctors to withhold or reduce her dosages of vincristine when warranted.

• • • • •

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 got traction boots for him to wear at night.