Download printer-friendly version: 302 Getting through Chemotherapy
Chemotherapy ?or ?chemo,? as it is so often called -- is what many of us associate withcancer treatment. The notion that your child must experience the thing you mayhave seen portrayed so graphically in movies or accounts from friends can beagonizing. Unfortunately, depending on the risk assignment of your child?s NBat diagnosis, chemotherapy will likely be the first step in standard therapyfor your child. Chemotherapy doescause significant side effects as it is killing the cancer, but experiencedhealth care professionals will carefully monitor your child during all aspectsof NB chemo.
Nonetheless,although your child will be in very good hands, you may wish to know more aboutwhat to expect and how you can help keep your child as comfortable aspossible. The focus of this chapter isthe potential short-term side effects of chemotherapy and coping strategiesthat have helped other NB parents during their children?s chemotherapytreatments. (Please use the e-mail link at the end of this section to sendcomments about coping strategies that youhave found helpful during your child?s chemotherapy.) Although we hope it will be useful, pleasekeep in mind that each child?s situation is unique, and you should always addressall of your questions and concerns about your child?s specific situation toyour medical team.
Chemotherapeuticagents are medications that destroy rapidly dividing cancer cells by targetingdifferent phases in the cancer cell?s life cycle. (See ?Overview of Treatment for High RiskNB.?) Since various agents attack the cancer celldifferently, they are commonly given in combination for maximum beneficialeffect. Combination chemotherapy decreases the possibility of the cancer?ssurvival and lessens its ability to grow.
The manner inwhich the chemotherapy is prescribed for your child will be based on a clinicaltrial, a protocol or an institution?s previous medical experience with NB. Your child will probably start on a regimenof induction chemotherapy, chemo thatis given to shrink the tumor before surgical resection (removal). The child will then move on to adjuvant chemotherapy, a term used forchemo given to a child who is considered to have minimal evidence of diseaseafter surgery.
At this time,most institutions administer induction chemo in-patient for high-risk NB andout-patient for low- and intermediate-risk NB. At some hospitals however, nearly all NB chemotherapy regimens areadministered on an outpatient basis in the clinic. At MemorialSloan-Kettering CancerCenter, for example, most children dochemo in the Pediatric DayHospitaland are discharged with backpacks of IV fluids and/or medication infusingthrough portable pumps. It may sound daunting at first, but if your hospitalutilizes this approach, rest assured that you will be trained in simple andtime-tested procedures to make everything go smoothly during any at-homeinfusions.
The mostcommon method of administering chemotherapy is intravenously. However, it can also be delivered by mouth,subcutaneously, intramuscularly, into a body cavity, or into the cerebrospinalfluid. The dose of chemotherapy will bedetermined by your child?s body surface area or weight. Before every round of chemo your child willbe weighed in kilograms and measured in centimeters in order to determine yourchild?s body surface area (in square meters, or ?m2?).
After thechemotherapy consent is signed, the hospital pharmacist will prepare yourchild?s specific chemotherapy dose. First, premedications (often referred to as ?premeds?) will be administered. They are commonly anti-emetics (anti-nausea medications). Then, typically, a specially trained nursewill administer the intravenous (IV) chemo agents by IV pumps into your child?scentral catheter. You will probablywatch anxiously the first round of the liquid medication dripping into yourchild?s body. You may imagine itsearching out and destroying the cancer. You might look to your child for some type of reaction, but he or shewill probably continue watching TV, putting a puzzle together or chatteringaway. It will likely be an anti-climaticmoment.
Along with the IV chemo, your child will receivecarefully calculated intravenous fluids also. A lot of hydration can sometimes mitigate the toxic affects of somechemotherapeutic agents. These extrafluids may cause your child to urinate frequently during chemo, includingwakening during the night. Even youngchildren who have been toilet-trained for several years may have to wear ?pullups? or diapers due to the excessive amts of fluid. Any infant/child in diapers should be changedfrequently, (even during the night), as this urine is irritating to the skin.
Usually bloodwork (CBC and chemistries) and a urine sample will be tested each day prior tochemo initiation and your child?s urine output will be measured (from urinatingin a hat or weighing wet-diapers.)
Potential Side Effects of Chemotherapy
Once youunderstand that chemotherapy is designed to kill rapidly dividing cancer cells,you realize that it can also attack other rapidly dividing cells within yourchild?s body. Your child?s hair, skin,nails, gastrointestinal tract and bone marrow will be under assault. This hit on your child?s non-cancer cells iswhat leads to the most common side effects of chemotherapy your child willlikely experience.
Eachspecific type of chemotherapy, its purpose and its potential side effects willbe explained by a member of your child?s oncology team. (For example,doxorubicin and cisplatin generally cause nausea; cyclophosphamide cansometimes cause bladder bleeding; vincristine can cause loss of reflexes,) Some side effects happen soon after the chemois initiated and some are delayed- days, weeks and even years after the chemois given. The most common short-termside effects are discussed below, along with various strategies that havehelped some NB families cope with them. (As noted, please use the e-mail link at the end of this section to sendcomments about coping strategies that youhave found helpful during your child?s chemotherapy.)
Gastrointestinal (GI) Tract Issues
Nausea, Vomiting and Diarrhea
During thefirst round of chemotherapy, nausea and vomiting often start within the first12 hours and usually sooner with future rounds. These symptoms can occurbecause of the effect of chemotherapy on the GI tract and/or on the vomitingcenter of the brain. Each child?smedication regimen is individualized, child-specific. You will need to work closely with yourchild?s oncology team to determine which medications help ease your child?snausea and vomiting. It is good to keepyour own notes on all the medications and write down how well they worked ordidn?t work (see?Keeping Records?).And keep in mind that it?s best to have medications administered before thesymptoms become pronounced. Also, ifyour child vomits chemo that was taken orally, it is imperative that you informthe oncology team immediately.
There are somedietary considerations that may be helpful to ward off nausea andvomiting. Most parents have found ithelpful to encourage, but not force, the child to eat, and to avoid greasy,spicy, strong- smelling food. Cold foodis commonly tolerated better than hot food. Try having your child drink, wait a about a half an hour, and theneat. High protein, high caloriefoods--like shakes, high fat yogurts, and breakfast meals--are ideal.
Food intakeshould not become a source of stress for your child. As parents we often obsess about every morselof food our NB child consumes, but our children should not feel ourstress. It?s better to follow yourchild?s lead. Some children developstrong cravings during chemotherapy and they commonly experience changes intaste. They intuitively know what theirbody may tolerate. Giving your child thepower to make dietary decisions gives them a sense of control. And remember, anxiety can also cause nauseaand vomiting.
Your child mayexperience diarrhea because chemo can damage the cells that line the intestinalwall. If this occurs it is usuallyadvisable to avoid fatty foods. If yourchild can tolerate it, and it falls within his or her dietary restrictions (see ?SurvivingNeutropenia?), try foods naturally high in fiber and potassium like bananasand potatoes. Notify your health careteam if your child?s diarrhea is severe or if it occurs multiple times in oneday.
Chemotherapycan also cause constipation, as it affects the intestinal nerves, slowing?peristalsis,? the movement of food and wastes through the intestines. Encourage your child to drink fluids,especially apple juice, and eat high fiber foods like whole grain breads andcereals. Fruits and vegetables arebeneficial if they can be tolerated and are allowed. Exercise can also encourage bowel regularity. You need to keep track of your child?s bowelmovements and inform the health care team if your child?s bowel habits slow andconstipation begins to develop. Medications may be prescribed to assist regularity.
Sores in themouth and anywhere in the gastrointestinal (GI) tract, or ?mucositis,? can be aresult of the chemotherapy destroying the mucus membranes. Mucositis occurs as a result of cell deathcaused by chemotherapy or radiation. This causes the mucosal lining of the mouth to slough off and thenbecome red, inflamed, and ulcerated.
Oral mucositiscan be severely painful, depending on the extent of the tissue damage, and canresult in trouble speaking, eating, or even opening the mouth. These ulcers can also become infected. Make sure your child maintains good oralhygiene, and brushes with a soft toothbrush or sponge brush and rinses withwater or water mixed with baking soda after each meal. A ?swish and swallow? preparation and/or a?rinse and spit? mouthwash will usually be provided to assist in oralcare. Different institutions have theirown preferred mixtures. Just make sureno products contain alcohol, as this will almost surely cause a stingingpain. Try soft foods and avoid citrus,spicy, and hot foods. Popsicles, jello,sodas, ice cream, yogurt and shakes can be helpful.
For paincontrol, mild cases can be treated with home remedies such as ice pops, waterice, or ice chips. Some older childrenmay fine sore throat lozenges help. Topical pain relievers, including lidocaine, benzocaine, dycloninehydrochloride, chlorhexidine gluconate, and ulcerease, are often prescribed forsevere mucositis, but it is hard to obtain an effective coating of all areasand the pain relief provided is usually brief. A medication called Magic Mouthwash, which is a mix of lidocaine,diphenhydramine, and Maalox, is sometimes prescribed for mucositispatients. Some say that Magic Mouthwashhas not been proven effective and that the Maalox further dries the tissue,which can add to complications, so that it is best to use lidocaine alone in aswish and spit method. If a narcotic isused for pain control, remember to watch for constipation. Severe cases of pain with mucositis mayrequire a hospital admission if IV pain administration is needed.
Because themucous is present in the stomach and intestines, mucositis can also cause verygelatinous diarrhea. A diaper rash typepaste, ?Butt Paste,? is often provided for rectal area skin.
Your child?sweight and nutritional status will be monitored closely. During severe cases of mucositis and/ornausea, vomiting and diarrhea, a child may be unable to eat or drink anysignificant amount. Your child?s weight,hydration, and nutritional status will be monitored closely. If there are signs of malnutrition anddehydration, your child?s oncologist may order supplementary nutrition. This should not be seen as a failure forparents or the healthcare team, but as what is needed to help your child fightcancer.
Your child?soncologist will explain alternative feeding methods if they are needed. ?Enteral? feedings are liquid feedings thatare delivered by a tube--either a naso-gastric tube (a tube that is passedthrough the nose to the stomach) or a gastric tube (a tube that is passed throughthe abdominal wall into the stomach.) Intravenous fluids can be administered to improve hydration. ?Parenteral? feedings are carefullycalculated nutritional intravenous feedings that are administered through yourchild?s central line, bypassing the gastrointestinal tract. There are two types of parenteral nutrition:Total Parenteral Nutrition (TPN) or Partial Parenteral Nutrition (PPN).
Problems with Skin and Hair
Dry, flakyskin is common with chemotherapy. Mildsoap, skin moisturizers, lip balm and sunscreen are a must for good skincare. Skin cracks and fissures need tobe avoided, as they are potential places of entry for infection.
Special attention to diaper skin area is necessary for parents with infants and toddlers. The medications, in combination with the high amounts of IV fluids, make it nearly impossible to avoid diaper rash burns on the skin unless you are well-prepared to aggressively use preventative measures. Heavy barrier creams are needed as are more frequent diaper changes due to the extra fluids. Prevention goes a long way toward avoiding a rash and subsequent increased risk for infection.
Your child?shair follicles will be damaged by the chemo. This includes scalp hair, eyelashes, and eyebrows, as well as axillary(armpit) and pubic hair for teens. Hairloss or ?alopecia? can occurgradually over weeks or months or it may happen suddenly. It is important that you explain to yourchild BEFORE hair loss begins, that the hair will come out, that it won?t hurt,and that it will grow back. If yourchild would like a wig, it should be selected as early as possible, formatching purposes. Some parents andchildren opt to cut the hair or shave it, so the loss doesn?t seem asdramatic. Regardless, when the strandsstart to fall, so may the tears--yours and your child?s.
Althoughinitially upsetting, hair all over the pillowcase, on the couch, and attachedto the clothes eventually becomes an annoyance. Having a handy lint remover is helpful. Scarves, hats, and sunscreen should be used to protect the scalp.
Having a childgoing bald really brings home the reality that your child has cancer; there?sno denying it anymore. At first you andyour balding child may feel uncomfortable in public. But in time, your child will transition toacceptance and you to a feeling of parental pride in your child?s strengthduring cancer treatment. It is notuncommon to see bald fathers in the cancer clinic, who have decided to keeptheir heads shaved during their children?s cancer treatment, to say to thechild and to the world --bald truly is beautiful!
Bone Marrow Suppression
Chemotherapycan suppress the bone marrow?s ability to produce blood cells. This will affect your child in differentways.
Your child?swhite blood cell level may decline. Since white blood cells are needed to fight infection, this decline canput your child at high risk for potentially serious infections. A ?colony stimulating factor? medicationinjected subcutaneously (i.e., by shots) may be prescribed in order tostimulate the bone marrow into white blood cell production. When the whiteblood cells that fight bacteria, the ?neutrophils,? get dangerously low, it iscalled ?neutropenia?. There is a lot of information aboutneutropenia and precautions that need to be followed during this condition. Ifyour child is neutropenic and develops a temperature of 100.4 or any worrisomesymptoms, the oncologist should be called immediately. Depending on your child?s white blood celllevel, hospital admission for observation and IV antibiotics is common. (See?SurvivingNeutropenia.?)
In order toprevent a serious life-threatening infection called ?pneumocystis carinii?pneumonia (PCP), various antibiotics are prescribed as a precautionary measure-- trimethroprim-sulfamethoxazole (Bactrim), dapsone, and/or pentamidine. (See?Surviving Neutropenia.?)
Chemotherapycan also suppress your child?s red blood cells and hemoglobin, causing?anemia.? With anemia your child mayseem pale, tired, irritable, have a shortened attention span and can getdizzy. When the hemoglobin level dropsbelow a certain number (typically below 8), or there are worrisome symptomssuch as mentioned above, your child will likely receive a transfusion of packedred blood cells at a dose of 10 milliliters per kilogram. (See?Blood Transfusions.?)
Platelets,which are needed for clot formation and bleeding prevention, are also affectedby chemotherapy. A drop in platelets toless than 100,000mm3 (also referred to as platelets of 100,000, 100K, or just100) is called ?thrombocytopenia.? Ifyour child?s platelets are low and you notice any signs ofbleeding--nosebleeds, ?petechiae? (spatters of pinpoint, flat, red spots onyour child?s skin caused by broken capillary blood vessels), bruising on yourchild?s extremities, blood in stools or urine (some bloody stools are actuallyblack), bleeding from gums, or bleeding from intravenous access sites- you needto contact your child?s health care team immediately.
When yourchild is thrombocytopenic, there are bleeding precautions that need to befollowed. These include having yourchild avoid contact sports like soccer, bicycling and the trampoline and havingthem always use safety equipment like helmets, side-rails, car seats. Constipation needs to be avoided so stoolsofteners are often recommended. Emeryboards should be used to keep fingernails and toenails trim and smooth; nailclippers and scissors should be avoided. In order to prevent oral trauma, extra soft toothbrushes or toothsponges are preferred. For theadolescent patient who insists on shaving, electric razors are safer than arazor blade.
Duringchemotherapy and thrombocytopenia, children should not have rectaltemperatures, suppositories or enemas due to the risk of injury, infection andbleeding. They should not receivenon-steroidal anti-inflammatory (i.e. ibuprofen) or aspirin-containingmedications (e.g., Pepto-Bismol) due to bleeding precautions and the potentialfor Reye?s syndrome.
If yourchild?s platelets are substantially low, invasive procedures (i.e., surgery,bone marrow biopsy, urinary catheterization) may be delayed or performed withgreat caution.
Platelettransfusions are usually administered when the platelet level is significantlylow (<20,000/mm3,or platelets of 20,000, 20K, or just 20), your child is experiencing bleedingsymptoms, or in preparation for surgery, a procedure or a platelet-depletingmedication administration. (See ?BloodTransfusions.?)
Delayed Side Effects
Chemotherapy canalso affect your child?s organs and body systems (i.e. heart, kidneys, liver,hearing, future reproductive function). Your child will be continuously monitored for these effects on anindividual basis, throughout his or her NB treatment and thereafter. See ?Livingwith Long-term Survivorship Issues.?
Chemotherapyis an important aspect of the current treatment regimen for many children withNB. We parents should have basicinformation about each chemotherapeutic agent, their potential side effects,and the corresponding medication that our children can receive to combat theseside effects. We need to know the doseof any such medication, how to give it, and any special instructions.
Make sure thatyou completely understand when to notify your child?s oncology health care teamduring chemotherapy, know the best manner to communicate with them at any hourof the day or night, and have all relevant phone numbers, pagers, e-mailaddresses, and emergency services.
Before long,your child?s first round of chemo will be completed. With the knowledge and experience gained, asa family you will feel more ready to begin the second round, and will quicklybecome ?pros.? Having a child who is receiving chemo is certainly a challenge,but together as a family you will conquer each hurdle so that the medicationscan rid your child of cancer.
Bryant,R. (2003). Managing Side Effects of Childhood CancerTreatment. Journal of
Pediatric Nursing, 18: 113- 125.
CureSearch. Commonside effects of chemotherapy.
NationalCancer Institute. Young People with Cancer: A Handbook for Parents.
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Download printer-friendly version: 302 Getting through Chemotherapy