Managing Symptoms at Home

Debra LaFrankie RN, OCNProgram Nurse

Center for Neuro-oncologyDana-Farber Cancer Institute

Patients with Brain Tumors may experience a variety of

symptoms at home.

The goal of this presentation will be to review the most common,

and to guide the caregiver in home management.

Appetite Changes

• Decreased appetite is usually of concern• Smells may affect desire to eat, consider serving

cold foods. Reduce cooking odors as possible• Snack foods or small frequent meals may

stimulate the appetite• Use distraction (watching t.v., talk, invite

company)• May consider an appetite enhancer (Marinol,

Megace, etc.).

Weight Loss

Likely caused by the body’s changes in absorption.Fat Intolerance (low belly pain, gas, bloating,

diarrhea): may note an oily slick in the water after a BM – This calls for a low fat diet.

Lactose Intolerance (bloating, painful gas, diarrhea, cramps): Eliminate dairy products. Substitute soy or rice based products. Lact-Aid can help.

Malabsorption (cramps and diarrhea soon after eating): Talk with your Doctor or Nutritionist.

Muscle Wasting

• May occur when the body uses its own muscle for protein.

• Increase protein in diet: eggs, meat, soy, beans, rice, macaroni and cheese, etc.

• Instant breakfast mixes work well, and are less expensive.

• Non-fat dry mild powder can be added to scrambled eggs, baked goods, etc.

• Nutritional bars or supplements may help.

Low Blood Counts: May result from chemotherapy

• Low Platelet Count: Platelets are particles in the blood that

help to form clots so we don’t bleed to death if we are injured.

A low platelet count means that you are vulnerable to excess bleeding if you are bruised or cut

What to do:

• Keep the living area safe to prevent falls and injuries (install handrails for tub, remove throw rugs, etc.)

• Check all bruises, apply ice and direct pressure if necessary.

• Check mouth, skin, and whites of eyes for signs of bleeding

• Shave with electric razor• Observe for blood in urine or stool (may appear as

black/tarry stool).• Clean mouth/teeth with foam toothette or gauze (not a

toothbrush)

• Check menstrual flow (monthly period). Notify your doctor if unusually heavy.

• Avoid injections into the muscle.• Apply pressure for 15 full minutes if skin breaks

or bruising.• Check daily for spontaneous bruising, especially

legs and feet.• Use stool softeners to avoid straining for bowel

movements.• Report immediately any change in mental status

(sleepiness, speech or coordination problems, severe headaches, etc.)

• Avoid aspirin or ibuprofen products.

Low Blood Counts:

Low White Blood Cell Count:

• May increase risk of infection.

• Good handwashing is the best “first line” defense.

• Call your doctor is Temp >100.5, or sign of infection (cough, discomfort or frequency of urination, etc.)

Nausea: Feeling sick to your stomach; can be caused by medication and/or

radiation.What to do:• Eat bland food such as dry toast or crackers.• Eat small, frequent meals and snack at bedtime.• Eat only foods you like that smell pleasant.• Eat food cold or at room temperature so it has less smell

/taste.• Sip liquids and eat food slowly.• Report nausea to MD and take medication as

prescribed.• Rest for at least one hour after each meal.• Relax, take deep breaths, distract with music, t.v., etc.• Don’t force foods or liquids while nauseated.

Vomiting: Throwing up; can be caused by medication and/or radiation.

What to Do:• Take liquids in the form of ice chips or frozen

juice chips that can be munched slowly.• If in bed, sit upright or lie on your side to vomit to

avoid inhalation.• Resume foods gradually: start with clear liquids,

crackers, dry toast, ginger ale, jello, etc. Avoid fats.

• Request medication in suppository form.• Clean out mouth soon after vomiting.

Call the Doctor:

• If you think some vomited material was inhaled.• If a person vomits more than three times an

hour, or for three hours.

• If there is blood or coffee grounds in vomit.• If the person can’t drink more than 4 cups of

fluid in a day or hasn’t eaten food for two days.• If the person can’t take their medicine.• If the person feels very weak/dizzy.

Fever: A body temperature of more than 100.5 degrees F orally, that lasts

for 1 or more days.

Signs/Symptoms:• Shaking chills, feeling cold.• Increased skin temperatures.• Complains of feeling warm.• Skin rash or reddening.• Feeling tired, very inactive.• Headache or body aches.• Confusion or delirium.

What to Do:

• Cover with a blanket if chilly.• Cover only with a sheet if hot.• Drink lots of liquids (juices, soda, popsicle, soups, etc.)• Rest• Take acetaminophen or other medicine recommended

by your MD for fever.• Apply cool compress to head and back of neck if hot.• Take and record temperature every 4 hours (do not take

for 1 minute after food/drink).• Do NOT use ice baths or alcohol rubs

Call the Doctor:

• When a fever is “new” and won’t come down or stay down.

• If a fever lasts for more than 24 hours or won’t stay down with treatment.

• If the person is delirious.

Dehydration: Not enough water/fluids in the body.

What to Do:• Drink fluids (soda, water, ice chips, juices,

Popsicles, sports drinks, Jello, soups, etc.• Fill a small cooler with ice and keep drinks close

at hand.• Apply lotion to skin frequently.• Encourage foods, such as fruit, that contain

fluids.• Keep the mouth clean.• Attempt to get rid of the cause of dehydration.

Dehydration:

Signs/Symptoms:• Thirst• Dry mouth, unable to swallow dry

foods, difficulty talking, swollen, cracked, dry tongue

• Dizziness, weakness, fatigue• Fever• Dry skin that “tents” when

pinched.• Weight loss• Sunken eyeballs• No urine/small amounts of dark

urine• Confusion/delirium/hallucinations

Call the Doctor:• If vomiting, diarrhea or fever lasts

for more than 24 hours.• If urine is either very dark in color

and of small amounts, or if there is no urine for 12 hours.

• If dizzy or faint when standing up.• If there is confusion, delirium or

hallucinations.• If the fever won’t come down, and

stays over 101.

Sleep Problems: A change in the usual sleeping habits; trouble getting to sleep

or staying asleep.What to Do:• Allow the person to sleep as much as they feel like, but when awake,

encourage exercise at least once daily.• Drink warm, non-caffeine drinks before sleep; avoid caffeine (coffee, cola,

tea, chocolate) late in the day.• Make sure that the environment is quiet for sleep.• Take sleeping medications as directed at a regular time each night.• Have someone rub the person’s back or feet.• Make sure bedding is clean and wrinkle-free.• Encourage a light meal before bedtime.• Have them take a warm bath at bedtime.

Call the Doctor:• If pain is keeping the person awake.• If the person feels confused at night• If the person cannot sleep at all during the night.

Seizures: Uncontrolled movement of

muscles, also known as “convulsions” or “fits.” Caused by abnormal electrical discharges in the brain. They usually last less

than five minutes and are followed by a period of unconsciousness or

confusion.

Seizures:

Signs/Symptoms:• Eyes stare blankly or roll

back.• Body jerks and spasms,

especially arms and legs.

• May lose control of bowels and bladder.

• May ooze saliva & blood from the mouth.

Call the Doctor:• When the seizure is over

and the person is comfortable.

• Call 911 if this is the person’s first seizure, or if occurring repeatedly. Stay with the person.

Focal Seizure:

Fully conscious; no special actions needed.

Partial Complex Seizure:

Awake, perhaps in a vague state. May be partially aware of

surroundings. May be amnesic about the event.

Keep surroundings safe. Do not restrain.

Seizures: Grand Mal/Generalized

What to Do:• Stay calm and note the time

seizures start.• If the person falls to the floor, put

a cushion under their head.• Note what types of

movement/body parts are involved.

• Move objects out of the way; loosen clothing.

• As soon as the jerking stops, turn the person on their side so mouth secretions drain onto the ground.

• Reassure them that they are okay and tell them that they have had a seizure.

• Make them comfortable and let them sleep.

Do Not:• Leave the person during the

seizure, not even to call the doctor.

• Restrain their movement or forcibly turn the neck.

• Try to open their mouth or put anything in it, even if they are biting their tongue.

• Move the person unless they are near a dangerous object (glass, radiator, stairs, etc.).

• Put your hands/fingers in or near the mouth.

• Give them anything to eat/drink until they are fully awake.

Seizures: Commonly used Medications

• Phenytoin (Dilantin)• Carbamazepine (Tegretol)• Valproic acid (Depakene)• Levetiracetam (Keppra)• Gabapentin (Neurontin)• Lamotrigine (Lamictal)• Topiramate (Topamax)• Phenobarbital (Luminal/Solfoton)

*Common side effects include blurred vision, ataxia (loss of balance when standing/walking), lethargy, and nystagmus (jerking of the eyes horizontally).

*Call the Doctor if the patient develops a rash, or difficulty walking.

*The Doctor may prescribe lorazepam (Ativan) which may be used under the tongue, to help stop/limit seizure activity.

Seizures:

Driving:

In the initial period following diagnosis and before/after surgery, most patients will take anti-seizure medications.

Most states have mandatory driving restrictions. It is important for patients to check with their state’s DMV to understand the restrictions.

Driver Rehabilitation programs, which are not part of DMV, offer a closed course driving evaluation with a trained instructor, to assess reaction time, and other necessary driving skills.

Fatigue:

Feeling tired, usually unrelieved by sleep or rest.

It can be caused by the tumor, radiation therapy, medications,

anemia, or depression.

Fatigue:What to Do:• Believe them.• Plan rest periods to conserve energy

for important activities.• Evaluate and treat for depression if

necessary• Schedule necessary activities for high

energy times of day, and with rest in between.

• Get enough sleep/rest.• Exercise every day.

Do Not: • Force the person to do more than they

can manage.

Signs/Symptoms:• Person says that they have no energy.• Person sleeps more.• Seems sad or “blue”.• Wants to do less than usual.• Has less interest in personal

appearance and grooming.

Call the Doctor:• If they can’t get out of bed for 24

hours.• If confusion occurs.• If the fatigue continues to worsen.

Swelling: Edema; build up of fluid in the

tissues.What to Do:• When sitting in a chair, keep feet elevated.• Rest in bed with swollen part elevated above the

heart level.• Have them eat as well as they can, especially

foods high in protein.• Take medications as directed.• Ask the doctor if they should modify their diet.

Swelling:

Signs/Symptoms:• Feet/lower legs get larger

when sitting or walking.• Rings feel “too tight” on

fingers.• Hands feel tight when making

a fist.• Abdomen looks distended or

blown up.• Trouble breathing, especially

when lying down.

Call the Doctor:• If they can’t eat for a day or

more.• If they have not made any

urine, or very little urine for a day or more.

• If you press your fingers into the swollen area and the mark stays.

• If the swelling spreads up or legs.

• If belly appears puffy or blown up.

Sweating:

Heavy perspiration, sometimes occurring at night, and is not

brought on by external temperature changes.

Sweating:

What to Do:

• Take fever reducing medications (acetominophen) at bedtime.

• Change wet clothing as quickly as possible.

• Keep bed linens clean and dry.• Dress in two layers of light, cotton

clothing-the outer layer will draw wetness away from the skin.

• Bathe daily to avoid skin irritation.• Keep rooms at a comfortable

temperature.• Drink lots of liquids.

Call the Doctor:

• If the person has a fever greater than 100.5 for more than 24 hours.

• If they become dehydrated from frequent soaking sweats.

Signs/Symptoms:

• Feeling wet or damp during the night.

• Waking up to find sheets wet.• Fever, followed by heavy sweating

as the temperature falls.• Chills• Drenching sweats when there is

no sign of fever/infection.

Itching:Unpleasant sensation of the skin that causes a person to

want to scratch or rub the skin; often caused by radiation

treatment.

Itching:What to Do:• Use only mild soaps for washing.• Use skin creams with a water-

soluble base 2-3 times a day, especially after bathing (ie. Aquaphor, A& D, Eucerin, Radiacare).

• Add baking soda or bath oil to bath water.

• Use warm water instead of hot water for washing.

• Use baking soda instead of a deodorant.

• Apply cool, moist packs to the skin.

• Keep room cool/well ventilated.• Keep nails clean and cut short.• Try rubbing, pressure, vibration

instead of scratching.• Wear loose clothing made of soft

fabric.• Change bed linens daily.• Use mild laundry soaps; rinse

laundry well.• Drink plenty of fluids and rest• Take medication for itching as

ordered by your doctor.

Itching:Signs/Symptoms:• Dry, red, rough, flaky skin.• Rash or skin sores.• Yellow color to skin.• Scratch marks• Scratching without thinking about

it.Do Not:Use adhesive tape or bandagesUse scented or alcohol based skin

products.Use harsh soaps or detergentsDrink alcohol or caffeine

Call the Doctor:• If itching does not stop after two or

more days.• If skin appears yellowish or urine

turns the color of tea.• If the rash worsens after cream or

ointment is applied.• If pus pockets develop on the skin.• If they become anxious, restless,

or cannot sleep due to the itching.• If they develops “hives”*this may indicate a serious, allergic

reaction; call the doctor immediately.

Sore Mouth:

Can be caused by little cuts or ulcers in the mouth, as well as gum disease or an oral yeast

infection.

Sore Mouth:

What to Do:

• Check mouth often using a flashlight and padded tongue blade or spoon. If they have dentures, remove them.

• Use good mouth care 30 minutes after meals and every 4 hours while awake.

• Brush teeth using a soft bristled toothbrush (soak in hot water to soften)

• Rinse toothbrush well; store in cool, dry place.• Use non-abrasive toothpaste or baking soda solution.

Sore Mouth:

Rinse mouth frequently during the day (swish, gargle, and spit out) with one of the following:

• 1 tsp. Baking soda & 2 cups of water

• ½ tsp of salt, 1 tsp baking soda & 1 qt water.• Equal parts hydrogen peroxide and water. Use

right after mixing, hold in mouth x 1 ½ minutes, spit, and then rinse with plain water.

Sore Mouth:What to Do:• Keep lips moist with lip balm.• Have regular dental checkups.• Drink lots of fluids• Use numbing medication as

directed.• Modify diet: use chilled, soft,

bland foods & fluids, eat small, frequent meals of bland, non-spicy foods.

• Avoid: citrus fruits, carbonated drinks, hard or coarse food, alcohol and tobacco

Call the Doctor/Dentist:• If gums bleed • If redness or shininess in the

mouth lasts for more than 48 hours.

• When the person first notices any sore or cut in the mouth.

• If they are eating less.• If their temperature is above

normal.• If white patches appear on the

tongue or sides of the mouth.

Do Not:Use lemon/glycerin swabs

Dry Mouth: Not enough saliva in the mouth;

can be caused by mouth breathing, dehydration or the

side effect of some medication and radiation.

Dry Mouth:What to Do:• Drink plenty of fluids• Drink fluids with meals to moisten food and help swallowing.• Take high calorie diet supplements between meals.• Use ice chips, hard candies and sugarless gum to stimulate saliva

production.• Add liquids to solid foods (i.e. gravy, melted butter, yogurt, mayonnaise, etc)• Keep lips moist (if on oxygen, avoid petroleum jelly/Vaseline)• Use good mouth care.• Avoid spicy, hot, or acidic foods.• Avoid food that requires a lot of chewing (tough meats, raw vegetables,

chewy candy)• Use artificial saliva.

Dry Mouth:

Signs/Symptoms:• Dried, flaky, whitish-

colored saliva in and around the mouth.

• Thick, mucous-like saliva that stays attached to the lips when the person opens their mouth.

• Mouth is always open to breathe.

Call the Doctor:• If the mouth remains dry

for more than 3 days.• If dry, cracked lips or

sores develop.• If there is trouble

breathing.

Blood in Stool:

Can be caused by straining very hard, irritation in the bowel, ulcers,

hemorrhoids, sores in the anal area, low platelet count or possible

tumor.

Blood in Stool:

What to Do:• Assess the amount of

blood being passed.• Wash area well with

warm, soapy water, rinse well, pat dry.

• Sitting in a tub of warm water may help hemorrhoids.

Signs/Symptoms:• Blood on toilet paper.• Blood on underwear,

sheets, underpants.• Streaks of blood in

feces.• Bright red blood from

rectum.

Blood in Stool:

Do Not:• Strain to move bowels.• Try to push hemorrhoids

back in the rectum.• Use enemas, laxatives or

rectal suppositories.• Use a rectal

thermometer.

Call the Doctor:• Call 911 if severe

distress.• If you notice blood on

toilet paper two or more times.

• If you notice blood streaks in stool.

• If you notice bright red blood from the rectum.

• If you notice dark red or black, tarry stools.

Constipation:Infrequent or difficult passage of

feces or stool. This can cause pain/discomfort.

Can be caused by Temodar, lack of activity, poor food and fluid intake,

general weakness, pain medications, muscle relaxants and

voluntary holding of feces.

Constipation:

What to Do:• Increase high fiber foods

(bran, wheat germ, raw fruits/vegetables, juices, etc).

• Increase fluid intake. Fresh juices or warm/hot fluids in the morning are helpful.

• Use laxatives/stool softeners as directed.

Do Not:• Do not use extreme force

or straining to move bowels.

• Do not use over-the-counter laxatives unless approved by doctor.

• Do not eat foods that cause constipation: chocolate, cheese, eggs, bananas, rice and apples.

Constipation:

Signs/Symptoms:• Small, hard bowel movements.• Seepage of soft stool

resembling diarrhea.• Stomach ache/cramps.• Excess gas/belching.• Belly appears blown-up/puffy.• No regular bowel movement

within 3 days.• Nausea/vomiting.• Feeling of fullness/discomfort.

Call the Doctor:• If there has been no regular

BM within 3 days.• If you notice blood in or around

the anal area or stool.• If you cannot move your

bowels within 1 or 2 days of taking laxatives.

• If you have persistent cramps or vomiting.

Hiccoughs: occur when the diaphragm suddenly contracts

between normal breaths.

What to Do:• Breathe slowly and deeply into a paper bag for ten breaths at a time.• Drink water slowly• Hold a mouthful of sugar in the mouth and then swallow.

Do Not:• Ignore the hiccoughs• Force the person to eat; it may cause vomiting.

Call the Doctor:• if hiccoughs last for more than a day.• If they have difficulty breathing• If their stomach seems puffy or blown-up.

Shortness of Breath:

Difficulty breathing, not enough oxygen is delivered to the body, either lungs cannot breathe in enough air or they cannot get

enough oxygen to the bloodstream.

Shortness of Breath:What to Do:• Remain calm• Sit person upright in chair, or raise head

with pillows• Give medications prescribed for problem

breathing (inhalers, oxygen, etc.)• If in distress, check pulse and respiratory

rate, and temperature.• Instruct to inhale through nose, exhale

through pursed lips• If spitting up mucous, note amount, color

and if there is an odor (normal is clear or white and foamy).

Do Not:• Lie flat.

Signs/Symptoms:• Shortness of breath or trouble breathing• Chest pain• Breathing is fast.• Pulse rate increases• Skin looks pale or bluish• Skin feels cold and clammy• Nostrils flare when inhaling• May have wheezing

Call the Doctor:• Call 911 if severe distress• If difficulty breathing and chest pain• If thick green, yellow and/or bloody sputum• If skin pale/bluish or cold and clammy• If fever occurs• If nostrils flare during breathing, or if

wheezing.

Pain Management

The Patient’s report of pain is the most reliable information.

Assessing pain is the key to management:• 0-10 scale• How much relief did medication bring

(what is the number now?)• How long did relief last?

Pain Management

Routes of Administration of medication:

• Preferred pain medication administration is by mouth

• Injections

• Pain patch

• Sublingual (under the tongue)

Pain Management

• Keep expectations realistic (pain may be controlled, but not always eliminated).

Side Effects:Opiates (narcotics) may cause constipation,

or sedation.Stool softeners will help to reduce

constipation.

Headaches:

Headaches may have been the heralding symptom for a patient with a brain tumor.

Post-operative headache after surgery is common, but usually subside after a short time.

Notify the Doctor is the patient develops new headaches, as this may be a sign of increased intracranial pressure.

Sometimes, depression may bring on headaches.Rarely, may experience a constant low grade headache or

painful headaches.Pain medications or alternate therapies, such as

acupuncture may be helpful.

Focal Deficits:Focal deficits arise depending on the location of the brain that has been

damaged.

Common Focal Deficits:• Vision loss (may be partial) may result from changes in the eye,

occipital lobe and any connections between those areas. *An appointment should be made with an Ophthalmologist or

Optometrist.• Hearing loss• Motor difficulties• Speech impairment• Sensory impairment*Consultation with a Physical Therapist, Occupational Therapist, or

Speech Therapist may be helpful to reduce the risk of injury, and to promote optimal independent activity.

Thromboembolic Disease:Blood Clots

About 1/3 of patients with malignant gliomas develop clinically apparent thromboembolic disease during the course of their illness.

Patients at high risk are those with loss of mobility or who are confined to bed, someone with one-sided weakness, or when someone is on chemotherapy.

Most commonly, blood clots occur in the legs or in the arms. Rarely, clots may occur in the lungs.

Thromboembolic DiseaseSymptoms:• Tenderness or pain in the calf, behind the knee, or in the thigh.• Swelling in one leg or arm, particularly in the one that is weakest.• Pain in the leg when it is squeezed.• Pain in the leg when the foot is moved toward the face.• Blood clotting in the lung is characterized by difficulty breathing or chest

pain.The Doctor should notified immediately if a clot is suspected. An ultrasound or CT scan may be performed to diagnose the clot

Patients may be treated with anticoagulant therapy (heparin, warfarin). Blood levels may be monitored to make sure that the blood dose not lose its ability to clot, which may lead to hemorrhage.

Filters may be placed in the vein to reduce the risk of blood clots moving toward the lungs or brain.

Do not hesitate to contact your Doctor or Nurse if symptoms or

concerns arise.