Managing Symptoms at Home

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Managing Symptoms at Home

• Debra LaFrankie RN, OCN
• Program Nurse
• Center for Neuro-oncology
• Dana-Farber Cancer Institute

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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.
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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.).

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Weight Loss

• Likely caused by the bodys 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.

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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.

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Low Blood Counts May result from chemotherapy

• Low Platelet Count
• Platelets are particles in the blood that help
  to form clots so we dont 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

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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)

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• 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.

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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 gt100.5, or sign of
  infection (cough, discomfort or frequency of
  urination, etc.)

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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.
• Dont force foods or liquids while nauseated.

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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.

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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 cant drink more than 4 cups of
  fluid in a day or hasnt eaten food for two days.
• If the person cant take their medicine.
• If the person feels very weak/dizzy.

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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.

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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

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Call the Doctor

• When a fever is new and wont come down or stay
  down.
• If a fever lasts for more than 24 hours or wont
  stay down with treatment.
• If the person is delirious.

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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.

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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 wont come down, and stays over 101.

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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 persons 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.

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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.
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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 persons first seizure,
  or if occurring repeatedly. Stay with the person.

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Focal SeizureFully conscious no special
actions needed.
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Partial Complex SeizureAwake, perhaps in a
vague state. May be partially aware of
surroundings. May be amnesic about the event.
Keep surroundings safe. Do not restrain.
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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.

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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.

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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
  states 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.

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Fatigue Feeling tired, usually unrelieved by
sleep or rest. It can be caused by the tumor,
radiation therapy, medications, anemia, or
depression.
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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 cant get out of bed for 24 hours.
• If confusion occurs.
• If the fatigue continues to worsen.

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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.

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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 cant 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.

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Sweating Heavy perspiration, sometimes
occurring at night, and is not brought on by
external temperature changes.
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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.

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ItchingUnpleasant sensation of the skin that
causes a person to want to scratch or rub the
skin often caused by radiation treatment.
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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.

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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 bandages
• Use scented or alcohol based skin products.
• Use harsh soaps or detergents
• Drink 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.

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

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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.

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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

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Dry Mouth Not enough saliva in the mouth can
be caused by mouth breathing, dehydration or the
side effect of some medication and radiation.
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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.

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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.

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Blood in StoolCan be caused by straining very
hard, irritation in the bowel, ulcers,
hemorrhoids, sores in the anal area, low platelet
count or possible tumor.
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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.

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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.

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ConstipationInfrequent 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.
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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.

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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.

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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.

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Shortness of BreathDifficulty 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.
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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.

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Pain Management

• The Patients 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?

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Pain Management

• Routes of Administration of medication
• Preferred pain medication administration is by
  mouth
• Injections
• Pain patch
• Sublingual (under the tongue)

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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.
  

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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.

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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.

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Thromboembolic DiseaseBlood 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.

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Thromboembolic Disease

• Symptoms
• 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.

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Do not hesitate to contact your Doctor or Nurse
if symptoms or concerns arise.