Caregiver Guide | Managing the Physical Symptoms

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Managing the Physical Symptoms of a Brain Tumor & Treatment Side Effects

What should I be doing now? Should I give him a different diet? What can I control that would help him?

As you already know, brain tumors and their treatment cause both physical and cognitive changes in the patient. This section focuses on tips to help manage physical symptoms. You can read more about cognitive and psychological changes from a brain tumor and treatment here.

Management of these symptoms and side effects is crucial to a patient’s well-being. Their occurrence and severity vary depending on the person, the type and size of the tumor, and the treatment.

The good news is that you can help. Providing support and relief to the patient leads to a better quality of life. Knowing what to expect will empower you to better help the patient manage the side effects and symptoms associated with his or her brain tumor.

Common physical brain tumor symptoms and management

Fatigue

Fatigue is one of the most common side effects of brain tumors and their treatments, and may be felt long after treatment such as chemotherapy and radiation are complete.

The deep fatigue a patient may experience includes:

  • Profound lack of energy
  • Body weakness/heaviness of limbs
  • Inability to concentrate
  • Sleeplessness

What you can do:

  • View the fatigue like any other symptom of the brain tumor and treatment, such as nausea, headaches, and pain. It should not be dismissed as simple tiredness.
  • Note the symptoms of fatigue in your log and discuss them with the patient’s doctor. There may be treatable causes of the fatigue, such as anemia and infection.
  • Work with your doctor and other professionals, such as occupational therapists, to help the patient learn energy-conservation strategies for everyday tasks.
  • Help the patient, or get help yourself, in preparing nutritious, energy-rich meals. Small, frequent meals that combine complex carbohydrates with vegetables, dairy and protein will help keep energy stable.
  • Studies have shown that moderate exercise can help improve the patient’s energy level as well as the ability to sleep more soundly at night.i Gentle yoga routines have also been shown to both improve symptoms of fatigue as well as stress.ii
  • Facilitate short naps during the day, preferably in a comfortable chair instead of in bed.

Read more about fatigue as a brain tumor symptom.

Headaches

Approximately 50 percent of brain tumor patients experience headaches related to their tumor. Headaches occur when the tumor or tumor-related fluid buildup puts pressure on pain-sensitive blood vessels and nerves around the brain. The patient may experience steady pain that hurts upon awakening and then gets better, or persistent headaches that do not respond to typical headache remedies.

Common features of headaches in patients with brain tumors:

  • Steady pain that is worse upon waking in the morning and gets better within a few hours
  • May be accompanied by vomiting
  • May worsen with cough, exercise or a change in body position

Below are some suggestions to help manage headache pain:

  • Treat with the medication prescribed by the doctor
  • Notify the doctor right away if the medication stops working or becomes less effective
  • Keep a “headache journal.” It may be helpful for the doctor to have a record of the headaches

For additional information about headaches, visit http://www.abta.org/brain-tumor-information/symptoms/headaches.

Seizures

About 40 to 60 percent of brain tumor patients will experience a seizure at least once during their illness. Sometimes, the first and only seizure is the first clue that the patient has a brain tumor. Others may experience seizures during surgery or while undergoing treatment.

A seizure is a short-term period of abnormal electrical activity in the brain. A generalized tonic-clonic seizure is marked by a sudden onset – no warning of the seizure – and the patient presents with a loss of consciousness accompanied by twitching and relaxing muscle contractions. Other seizures manifest without the patient exhibiting much movement. Instead, the patient may stare off into space or be unable to talk. Although watching a patient experience a seizure can be frightening, most pass quickly and are not necessarily a medical emergency.

Tips for managing a generalized tonic-clonic seizure:

  • Don’t panic; most seizures end on their own and last 2-3 minutes
  • Make sure the patient is breathing
  • Clear the area of sharp objects
  • Remove the patient’s glasses
  • Protect the head from being bumped
  • Don’t put anything in the patient’s mouth
  • Don’t attempt to restrain the legs

After a seizure,

  • Try to lay the patient on his or her side, keeping the airway open
  • The patient may be confused. Tell the patient your name, where you are, and what happened.
  • Encourage the patient to rest.
  • Record the seizure in your log of symptoms

Call 911 or go to the emergency room if:

  • The patient stops breathing
  • The seizure lasts for more than 5 minutes
  • The patient is injured during the seizure
  • The patient is pregnant or has diabetes
  • The seizure occurs in water
  • A second seizure immediately follows

Seizures can often be managed by medication, and a common reason that seizures recur is that a person is not taking their medication. Like nausea, seizures can be triggered. You may notice a particular occurrence that trigger’s a patient’s seizure, such as flashing lights, a lack of sleep, certain sounds, or overstimulation.

In addition, because seizures may occur at any time, it is important to:

  • Limit or stop the patient from driving. If a person has a seizure while driving, he could greatly injure himself and others.
  • Take care when leaving the brain tumor patient in a water situation, particularly a pool or bath. A patient who experiences a seizure in/near water has a chance of drowning.

Find more information on seizures in brain tumor patients and how to manage a seizure, or download the ABTA’s free seizure first aid sheet here.

Managing Nausea and Vomiting

Nausea and vomiting can be a symptom of the tumor itself, or they can be side effects of treatment such as medication, chemotherapy and radiation treatment.

Managing nausea and vomiting can be difficult because although the stimulation can be physical, nausea can also be triggered by psychological factors, including thoughts of vomiting and visual or olfactory stimuli.

As with other symptoms and side effects, record incidents of nausea and vomiting. Medications may be available to relieve symptoms.

  • The patient’s doctor may prescribe anti-nausea drugs, also called anti-emetics, such as ondansetron (Zofran), aprepitant (Emend), dexamethasone (Decadron) or lorazepam (Ativan).
  • Help the patient pay attention to what and when he or she eats, to see whether those factors have any effect on the nausea. Strongly flavored foods may be a trigger, and tastes may change during treatment.
  • During bouts of nausea, distract the patient with music, television or other activities you enjoy together.iii
  • Find loose-fitting/comfortable clothing for the patient.
After vomiting:
  • Have the patient rinse out his/her mouth.
  • Ice chips and/or small sips of a cool fluid can help settle the stomach.
  • Crackers or toast are mild foods that can help ease hunger without causing stomach upset.
  • Relaxation also helps; as with preventing vomiting, relaxing together with the patient can soothe the stomach.
Sensory (touch) and motor (movement control) loss

Depending on the size and location of the tumor, surgery, and type of treatments and medications, the patient may experience problems with motor control. Fine motor and sensory issues may contribute to difficulty with activities like eating and writing. A loss of gross motor control or weakness can make it hard for patients to control their arms, legs and hands, making walking and moving difficult.

Symptoms can include:

  • Muscle weakness in the whole body, certain parts of the body, or one side of the body
  • Awkward or stiff movements in the arms or legs
  • Asymmetrical or lopsided facial expressions
  • Tingling or numbness in body/areas of the body

Most of these issues do not require urgent care, however, you should:

  • Record symptoms and their severity in your log of symptoms
  • Inform the patient’s physician about recent changes
  • Speak with a nurse or doctor about the possibilities of physical rehabilitation and therapy service

The loss of muscle control can increase the possibility of the patient falling down. Ways to help prevent falls include:

  • Avoid slippery surfaces
  • Ensure shoes fit, are comfortable and have non-slip bottoms
  • Talk to the patient’s physical therapist and/or physician about ways to help the patient move safely
  • Employ a walking aid, such as a walker or a cane. A doctor or physical therapist can assess the patient’s needs and recommend the most appropriate equipment.
  • Allow the person to focus on walking with minimal distraction.
  • Read more about safety at home for the brain tumor patient.

When to call 911:

  • When you suspect a broken bone after a fall. One way to tell is to compare the injured part of the body with the uninjured part. Does it look and feel the same? Move in the same way?
  • When there is a sudden onset of symptoms such as:
    • Weakness in the face, arm or leg, especially on one side of the body
    • Confusion, or trouble speaking and understanding, or swallowing
    • Trouble walking, dizziness, difficulty with balance and coordination

    These can be signs of a stroke and need immediate attention. Learn more about the signs of a stroke.

Deep venous thrombosis (DVT) and pulmonary embolisms

Deep venous thrombosis (DVT) describes the condition where a blood clot forms in the body – usually in the lower extremities, but sometimes in the arms as well. In about 30 percent of patients, the clot can move towards the pulmonary vein (a pulmonary embolism, or PE).iv DVT and PE can occur in up to 19 percent of brain tumor patients.v DVT and PE are both highly treatable with a timely diagnosis.vi

Signs to look for:

  • Swelling, tenderness and pain in the leg
  • One leg appears larger than the other one
  • Skin on the leg turns red

How to respond:

  • This must be treated immediately. Call the patient’s physician. If the physician is not available go to the emergency room.
  • If you are working with emergency room doctors who are not the patient’s primary physicians, tell them about the patient’s condition and any recent surgeries and medications. Because DVT and PE are somewhat common in patients with brain tumors, your information will help ensure proper diagnosis and treatment.
Hearing and vision loss

Both hearing and vision loss can occur due to a brain tumor and treatment.

Hearing loss:

  • Is characterized by a ringing in the hears, decreased hearing, and/or dizziness
  • Often occurs on only one side
  • Can occur during treatment or as a late-onset effect after treatment is complete
  • Is rarely an emergency, but be sure to alert the patient’s physician to plan for auditory testing and treatment options

Vision loss:

    Sudden blindness can indicate pressure from the tumor on the brain. Call 911 or go to the emergency room.

  • May include the inability to recognize objects when looking at them, hallucinations, and/or issues such as double vision, loss of peripheral vision, or blind spots
  • Is rarely an emergency, but should be noted (Is the loss in both eyes or one? What does the patient see/not see?)
  • Should be considered an emergency if it occurs suddenly. Sudden blindness can indicate pressure from the tumor on the brain. Call 911 or go to the emergency room.
Pain Management

Pain is a symptom of brain tumors and of treatment, and managing that pain is essential to the patient’s overall quality of life. Pain affects sleeping, eating, the ability to perform daily activities, and even the patient’s overall outlook.

Pain may be caused by the tumor itself (e.g., headaches) or by treatments. Chemotherapy, for example, can cause mouth sores or burning or tingling sensations. A blood clot (see above) can cause leg pain.

You can help medical professionals diagnose the causes of pain and find treatments by working with the patient to analyze the pain itself. You can try to determine:

  • When and where the pain occurs. Does the pain occur in the morning? Evening? Does it lessen or intensify during the day? Is it in one or more parts of the body? Does the pain move?
  • What the pain feels like. Descriptive words include: dull, sharp, burning, tingling, pinching and stabling.
  • Pain intensity. You can help the patient measure his or her pain on a scale of 0 to 10, with 10 equaling severe or excruciating pain, and 0 equaling no pain.
  • Whether anything makes the pain worse or relieves the pain. Do certain positions help or hurt the pain? What about walking?
  • How much pain relief the patient is getting from medication. Does the medication provide enough relief? Does it wear off before it’s time for the next dose?

A number of drugs may be used to manage pain, including over-the-counter pain relievers such as aspirin, acetaminophen (e.g. Tylenol) and ibuprofen (e.g. Advil). In addition, a member of the patient’s health care team may prescribe opioids, such as morphine, oxycodone or others to relieve severe pain. Other medicines to treat depression or seizures may also be prescribed.

Stronger medications, such as opioids, may have side effects ranging from dizziness and sleepiness to constipation and nausea. A log of pain symptoms and side effects will make it easier for you to remember the details of the side effects, which should be discussed with the patient’s doctor. Sometimes symptoms will subside with time, sometimes they can indicate a health issues that needs to be addressed, and in other cases side effects can be managed with additional treatment.

My husband won’t take his pain medication until the pain is excruciating. I’m pretty sure if he took it regularly the pain wouldn’t get so bad, but he won’t listen.

There are several barriers to pain management, including:

  • The patient’s or the caregiver’s attitude that the patient should “tough it out”
  • Reluctance of patients, caregivers, or even physicians to talk about pain
  • False beliefs about the medication (e.g. “If I take it now, it won’t work when I really need it later.”)
  • Avoidance of the side effects of medication
  • Fear of addiction or overdose

Talk to the patient and the patient’s healthcare team about your concerns and fears. Once both of you understand how the medication works, how it affects the patient and how prescriptions and dosages can be changed or modified, you will be well on your way to managing pain more effectively.

Pain and side effects are signals that the body needs help. While side effects may be an unavoidable consequence of a brain tumor and treatment, finding solutions to managing them can improve your and the patient’s physical and emotional health as well as your quality of life.

Additional side effects of brain tumors can include emotional and cognitive changes. Learn more about how to manage the psychological side effects of brain tumors.

 

 

iCramp F, Byron-Daniel J. Exercise for the management of cancer-related fatigue in adults. Cochrane Database of Systematic Reviews;2012:11;Abstract. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD006145.pub3/abstract. Accessed June 26, 2014.
iiBower J, Woolery A, Sternlieb B, et al. Cancer Control: Journal of the Moffitt Cancer Center;2005. http://moffitt.org/research--clinical-trials/cancer-control-journal/integrative-medicine. Accessed June 26, 2014.
iiiNicholas MK. Managing side effects: focus on chemotherapy. Presentation for the American Brain Tumor Association Patient and Family Conference. 2012.
ivOzaki A, Bartholomew J. Venous Thromboembolism: Deep Venous Thrombosis & Pulmonary Embolism. Cleveland Clinic Center for Continuing Education website. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/cardiology/venous-thromboembolism/. Published December 12, 2012. Accessed June 26, 2014.
vLevin JM, Schiff D, Loeffler JS, et al. Complications of therapy for venous thromboembolic disease in patients with brain tumors. Neurology;1993;43(6):1111-4.
viOzaki A, Bartholomew J. Venous Thromboembolism: Deep Venous Thrombosis & Pulmonary Embolism. Cleveland Clinic Center for Continuing Education website. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/cardiology/venous-thromboembolism/. Published December 12, 2012. Accessed June 26, 2014.