Treatments and Side Effects

No two brain tumors are exactly alike, so your treatment plan will depend on a wide range of factors, from the tumor’s type, size, and location to your age and overall health. Your treatment options may also change over time.

In this section, you’ll find details about treatment options and common side effects of treatments. The ABTA CareLine is also a great source of general information about brain tumors, treatment options, and social support. 

Treatments

The steroids given to brain tumor patients are corticosteroids, hormones produced by the adrenal glands. They are not the same as anabolic steroids used by athletes to build muscle.

Purpose of steroids

Steroids are often used to reduce the buildup of fluids around a tumor (called edema), which is sometimes caused by the brain tumor or other treatments. This fluid accumulation causes swelling and pressure inside the skull, leading to headaches, nausea, vomiting, or other symptoms. Steroids can temporarily relieve brain tumor symptoms, improve neurological symptoms, and promote a feeling of well-being.

Steroids may be prescribed before, during, or after surgery. Steroids may also be used to treat edema caused by radiation therapy.

Although they can be given through an intravenous (IV) line or by injection into a muscle (IM), steroids are most commonly administered by mouth in a pill form. Common steroids used to treat brain tumor edema include dexamethasone, hydrocortisone, and prednisone. Your doctor may increase or decrease the dose, depending on how the steroids are affecting you. When you no longer need steroids, your doctor will give you instructions on how to slowly reduce the dose.

Potential side effects of steroids

The most common side effects of steroids are:

  • Increased appetite
  • Weight gain
  • Increased blood sugar levels (especially in patients with diabetes)
  • Gastrointestinal problems (e.g., stomach ulcers)
  • Thinning of the skin
  • Muscle weakness in the legs, arms, shoulders, chest and neck
  • “Masking” or hiding a fever
  • Infections
  • Mood swings (e.g., irritability or mania)
  • Insomnia
  • Pneumonia

Steroids can also interact with some seizure medications, either raising or lowering the seizure medicine levels in the blood, which can change effectiveness. Your doctor can explain other side effects that may occur with steroid use.

If you are using steroids, be sure to contact your doctor if you:

  • Have a fever – even if no other symptoms are present
  • Have blood in your bowel movements
  • Have stomach pain
  • Gain more than 5 pounds in one week
  • Develop a rash or sores in the mouth
  • Are very thirsty and/or urinating a lot
  • Stumble or fall
  • Have chest pains or difficulty breathing, which may signal a medical emergency

Brochure | Steroids        Spanish Brochure | Esteroides

Surgery is usually the first step in treating most brain tumors. It’s often the preferred treatment when a tumor can be removed with minimal, if any, risk of neurological damage.

Purpose of surgery

Your doctor may recommend surgery to:

  • Take a tumor sample (biopsy) to establish an accurate diagnosis.
  • Remove as much tumor as possible, either to relieve symptoms caused by the tumor itself or to reduce the amount of tumor left to be treated with radiation or chemotherapy.
  • Remove part of the tumor to relieve pressure in the skull (intracranial pressure) and related symptoms.
  • Create direct access to the tumor for delivery of therapies to malignant tumors.
  • Relieve seizures (due to a brain tumor) that are hard to manage.

Types of surgery and surgical procedures

Note: During most of these surgical procedures, the patient is asleep or heavily sedated; however, sometimes awake surgery is also an option. The brain does not “feel” pain, and all of the surrounding tissues (for example, the scalp) are numbed prior to surgery. Many surgeries are performed with the help of computer image guidance systems (also called stereotactic brain surgery) to help accurately locate the tumor.

  • Awake Craniotomy / Brain Mapping: Tumor removal while the patient is awake. Brain tissue near the tumor is tested during surgery for its role in important brain functions, such as movement and speech. This helps the surgeon to remove tumor tissue while protecting these functions.
  • Biopsy: Removing a sample of tumor tissue.
    • Needle biopsy: Using a hollow needle to collect a tumor sample through a small hole (called a burr hole) drilled into the skull.
    • Stereotactic biopsy: Using computer navigation systems to accurately locate a tumor for biopsy.
    • Open biopsy: Collecting a tumor sample during a craniotomy.
  • Craniectomy: Similar to a craniotomy, except that the portion of the skull that was removed to allow access to the brain is not replaced after surgery.
  • Craniotomy: Removing a portion of the skull, enabling the neurosurgeon to find the tumor and remove as much of it as possible. The piece of skull is replaced after surgery.
  • Complete resection: Removing the whole tumor. Also called gross total resection.
  • Debulking: Reducing the tumor’s size.
  • Embolization: Stopping blood flow to a tumor before removal. This helps avoid bleeding in tumors with a large number of blood vessels.
  • Endoscopic Surgery: Uses a small, specialized camera that is inserted into the brain to assist with tumor removal.
  • Laser Interstitial Thermal Therapy (LITT) or Laser Ablation: A minimally invasive method to destroy tumor tissue with heat.
  • Microsurgery: Using a microscope and tiny surgical tools to perform delicate operations. This is commonly used on tumors that are close to critical structures such as blood vessels or nerves.
  • Minimally Invasive Surgery: Entering the brain through a small incision and using the body’s naturally occurring spaces to reach and remove a tumor.
  • Ommaya reservoir: Inserting a small container under the scalp that is attached to a tube. This container can be used to deliver chemotherapy or remove fluid for testing.
  • Partial resection: Removing only part of the tumor (due to risk of neurological damage). Also called subtotal resection.
  • Resection: Surgical removal of a tumor.
  • Shunt: Inserting a drainage system to move excess cerebrospinal fluid (CSF) from the brain to another part of the body.
  • Skull base surgery: A minimally invasive technique used to remove a tumor located on the underside of the brain.
  • Transphenoidal surgery (aka endonasal endoscopic surgery):An approach where surgical instruments, guided by an endoscope (camera), are inserted through the nose. This technique is often used to operate on pituitary adenomas and craniopharyngiomas. 

There are also several tools and technologies that help doctors see the extent of tumor removal during surgery as well as where the tumor stops and healthy tissue begins. These include intraoperative ultrasound, intraoperative MRI, and 5-aminolevulinic acid (5-ALA). Additionally, surgeons may implant treatments such as chemotherapy wafers or targeted tile brachytherapy during a craniotomy.

Possible side effects of surgery

Every surgery carries some risks. Specific risks associated with brain and spine tumor surgery include:

  • Infection
  • Blood clots
  • Bleeding
  • Changes in blood pressure
  • Seizures
  • Weakness
  • Balance/coordination difficulties
  • Cognitive problems such as memory loss
  • Spinal fluid leakage
  • Meningitis
  • Stroke
  • Swelling (edema)
  • Excess fluid in the brain (hydrocephalus)
  • Coma
  • Death

Some tumors are not able to be safely removed with surgery. This is often the case when a tumor is located in an “eloquent” area, or near a part of the brain the controls important functions such as movement, speech or respiration (breathing). These are sometimes called “inoperable” tumors. These tumors are often treated in other ways, such as radiation therapy and/or chemotherapy.

Your healthcare team can help you balance the risks of surgery against its potential benefits.

Brochure | Surgery        Spanish Brochure | Cirugía

Chemotherapy is drug therapy for cancer. It works by killing the cancer cells, stopping them from spreading, or slowing their growth. Chemotherapy is typically used to treat malignant or higher grade tumors, but it may also be used to treat lower grade and non-malignant tumors.

Common chemotherapy drugs used to treat brain tumors include temozolomide, carboplatin, carmustine, vincristine, lomustine (CCNU), procarbazine and cisplatin.

Purpose of chemotherapy

The goals of chemotherapy are to:

  • Stop tumor growth by making the tumor cells unable to copy themselves.
  • Artificially start the normal process of cell death (apoptosis) in the tumor.

How chemotherapy works

Chemotherapy drugs are delivered to tumor cells in one of two ways:

  • Systemic delivery: Systemic drugs travel through the body in the bloodstream, cross the blood-brain barrier, and enter the tumor cells. These drugs are either taken by mouth or injected into an artery, vein, muscle, or the skin.
  • Local delivery: Some drugs can be placed closer to the tumor, or within the areas of tumor growth. The goals of local delivery are to avoid delivering drugs throughout the body and to increase the concentration of the drug at the tumor site. Examples of local delivery include Ommaya reservoir, convection enhanced delivery, and implanted chemotherapy wafers.

Potential side effects of chemotherapy

Chemotherapy drugs have the greatest effect on cells that reproduce rapidly, like those in a tumor. However, the drugs cannot always tell the difference between tumor cells and healthy cells, which can cause side effects. Some of the more common side effects of chemotherapy are:

  • Nausea and/or vomiting
  • Constipation
  • Diarrhea
  • Fatigue
  • Lowered white/red blood cell and/or platelet counts
  • Weakness
  • Balance or coordination problems
  • Cognitive problems such as memory loss
  • Brain swelling
  • Bleeding
  • Mouth sores
  • Hair loss
  • Fetal injury
  • Infertility

Brochure | Chemotherapy        Spanish Brochure | Quimioterapia

Radiation (also called X-rays, gamma rays, or photons) is a treatment used to either kill tumor cells directly or interfere with their ability to grow. The term “radiation” usually refers to conventional external beam radiation therapy, which is the most common form of radiation treatment for brain tumors. Other forms of radiation therapy are also available. A doctor (radiation oncologist) or the ABTA can tell you more about these other methods.

Purpose of radiation therapy

The goals of radiation therapy are to kill tumor cells, slow tumor growth, and/or stop the tumor from growing, while limiting the amount of radiation to nearby healthy brain tissue and vital organs.  Radiation may be used after all or part of a tumor is removed by surgery. When a tumor is partially removed, radiation is often used to treat the remaining tumor tissue. Even when a tumor is fully removed, some microscopic tumor cells may remain. Radiation attempts to destroy these remaining cells.

Radiation is also used to treat tumors that cannot be surgically removed and tumors that have spread to the brain from other parts of the body (metastatic brain tumors). Radiation may be used to prevent metastatic brain tumors from developing. Sometimes radiation is used to relieve symptoms rather than eliminate the tumor. This is called palliative radiation.

Types of conventional radiation therapy

Two common types of conventional radiation therapy are Intensity Modulated Radiation Therapy (IMRT) and 3D Conformal Radiation Therapy (3DCRT). Both IMRT and 3DCRT alter the radiation beam shape to match the tumor shape in order to help prevent damage to healthy tissue. They also both adjust the intensity of the beam based on tumor characteristics.

How radiation therapy works

Radiation therapy is usually an outpatient procedure. Treatments are painless and take just a few minutes. A typical schedule for radiation therapy consists of one treatment per day, five days a week, for two to seven weeks.

As radiation treatments continue, an increasing number of tumor cells die. The tumor shrinks and the dead cells are broken down and disposed of by the body’s immune system. Radiation affects both normal cells and tumor cells. However, following standard doses of radiation, healthy cells repair themselves more quickly and completely than tumor cells.

Radiation therapy may be given before, during, or after chemotherapy, or with drugs that make tumor cells more sensitive to the radiation (radiosensitizers).

Radiation treatment success depends on several factors, the most significant of which are: the type of tumor being treated (some are more sensitive to radiation than others) and the size of the tumor (smaller tumors are usually more treatable than larger ones).

Potential side effects of radiation therapy

Most people have some side effects from radiation therapy. Side effects may include:

  • Fatigue
  • Hair loss
  • Skin changes
  • Swelling (edema)
  • Nausea
  • Sexual effects (reduced desire)
  • Blood clots
  • Cognitive changes

Your doctor can talk with you about ways to minimize the side effects of radiation therapy.

Brochure | Radiation Therapy        Spanish Brochure | Radioterapia

Stereotactic radiosurgery (SRS) is not surgery. It is a special form of radiation therapy that delivers multiple high dose radiation beams to treat the tumor. The multiple beams precisely conform to the tumor’s shape, which helps minimize the negative impact to surrounding healthy tissue and organs. SRS uses higher doses of radiation than conventional forms of radiation.

Purpose of stereotactic radiosurgery

The goal of radiation therapy is to kill tumor cells or slow or stop the tumor from growing, while limiting the amount of radiation to nearby healthy brain tissue and vital organs. SRS is typically recommended for the treatment of tumors that are small (3 cm or less), with well-defined margins, and located in areas that are hard to reach surgically. It can also be used as a tumor-targeted “boost” at the end of conventional radiation therapy.

How stereotactic radiosurgery works

SRS is commonly given in one dose, but in some cases may require up to five doses (called stereotactic radiotherapy or fractionated SRS). A treatment session can range from 20 minutes to about two hours. During this time, multiple narrow beams/arcs are programmed to come from different directions to deliver a specific dose of radiation to the tumor. These beams come from a machine which the patient lays inside of, or from a robotic arm. The treatment itself is painless.

As part of the treatment, computer-assisted 3D imaging equipment is used to accurately target the tumor. A lightweight head frame (“halo”) or a face mask is used to keep the head still during treatment.

Once treatment is complete, a technician removes the head frame or face mask, and the patient is given follow-up care instructions before going home. (Occasionally, a patient might be kept overnight for observation.) Most people are able to resume their usual activities within a day or two.

Potential side effects of stereotactic radiosurgery

Some people have few or no side effects from SRS. When people experience side effects after SRS, it’s usually caused by brain swelling (edema) triggered by the radiation. These symptoms can include:

  • Fatigue
  • Mild skin reactions (e.g., irritation, redness)
  • Hair loss near the area treated
  • Nausea
  • Vomiting
  • Dizziness
  • Headaches

Hair loss in the area treated may be seen two or three weeks following the procedure. It depends on the dose of radiation received and the ability of the radiated hair follicles to heal. Regrowth usually begins in three to four months, and may be a slightly different color and/or texture than before.

Some people experience delayed reactions weeks or months after treatment. A common reaction includes radiation necrosis (death of cells caused by radiation therapy). Symptoms of radiation necrosis may be similar to the symptoms of tumor regrowth. Your treatment team can provide more specific information about side effects and how to manage them.

Brochure | Stereotactic Radiosurgery

Proton therapy is a highly specialized form of radiation therapy hat uses beams of fast-moving protons to destroy the tumor. In contrast, traditional radiation therapy uses beams of highly-charged electrons.

Purpose of proton therapy

The goal of radiation therapy is to kill tumor cells, slow tumor growth or stop the tumor from growing, while limiting the amount of radiation to nearby healthy brain tissue and vital organs. Proton therapy uses positively charged particles, known as protons, to send a high level of energy directly to the tumor. Proton beams deliver the targeted radiation dose to the tumor, after which they stop moving through tissue. This unique feature helps to reduce the harm caused to surrounding healthy tissues and organs.

Proton therapy is typically recommended for the treatment of tumors that are oddly shaped, located in hard to reach areas, or near vital organs and heathy brain tissue as well as smaller tumors with well-defined margins.

How proton therapy works

Proton therapy is usually given in an outpatient setting, not a hospital. During a pre-treatment session known as a simulation, patients are guided into the position they will need to stay in for the sessions. Next, patients will have an imaging (MRI or CT) scan. The scan will help clinicians tailor the radiation dose and shape of radiation beams as well as map out the exact area to be treated.

Patients are fitted with a custom-made mask which helps keep them still during the procedure. The location where the proton beam will enter the skin is marked.

Before every treatment, the medical team will do either a CT or MRI scan, which helps ensure that patients are in the same exact position each time. That way, the proton beams will hit the tumor and not nearby tissue.

During the proton therapy session, patients are placed on a treatment table in a special treatment room. Some treatment rooms have a gantry, which is a donut-shaped, rotating steel machine. The gantry rotates around the table, directing the protons to the patient’s tumor through a nozzle on the cyclotron/synchrotron.

Typically, proton therapy treatments last 15 to 30 minutes, from beginning to end. The procedure itself takes only a few minutes and is painless. The number of treatment sessions needed depends on the type and grade of the tumor.

Potential side effects of proton therapy

Patients treated with proton therapy generally have fewer side effects than patients treated with conventional radiation therapy. The patient’s treatment team can provide more specific information about side effects and how to manage them. Common side-effects include:

  • Fatigue
  • Mild skin reactions (e.g., irritation, redness)
  • Hair loss near the area treated
  • Cognitive problems such as memory loss
  • Nausea
  • Vomiting
  • Headaches

Some people experience delayed reactions weeks or months after treatment. These reactions can include radiation necrosis (death of cells caused by radiation therapy). Symptoms of radiation necrosis may be similar to the symptoms of tumor regrowth. Your treatment team can provide more specific information about side effects and how to manage them.

Brochure | Proton Therapy       Spanish Brochure | Terapia de protones

Tumor Treating Fields (TTFields) use electrical fields, delivered through a wearable device, to slow and reverse tumor growth.

Purpose of TTFields

Approved by the FDA for the treatment of glioblastoma, research suggests that TTFields may prolong survival and maintain quality of life when used with temozolomide after radiation therapy plus temozolomide in patients with newly diagnosed glioblastoma.

How TTFields work

Patients wear a portable, battery-operated device that creates low-level electric fields that interfere with the tumor cells’ ability to grow and divide. Using the TTFields device requires placing transducer arrays (adhesive patches) on the patient’s head and wearing the device for at least 18 hours a day.

Potential side effects of TTFields

The most common adverse reaction is a mild to moderate skin irritation.

Many cancer patients use integrative and alternative medicine to treat a brain tumor, address tumor-related symptoms, or to manage the side-effects caused by treatment. Integrative and alternative medicine refers to treatment and healing practices that are not standard treatments. They may be used on their own or in conjunction with standard of care treatments for brain tumors. Examples of these treatments include meditation, traditional Chinese medicine, dietary supplements, massage, certain diets (e.g., Ketogenic), and acupuncture.

Important considerations 

If you are considering integrative and alternative medicine, be sure to share all information you find with your doctor. Together, you can decide whether a specific treatment is right for you. When considering integrative and alternative medicine, the following guidelines are suggested:

  • Avoid alternative medicine practitioners who tell you to forego standard treatment in favor of the therapies they recommend.
  • Be wary of any treatment claiming to have no side effects.
  • Be aware that herbs, vitamins, and minerals have the potential to cause adverse reactions when combined with other medications.
  • Check with your doctor or pharmacist to be sure that any alternative therapies you use (even vitamins) are compatible with your treatment regimen.

Learning more

Given how much information about alternative medicine is available, patients are encouraged to learn as much as they can from as many reputable sources as possible. Information about alternative medicine can be found everywhere—in books, on the Internet, from organizations promoting its use, and from friends and family. 

The credentials of the person presenting the information can tell you a lot about whether or not it is valid:

  • Is he/she licensed? (Not all states require licensing or certification of alternative medicine practitioners.)
  • What kind of organization does he/she represent? (A business? A college or university? A nonprofit organization?)
  • What is his/her educational background?
  • What are his/her professional society affiliations?

Your research will help you make educated decisions about your care, should you choose to pursue alternative treatments.

Check with your doctor or pharmacist to be sure that any alternative therapies you use (even vitamins) are compatible with your treatment regimen.

Read more about complementary and alternative medicine

A clinical trial is a research study conducted within a medical setting. It is an organized way of evaluating a new investigational treatment, such as a drug or device, to determine if it is safe and effective. Information derived from clinical trials add to our overall understanding of brain tumors and helps to identify new treatment options. Clinical trial participants are patients who volunteer for this opportunity to obtain a treatment that otherwise wouldn’t be available. Although researchers truly do not know whether the new treatment or the current treatment is most effective, the new treatment being investigated must demonstrate some potential for success before a clinical trial is allowed to begin. That potential is based on previous laboratory experience, animal trials or the results of other clinical trials. No one knows in advance if the new treatment being tested in a clinical trial is as effective as, or better than, the standard therapy currently in use. The results of clinical trials are measured against the best standard therapy available for the particular condition.

Purpose of clinical trials

Clinical trials play an important role in whether new treatments become available for public use. Many of the treatments available today are the result of clinical trials.

The U.S. Food and Drug Administration (FDA) requires any new treatment to be thoroughly evaluated and approved before being offered to the public. To gain FDA approval, the manufacturer of the treatment must submit full reports of the studies to show that the treatment is safe and effective for its intended use. Clinical trials act as the primary way for manufacturers to prove that their product is safe and effective.

Types of clinical trials

There are several different types of clinical trials, including:

  • Treatment trials
  • Supportive care trials (also called quality-of-life trials)
  • Prevention trials
  • Early detection or screening trials
  • Diagnostic trials

When people speak about clinical trials, they are usually referring to treatment trials, which investigate a new treatment or combination of treatments.

Questions to ask about clinical trials

To learn more about a specific clinical trial, ask the trial administrator these and other questions before participating:

  • Why is the new treatment thought to be effective? Has it been tested before?
  • When did the trial begin?
  • How many people have been treated so far?
  • How many have my type of tumor?
  • How well are the study patients doing?
  • What are the known possible side effects of the treatment being tested? Are they temporary or permanent? Can they be controlled or lessened some way (medications, diet, etc.)? How will they affect my daily activities?
  • Will I have to get additional testing done? What kinds?
  • Where will the treatment take place? Can it be given close to my home?
  • How many treatments will there be? How long will each one take?
  • Will the study doctors work with my doctor while I participate in the study?
  • Will I need to be hospitalized for study purposes?

How clinical trials work

People volunteer to be part of clinical trials. Each trial has its own eligibility guidelines (e.g., age, tumor type) which patients must meet in order to enroll. Prior to any kind of treatment, you have a right to know the exact nature of the treatment: the known risks, the prospects of success and if there are standard therapies.

Trials are designed to answer the following questions about the new treatment:

  • Is it safe? (Phase I)
  • Is it effective? (Phase II)
  • Is it more effective than standard treatment? (Phase III)
  • Does it provide any benefit or advantage over standard treatment? Or is it the same or less effective than the standard treatment? (Phase IV)

During a clinical trial, participants receive either a new treatment, a new combination of existing treatments or the currently-approved standard of care treatment (which is compared to a new treatment), or a currently available treatment that is used in a novel way. Most Phase III/IV clinical trials place participants into two groups: the investigational group (receives the new treatment) and the control group (receives the standard treatment).

Participants are closely monitored by medical professionals throughout the study to monitor changes in overall health, not just the brain tumor. Participants may withdraw from the trial at any time.

The majority of clinical trials are paid for by the sponsor of the trial, which may be the U.S. government, a pharmaceutical company or a medical device company.

The benefits of participating in a clinical trial include the following:

  • You may get a new treatment for a disease before it is available to everyone.
  • Researchers will provide you with medical care and more frequent health check-ups as part of your treatment.
  • You may have the chance to help others get a better treatment for their health problems in the future.

There are some risks to consider when participating in a clinical trial. The treatment may have unpleasant or even serious effects. Clinical trials may have a greater time commitment than standard treatment including additional visits to the study site, additional testing or monitoring, and longer follow-up. Be sure to discuss the potential risks and benefits with your doctor when considering participating in a clinical trial to know if it’s right for you.

Brochure | Clinical Trials        Spanish Brochure | Ensayos Clínicos

Laser Interstitial Thermal Therapy (LITT), also known as laser ablation, is a minimally invasive treatment for brain tumors. It uses a laser to destroy tumor tissue with heat. It is best used as a treatment for small (3 cm or less) tumors that are located deep in the brain.

How LITT Works

Computer image guidance is used to locate the tumor. A small hole is drilled into the skull, and a fiber is inserted into the brain near the tumor. The fiber head emits lasers which go to high temperatures. This heat destroys tumor tissue. The neurosurgeon performing LITT can see the treatment happening in real time through the image guidance system and make adjustments to the treatment as needed.

Potential Side Effects of LITT

While LITT may result in fewer side effects than open surgery, there are still risks. Speak with your doctor about the potential side effects of this treatment.

Treatments that use the body’s own immune system to fight cancer are called immunotherapies. They work by altering the way the body’s immune system functions. For example, immunotherapy may remove the body’s natural “brakes” that keep the immune system from overworking and attacking the body (autoimmune disorders). Others strengthen the immune system against cancer. Common types of immunotherapy include:

  • Immune checkpoint inhibitors
  • T-cell transfer therapy
  • Monoclonal antibodies
  • Vaccines
  • Immune system modulators

Immunotherapies are given in several ways, including oral medications and intravenously (IV).

Some immunotherapies used to treat brain tumors include nivolumab, pembrolizumab, ipilimumab, dendritic cell vaccines, and adoptive T-cell therapy.

Speak with your doctor to see if immunotherapy is a treatment option for you. All treatments have risks and side effects, so make sure to ask how immunotherapy could affect you.

Targeted therapies are treatments that work by attacking tumor cells or interfering with their functioning. For example, a targeted therapy can “mark” a cancer cell so that it is more easily identified by the immune system.  Or it could alter the parts of tumor cells so that they do not reproduce. In order for a targeted therapy to work, your tumor has to have certain molecular markers, also called biomarkers. Molecular testing shows which molecular markers your tumor has. Targeted therapies are usually given as an oral medication or intravenously (IV).

Bevacizumab is a commonly used targeted therapy that has been approved by the FDA to treat recurrent glioblastoma. It works by targeting a protein known as vascular endothelial growth factor. This protein triggers the making of new blood vessels, which in turn, feed the tumor enabling it to spread and grow. Essentially, the targeted therapy starves the tumor.

Speak with your doctor to see if targeted therapy is a treatment option for you. All treatments have risks and side effects, so make sure to ask how targeted therapy could affect you.

Side Effects

The National Comprehensive Cancer Network describes fatigue as “a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer that is not proportional to recent activity and interferes with usual functioning.” It is a common brain tumor treatment side effect which can include:

  • A profound lack of energy
  • Feeling suddenly tired
  • Generalized weakness
  • Limb heaviness
  • Difficulty concentrating
  • Irritability or emotional reactivity
  • Sleeplessness
  • Increased need to rest
  • Decreased motivation
  • Difficulty completing daily tasks
  • Perceived problems with short-term memory

Fatigue can be caused by treatments such as radiation therapy, chemotherapy and other medications such as anti-epileptic drugs. It can also be caused by sleep disruptions related to treatment.

How to handle fatigue

Adjust your lifestyle

  • Accept that you’re going to need some down time.
  • Keep track of when your energy is up or down, and plan your days accordingly.
  • Figure out what activities you can let go of or delegate to a friend, family member, caregiver, or professional.
  • Set up your environment so that you spend as little energy as possible on daily tasks.
  • Ask your doctor about meeting with an occupational therapist to learn energy-conservation strategies.
  • Look into meditation, guided imagery, music therapy, yoga, or other complementary therapies to help calm your mind.

Eat for energy

  • Eat small, frequent meals that combine complex carbs with vegetables, dairy, and some protein to keep your energy stable.
  • If you have the energy to cook, focus on fresh ingredients that have lots of nutritional value.
  • Prepare your food sitting down.
  • Cook in large batches.
  • Use kitchen time savers, from pre-cut veggies to disposable pans.

Exercise

  • Check with your healthcare team before starting any exercise or fitness plan.
  • Try moderate exercise to boost your energy level – aerobics, yoga, and resistance training are good choices.

Focus on sleep

  • Develop good sleep hygiene.
  • Go to bed at the same time every night.
  • Set a consistent routine to wind down for sleep.
  • Limit vigorous activities and caffeine before bed.
  • Avoid screens (phone, TV, or computer) for at least one hour before bed.
  • Add short naps (less than one hour) to your routine in the early afternoon to give you an energy boost but don’t use daytime naps as a substitute for a full night’s rest

Medications

  • Medications such as methylphenidate, modafinil, steroids, and antidepressants can help alleviate fatigue.
  • Work with your doctor to understand the purpose of these medications and when to take them.

Nausea is an uneasy feeling in the stomach, sometimes accompanied by an impulse to vomit. Nausea and vomiting can be a side effect of treatments such as chemotherapy. It can also be caused by inflammation (edema) caused by treatments such as radiation therapy or surgery.

How to handle nausea and vomiting

Swelling (edema) caused by brain tumor treatments is often treated with steroids. Medications such as ondansetron may be prescribed by your physician to help control nausea and vomiting.

Brain tumor treatments, like surgery and radiation therapy, can sometimes affect our ability to learn and remember new information. Short-term memory is where we store information we need to remember for just a few seconds or minutes. Remembering a phone number we’re just about to dial is an example. Long-term memory is for information that is stored for more than just a few minutes. Our family’s names are stored in our long-term memories. For people who experience brain tumor treatments, short-term memory is most commonly affected. Fatigue, which is common in patients with brain tumors, can make these issues even worse.

How to handle memory loss

The more active your brain is, the more connections you’ll build within it. Any activity you enjoy that stimulates the brain has the potential to be helpful—reading, writing, exercise, and working on crossword puzzles are good examples.

Here are some tips to help improve your memory in general:

  • Get plenty of sleep.
  • Eat regular, well balanced meals and drink plenty of liquids.
  • Adjust your surroundings to enhance your attention span. Some people perform better in a quiet, distraction-free environment, while others need more stimulation.
  • Discuss referral for a neuropsychological evaluation with your physician in order to identify the difficulties.
  • Use repetition, word associations, cues, and reminders to help you remember.
  • Stay organized by using calendars, planners, memory notebook, alarm clocks and/or timers
  • If you are a visual learner:
    • Use written lists.
    • Visualize the information you want to remember (i.e., picture the story as it’s being told).
    • When you can, sketch it out.
  • If you are an aural (listening) learner:
    • Get the information verbally; if it’s a drawing or map, talk it out.
    • Read the information out loud (engaging more than one sense may help you remember).
    • Audio record important information.
    • Take notes.

Clinical depression (also called Major Depressive Disorder) goes far beyond a case of “the blues” or sadness. Depression is persistent and can interfere with many aspects of daily life. Symptoms may include a prolonged feeling of sadness, loss of interest or pleasure in things that used to be enjoyable, feelings of worthlessness or guilt, changes in sleep patterns, decreased energy, and even thoughts of suicide.

Mood swings are sudden, unexplained changes in mood. You can be content one moment, and very angry the next without any reason.

Depression and mood swings can be experienced as side effects of treatment such as surgery, chemotherapy, radiation therapy, and medications such as steroids or anti-epileptics.

How to handle depression and mood swings

It is important that you are able to identify the signs and symptoms associated with depression and mood swings and get help. By carefully looking for symptoms of depression or other mood symptoms, you may be the first to identify this important issue and alert the doctor to your concerns. Your doctor can perform a formal evaluation, and, if you are diagnosed with depression or another mood disorder, help you get effective treatment.

It is important to remember that depression is not a sign of weakness—it is a common occurrence for people with brain tumors. Untreated depression can slow the rates of recovery and cause other health problems. Getting help for depression may be part of your brain tumor treatment plan for your mental health and well-being. Treatment for depression and mood swings typically consists of medication and/or counseling.

National Institute of Mental Health: Depression

Brain tumor treatments can cause a number of side effects that present as or overlap mental health disorders. They often look like significant changes in the patient’s personality, behavior, mood and/or thinking. If untreated, these side effects, also known as neuropsychiatric symptoms, can cause distress for the patient and their loved ones.

Changes in personality and behavior are one of the most challenging side effects for caregivers to live with. Someone who was once driven and motivated before a brain tumor diagnosis can now be passive and inhibited. Or someone who was once described as sweet and kind could become irritable and controlling. Loved ones can feel frustration or sense of loss for the person they knew “before.”

Other examples of neuropsychiatric symptoms include aggression, delusion, hallucination, impulsivity, mania, paranoia, psychosis, and violent behavior. In extreme cases, these changes can lead to situations in which the person, their caregiver, loved ones or others are placed at risk.

Neuropsychiatric symptoms related to a brain tumor can be caused by treatments such as surgery, chemotherapy, radiation therapy, or other medications.

How to handle personality and behavior changes

If you or your caregiver notice significant changes in personality, behavior, or mood, it is important to tell your doctor. Health care providers can help address these side effects. Strategies to address these side effects include lifestyle changes, psychiatric medications, and counseling/psychotherapy. The following are tools to help navigate such changes:

  • Determine if the change is due to the situation, disease, or treatment
  • Understand that changes in personality, behavior, mood, or cognition may require counseling and/or medications
  • Positively reinforce behavior that represents progress away from problem behavior
  • Talk to a health care provider about new strategies to help with the problem behaviors.
  • Remove yourself from stressful situations when appropriate.
  • Develop a comprehensive plan with your health care team, implement the plan consistently, and practice patience

Neuropsychiatric Symptoms Brochure

Changes in cognitive function are a common side effect among brain tumor patients. In some cases, these changes are so subtle that the patients themselves are more aware of their difficulties than those around them. In others, it is the caregiver rather than the patient who first recognizes that something is different.

Treatments such as radiation, surgery, and chemotherapy can also have an effect on how a person thinks and acts. The psychological and emotional effects of brain tumor treatment are important to consider as well.

Cognitive changes commonly fall into a few broad categories:

  • Learning and memory: Difficulty learning and recalling new information or experiences.
  • Language and communication: Difficulty with word finding and communication (speaking, reading, and/or writing).
  • Attention and concentration: Confusion, distracted easily, difficulty multitasking and planning.
  • Executive functioning/general intellectual abilities: Decreased reasoning ability, impaired judgment, inability to connect cause and effect.

Cognitive changes often depend on the area of the brain affected by the tumor.

How to handle cognitive changes

As a first step, it’s a good idea to inform your medical care team. A doctor may suggest a complete neuropsychological evaluation. This detailed evaluation of your current behavioral, cognitive, and emotional status can help identify specific issues and assist your treatment team in determining how to help.

Different behavioral issues are addressed in different ways, including speech and language therapy, cognitive rehabilitation therapy, medication, and psychotherapy. Talk to your health care provider about which options are best for you.

Cancer treatments, such as certain chemotherapies and radiation therapies, can affect fertility. Brain tumor survivors may face reproductive challenges as a result of their treatment.

If you are planning to have children in the future, or want to keep that possibility open, consider exploring fertility preservation before treatment begins. Talk with your doctor about your concerns. If you have already started treatment, your doctor can evaluate its effect on fertility and refer you to a reproductive endocrinologist, gynecologist, or urologist to determine which options are available.

Surviving a brain tumor is cause for celebration. However, some side effects may happen long after treatment is completed. These are known as late effects. Chemotherapy, radiation, and surgery can all result in late effects. A symptom is considered a late effect if it occurs several months or years after treatment is completed.

It is important to be prepared for the possibility of late effects. Here are some common late effects, and what you can do to minimize their impact:

Chemotherapy late effects

Late effects of chemotherapy can vary depending on what drugs were used. Survivors should have regular follow-up visits with their healthcare team. Late effects of chemotherapy can include:

  • Fertility problems
  • Hearing loss or tinnitus (ringing in the ears): If needed, hearing aids can help.
  • Dental issues: Increased risk of cavities, thinning of tooth enamel and problems with roots are likely.
  • Behavior changes: Survivors and their families should be vigilant about noticing changes in emotional response or behavior.

If any of these late effects arise, speak with your treatment team about how to best address them.

Radiation late effects

Radiation therapy carries a higher risk of late effects than chemotherapy does. They include:

  • Cognitive issues: Survivors may experience changes in their memory, word finding, motor skills, learning, and behavior. Children who have received radiation therapy may experience learning disabilities.
  • Hormone problems: Radiation can affect the body’s pituitary, thyroid, and reproductive glands, affecting the hormones they produce.
  • Fertility challenges: Radiation can have long-term effects on fertility for both women and men. Survivors planning a family should talk with their healthcare team about their options.
  • Vision problems: Radiation near the optic nerve can cause vision loss. Cataracts may also surface as a late effect after radiation treatment.
  • Hearing loss or tinnitus (ringing in the ears)
  • Secondary malignancies: Rarely, radiation can cause new tumors within the previously irradiated area. These tumors can arise many years after radiation treatment.
  • Bone growth problems: Radiation to bones in children may stunt growth. This may be seen in patients receiving radiation therapy to the craniospinal area.

There are various nerves in the brain that help with functions such as hearing, seeing, and facial movement. These are called cranial nerves. Treatments, such as radiation therapy or surgery, that target tumors on or near these nerves can cause side effects related to the nerve’s function, including:

  • hearing issues: ringing, buzzing, or loss of hearing in one or both ears
  • balance problems: difficulty walking or standing
  • decreased muscle control: weakness of some facial muscles
  • decreased sensation: facial numbness or pain
  • trouble swallowing
  • vision problems

How to handle cranial nerve side effects

Speech and language therapy can help restore functioning in facial movements, chewing, and swallowing. An audiologist can help address hearing loss and movement and an ophthalmologist can help address vision loss. Physical/Occupational therapy can help improve balance.

Brain tumor treatments, such as surgery or radiation therapy, that target tumors on or near the occipital lobe or optic nerve can lead to vision problems such as:

  • Blurred vision
  • Double vision
  • Abnormal eye movements
  • Sensitivity to light
  • Loss of vision (partial or complete)

How to handle vision problems

It is important to discuss any vision problems with a neuro-ophthalmologist or primary care doctor.

Physical and occupational therapy can assist with vision retraining. You may be prescribed special glasses with prisms or alternating eye patching to assist with double vision. Being aware of your vision problems can assist with learning to scan your environment in order to avoid injury.

Rehabilitation Options

Rehabilitation is a key part of your recovery. A targeted rehabilitation program led by trained therapists can help you get back your strength, stamina, and function. Here are your key therapy options:

Physical Therapy

A physical therapist (PT) can help you improve your physical strength, coordination, balance, and mobility. The therapist can help you to gradually restore large motor functions (e.g., walking) and show you helpful exercises to do at home. Your program will be targeted to your needs. For example, you may focus on strength training, restoring limb movement, or balancing.

Speech Therapy

Speech therapy helps address problems with speech, language, communication and swallowing. The therapeutic exercises may include muscle exercises, breathing techniques, and learning how to organize and express thoughts. These exercises are usually given by a speech-language pathologist. Your speech therapist will first test your current function and then create the best program for your needs.

Occupational Therapy

Each person has daily tasks that they need to perform, such as feeding oneself, bathing, and putting on clothes. These are called activities of daily living (ADL). The symptoms of a brain tumor, or side effects from treatment, can get is the way of your ability to do these things. Your occupational therapist (OT) will help you regain mastery of these daily tasks. OT’s can also help with more advanced skills, such as meal preparation, managing money, taking transportation, and shopping.

Neuropsychological Testing and Cognitive Rehabilitation

A brain tumor or its treatments can cause changes in your cognitive skills, behavior, and emotions. Cognitive changes can include short-term memory loss, trouble with word recall, and difficulty focusing or remembering how to do things you used to be able to. A neuropsychologist is a medical professional who evaluates people experiencing cognitive changes as well as mood disturbance or changes in personality and behavior. During a neuropsychological evaluation, the doctor assesses different brain functions such as attention, memory, and language to determine whether they are working normally or not and assesses mood and behavioral changes. The evaluation usually takes several hours. During the evaluation you will complete written and verbal tasks, either on paper or on a computer, and participate in conversations with the neuropsychologist. The results of the evaluation are shared with you and other doctors in your treatment team as needed. Recommendations may also be made for treating any cognitive impairments.

Cognitive rehabilitation (also called cognitive rehabilitation therapy, cognitive retraining, cognitive remediation) helps people relearn cognitive skills through exercises that focus on attention, memory, language/communication, and executive function (e.g., planning, solving problems) or compensate for cognitive dysfunction through behavioral strategies and interventions.

To get started, talk with your healthcare team about what kind of therapy you can benefit from and how to enroll.

Neuropsychologist and Neuropsychiatrist locator tools

The following websites can help you in locating a neuropsychologist or neuropsychiatrist in your area

Neuropsychologist locators

American Academy of Clinical Neuropsychology

American Board of Professional Neuropsychology

Society for Cognitive Rehabilitation

Neuropsychiatrist locators

American Neuropsychiatric Association