The purpose of this brain tumor handbook is to help patients and families find up-to-date sources of information and support specific to the Brain Tumor Program and Barrow Brain Tumor Research Center.
During your stay in the hospital, your care will be provided not only by a team of doctors and nurses who are brain tumor experts but also by many other staff members. We hope this handbook will help you to learn about your brain tumor and how to talk about it with your treatment team.
You also can print a PDF file of the Brain Tumor Handbook here.
Each year, over 1200 patients undergo brain tumor surgery at the Barrow Neurological Institute – the most of any brain tumor center in the United States. Our multidisciplinary team of neurosurgical oncologists, clinical neurooncologists, radiation oncologists, nurse specialists, clinical therapists, and social workers is dedicated to providing you with state-of-the-art clinical care so that you can get back to your daily life as soon as possible. While your case is certainly not our first time dealing with this diagnosis, we recognize that it is yours. To help you and your family familiarize yourselves with your condition, we assembled this Handbook to provide an accurate framework to better understand brain tumors.
At the Barrow Neurological Institute, the treatment plan for each brain tumor patient is individualized, so not everything described in these pages will necessarily apply to you. Nevertheless, it is always easier to navigate the waters when you know what is in the realm of possibilities. By consolidating the latest information in a single booklet, we hope this knowledge will help you make informed decisions as we work in partnership to diagnose and treat your brain tumor.
For most brain tumor patients, dealing with a brain tumor is more of a marathon than a sprint, so we encourage friends and family members, not just you, to take care – get enough sleep, nutrition, and exercise to stay as healthy and focused. Step-by-step, our brain tumor team we will help take you through the diagnostic and treatment process, all the way from preoperative testing to neurosurgery and beyond. While you will meet many different specialists during this time, rest assured that we are all working in unison on your behalf.
As you will soon learn, research and technology play central roles in modernday brain tumor management. During your care, you will be exposed to the next-generation neurosurgical techniques, advanced brain imaging modalities, cutting-edge clinical therapeutics, and precision radiation therapies. In many cases, state-of-the-art clinical trials also play a role in your care, as does basic science research. Because so many questions remained unanswered regarding the biology of your brain tumor, the Barrow Neurological Institute, in partnership with the Ben & Catherine Ivy Foundation, has recently created the Ivy Brain Tumor Center. This advanced brain tumor research program features the largest earlyphase clinical trials program for brain tumor patients in the world. The Ivy Center’s singular goal is to develop new therapies that specifically target your tumor. Our Center features the most advanced scientific and biological techniques available, including many that we have pioneered, ourselves. Please visit us at www.ivybraintumorcenter.org for more information on our precision medicine trials.
Please look through the Handbook at your convenience and let us know your thoughts. We are always open to suggestions on how to better address your questions and concerns.
Nader Sanai, MD
You may be seen by a number of doctors and staff during your stay in the hospital. Some of them will become members of your brain tumor treatment team. The following is a description of the role some of your potential team members may have in your care.
Neurosurgeon: The surgeon who performs surgery to remove the brain tumor. The neurosurgeon also works with residents (doctors in training) who help provide care for you while you are in the hospital.
Neuro-oncologist: A neurologist with special training in the medical treatment of brain tumors using medications and chemotherapy. This doctor will closely follow your care and will address any new symptoms or concerns.
Neuropathologist: A doctor who makes the diagnosis of diseases of the brain and nervous system by examining the tissue under a microscope.
Radiation Oncologist: A doctor with special training who treats tumors with radiation. This doctor will also follow your care during radiation treatment sessions and afterward.
Medical Oncologist: A doctor with special training who treats cancers and tumors from other places in the body (such as the lung or breast). Medical oncologists also care for people with primary brain tumors if a neuro-oncologist is not available. If you are diagnosed with a metastatic brain tumor, you will be treated by a medical oncologist.
Nurse Practitioners (NPs): The NPs at Barrow have special training in the neuroscience field. Their role is to work with doctors and serve as the main contact person on your care team while you are in the hospital. An NP works closely with your neurosurgeon to direct your plan of care and teach you about your disease.
Nurse Navigator: A nurse who is a contact person to help bring you together with your care team after you leave the hospital. The nurse navigator can also help you connect with other sources of support.
Neuropsychologist: A doctor with special training in helping people who have trouble with their thinking and memory issues. If you need this doctor’s help, you would make an appointment after you go home.
Your neurosurgeon has a clinic within St. Joseph’s Hospital and Medical Center at:
Barrow Brain and Spine 2910 North Third Avenue
Phoenix, Arizona 85013
Office number: (602) 406-3181
If you had a visit in the hospital with a neuro-oncologist, you will follow up in the clinic located on the campus of St. Joseph’s Hospital and Medical Center.
Barrow Neuro-Oncology and Stroke Center 240 West Thomas Road, Suite 403
Phoenix, Arizona 85013
Office number: (602) 406-6262
If you had a visit in the hospital with a radiation oncologist, you will have follow up at the clinic located within St. Joseph’s Hospital and Medical Center.
Radiation Oncology & Cyberknife Department 350 West Thomas Road
Phoenix, Arizona 85013
Office number: (602) 406-6761
You may have one or more incisions on your head closed with staples or sutures (stitches). These will be removed at your clinic follow-up visit 7 to 14 days after surgery. Alternatively, you may have sutures that dissolve. These will not need to be removed and will absorb into your skin over the next few weeks. You may shower with mild soap and shampoo daily. Gently wash your incision and pat it dry. This is the only time you may touch your incision. Do not take a tub bath, go swimming, or get into a hot tub until the doctor says you can. Do not apply ointments, lotions, or creams to your incision.
To help reduce swelling and discomfort, you may apply an ice pack to the area every 30 minutes, as needed.
You should wear a hat outdoors to protect your head until your sutures or staples have been removed.
You may have some itching at your incision site, some jaw tightness, or trouble opening your mouth very wide for a few days after surgery. These conditions will improve as you continue to heal.
Avoid having your hair colored or permed for 4 to 6 weeks after surgery.
It is important to get out of bed and move about as soon as possible after surgery to avoid the risk of problems such as blood clots or pneumonia. If you feel unsteady on your feet, use help to walk. Get plenty of rest. Avoid any exhausting activity for 4 weeks. Walking for exercise is okay.
For the first 3 days you are home, do only light activity around the house. After that, you can slowly increase your activity, starting with a short walk 1 to 2 times a day.
For 8 weeks after surgery, do not do anything that would put you at risk of head trauma (such as skiing, snowboarding, biking, or contact sports). It takes 6 to 8 weeks for bone to heal.
Do not try to lift, push, or pull more than 10 pounds for 4 weeks after surgery.
Eat plenty of fruits and vegetables to prevent constipation. Drink 6 to 8 cups of water each day, which will also help prevent constipation.
You will receive a prescription (Rx) of pills for pain when you go home from the hospital. Here are some facts you need to know about pain pills:
- Pain pills are strong medicine and you need a paper prescription (Rx) by a doctor or NP to obtain strong medicines.
- Some pain pills also have acetaminophen (Tylenol) mixed in them.
DO NOT Take Extra acetaminophen (Tylenol) with these two types of pain pills:
- oxycodone/acetaminophen (Percocet, Endocet)
- hydrocodone/acetaminophen (Vicodin, Norco)
You CAN take 650 mg of acetaminophen (Tylenol) every 4 to 6 hours, if needed, with these five types of pain pills:
- hydromorphone (Dilaudid)
When you feel that you no longer need your strong pain pills, you may take 650 mg of acetaminophen (Tylenol) every 4 to 6 hours, as needed.
Acetaminophen (Tylenol) is available over the counter—no Rx is needed.
Caution: Too much acetaminophen (Tylenol) can damage your liver. Do not take more than 4000mg in 24 hours.
To avoid side effects such as nausea, vomiting, or constipation, you should take your pain pills with food, and only as needed.
Do not drink alcohol or drive when taking prescription pain pills.
Steroids for Swelling
You may go home from the hospital on a steroid, usually dexamethasone, to decrease brain swelling. These pills relieve symptoms caused by pressure or swelling from the tumor. Once the swelling is under control, the steroid dose will be slowly decreased each day until it is eventually stopped. You will receive specific written instructions for stopping your steroid pills before you go home from the hospital.
Possible side effects of steroids include:
- Appetite changes
- Emotional changes
- Increased blood sugar
- Water retention or swelling in face, legs, or feet
Your brain tumor symptoms might return when your steroid dose is lowered or stopped. You may also feel tired and emotionally down for a few days. If you do not feel better or if your symptoms worsen, call your doctor.
You may receive prescription (Rx) pills to control seizures. It is important to take these pills as directed and to not miss any doses. Discuss with your doctor whether you are allowed to drive.
Some common side effects of seizure pills are:
- Poor appetite
This chart is to help patients and caregivers understand common symptoms and conditions patients with brain tumors may experience. It is a guide and if there is a question about the
seriousness of the symptom please contact your doctor or go to an emergency room.
Patients with certain types of brain tumors are at risk for seizures. Certain locations in the brain are more seizure prone (temporal lobe).
|What a seizure may look like||What to do||Who to call|
|MyoclonicSingle limb on one side or muscle twitching, jerking, shakingTonic Clonic (Grand Mal)Loss of consciousness followed by twitching and jerking type rhythmic movementsMay lose control of bladderMay bite tongueAfter effects are sleepiness, confusion, body achesAbsence seizureA type of seizure that involves brief and sudden loss of attention, as if the person is staring off into nowhere||During seizure:Be sure loved one is breathingProtect head from hitting floorDo not try to put anything in person’s mouthDo not restrain limbsAfter seizure:Attempt to place person on their sideStay with loved one until you reach physician for directions||Seizure may not be an emergency if person is not in distress or has a known seizure disorderCall 911 if not breathing or having difficulty breathingCall 911 if seizure lasts longer than 5 minutes or multiple seizures happenCall 911 if person is not awakeCall your treating neuro-oncologist or treating doctor to describe seizure and for directions|
Memory, Sensory, or Language Problems
Patients may have motor (movement) loss, weakness, or sensation changes if the tumor is located or pressing on the frontal lobe. Patients may experience language difficulties from tumors in the left temporal lobe.
|Description||What to do||Who to call|
|Problems with movement on one side of the body, arm, hand, leg, or footStrange feeling on one side of the bodyFallsMobility issuesFace weaknessDifficulty getting words outDifficulty understanding words or following direction||Non urgent unless sudden onset of weakness, and contact your doctorPhysical, occupational, and speech therapy are helpful to learn how to cope with and compensate for loss of functionSupport from family members is important||Discuss physical, occupational, and speech therapy with your doctor and treatment teamCall 911 if sudden weakness or speech slurring occurs|
Patients have varying degrees of headaches. Some headaches are simply from surgery or from the tumor. Prescribed medication is sometimes necessary. Common medicines used are over the counter acetaminophen and ibuprofen. Common prescribed medicines are opiates, steroids, and some nerve pain medicines.
|Description||What to do||Who to call|
|Surgery location discomfort is expected and usually resolves in a few weeksOngoing headache that is worse in the morning but improves in a few hoursDaily headache that does not improve with pain medications||Take acetaminophen, over-the-counter dose, as directed on the labelTake prescribed pain medicine as directed by your doctor or nurse practitionerTreat with medicine prescribed by doctorKeep a diary of headaches of location and patterns||Call your doctor if medications are not helping headachesCall your doctor if headache is accompanied by fever or stiff neckCall your doctor if headache is the highest degree of pain|
Deep Vein Thrombosis
A deep vein thrombosis (DVT) is a blood clot most commonly found in the legs or arms. Patients who have surgery and have brain tumors are at a higher risk for forming blood clots than the average person. This is especially the case while in a hospital setting. There are medicines that can help prevent them while in the hospital. Each patient’s risk is individually considered by the doctor.
|Description||What to do||Who to call|
|Swelling or pain in the leg or arm||Alert treating team as soon as possibleSeek medical care by treating team or by primary care office or ERAnticoagulation medicine is generally the treatmentSome patients are candidates for inferior vena cava filters||Call treating doctor|
Pulmonary embolism is a complication of a deep vein thrombosis and is a clot that travels to the lung usually from a DVT in the leg.
|Description||What to do||Who to call|
|Chest painShortness of breathFast heart beat||Call 911; a pulmonary embolism is an emergency||Call 911|
Nausea and Vomiting
|Description||What to do||Who to call|
|Feeling sick to stomachCan be associated with increased swelling in brain from a brain tumorMay be a side effect of medications such as chemotherapy or opiates||Take prescribed anti-nausea medicineEat a bland dietDo not take opiate pain medicine on an empty stomach||Call treating doctor during business hours|
Vision Loss or Vision Disturbances
|Description||What to do||Who to call|
|Double vision or blind spots||Certain compensatory therapies, such as occupational therapy, are helpfulAlert treating doctor||Call treating doctor during business hours for discussion|
Cognitive and Behavioral Problems
Cognitive and behavior problems can be difficult to pin point for family members and also overlap in areas of cognitive domains.
|Description||What to do|
|Emotion and personality changes||Depression and anxietyIrritability. Some medications such as steroids can cause irritability and agitation||Discuss symptoms with treating doctor during business hoursPsychotherapyMedication therapySupport groups|
|Memory and learning difficulties||Short-term memory difficultiesDifficulty processing informationDifficulty following directions||Cognitive therapyAvoid giving multistep directions|
|Attention and concentration||Easily distractedConfusion||Cognitive therapyMedication therapy|
|Executive functioning||Difficulty with day-to-day planning such as paying bills or organizing scheduleImpaired judgment||Cognitive therapoyConsider naming a financial power of attorney and medical power of attorney|
It is common to feel tired up to about 6 weeks after surgery. Treatments such as radiation therapy can cause fatigue.
|Description||What to do||Who to call|
|Feeling extremely tired after simple activities such as walking or therapies||Resting in between periods of activityLight activity such as walking||Discuss symptoms with treating doctor during business hoursMedication therapy|
- Paralysis on one side of body
- Mood disturbances
- Difficulty thinking
- Mood swings
- Problems with handwriting
- Mathematical difficulty
- Motor skill deficits
- Loss of sense of touch
- Loss of vision
- Visual hallucinations
- Perceptual/spatial distrubances
- Inability to understand multistep commands (receptive aphasia)
- Loss of balance (ataxia)
- Loss of coordination
- Emotional changes
- Deficits in perception of temperature
- Problems with growth/nutrition (in children)
Call your neurosurgeon or go to the emergency room if any of the following occur:
- Clear or bloody drainage from your nose or ears
- Headache gets worse
- Seizure activity or jerking/twitching of face, arms, or legs
- Ringing in ears
- Neck is stiff or hurts to move
- Weakness of your face, arms, or legs
- A fever higher than 100 degrees
- Redness, swelling, odor, or drainage at your surgery site
- Severe pain at your surgery site that is not controlled by your pain pills
- Nausea or vomiting
- Constipation lasting 3 days that is not helped by over-the-counter pills
The Barrow Tumor Board meets once a week. It provides a means for patients to benefit from the opinions and advice of expert doctors from different specialties who attend each week—doctors from your treatment team (neurosurgery, neuro-oncology, radiation oncology) and other experts, such as a neuropathologist (a doctor who examines the tumor under a microscope and makes the diagnosis) and a neuroradiologist (a doctor who reads the diagnostic scans). This is a meeting consisting of physicians. Patients and family members do not attend.
Patient cases may be presented for a review of the tumor diagnosis or for discussion of the best treatment for the patient. Patient cases are typically presented after a new diagnosis, but also when they are at a critical point where input from the other experts would be helpful.
While you are in the hospital, final pathology will likely not be available but some preliminary recommendations may be made for you. In most cases, final pathology is discussed during office visits with a detailed plan of care.
Tumor diagnosis may also be referred to as “tumor pathology.” During your surgery, your neurosurgeon will send a tumor sample to the pathology lab. The sample will be examined by a neuropathologist, and a preliminary diagnosis will be determined while you are still in the operating room. This preliminary diagnosis is also referred to as a “frozen section” diagnosis. It will require more time for more testing before a final tumor diagnosis is made.
The final tumor diagnosis can take an average of 7 days after your surgery. For this reason, it is not uncommon to be discharged from the hospital before you receive information on your final tumor diagnosis. Your neurosurgeon or oncologist will discuss your tumor diagnosis at your postoperative office visit.
Tumors that start growing in the brain are primary brain tumors and generally will not travel to other parts of the body. Tumors that start elsewhere in the body and spread to the brain are metastatic brain tumors.
Treatment for a brain tumor depends on the type, size, and location of the tumor. Your age and overall health will also be considered in developing your personal treatment plan. Because
a treatment plan is heavily determined by the specific tumor type, surgery is commonly recommended as the first line of treatment so that a tumor type (diagnosis) can be confirmed.
If the brain tumor is located in an area that can be safely reached in an operation, your neurosurgeon will work to remove as much of your brain tumor as possible. In some cases, tumors are small and easy to remove from nearby brain tissue, which makes complete removal possible. In other cases, tumors cannot be removed from the nearby tissue, or are next to sensitive areas in your brain, making surgery risky. In these cases your neurosurgeon may try to remove as much of the tumor as can be done safely. Even removing a part of the brain tumor may help reduce its symptoms. In some cases only a small piece (biopsy) is taken to confirm the diagnosis.
Surgery to remove a brain tumor carries risks, such as infection and bleeding. Other risks may depend on where the tumor is located in the brain. For example, surgery on a tumor near the part of the brain that controls movement may cause weakness after surgery.
Radiation therapy uses x-rays and other sources to kill tumor cells. Radiation therapy is delivered by a machine called a linear accelerator (external beam radiation), or, in very rare cases, by implanted “seeds” that release radiation after being placed inside your body close to the brain tumor (brachytherapy).
External beam radiation is given from outside the body and aims only at the area of your brain that contains the tumor. It can include your whole brain or just part of it, depending on the tumor type. Sometimes radiation is used after surgery to kill tumor cells that might have been left behind.
Radiation therapy is planned on an individual basis, depending on the tumor type.
Side effects of radiation therapy depend on the type and dose. In general, side effects are fatigue, patchy hair loss, and scalp redness and itching.
Radiation therapy is usually an outpatient procedure, so you can go home the same day.
Radiosurgery (Gamma Knife and CyberKnife)
Radiosurgery is not a traditional form of surgery. Instead, it uses multiple beams of radiation to deliver a highly focused form of radiation treatment to kill the tumor cells in a small area. Each beam of radiation is not particularly powerful alone, but where all the beams meet—the brain tumor—a very large dose is delivered, killing the tumor cells.
Radiosurgery is usually an outpatient procedure, as it is not invasive and requires no incision. Side effects may include fatigue, headache, and nausea. Steroids may be prescribed for a short time to help with these side effects. Patients usually go home the same day but may be admitted to the hospital for closer observation if necessary.
Barrow offers two forms of stereotactic radiosurgery: Gamma Knife and CyberKnife. Each form is usually referred to by its specific name.
Depending on your tumor type, chemotherapy may be recommended as part of your treatment plan. Chemotherapy is medicine that kills tumor cells.
For patients with a newly diagnosed glioblastoma (GBM), standard therapy (treatment) starts 2 to 4 weeks after surgery for tumor biopsy or resection. Treatment is given over 6 weeks and is a combination of daily oral chemotherapy pills (temozolomide) with radiation treatments. This is followed by 12 monthly cycles of temozolomide. A shortened course of 3 to 4 weeks of treatment is considered in some instances for older patients and is at the discretion of your treating doctors.
Temozolomide is a chemotherapy pill, which is taken at home for 42 days, starting the night before or the same day as your brain radiation. Radiation treatments are given daily Monday through Friday at the Radiation Oncology Department, except for holidays. However, temozolomide is taken continuously for 42 days, even on weekends and holidays. Typically, standard radiation therapy is given in 30 fractions (30 days) of treatment over a period of 6 weeks. Weekly blood tests are done during this time to be sure that you are safely tolerating the treatment. A follow-up MRI brain scan is done 3 weeks after completion of your radiation and chemotherapy. This scan is used to monitor your tumor for any growth or changes, since the start of radiation therapy. Ideally, the MRI is done the same day as a follow-up appointment with your neuro-oncologist. At this follow-up visit, the plan for monthly chemotherapy will be discussed. Temozolomide is taken for 12 cycles for 5 days once every 28 days (12 monthly cycles). The dose of the temozolomide increases during these cycles. Blood tests are done once or twice monthly at this time.
Possible Side Effects of Temozolomide
- Constipation or diarrhea
- Decreased appetite
- Changes to your blood tests (low platelets or low white blood cells)
If blood cells are reduced, your chemotherapy dose may be decreased or your next cycle delayed to allow further recovery of your blood counts.
To prevent nausea, ondansetron or similar medicine will be prescribed and is to be taken 30 to 60 minutes prior to each dose of chemotherapy and can be taken again 8 to 12 hours later if you have nausea. If you have nausea or vomiting, please contact your neuro-oncologist, as a new medication can be ordered to help with your nausea.
To prevent constipation related to your chemotherapy, you will be instructed to take polyethylene glycol (MiraLAX) daily on days when you are taking your chemotherapy. You should contact your neuro-oncologist if you are unable to have a bowel movement for more than 3 days or if you develop abdominal discomfort or diarrhea. Additional medications can be ordered, if needed. Similar treatment has been routinely applied to patients with anaplastic astrocytoma (AA) and is often used for low grade gliomas (grade II) following surgery or if the tumor progresses.
For more information on Temozolomide, visit the ABTA website at ABTA.org or ChemoCare.com.
Most chemotherapy medicine are cytotoxic medicine and work by destroying tumor cells. These chemotherapies disrupt the tumor cells ability to reproduce themselves to slow or stop tumor growth. Examples of cytotoxic medicine include: Carmustine (BCNU), Lomustine (Gleostine) (CCNU), Gliadel wafer (BCNU discs that can be placed in the tumor cavity at the time of surgery), Temozolomide (Temodar), Cisplatin, Carboplatin, Etoposide and Irinotecan. They may be given as a single agent (alone) or in combination.
Of note, BCNU/CCNU, Gliadel wafer and Temodar have been approved by the Food and Drug Administration (FDA) for the treatment of high-grade brain tumors. The others listed have been approved for treatment of other cancers, and thus must be prescribed “off-label” for brain tumor use.
Tumor Treating Fields (Optune)
Tumor Treating Fields (TTFields) are low-intensity, alternating electrical fields that interfere with cancer cell division, which slows or stops cancer cells from dividing and may destroy them. Optune® is the name of the device that delivers TTFields.
Optune is a wearable and portable device that can be incorporated into daily life. Optune is FDA-approved for adults with glioblastoma multiforme (GBM). Optune is prescribed by certified physicians as part of a treatment plan for the appropriate GBM patients. For newly diagnosed GBM, Optune is used together with the chemotherapy Temozolomide (TMZ) after surgery and radiation with TMZ. For recurrent GBM patients, Optune can be used alone once treatment options like surgery and radiation have been exhausted.
How does it work?
When the device is turned on, it creates low-intensity, wave-like electric fields called Tumor Treating Fields (TTFields). These TTFields are delivered by transducer arrays to the location of
the GBM tumor. TTFields interfere with GBM cancer cell division. This action slows or stops GBM cancer cells from dividing and may destroy them.
In clinical trials, Optune has not been proven to cure GBM. However, in a large clinical trial of patients with newly diagnosed GBM, using Optune with chemotherapy was proven to extend
survival and maintain quality of life compared to TMZ alone. Approximately half of the patients who used Optune with TMZ were alive at 2 years compared to 31% who were on TMZ alone.
Adding Optune to the chemotherapy temozolomide (TMZ) more than doubled survival for newly diagnosed GBM patients at five years compared to TMZ alone (13% vs 5%).
When Optune is used with TMZ, side effects can be:
- Low blood platelet count
- Scalp irritation
When using Optune alone, side effects include:
- Scalp irritation
For more information, discuss this device with your healthcare professional or visit the website Optune.com.
Targeted Drug Therapy
Targeted drug treatments focus on certain defects within tumor cells. By blocking these defects, targeted drug treatments can cause tumor cells to die. Many targeted therapies are still being studied in clinical trials.
One targeted drug therapy used at Barrow to treat brain tumors is called bevacizumab (Avastin). This drug is injected into the vein about every 14 days and may be ordered by your neuro-oncologist. It is given with chemo or alone as a part of your treatment.
Tumor Molecular Profiling
Molecular profiling is a way to test tumor cells to look for mutations (changes) in the tumor’s genetic makeup. These changes may help tailor treatment with chemo, targeted treatment, or
clinical trial options. This is a promising area of brain tumor research to identify targets to treat in a tumor. Your oncology team and neurosurgeon can talk with you about the details of the testing when you are in their office.
Doctors, scientists, nurses, and coordinators at the Ivy Brain Tumor Center carry out research studies in special research labs and also in clinical trials involving patients. Research studies help us to better understand how brain tumors grow and behave with certain treatments. Clinical trials help us to discover better ways to diagnose and treat patients with brain tumors. The main goal is to find a cure for brain tumors. We may offer you participation in a clinical trial as part of your treatment.
Standard Treatment versus Clinical Trials
Standard treatment is the best agreed upon treatment at the time of your surgery. Standard treatment changes over time as doctors learn from research, and the type of standard treatment depends on the kind of tumor you have.
Clinical trials test new drugs, equipment, and treatments that the U.S. Food and Drug Administration (FDA) has not yet approved, as well as new surgery techniques. Clinical trials also may test a new drug with standard treatment that is already FDA approved. We may offer a clinical trial to people who have new tumors as well as to those whose tumor has returned. For the most up-to-date information on clinical trials being conducted around the country, please visit the clinical trials portal of the U.S. National Institutes of Health.
The Ivy Brain Tumor Center at Barrow Neurological institute is home to the largest Phase 0 clinical trials program in the world.
The Phase 0 trial’s goal is to see if a study drug or drugs—new or already approved for other tumor types—is taken up by your tumor. When you are told you will require surgery to remove a growing tumor, a Phase 0 trial may be offered to you.
The process starts by identifying what study drug may work in your individual tumor. This is done by looking at the tumor from your last surgery and verifying that you have specific tumor genes for the study drug to target. If we find a drug match to your individual tumor, you would take a study drug for a short amount of time before surgery.
After surgery, the Ivy Brain Tumor Center scientists will verify if there was drug in your tumor, cerebrospinal fluid (CSF), and blood. They will also look for a change in your tumor cells. If so, you would be offered a treatment trial phase of the drug, in hopes to stop the tumor from growing back.
The benefits of the Phase 0 trial include:
- Personalized treatment for your unique tumor
- Because you are given a “micro dose” of the drug or drugs, there is a lower chance of side effects
- You will have results within a few weeks of surgery. If the Phase 0 study does not have the desired effect, you won’t lose time on other treatment.
For brain tumor patients facing the fight of their lives, no stone should be left unturned. Our team treats more brain tumor patients than any hospital in the nation, and the Ivy Brain Tumor Center’s portfolio of early-phase clinical trials serves as a resource for the world’s brain tumor community. Within 36 hours of a Trial Screening Request, our team assesses a patient’s suitability for our clinical trials program, as well as provides additional support to the physicians managing these cases. Patients enrolled in our studies are not required to transfer their care to our Center, as our philosophy is to partner with, not replace, their treatment team.
Trial Screening Requests are provided at no cost and, for patients we determine to be eligible for a clinical trial, the Ivy Brain Tumor Center covers all costs associated with study participation.
Many people find that talking with others in a similar situation can help with the stress. It can also provide useful insight and refreshing perspectives.
Barrow Brain Tumor Support Group
Brain Tumor Survivor/Caregiver Education Day
This is a day dedicated to bringing brain tumor survivors and their caregivers together to learn about the latest treatments, coping mechanisms, and symptoms management after brain tumor diagnosis. Attending these events is also a great way to connect with other survivors and caregivers. Topics vary from each event, which we host twice a year—once in the spring and once in the fall—on the St. Joseph’s Hospital and Medical Center campus. If you are interested in learning more about this program, please contact Jaclyn Garcia at (602) 406-4429.
Southern Arizona Brain Tumor Support Group
This support group is open to people with brain tumors, their family members, and their friends. Group members have the chance to meet others with similar issues to discuss problems, ask questions, and learn new information about topics related to brain tumors.
University Medical Center
University Campus, Room 4978
1515 North Campbell Avenue, Tucson, Arizona
Date: Meets the 2nd Wednesday each month (10:30 AM to 12:00 PM)
Contact: Marsha Drozdoff, LCSW, ACSW at (520) 694-4605 or Mash.Drozdoff@AUHealth.com.
Caregivers Support Group at Barrow
Grief Support Group
St. Joseph’s hosts a grief support group every other Wednesday in the Mercy Conference Room. The group is led by a chaplain. Please call (602) 406-3275 for times and dates.
Cancer Support Community Arizona (Formerly The Wellness Community of Arizona)
The Cancer Support Community provides a full range of support programs at no cost for people with cancer and their loved ones in a comfortable home-like setting. It offers drop-in and ongoing support groups led by professionals. It also offers networking groups for people with specific types of cancer, educational workshops, exercise activities, stress-management sessions, lectures by experts in the field of oncology, and social gatherings—all while helping people maintain a sense of humor, joy, and hope.
360 East Palm Lane
Phoenix, AZ 85004
Contact: Call (602) 712-1006
Barrow Connection Outreach Program
Barrow Connection is committed to enriching the lives of children and adults with neurological disabilities by facilitating:
Contact: Call (602) 406-6280
Provides lodging for adult cancer patients from out of state or outside the Phoenix area while they receive treatment in Phoenix. Patients and caregivers alike find comfort and support in one another.
336 East Willetta Street
Phoenix, AZ 85004
Contact: Call (602) 388-4920 or e-mail email@example.com
Arizona Palliative Home Care
Home health services for adult patients who are mainly homebound.
Program benefits include:
- Coordination of care
- Rehabilitation therapy and services
- Education and family caregiver support
- Community resource referrals
- Support from a nurse 24/7 by phone
1510 E. Flower Street
Phoenix, AZ 85014
Contact: Call (602) 212-3000
Gray Matters Foundation
The Gray Matters Foundation is dedicated to love, kindness, and the celebration of life. This foundation supports each patient as an individual.
Contact: Call Lanette Veres (623) 205-6446 or e-mail firstname.lastname@example.org
Brain Tumor Organizations
American Brain Tumor Association
This nonprofit association is dedicated to support, research, and education of patients and caregivers across the U.S. Educational material is available for free on their website.
Contact: Call 1-800-886-2282
National Brain Tumor Society
National Brain Tumor Society is the largest, most influential nonprofit that is fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. They drive a multifaceted approach to aggressively influence and fund strategic and collaborative research, and advocate for public policies in order to achieve the greatest impact, results and progress. Education material can be downloaded from their website free of charge.
The rest of this handbook is a 7-chapter booklet about brain tumors that contains valuable information for people with a newly diagnosed brain tumor, long-term brain tumor survivors, and family members. Various sections discuss emotional aspects of the diagnosis, fertility issues, financial concerns, long-term care planning, and much more. Frankly Speaking About Cancer: Brain Tumors is given to you on behalf of Barrow Neurological Institute, and reprinted with permission from the Cancer Support Community and the National Brain Tumor Society. We hope you will turn to this handbook time and again for helpful additional information.
We encourage you to find out all you can about your brain tumor. Write down your questions and bring them to your doctor visits. As you collect answers from your treatment team, take notes or ask a family member to come along with you on the visits. The more you and your family know and understand about each part of your care, the more confident you will feel when it comes time to make treatment decisions.