Alex was diagnosed with a grade-IV malignant brain tumor (glioblastoma) in April of 2016. After surgery at University of California – San Francisco (UCSF) and subsequent radiation and chemotherapy, Alex was cancer-free and recovered basically to 100% as soon as June of 2016.
The cancer recurred in January of 2017 after various complications and further surgery to remove treatment effect and address building liquid pressure in the brain. Although Alex had bad headaches at that time, subsequently, Alex was relatively pain free for the rest of the cancer’s life cycle.
In early July 2017, the symptoms dramatically became worse and Alex succumbed to the expanding cancer mid-month. Life expectancy for patients diagnosed with Alex’s grade of tumor is generally about 16 months, which coincides almost exactly with Alex’s case.
The medical team at UCSF is one of the best in the world, both from a treatment perspective (surgery, radiation, chemotherapy etc.) and from a research perspective. We felt very lucky that Alex was treated by a team of some of the top doctors in the field, and he was aware of that and comforted by it despite the severity of the diagnosis.
I have asked Dr. Nicholas Butowski, Alex’s neuro-oncologist and head of his medical team, to put together a synopsis of the disease for others to read. Links are also provided below for further reading about the disease, related cancer research, and UCSF. We hope that this information can provide clarity to his friends and anyone else with questions about this type of disease.
– George Maasry, Alex’s brother
Glioblastoma, also called “glioblastoma multiforme” or “GBM,” is an aggressive type of primary brain cancer. Primary brain tumors are cancers that originate in the brain. These tumors are very different from secondary brain tumors, which originally developed elsewhere in the body and spread (metastasized) to the brain.
Most of the time, doctors don’t know why a person gets a GBM. Brain cancer happens when normal cells in the brain change into abnormal cells and grow out of control. Brain cancers are named after the type of cell they start from. GBM starts in the “glial” cells of the brain. Glial cells provide the structural backbone of the brain and support the function of the neurons (nerve cells), which are responsible for thought, sensation, muscle control, and coordination. As GBM grows, it can spread into healthy parts of the brain. It can also cause brain swelling. Both of these things can cause symptoms. Infrequently, it can spread to other parts of the brain and/or the spinal cord and cause further symptoms relative to the part of brain and spine affected.
The most common symptoms include headaches; seizures; memory or thinking problems; muscle weakness; vision changes such as double vision or vision loss; language problems such as trouble finding the right word for something; and personality changes.
Usually right away if the doctor thinks a brain tumor might be GBM, he or she performs surgery to remove as much of the tumor as possible. Even after surgery, determining definitively that a tumor is GBM requires that a doctor look at a sample of the tumor under the microscope. The sample can show whether the tumor is GBM, a different type of brain tumor, or a sign of a different brain condition.
In some cases GBM may occur in a part of the brain where surgery is too risky, the GBM is too large for surgery to help, or the patient is too sick for surgery. In those cases the doctor may use a needle to take a small sample from the tumor for inspection under the microscope.
Treatment for GBM usually includes some or all of the following:
- Surgery – The goal of surgery is materially to take out as much of the GBM as possible. This can help with symptoms and help people live longer. Surgery carries an inherent risk in that it can hurt healthy areas of the brain too.
- Radiation Therapy – Radiation targets the area where the tumor was or is growing and it kills some of the cancer cells. Most people with GBM take radiation therapy after surgery.
- Chemotherapy – Chemotherapy is the medical term for medicines that kill cancer cells or stop them from growing. Most people with GBM take chemotherapy after surgery.
After surgery, doctors usually give radiation therapy and chemotherapy at the same time followed by up to a year of chemotherapy alone. Because GBM can cause seizures and brain swelling, doctors may prescribe medicines or preform surgery to treat these symptoms too.
One of the most challenging aspects of treating cancer, and specifically GBM, is that the therapies available cannot be targeted at only cancer cells. GBM itself is a terminal condition but early on in its life cycle it may not cause any significant problems for a patient; rather it is the treatments at that stage that are often most difficult to sustain.
During radiation therapy, the radiation is fired through healthy cells in order to target tumor and will affect and damage many of them, as well as other cells in the general area. Chemotherapy will target certain types of cells, such as fast-growing cells, for example by damaging their DNA, and therefore many healthy non-tumor cells like blood cells can also be affected. Even though these therapies are the most reliable treatments available in many cases, they can be very difficult, even in the best circumstances, for patients to endure and recover from.
In most people, GBM comes back after treatment – most within a year after initial diagnosis. If an imaging test shows changes in the brain after treatment, the changes could be caused by the GBM coming back, or they could be changes that happen in response to treatment. It can be hard to tell the difference between these changes. The doctor might do repeat imaging tests to see if the changes are cancer.
If GBM recurs or spreads, a patient might have more surgery, chemotherapy, radiation, or other treatments. Patients may also need medicines to help treat common side effects like swelling in the brain or seizures.
End of Life Care
In virtually all cases, GBM is a terminal illness, as the disease cannot be cured. Many of the treatments used for this disease are themselves very hard on patients and difficult to recover from, and at a certain point in the disease’s life cycle it will become the case that treatments will offer more harm than benefit. Deciding when to stop treating the cancer can be very difficult for the patient and family; but ending cancer treatment does not mean ending care for the patient. Rather, the care frequently transitions to “hospice” care, which is basically a new approach to treatment.
Hospice care is usually recommended when a person is unlikely to live longer than six months. Hospice care involves treatment of all aspects of a patient and family’s needs, including palliative care for physical symptoms (e.g. pain relief), psychological care for patient, caretakers and family, and even includes social and spiritual support systems.
The care may be given at home or in a hospice facility and usually involves multiple care providers, across the spectrum of a patient and family’s needs. Hospice is a difficult process for everyone, but it has as goal to reduce a family and patient’s suffering, and is often prescribed by doctors for GBM patients.
More information on hospice is available at www.hospicenet.org.
A clinical trial is a research study that tests the efficacy of new medicines and treatments. Often, participating in a clinical trial may or may not change a patient’s symptoms or help him/her live longer. But it nonetheless can give doctors more information about the disease being treated.
There are clinical trials for GBM all over the world. It is still a very deadly and very difficult disease to treat, but great strides are being made in recent years and some clinical trials have showed promise. Academic centers like UCSF stay on the cutting edge of the science and are the best points of information to learn about current clinical trials and their results.
Answers to common questions about clinical trials are also available from the American Society of Clinical Oncology (http://www.cancer.net/pre-act).
The Brain Tumor Center (BTC) at UCSF is one of the largest and most comprehensive programs for brain tumor treatment in the United States. It includes the Division of Neuro-oncology (clinical enterprise), the Brain Tumor Research Center (basic science labs), and the Division of Translational Research (tissue core and preclinical animal testing). The Center also offers social services and neuropsychological consultation, and has close ties with organizations sponsoring support groups and other resources for patients and their families.
Neuro-oncologists at the UCSF BTC treat adult and pediatric patients with primary brain tumors of all grades, including both newly diagnosed and recurrent malignant tumors. Strategies for maintaining local control of tumors after surgery include radiation therapy and medical therapy, as well as advanced imaging techniques to monitor the brain.
Our neuro-oncologists also seek to improve survival for adults and children with brain tumors through research treatment protocols (clinical trials) that use novel agents and strategies based on basic and translational research. These protocols are developed within the BTC and the UCSF Comprehensive Cancer Center, at government institutions, such as the National Cancer Institute, and in collaboration with other academic research centers and industry partners. Some of the strategies currently under investigation include an innovative new brain tumor vaccine, anti-angiogenic therapies targeting the blood vessels that nourish brain tumors, and several combinations of novel chemotherapeutic drugs for both high-grade and low-grade glioma, including how cannabis may play a role in future treatment or quality-of-life therapies. New drug-delivery strategies, such as convection-enhanced delivery, designed to bypass the blood-brain barrier and bring drugs directly to the tumor are also being evaluated.
The Division of Neuro-oncology is committed to performing studies of quality of life, fatigue, and the use of complementary medicine. A prospective study to establish baseline quality-of-life parameters for patients with high-grade gliomas is currently in development. Neuro-oncologists also work with members of the Division of Neuroepidemiology to evaluate population-based case series of adult patients with glioma in order to better understand how survival relates to factors such as personal and family medical histories, diet, smoking and alcohol consumption prior to diagnosis, and other demographic factors such as education. They also evaluate specific molecular characteristics of patients’ tumors to see if those characteristics can predict how certain patients will respond to a given therapy.
The Brain Tumor Center is currently funded by four major grants from the National Institutes of Health to support basic and clinical research for brain tumors. These include a Specialized Programs of Research Excellence award, a Program Project Grant, and two cooperative grants that fund consortia of institutions that conduct clinical trials for adults and children.
To enroll in clinical trials for brain tumors or find out more information, call (415) 353-7500 or see our clinical trials page for a list of current trials. You may also contact Dr. Nicholas Butowski at
Nicholas Butowski MD
University of California, San Francisco
Department of Neurological Surgery
505 Parnassus Ave. Rm. M779
San Francisco, CA 94143-0112
Phone: 415/353-2383 (academic)
Many organizations can provide further reliable health information about brain cancer, GBM and its treatment:
- National Cancer Institute www.cancer.gov/cancertopics/pdq/treatment/adultbrain/Patient
- American Society of Clinical Oncology www.cancer.net/portal/site/patient
- National Comprehensive Cancer Network www.nccn.com
- American Cancer Society www.cancer.org
- American Brain Tumor Association www.abta.org
- National Brain Tumor Foundation www.braintumor.org
- UCSF Neuro-Oncology http://neurosurgery.ucsf.edu/index.php/brain_tumor_center.html
– Nicholas Butowski MD