Understanding Glioblastoma
- Elliot Godfrey was diagnosed with Glioblastoma (GBM) at age 42, after wrongly thinking his headaches were stemming from the exhaustion and stress of being a new dad.
- He has since had 95% of the tumor in his brain removed and is undergoing six weeks of chemotherapy and radiotherapy. Godfrey is now raising money in hopes of getting new, life-extending treatment.
- Glioblastoma multiforme (GBM) is the most aggressive form of brain cancer. It grows rapidly, infiltrates surrounding brain tissue, and can be challenging to treat.
- The standard approach to glioblastoma typically involves surgery first, if possible. Additional treatments may include chemotherapy, radiation, or a new approach called tumor treating fields (Optune).
Glioblastoma (GBM) is the most aggressive and deadly type of primary brain tumor, designated as a Grade 4 glioma by the World Health Organization (WHO). Its highly invasive behavior, rapid progression, and resistance to standard treatments make it exceptionally difficult to manage effectively.
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“They literally called it the terminator cancer – the survival rates and the reality of living with this hit really hard.”
After undergoing a triumphant surgery to remove 95% of his tumor, just two days after being diagnosed, Godfrey was determined to continue fighting the disease to be alive “for as long as possible” for his son.
Godfrey, who praises his wife for her support throughout his brain cancer journey, is now enduring six weeks of chemotherapy and radiotherapy
Now, he insists on doing “absolutely everything” he can “to increase my chances of long-term survival.”
He explained, “I’ve gone onto a diet; I’m out running; I’m training. We have to keep our foot on the gas. I’m trying to take myself as far into the expected survival as I can because I can’t bear to think that’s how long I’ve got.”
“Doctors say if they didn’t have my notes, they wouldn’t believe I had a glioblastoma. I feel like for someone with a glioblastoma, grade four, unmethylated, wild type, I’m doing a pretty good job … just trying to keep positive energy and kill it with kindness.”
However, Godfrey is hopeful and sees “glimmers of light” when it comes to his future treatment plan.
He explains on his GoFundMe page, “Glioblastoma is so rare that it receives little state funding and almost no private investment. In fact, despite the amazing care I’m getting from my NHS [England’s National Health Service] team, the standard NHS treatment hasn’t changed for 20 years. Fortunately, international centers are now offering promising approaches and new clinical trials are starting all the time, leading to many long-term survivors living relatively normal lives.
“I’m young, I’m fit, I have everything to live for and the support of a loving network of family and friends – statistically all of these will help me reach long term survival. I want to be Aein’s dad and Jess’s husband for as long as I possibly can. And who knows, thanks to breakthroughs in fields like AI and personalized medicine, there may yet be more options on the horizon that can contain these tumours indefinitely.”
Godfrey added, “I just need time. With your help I want to access treatments not available in the U.K. that could give me a real fighting chance.”
According to SWNS, Godfrey says he hopes to get a Tumour Treating Fields therapy in Germany, which involves him wearing battery-powered cap to stop cancer cell division.
Understanding Glioblastoma
Glioblastoma multiforme (GBM) is the most aggressive form of brain cancer. It grows rapidly and infiltrates surrounding brain tissue, making it challenging to treat. A diagnosis of glioblastoma is indeed overwhelming, but understanding your treatment options can empower you to make informed decisions about your care.
After you’ve had a full work-up, experts say getting a consultation at a treatment center that sees a lot of patients with brain cancer can be an extremely valuable step.
Dr. Randy Jensen, a neurosurgeon at Huntsman Cancer Institute in Salt Lake City, tells SurvivorNet that the standard of care for glioblastoma is typically to start with surgery.
“The standard of care for glioblastoma is to start off with a maximal safe resection, and that means having your surgeon pull out all the stops of anything they can do to maximize resection [removal],” Dr. Jensen explains.
The Standard of Care for Glioblastoma
While surgery is often where treatment starts, the treatment path for glioblastoma requires a comprehensive approach involving multiple medical specialties. Your care team may include neurosurgeons, medical oncologists, radiation oncologists, neuro-oncologists, and supportive care specialists.
The treatment approach for glioblastoma may consist of the following steps.
- Surgery: The first step in treatment is often surgical removal of the tumor, also known as resection. The goal of surgery is to remove as much of the tumor as possible while preserving neurological function. Complete removal is often difficult due to the tumor’s infiltrative nature, but reducing the tumor size can improve the effectiveness of subsequent treatments. In cases where surgery is not possible due to the tumor’s location, a biopsy may be performed to confirm the diagnosis.
- Radiation Therapy: Following surgery, most patients undergo radiation therapy to target any remaining cancer cells. Radiation uses high-energy X-rays or protons to damage the DNA of tumor cells, preventing them from growing and dividing. It is typically administered five days a week over a period of six weeks. Radiation therapy is a crucial component in slowing tumor progression and improving survival rates.
- Chemotherapy: Temozolomide (TMZ) is the standard chemotherapy drug used in glioblastoma treatment. It is taken orally and works by interfering with the tumor cells’ ability to replicate. TMZ is often used in combination with radiation therapy (concurrent chemoradiation) and then continued as maintenance therapy for several months.
- Tumor Treating Fields (TTFs): TTFs are a newer, non-invasive treatment option that uses alternating electrical fields to disrupt cancer cell division.
Dr. Jensen explains that after surgery for brain cancer, a tumor board meeting often occurs, where doctors with different specialties meet to assess the case together and decide the best way to proceed with treatment.
The purpose of the tumor board is to give brain cancer experts with different specialties the opportunity to discuss and decide on the best possible treatment approach.
Side Effects of Glioblastoma Treatment
Each glioblastoma treatment comes with potential side effects. Your medical team will work with you to manage these effects and improve your quality of life.
Surgery side effects can include:
- Swelling in the brain (edema), which may require steroids to reduce inflammation
- Neurological deficits, such as difficulty speaking, memory problems, or muscle weakness, depending on the tumor’s location
- Infection or bleeding at the surgical site
Radiation side effects can include:
- Fatigue, which can persist for weeks after treatment ends
- Hair loss in the treated area
- Skin irritation or redness
- Cognitive effects, such as difficulty concentrating or memory problems
Chemotherapy side effects can include:
- Nausea and vomiting
- Increased risk of infections due to lower white blood cell counts
- Fatigue
- Low blood platelet levels, which can increase the risk of bleeding or bruising
Tumor Treating Fields (TTFs) side effects can include:
- Skin irritation from the transducer arrays
- Mild to moderate headaches
- Scalp sensitivity
- Psychological adjustment to wearing the device for extended periods
When Are Tumor Treating Fields Used?
Tumor Treating Fields (TTFs) represent an exciting advancement in glioblastoma treatment. This therapy is designed to slow tumor growth without affecting healthy brain tissue.
TTFs use low-intensity, alternating electric fields to disrupt cancer cell division. This is achieved through a wearable device that delivers continuous therapy on the scalp. These fields interfere with the tumor cells’ ability to multiply, ultimately slowing or stopping tumor progression.
Two major clinical trials, EF-11 and EF-14, demonstrated that TTFs provide a survival benefit for glioblastoma patients:
- EF-11 Trial: This trial focused on recurrent glioblastoma and found that patients receiving TTF therapy had comparable survival rates to those receiving chemotherapy, but with fewer side effects
- EF-14 Trial: This trial demonstrated that newly diagnosed glioblastoma patients who used TTFs alongside standard chemotherapy had significantly improved survival compared to those who received chemotherapy alone
TTFs may be recommended in the following scenarios:
- Newly Diagnosed Glioblastoma: After surgery, radiation, and chemotherapy, TTFs can be integrated into the treatment plan to enhance survival rates. The device is typically used continuously for at least 18 hours per day to maximize its effectiveness.
- Recurrent Glioblastoma: For patients whose tumors have returned, TTFs may be an option to extend survival and manage disease progression.
Your healthcare team will assess your overall health, tumor characteristics, and previous treatments to determine if TTFs are suitable for you. Factors such as your ability to wear the device consistently and your comfort with its use will also be considered.
The Future of Glioblastoma Treatment
Research into new glioblastoma treatments is ongoing.
Some promising areas of focus include include immunotherapy and targeted therapies.
Clinical trials also offer access to experimental therapies that may improve outcomes. Patients interested in participating in clinical trials should discuss options with their oncologists.
Questions for Your Doctor
If you have been diagnosed with glioblastoma, here are some questions you may consider asking your doctor:
- What are the treatment options in my case? Am I eligible for surgery?
- What are the risks and benefits of the recommended treatment?
- What are the side effects of the recommended treatment?
- What’s the likelihood that insurance will cover the recommended treatment?
Contributing: SurvivorNet Staff
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