Man, 52, Initially Dismissed Nausea and Mood Shift As Jet Lag Before Shock Glioblastoma Diagnosis

When recounting her story, Bassett admitted that she and her family were aware that Jason had become quieter, disassociated, and started to vomit, according to The Argus, but they initially assumed the changes could be written off as jet lag.

Thankfully, he saw his doctor and was advised to get an MRI, leading to his diagnosis.

Jason has since undergone radiotherapy and is now on a chemotherapy regime.

His 50-year-old wife, a nurse, has taken on the role of a caregiver for Jason, along with his children.

Recounting how things have changed for their family amid his glioblastoma fight, she said, “We used to share the responsibilities for all aspects of family life which is why we have all felt the impact of his diagnosis.

“Jason can’t be left alone. He forgets things like turning off the tap or leaving the light on.”

She continued, “I had some understanding of brain tumors, but I didn’t realize there are more than 100 different types of brain tumor, which makes them notoriously difficult to find effective treatments for.”

How Can Caregivers Care For Themselves?

When a loved one is diagnosed with cancer or another serious condition, it can turn your world upside down. If you’re taking on the role of primary caregiver, your attention will suddenly turn from your job and family to caregiving. And no matter how much you plan for your new role, the enormity of it can take you by surprise.

“Caregiving is a huge job. It’s going to impact your health and your physical well-being. It will impact your finances, your social life, your emotions, and your mental energy,” Amy Brown, nurse manager of Gynecologic/Oncology at Johns Hopkins Hospital in Baltimore, Maryland, previously shared with SurvivorNet.

Support for caregivers

With caregiving taking up a lot of your personal time away from work, school or other life duties, it’s important to realize that you may need help.

“I learned this the hard way myself,” Brown said. “I have been the caregiver to my dad for 12 years. And I’m a nurse and I’m designed and equipped to handle that, and I tried to do it myself and failed miserably.”

Brown stresses the importance of caring for yourself while you care for your loved one. In order to fully take care of someone, you need to feel your best.

Feeling fatigued or stressed at times can lead to bigger issues that could impact you, and that’s why it’s so important to not only prioritize your mental health, but also your physical health as well.

That’s why, if you start to feel the physical toll of being a caregiver, it’s so important to take some time to relax or even visit the doctor if things progress.

Check out SurvivorNet’s designated resources for cancer caregivers here.

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.

A Utah Brain Cancer Expert’s Quick Guide To The ‘Standard of Care’ Treatment Options For Glioblastoma

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.

1. 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.
2. 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.
3. 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.
4. 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

Learn more about SurvivorNet's rigorous medical review process.

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