Understanding Glioblastoma Treatment
- Chris Cook, a 40-year-old triathlete from Michigan, was diagnosed with a type of brain tumor called a glioblastoma after experiencing a strange taste in his mouth while running and passing out. His hope, loved ones, faith in God, and medical team helped him power through adversity.
- He underwent surgery, radiation, and chemotherapy before concluding his treatment earlier this year. Now he gets followup MRI scans every two months. However, his scans have been showing up as “clear” since completing his treatment,
- When it comes to brain tumors, as new treatment approaches are continually being explored through clinical trials, the standard of care for glioblastoma has remained largely consistent since 2005. It combines maximal safe surgical resection (surgery to remove as much of the cancer as possible) followed by chemotherapy and radiation.
- The average survival rate is 15 months with treatment and less than six if left untreated. While there is a five-year survival rate of averaging 6 percent, those individuals will never be cancer-free. They must continue receiving radiation and chemotherapy for the rest of their lives.
Since undergoing six weeks of radiation, 42 consecutive days of chemotherapy, and then chemotherapy every 28 days for 12 months, Cook ultimately completed his treatment in May 2024—about a year and five months after he experienced his first symptom.
Read MoreCook’s ability to talk returned at the emergency room and following testing, he was discharged from the hospital. However, doctor’s said he possibly suffered a seizure and he later needed to undergo a brain MRI, which found a mass in his head.
He told TODAY.com that his doctor initially told him that he likely had a year left of his life, he chose to get a second opinion at The University of Texas MD Anderson Cancer Center.
Two months after his running incident that sent him to the ER, he underwent a lengthy surgery to remove most of the 1.54-centimeter tumor.
Amid treatment, Cook and his wife decided to get married in September 2023.
Since completing his radiation and chemotherapy treatments, he’s had a “clear” MRI, but he’s not yet “in remission” and continues to get scans every two months.
Cook praises his doctors, outlook on life, and God for offering him a “really good chance” at trying to beat glioblastoma.
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- Understanding the Treatment Path for Glioma Patients
- New FDA Approved Vorasidenib for IDH Mutant Gliomas
- Remembering Senators Ted Kennedy and John McCain Who Both Died on This Day of Glioblastoma; What Are the Treatment Advances?
The health enthusiast also praised his loved ones and his dogs for giving him the strength to push through adversity, saying, “I do believe if you have very specific reasons for why you want to be here, it adds to the fuel for you to want to fight,” Cook says.
“For me, there’s no doubt that it’s affecting how I’m doing.”
Speaking to MD Anderson Cancer Center about his live-saving surgery, which took nine hours and involved the right middle cerebral artery, Cook said, “My ninja did a great job. Our lives collided for her to save mine.
“As a surgeon, she didn’t just become a ninja; she became a samurai. And instead of a sword, she has a scalpel and knows how to operate with the best of them.”
As for how his treatment plan went, Cook said, “[Him and his doctor have a true partnership. She keeps expectations real, keeps me centered about the medication I’m taking, and does a great job of coaching me.”
Cook continued, in an effort to further comment MD Anderson Cancer Center, “It’s humbling how these professionals are so compassionate and genuinely care for me.
“Everyone who is going through cancer hopes that miracles are true. I met an entire team of miracles with my doctors, nurses and dietitians.”
He concluded, “The success of my surgery made it possible for me and Essie to get married on Sept. 30, 2023. Everyone talks about bucket lists. Mine is all about the people who matter in my life and letting them know how amazing they are to me.”
What Is Glioblastoma?
Glioblastoma (GBM) is a type of glioma and is the most common form of brain cancer. The glioma is a growth of cells that look like glial cells. It grows rapidly and is in the brain, the most protected part of the body. This means surgery should be performed swiftly, and there are few drugs that can reach the tumor because of the blood/brain barrier. While targeting the cancer cells, doctors must target each one individually to slow the tumor growth because the cells are not all similar or heterogeneous.
Surgery often cannot remove all the cancer because of the way the tumor burrows into the brain. That means the tumor may start to grow again soon after surgery.
Dr. Jon Weimgart from Johns Hopkins Comprehensive Brain Tumor Center told SurvivorNet that glioblastoma is a “grade 4 glioma brain tumor.”
When it comes to brain cancers, they are “graded” from 1 to 4 with 4 being the more aggressive form of brain cancer. According to Moffitt Cancer Center, glioblastomas are always classified as grade 4 brain cancer because this type of cancer is an aggressive form of astrocytoma a type of cancer that can form in the brain or spinal cord.
“Despite all the advances in treatment, we still don’t understand what causes GBMs,” says Dr. Weingart.
Glioblastoma is not hereditary, it’s diagnosed in adults more than children, and is slightly more common in men.
Former U.S. Senators John McCain and Ted Kennedy, and son of President Joe Biden, Beau Biden, were all diagnosed with glioblastoma.
Glioblastoma Risk Factors and Symptoms
Glioblastoma risk factors can include:
- Prior radiation exposure
- Gender, men are more likely to get glioblastoma than women
- Age, people 50 years or older
- Certain genetic syndromes, including neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease
Symptoms for glioblastoma can vary depending on the area of the brain where the tumor begins and spreads and its growth rate, according to MD Anderson Cancer Center. But common symptoms for glioblastoma can include:
- Headaches
- Seizures
- Changes in mental function, mood or personality
- Changes in speech
- Sensory changes in hearing, smell and sight
- Loss of balance
- Changes in your pulse and breathing rate
The Grading System of Gliomas
There are various types of brain cancers and tumors that someone may be diagnosed with, so it’s important to understand that a glioma is a tumor originating in the central nervous system (CNS), specifically in the brain or spinal cord. A glioma originates in glial cells. Glial cells are supportive cells in the brain that protect and maintain the neurons. These types of tumors can either be benign (non-cancerous) or malignant (cancerous).
“Glioma is a broad term that refers to a whole range of different types of primary brain tumors,” Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, tells SurvivorNet.
“They’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body,” Dr. Miller continued.
Glioblastoma (GBM) is the most aggressive and lethal form of primary brain tumor. Classified as a Grade 4 glioma by the World Health Organization (WHO), glioblastoma presents significant challenges for treatment due to its highly invasive nature, rapid growth, and resistance to most conventional therapies.
Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
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Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important.
Meanwhile, gliomas are graded on a scale of I to IV, with higher grades indicating a more aggressive tumor. This grading is based on several factors including the type of glioma, the genetics of the cancer, as well as the appearance of the tumor cells under a microscope. The more abnormal the cells look, the higher the grade, and the faster the tumor is likely to grow and spread. Here’s a quick overview:
- Grade I-II gliomas – These are considered low-grade and tend to grow slowly. “The grade one is a very indolent, benign tumor that basically can be cured with surgery alone,” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.
- Grade III gliomas – These are considered high-grade and tend to grow more rapidly. Grade III gliomas are typically classified as malignant and typically require more aggressive treatment which can include surgery, radiation, and chemotherapy.
- Grade IV gliomas – These are the most aggressive gliomas which are locally aggressive and require treatment intensification. Glioblastomas are the most common grade IV glioma, “which is by far the most well known and most feared tumor in the lay population and quite frankly, the medical population as well,” Dr. Friedman explains.
Although Grade IV gliomas are the most aggressive glioma and may require several types of treatment including surgery, radiation, and chemotherapy, there can be challenges in treating low grade gliomas as well. When making decisions on treatment, several factors are taken into consideration including location of the tumor, ease of surgery and ability to resect, neurologic deficits, patient age, tumor size, and overall health.
Glioblastoma Treatment
MD Anderson Cancer Center says the standard treatment for glioblastoma “starts with surgery to remove as much of the tumor as safely as possible.”
However, the tumor cannot be completely removed with surgery as “glioblastoma usually forms microscopic branches that spread into different parts of the brain.”
The center explains further, “After surgery, patients usually get a combination of chemotherapy and radiation therapy, followed by chemotherapy alone. Elderly patients and/or those who have little to no ability to care for themselves (such as bathing, dressing or feeding themselves) may not be able to withstand the combined chemotherapy and radiation therapy phase of treatment. In these cases, they may receive a modified combination or just one of the two therapies.
Additionally, the average survival rate is 15 months with treatment, and less than six if left untreated, according to the National Cancer Institute. And while there is a five-year survival rate of approximately 6%, those individuals will never be cancer-free and must continue receiving radiation and chemotherapy for the rest of their lives.
WATCH: New hope is on the horizon for those battling glioblastoma.
The biggest breakthrough in the fight against glioblastoma came in 2002 when the FDA approved temozolomide (commonly sold under the brand name Temodar) for use in patients. It’s a chemotherapy drug that patients take after surgery and radiation.
It is also one of just five FDA-approved drugs that treat glioblastoma, along with lomustine (brand name Gleostine), intravenous carmustine, carmustine wafer implants and bevacizumab (brand name Avastin).
And for those patients who are not well enough for surgery, “radiation may be used to destroy additional tumor cells and treat tumors,” Dr. Weingart said.
Dr. Daniel Wahl, professor of radiation and oncology at University of Michigan, notes that the downside to all of this is that there is no cure, just a delay.
“Outcomes for these patients are still suboptimal. What I tell my patients is that we have these effective treatments but what they do is they delay the time to when this tumor comes back. Only in exceptional circumstances would we ever talk about getting rid of one of these cancers a few.”
Targeted drug therapies include the bevacizumab (Avastin) drug, an option available to individuals who have not responded to other treatments. The drug blocks glioblastoma cells from sending requests for new blood vessels. The blood vessels feed and allow tumors to grow.
Avoiding Provider Bias – Is Your Doctor Understanding You?
While your doctor has undergone years of training and practice, they are still human, and may come with their own set of biases that can impact how they treat patients.
To combat these biases and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear. To better understand how you should approach conversations with your doctor, we previously spoke with Dr. Dana Chase, gynecologic oncologist at Arizona Oncology.
According to Dr. Chase, physicians, like many of us, can be a bit biased when seeing patients. She made it clear that these biases are rarely sinister, but rather unconscious and more subtle.
She explained, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks we might make certain assumptions, and we might not even know that we’re making these assumptions.”
Let’s Talk About Provider Bias
Clearing up misconceptions is important, but so is understanding what your doctor is telling you, Dr. Chase noted. Overall, she advises women to speak up and ask questions when they don’t understand something.
“It’s never a bad thing to ask for something to be repeated, or to ask the doctors to explain it in different terms.”
So next time you go to your physician, speak up if you need clarity, so your doctor can understand you and you can understand them.
Contributing: SurvivorNet Staff
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