Iowa Man, 25, Says Early Morning Nausea and Dizzy Spells Turned Out to Be an Early Warning Sign for Eventual Diffuse Midline Glioma, an Aggressive Brain Cancer

Jones, an Iowa diesel mechanic, recalls feeling perfectly healthy. His bloodwork was normal, and nothing seemed wrong—until the dizziness became persistent. “It all started when I realized I couldn’t lie flat on my back without feeling dizzy,” he explained.

By early in the year, the nausea had become routine. “I started waking up in the mornings and feeling very, very nauseous for no reason,” he told The Patient Stories. Soon after, one side of his face began to droop, prompting him to see a doctor.

An MRI revealed a 2-centimeter tumor lodged in his brainstem.

“It had fused to my brainstem walls,” Jones said.

The diagnosis: diffuse midline glioma, a rare and aggressive brain tumor that infiltrates surrounding tissue in ways that make it difficult to detect and treat.

Gliomas develop from glial cells—the supportive cells that protect and nourish the brain’s nerve cells. Diffuse gliomas, including midline gliomas, are considered malignant because of their tendency to spread and blend into normal brain tissue. Their aggressiveness varies, but all require careful monitoring and specialized treatment.

WATCH: Understanding Types & Standard of Care

Dr. Jacob Young, a neurosurgeon at UCSF, says, “rather than thinking of [diffuse midline glioma] as benign or malignant… they sort of fall on a continuum… we don’t often think about stage when we think about diffuse gliomas… we worry a lot more about grade and… certain mutations that are present.”

Jones says he found a clinical trial involving a condensed course of radiation therapy. While some details about Jones’ tumor have not been disclosed, including whether it has specific genetic mutations, we know some impacts of radiotherapy in glioma care.

Radiation remains one of the most effective treatments for glioma, but we now understand its long-term trade-offs far better. Even with highly advanced techniques such as proton therapy or hippocampal-sparing approaches, radiation can still cause subtle cognitive shifts years later, meaning changes in memory, processing speed, or multitasking that accumulate slowly over time.

“If I’m expecting this patient to still be here 20, 30 years from now, I have to consider there may be long-term toxicity that I want them to avoid, and that’s when I would advise against radiation, for example, or ask to push out radiation as long as possible,” Dr. Akanksha Sharma, a Neuro-oncologist at Sutter House California Pacific Medical Center in San Francisco, California explains to SurvivorNet.

Clinical trials help doctors discover more effective treatment methods. They also give patients a chance to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.

WATCH: Clinical trials can be lifesaving.

Despite the great benefits of clinical trials, they also come with risks (such as potential side effects that are not yet fully understood). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.

Roughly six months into Jones’ brain cancer journey, he says his tumor has shrunk. Although he’s seeing promising results now, his cancer journey is far from over, as gliomas tend to experience recurrence (return), sometimes happening soon after treatment or even years down the road.

“We see a lot of recurrence with the gliomas. Why does that happen? There are a lot of ideas,” says Dr. Randy Jensen, neurosurgeon at Huntsman Cancer Institute in Salt Lake City, Utah.

“We know that this is a diffuse [widely spread] disease. We hope that by doing surgery and then following with radiation and then chemotherapy, we will be targeting those cells,” Dr. Jensen explains.

“But we know that some of those [cells] aren’t getting full treatment. We also know that there are stem cells that seem to be the origin of some of these tumors that also may not be receptive to these treatments.”

It’s important to understand, though, that even at recurrence, there are treatment options for patients with glioma.

Better Understanding Jones’ Diagnosis of Diffuse Midline Glioma

Diffuse glioma is the most common type of glioma. These types of gliomas are graded based on how fast the tumor grows, how abnormal the cells look under a microscope, and how likely it is to spread within the brain. Low-grade tumors grow more slowly and may not need immediate aggressive treatment. Conversely, high-grade tumors grow quickly and often require a combination of surgery, radiation, and chemotherapy.

WATCH: Diagnosing Gliomas — Resections and the Grading System

Grading Diffuse Gliomas:

• Grade 1 – A slow-growing, usually well-defined tumor that often occurs in children; it does not typically infiltrate the brain the way other gliomas do.
• Grade 2 – A slow-growing but diffuse (infiltrative) tumor; the tumor blends into normal brain tissue, so it can’t be fully removed by surgery.
• Grade 3 – A faster-growing, more aggressive diffuse glioma; usually requires a combination of surgery, radiation, and chemotherapy.
• Grade 4 – The most aggressive form, growing and invading quickly; Requires intensive treatment; prognosis depends on molecular features, patient age, and overall health.

An Isocitrate dehydrogenase (IDH) mutation is a small change in a gene that helps your cells make energy. When this gene is altered, it creates a chemical that shouldn’t be there — and that chemical can help certain brain tumors grow. Doctors check for an IDH mutation because it’s one of the most important clues about how the tumor will behave and which treatments may work best.

Dr. Young highlights its significance, saying, “one of the key differentiations is whether these tumors have something called an IDH mutation… if there’s an IDH mutation present and it’s a diffuse glioma, they can no longer be considered glioblastomas, but they can still be grade four tumors.”

This means a tumor can appear aggressive under the microscope yet behave differently depending on its genetic makeup.

Gliomas Can Come Back After Treatment

We noted earlier that gliomas tend to recur. SurvivorNet’s glioma experts say there are a few risk factors that influence the likelihood of recurrence.

• Tumor Grade: High-grade gliomas tend to come back more quickly. Low-grade gliomas may lie dormant but can still return even a decade after diagnosis.
• Genetic Markers:
  • IDH Mutations often indicate a slower-growing tumor.
  • TP53 or ATRX Mutations may signal a greater risk of recurrence in some types of gliomas.
  • MGMT Promoter Methylation can be linked to predict a better responsiveness to certain chemotherapy and radiation drugs.
• Extent of Surgery: Removing a larger portion of the tumor can lower the risk of regrowth.
• Age: Younger individuals sometimes have more favorable genetic tumor profiles.
• Tumor Size: Larger tumors are more challenging to remove completely.

Patients are regularly monitored even after treatment ends to monitor any signs of recurrence. Routine imaging scans, such as MRIs, help monitor glioma patients during this critical phase of their cancer journeys.

“Recurrence is a real risk, and that’s why we do an MRI every two to three months after glioma surgery, so that we can see how our treatments are working and be able to try to catch any early sign of recurrence at the first sign of recurrence,” Dr. Jensen explains.

WATCH: Why do some gliomas come back?

When treating a glioma tumor that has returned, doctors have a few treatment options.

• Repeat Surgery (Re-resection): This may be recommended if the tumor is in an area where another operation is safe and beneficial. It can help relieve pressure and reduce symptoms if the recurrent tumor has grown.
• Radiation Therapy: This may include salvage radiation, or radiation given for the first time, or re-irradiation. More radiation is sometimes possible even if you had radiation before, particularly if the recurrent tumor is small and away from critical brain structures. Stereotactic radiosurgery (SRS) or proton therapy may help focus treatment on the tumor while sparing healthy tissue.
• Chemotherapy: Common drugs include temozolomide (TMZ), lomustine, carmustine, or multi-drug regimens (like PCV). Which drug is chosen often depends on what was tried before and any molecular markers in your tumor.
• Targeted Therapy & Immunotherapy: These treatments focus on specific genetic features, such as inhibitors aimed at IDH mutations or pathways like BRAF or NTRK. Immunotherapy approaches, still under study in clinical trials, aim to harness the body’s own immune system to fight the tumor.
• Tumor Treating Fields (TTFs): These are a specialized therapy mainly for glioblastoma. The approach uses low-intensity electric fields to disrupt cancer cell division.
• Clinical Trials: Trials offer access to experimental drugs, new combinations of existing therapies, or innovative techniques that are not yet widely available. They are often recommended because standard treatments may have limited effectiveness against recurrent tumors.
• Supportive or Palliative Care: This approach focuses on reducing symptoms and enhancing quality of life when aggressive treatment might no longer be an option.

Emerging Glioma Treatments Offering Hope

In recent years, some emerging treatments have been approved by the Food and Drug Administration, offering glioma patients hope, especially those with specific genetic mutations.

The U.S. Food and Drug Administration (FDA) recently approved dordaviprone, the first FDA-approved systemic treatment for H3 K27M-mutant diffuse midline glioma, a rare and aggressive brain tumor primarily affecting children and young adults.

The approval was based on data from five open-label clinical trials involving patients with recurrent H3 K27M-mutant diffuse midline glioma. The drug showed a 22% overall response rate and a median response duration of 10.3 months, with 73% of responders maintaining benefit for at least 6 months.

Dr. Howard Colman, a neuro-oncologist at the Huntsman Cancer Institute at the University of Utah in Salt Lake City, tells us that while medical advancements have significantly deepened our understanding of this disease and its treatment, there is still much research to be done to provide the much-needed hope in treating gliomas.

The FDA also approved a drug called Vorasidenib, which targets this mutation to improve treatment outcomes for patients with IDH mutant gliomas.

Vorasidenib is an oral pill that is taken once daily.

WATCH: Who Benefits From Vorasidenib?

Vorasidenib is an IDH inhibitor. The drug “is a type of precision medicine or targeted therapy that goes and affects just the tumor cells,” Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, tells SurvivorNet. Therefore, this drug should not affect normal cells that do not express this mutation. This leads to fewer side effects for patients and makes the drug very tolerable.

Some common side effects include:

• Fatigue
• Headache
• Diarrhea

What Patients Should Ask Their Doctor

When facing a glioma diagnosis, understanding the big picture can help guide decision-making. Consider asking your doctor:

• What grade is my tumor, and what features support that grade?
• Does my tumor have an IDH mutation or other genetic markers?
• How does my tumor’s molecular profile affect treatment options?
• How aggressive does this appear based on imaging and pathology?
• What is the recommended treatment plan for my specific tumor type and grade?
• How will we monitor for progression over time?

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