Arjun Kandpal
Age 28 · Male
""There were days I could not recognize my reflection. Days when my family cried quietly so I wouldn't hear them. But treatment gave me back something I thought I had lost forever: time. It is time once more to laugh, to enjoy my mother's cooking, and to bask in the sunlight. No remedy can quantify what that signifies. — Arjun, 28 | DMG Patient"
"After months battling rare brain cancer, Arjun's first words to his mother were a miracle—he asked for chai."
Against All Odds: A 28-Year-Old's Battle with a Rare Brain and Spinal Tumor
When Arjun was diagnosed with a rare and aggressive brain tumor at just 28 years old, the odds were stacked heavily against him. He had been living a normal life full of energy, plans, and ambitions when everything changed in an instant.
His diagnosis was Diffuse Midline Glioma (DMG), a high-grade tumor that had taken root in his thoracic spinal cord. It is one of the rarest and most difficult-to-treat forms of brain and spinal cancer, with a two-year survival rate of less than 10%. Most patients survive fewer than a few months, especially if the cancer spreads.
In September 2020, Arjun underwent surgery to remove the spinal tumor. The operation went as well as could be hoped, and he recovered with only minor neurological symptoms. For a brief period, life felt manageable again. He walked out of that chapter hoping the worst was behind him.
But three months later, the warning signs returned, first as weakness in his legs, then persistent hiccups, and a growing sense of exhaustion and mental fog. His condition deteriorated rapidly.
By January 2021, Arjun's family rushed him to the hospital in a state of confusion, barely responsive. Brain scans told a devastating story: the tumor had come back in his spinal cord, and this time it had also spread to the lining of his brain a rare and particularly dangerous form of spread called leptomeningeal metastasis. Historically, patients with this kind of spread survive only weeks to a few months.
His medical team moved quickly. Within days, they performed surgery on the spinal tumor again and also took a biopsy from the affected area near the base of his brain. Both confirmed the same aggressive Grade 4 DMG — the highest and most severe classification.
A New Treatment Path — One That Had Never Been Tried This Way Before
Conventional treatments had very little to offer. Standard radiation and chemotherapy approaches had not been shown to meaningfully extend survival in patients like Arjun. His doctors made a bold decision: to try a combination of epigenetic therapy — medicines that work by altering how cancer cells "behave" at a molecular level — together with immunotherapy, which helps the body's own immune system recognize and fight the tumor.
This combination had never before been used in a patient with this type of cancer spreading to the brain lining. It was uncharted territory.
The Long Road — With Setbacks, Adjustments, and Hope
The first weeks of treatment were difficult. Initially, one of the brain lesions grew slightly and Arjun developed complications including an imbalance in fluids and sodium in his body. His family watched anxiously, unsure what the days ahead would bring.
But by the third treatment cycle, something remarkable began to happen. Arjun's consciousness improved. His mind cleared. Cycle by cycle, his brain scans showed the tumors shrinking. By the sixth cycle, when radiation was complete, the lesions had reduced significantly. By the eleventh cycle — nearly eight months into treatment — Arjun walked back into life. He resumed normal daily activities, the confusion and fatigue replaced by clarity and energy.
By the end of treatment follow-up, what had started as two large, threatening lesions had shrunk by more than 94%. The spread along the brain lining, which had been visible on every scan, was no longer detectable.
16 Months of Extra Life — and a Legacy for Others
Arjun survived 20 months from the time of his diagnosis, and 16 months from the start of this novel treatment — a remarkable outcome for a disease where median survival with brain spread is often counted in weeks.
Eventually, the cancer found new pathways and returned elsewhere. But what Arjun experienced — and what his courage made possible — was not just personal survival. His case became the first documented report in the world showing meaningful regression of advanced DMG with brain lining involvement using this new treatment approach. His journey gave medical science a new direction to pursue, and gave hope to families facing the same devastating diagnosis.
At CancerFax, we believe every patient's journey carries within it the seeds of hope — for themselves and for those who will follow. Stories like this remind us why access to the right information, the right specialists, and the right treatment at the right time can make all the difference.
If you or a loved one is navigating a rare or complex cancer diagnosis, our team is here to help you explore every available option — across India and around the world.
Note for your team: The patient has been given a pseudonym ("Arjun") for the website since the original paper refers to him only as "Patient 1." You may adjust the name or keep it anonymous based on your editorial policy. All clinical facts are preserved accurately from the published research.
“"After months battling rare brain cancer, Arjun's first words to his mother were a miracle—he asked for chai."”
Why the Family Contacted CancerFax
With conventional options offering very little, Arjun's family needed to identify oncologists willing and able to explore novel treatment combinations — specifically, the emerging intersection of epigenetic therapy and immunotherapy in DMG. This required access to specialist clinical knowledge that was not available through standard referral pathways.
The family needed to know whether any emerging therapies — including epigenetic agents or immunotherapy — had shown any signal in DMG, even at an experimental level.
DMG in adults is rare. Finding a specialist who had both the expertise and the clinical flexibility to attempt a novel combination was the central challenge.
With leptomeningeal involvement, speed of access to the right clinical thinking was critical. Every week mattered.
"There were days I could not recognise my reflection. Days when my family cried quietly so I wouldn't hear them. But treatment gave me back something I thought I had lost forever: time."— Arjun, Patient
How CancerFax Helped
CancerFax supported Arjun's family in identifying specialist oncologists with experience in rare brain and spinal tumours, and helped ensure that Arjun's complex case history was clearly presented to support rapid evaluation and treatment planning.
Arjun's surgical reports, imaging, biopsy results, and neurological history were compiled and structured for immediate specialist review.
Oncologists with specific experience in high-grade glioma and rare spinal tumours were identified — specialists willing to consider novel combination approaches for a case where standard options had been exhausted.
Arjun's family were guided through a process that was both medically complex and emotionally overwhelming. CancerFax helped them understand the options being proposed and what the treatment pathway would involve.
Information about epigenetic therapy and immunotherapy combinations — and their emerging relevance to DMG — was sourced and presented to support informed decision-making.
Arjun's Treatment Journey
From diagnosis at 28 to a world-first clinical response — key milestones.
Arjun was diagnosed with DMG Grade 4 in his thoracic spinal cord at age 28. A disease with a two-year survival rate below 10%.
Surgical removal of the spinal tumour. Recovery was encouraging, with only minor neurological symptoms. A brief period of relative stability followed.
The tumour returned in the spinal cord and spread to the lining of the brain. Grade 4 DMG confirmed at both sites. Standard prognosis: weeks to a few months.
Surgery performed on the spinal tumour again. Biopsy taken near the base of the brain. Both confirmed aggressive Grade 4 DMG.
Arjun's clinical team made a bold decision: to attempt a combination of epigenetic therapy and immunotherapy — a combination that had never been used in DMG with leptomeningeal involvement. Uncharted territory.
By the third treatment cycle, Arjun's consciousness improved. His mind cleared. Cycle by cycle, scans showed the tumours shrinking. By cycle six, lesions had reduced significantly.
Eight months into treatment, Arjun walked back into daily life. The confusion and fatigue had been replaced by clarity and energy.
What had started as two large threatening lesions had shrunk by more than 94%. The leptomeningeal spread was no longer detectable. Arjun's case became the first documented report in the world of meaningful regression in this setting.
Every patient's treatment plan is individual. The pathway above describes this specific case — not a blueprint for others. Suitability for each treatment is determined by the treating clinical team based on each patient's individual clinical situation.
Where Arjun Is Today
Arjun survived 20 months from diagnosis — and 16 months from the start of this novel treatment. For a disease where median survival with leptomeningeal involvement is typically counted in weeks, this represented a remarkable and meaningful extension of life.
He returned to daily activities during his treatment, and experienced a period of clarity, energy, and time with his family that he had been told was unlikely.
Eventually, the cancer found new pathways and returned elsewhere. But what Arjun experienced — and what his courage made possible — extended beyond his own survival. His case became the first documented report in the world showing meaningful regression of advanced DMG with brain lining involvement using this novel treatment combination.
His journey gave medical science a new direction to pursue. It gave other families facing the same devastating diagnosis a reason to ask whether this option might be relevant to their own case.
“"There were days I could not recognise my reflection. Days when my family cried quietly so I wouldn't hear them. But treatment gave me back something I thought I had lost forever: time. It is time once more to laugh, to enjoy my mother's cooking, and to bask in the sunlight."”— Arjun, Patient
What Other Families Can Learn
Arjun's story is one of the most medically significant on CancerFax. It carries important lessons for families facing rare, aggressive, or treatment-resistant brain and spinal cancers.
Arjun's case showed that epigenetic therapy combined with immunotherapy could produce meaningful tumour regression in DMG — a cancer type where standard approaches have historically offered very little.
DMG is rare, particularly in adults. Finding oncologists with specific expertise — and the clinical flexibility to attempt novel approaches — required navigating beyond standard referral pathways.
With a disease progressing rapidly, every week without the right specialist input reduces options. Reaching a specialist team quickly — with a well-organised case file — is not a luxury but a necessity.
Arjun's willingness to try a novel approach — supported by his clinical team's boldness — produced the world's first documented report of this treatment response. His story will influence care for future patients.
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Frequently Asked Questions
This patient story reflects an individual treatment journey. Outcomes vary from patient to patient. The information on this page should not be taken as medical advice or a guarantee of similar results. Treatment suitability depends on diagnosis, disease status, prior therapy, molecular findings, overall health, and specialist medical evaluation. Names and identifying details may be modified to protect patient privacy. All clinical decisions must be made in consultation with a qualified, licensed physician with access to the patient's complete medical information.
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