Against All Odds: A 22-Year Glioblastoma Survival Story
The Diagnosis: December 2002
Jorge's journey began with a seemingly routine day at the office that took a dramatic turn. He started speaking incoherently, prompting a concerned coworker to accompany him to the hospital. An MRI scan revealed what every family fears most: a brain tumor. Within the same week, Jorge underwent surgery, and the biopsy results confirmed the worst-case scenario—glioblastoma multiforme.
Glioblastoma represents one of medicine's most challenging adversaries. These aggressive tumors infiltrate brain tissue with tentacle-like projections, making complete surgical removal virtually impossible. The standard prognosis remains grim: median survival of 12-15 months, with less than 5% of patients surviving five years.
When Standard Treatment Failed
Following surgery, Jorge received the standard treatment protocol: radiation therapy followed by temozolomide chemotherapy. However, the cancer proved resistant. The tumor continued growing despite treatment, and his oncologist delivered the devastating verdict that further conventional treatment would be futile.
Fortunately, a second neuro-oncologist agreed to take over Jorge's care. This physician was willing to try an experimental approach: CCNU (lomustine) combined with tamoxifen—an anti-estrogen drug typically used for breast cancer. The modest goal was to extend Jorge's life by a few months.
The Unconventional Multi-Target Strategy
What set Jorge's treatment apart wasn't just the experimental chemotherapy combination, but the comprehensive approach that addressed multiple biological pathways simultaneously. The regimen included:
The Complete Protocol:
CCNU (Lomustine): DNA-damaging chemotherapy agent given in 6-month cycles
Tamoxifen (40mg/day): Anti-estrogen drug with documented anti-glioma effects in laboratory studies
Melatonin (15mg/night): Increased from 3mg to 15mg daily with oncologist approval
Aminocare A10 (18 pills/day): Containing 350mg L-Glutamine Derivative (A10) per serving, biochemically equivalent to sodium phenylbutyrate
Dietary Modifications: Sugar-free diet with reduced meat intake, daily fresh vegetable juices
The Breakthrough: Understanding Each Component
CCNU: Beyond Standard Chemotherapy
CCNU represents one of the more effective agents against recurrent glioblastoma. A phase III trial comparing bevacizumab plus lomustine versus lomustine alone showed that 8.8% of patients in the combination arm had no progression at 1 year, compared with only 1.9% in the lomustine-alone arm. However, median survival remained dismal at just 8.6-9.1 months.
Tamoxifen: Repurposing for Brain Cancer
While tamoxifen shows potent anti-glioma effects in laboratory studies, clinical results have been mixed. A recent retrospective study revealed that approximately 80% of patients experienced disease progression on tamoxifen. However, among those who achieved stable disease or partial response, median overall survival exceeded 40 weeks for glioblastoma patients and more than 80 weeks for other high-grade gliomas.
Melatonin: The Circadian Anti-Cancer Agent
Recent research increasingly supports melatonin's role in cancer treatment. The hormone demonstrates direct anti-cancer activity and enhances the effectiveness of chemotherapy while potentially reducing side effects. At the 15mg dose Jorge used, melatonin likely provided both direct tumor suppression and chemotherapy sensitization.
The A10 Connection: Antineoplastons and Sodium Phenylbutyrate
Perhaps the most intriguing component of Jorge's protocol was the "antineoplaston" supplement A10. This compound contains L-glutamine derivatives that are biochemically equivalent to the metabolites produced by sodium phenylbutyrate (NaPB)—specifically phenylacetylglutamine (PAG) and phenylacetate.
The H. Lee Moffitt Cancer Center published a remarkable case report of complete response in a patient with recurrent, multicentric malignant glioma treated with phenylbutyrate. That patient took 18 grams daily initially, reduced to 9g, then 4.5g due to side effects. After nine months, the tumor regressed completely.
Jorge's daily intake of 18 A10 capsules provided approximately 2.52 grams of phenylacetylglutamine—equivalent to roughly 16.5-21 grams of sodium phenylbutyrate. This dosage aligns closely with the successful Moffitt case.
The Mechanisms: Why This Combination Worked
Sodium phenylbutyrate operates through multiple anti-cancer mechanisms that likely synergized with the other treatments:
Multi-Target Synergy
HDAC Inhibition: Phenylbutyrate acts as a histone deacetylase inhibitor, potentially reversing epigenetic silencing of tumor suppressor genes
Glutamine Depletion: Functions as a "glutamine trap," starving cancer cells of this critical amino acid they require for growth
Chemotherapy Enhancement: Increases DNA damage from CCNU while potentially protecting healthy cells
Cell Cycle Disruption: Demonstrated to suppress proliferation of glioblastoma cell lines in laboratory studies
The Timeline: From Desperation to Complete Response
Jorge's response timeline provides crucial insights into the treatment's effectiveness:
- Month 1: MRI showed slight tumor reduction after starting the combined protocol
 - Month 6: Completed CCNU treatment cycle without significant side effects
 - January 2004 (14 months post-diagnosis): Tumor virtually gone, only scar tissue remaining
 - November 2023 (21 years later): Latest MRI shows no cancer recurrence
 
Modern Context: SEF Chemo and Current Research
Jorge's case predates but aligns with current research into combination therapies. Dr. Ken Matsumura's Side-Effect-Free Chemotherapy (SEF Chemo) approach uses carboplatin combined with sodium phenylbutyrate, reporting their greatest success with this specific combination.
A 2025 AI analysis of Jorge's case suggests his regimen achieved success through simultaneous targeting of multiple vulnerabilities:
Current Treatment Implications
While Jorge's outcome represents an extraordinary case that cannot be guaranteed for other patients, several elements of his protocol deserve consideration:
- Combination Approach: Multi-target strategies may be more effective than single-agent treatments
 - Timing Matters: Starting complementary agents simultaneously with chemotherapy may optimize synergy
 - Metabolic Targeting: Glutamine depletion represents a promising therapeutic avenue
 - Long-term Maintenance: Continued tamoxifen use suggests maintenance therapy importance
 
Lessons from an Exceptional Case
Jorge's 22-year survival represents more than an isolated miracle—it provides a roadmap for approaching aggressive cancers with strategic combination therapy. The case demonstrates that when conventional treatment fails, carefully designed multi-target approaches may achieve what single agents cannot.
The biochemical rationale behind each component of Jorge's regimen suggests this wasn't random luck but rather an inadvertent prototype of precision medicine. His experience highlights the importance of addressing cancer's multiple survival mechanisms simultaneously rather than targeting individual pathways in isolation.
Most importantly, Jorge's case offers hope while emphasizing the critical need for medical supervision in any attempt to replicate or adapt his approach. Each patient's situation is unique, and treatment decisions should always involve qualified oncologists familiar with the latest research and individual patient factors.
Key References
Medical Disclaimer: This case report is presented for educational purposes only and should not be considered medical advice. Every cancer case is unique, and treatment decisions must be made in consultation with qualified medical professionals. The treatments described here were undertaken under medical supervision and may not be appropriate for other patients. Always consult your healthcare provider before making any treatment modifications.
Last updated: September 2025
Thanks for writing this important report!
ReplyDeleteDo you have an opinion on what dose of sodium phenylbutyrat would be sufficient? 18 grams / day would be ~$1500 / month, which is a bit out of reach for me.
THANK UOU
ReplyDeleteHello Johan - You seem to have produced a remarkable trove of information. I have just come across your work and will have to spend considerable time to digest everything. I was quickly looking, without success, to see if you had discussed vorasidenib anywhere. I was hoping you had some opinions there given your close history to brain cancer. Looking forward to catching up on everything you have done here. Many thanks for such tremendous effort!
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