Few patients, world-wide, were enrolled during 2018 in the vorsasidenib (AG-881) Phase 1, Cohort 2, Investigational Drug Trial.

I am perhaps the last of those very few, 25, fortunate patients. And I am one of the extremely few long-term patients, now in my 8th year on vorasidenib, with over 91 cycles or 2,548 daily doses, and counting.

I have continued into my seventh year, in September 2025 on VORANIGO® which received approved in the US by the FDA on 6 August, 2024. I plan to follow the same rigorous protocol, as I have already done for my initial six years, prior to approval by the FDA, in terms of strict adherence and compliance. 

I subscribe to a high degree of personal responsibility in taking 'my' drug. After all, I have lived seven more years and I am happy to be able to write this, and to share my on-going experiences with you. 

My enterprise, Expert Patient LLC, incorporates my anecdotal lived experience on vorasidenib; my personal research activities, informed by my early career as a Post Graduate researcher at UCSF; other studies  (published and unpublished) at the the office of the Chief Medical Examiner for the City and County of San Francisco, CA; current studies on my medical data, involving 70 MRI studies and MR spectroscopy since my date of diagnosis in 2011; and independent and novel collaborative research studies, n=1, using and investigating my perpetually remaining 1/3rd sub-totally resected brain tumor, and its markers, in liquid biopsy experimentation.

At heart, I remain a citizen scientist, and with hope for the future, my past, and present future research activities may help some of the many other brain cancer patients, my people,  in the US and world-wide. If you

have an idea for possible collaboration, please tell me about your idea on the Contact page. 

I was a guest, in September 2024, as a part of a timely webinar, about vorasidenib, conducted by neuro-oncologist, Jennie Taylor MD, MPH.

at the University of California, San Francisco (UCSF). Please click on this link: https://www.youtube.com/watch?v=vvF43HZ2apM

In September, 2024 Jennifer Clarke, MD (UCSF) presented a talk at the American Brain Tumor Association(ABTA) annual meeting in Chicago, IL on IDH mutant inhibitors, and I was privileged to be able to attend that presentation: https://www.youtube.com/watch?v=naPyZUsdZQg&list=PLTcHii7RGP5ikFVArD06GeXMH8jESB9s_&index=12

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I remain deeply grateful to Dr. Taylor,  Dr. Jennifer Clarke, neuro-psychologist Dr. Christina Weyer-Jamora (UCSF) and my extensive medical team, all at UCSF;  Kendra Paabo, BSN, RN of the Brain Tumor Network who helped inspire me to create Expert Patient LLC; my advisor, long-time friend and oncologist Bertrand Tuan, MD (San Francisco); and the many others who were both friendly and encouraging before I was able to cement my first public interaction at the Society for Neuro-Oncology (SNO) 2023 annual meeting  in Vancouver, BC.

Thank you, all.

Lynton

     Thriving always,

     Always a Thriver!