Beating Glioblastoma with Repurposed Drugs

Exactly How Ben Williams Did It

Professor Ben Williams - 29 Year GBM Survivor

It began during a card game in 1995. As Professor Ben Williams won poker hand after hand against his UCSD colleagues, he proudly arranged his chips in neat stacks to his right. To his left, a heaping pile of unruly chips was the first sign of his lurking, yet undiagnosed brain cancer. This was followed by problems with walking, parking his car, and other perceptual issues involving left-sided neglect, signs characteristic of stroke or brain injury. Right-sided brain lesions produce a condition where a person becomes strangely unaware of their left side.

In Ben Williams’ case, it reflected brain cancer of the worst kind, a tumor known as Glioblastoma Multiforme [GBM], one with an average survival of little more than one year.

After a March 30, 1995, MRI scan revealed the cancer that occupied his right parietal lobe, Ben was candidly told by his Oncologist that he would be lucky to survive 18 months even if he did everything right - that is if he dutifully followed all medical advice in receiving brain surgery, radiation treatments, and chemotherapy.

But Ben was not your typical cancer patient. As an accomplished research scientist, he was Chairman of the Psychology Department at the University of California at San Diego. He had earned a PhD at Harvard. Ben was anything but a compliant, no-questions-asked cancer patient. And his Neuro-Oncologist soon discovered that answering pages of prepared questions during each examination would become the norm.

These questions often involved second-guessing the standard treatments. They also involved requests to add repurposed drugs to the treatment regimen. All of this came to a head when the Neuro-Oncologist refused to prescribe Tamoxifen, a drug that Ben’s independent review of the literature showed promise against GBM.

“He just out and out refused to allow the Tamoxifen, he was unwilling to bend, and we had a major altercation over the phone.”

Ben suggested he find a different Neuro-Oncologist, not realizing there were no others in the San Diego area.

His Neurosurgeon, however, brought the two back together and mediated a discussion where they reached a compromise. The Neuro-Oncologist would agree to prescribe the Tamoxifen if Ben would agree to one round of chemotherapy first.

Ben underwent brain surgery for tumor removal on March 31, 1995. He followed through with chemotherapy and received a prescription for Tamoxifen. However, the friction between the two persisted, and Ben resorted to driving to Tijuana, Mexico to acquire higher doses. He added Accutane, also sourced from Mexico, a drug his research showed had effectiveness in clinical trials. Ben found an abstract from Clinical Cancer Research which showed that 45% of trial participants experienced either GBM tumor regression or stabilization following the use of Accutane. Ben also read that the drug Verapamil can block calcium channels and thwart cancer’s attempts to develop resistance to chemotherapy. Ben obtained Verapamil through a prescription from his family doctor.

He added more drugs and supplements.

His MRI scans began showing shrinkage of the remaining tumor that was unreachable by surgery. First, the changes were small. Then as Ben added additional repurposed drugs and increased their dosages, the cancer regressed faster.

His MRI on January 31, 1996, showed that the cancer had completely disappeared. However, Ben was aware that his battle against the disease was far from over. Despite achieving a clean MRI, he knew from his research that many such patients - about half - experience a recurrence of the tumor within one year.

Sadly, a significant percentage of these patients pass away a few months after the recurrence. About 25% of GBM patients who achieved a clean MRI without experiencing recurrence within the first year became long-term survivors - meaning they survived at least 5 years.

Ben knew the 12 months after January 1996 were crucial.

He completed all the recommended chemotherapy. He continued his daily walking and even began running. He could not make it more than one mile whereas before the cancer he ran six miles every other day. He fought emerging negative thoughts between episodes of optimism.

Ben returned to teaching classes and conducting research at UCSD. He found himself losing his train of thought and struggling to give lectures. His student reviews were among the worst of his career. But he persevered.

In the Spring of 1997, he received word that his eighth MRI in a row was again clear. He wrestled with the question of whether or not to stop the Tamoxifen some 19 months into his remission.

If he were wrong, and the tumor came back after stopping it, he could not live with himself. However, he noticed some side effects like weight gain and loss of libido. Still, in the end, he opted to continue it, after a discussion with his physician team.

The heart of Professor Williams’ treatment regimen remained Tamoxifen, Verapamil, Accutane, and three other repurposed drugs. Many refer to Ben as the “Father of Repurposed Drugs Against Cancer.” He was the first I could find who definitively documented their use in surviving terminal cancer. Ben remains alive and well today nearly 30 years after his grim 1995 diagnosis.

He has written extensively about his experience in the book, Surviving Terminal Cancer, and he believes all patients should be educated consumers who actively question while also receiving cancer care with solid informed consent.

He cites a key example in his book concerning the administration of his BCNU chemotherapy. According to the PDR, the Physician’s Desk Reference, BCNU must not be stored in plastic bags because light causes it to lose its effectiveness. Instead, it must be contained in glass bottles.

When Ben noticed the BCNU they were about to administer was from a plastic bag, he refused it and asked them to check with the Pharmacist. The error was acknowledged, and they returned with a properly preserved glass container of BCNU.

Physicians, including Ben’s Neurosurgeon, routinely refer their GBM patients to consult with Ben about repurposed drugs. While they may not be willing to prescribe repurposed drugs to their patients, they find it helpful to connect them with Professor Williams.

Over the years, Ben has spoken to some 200+ GBM patients, often relatives of physicians from his treatment team. Even after advising them of the benefits of repurposed drugs, their Oncologists refuse, the patients do not receive them, and they do poorly. Glioblastoma is one of the worst of the worst cancers and is considered a death sentence by Oncologists. For one to have a chance at longer-term survival, one must do something different - or in addition to - the standard of care.

According to Ben, and these numbers have not changed significantly over the past 30 years - the 2-year survival rate of GBM treated only with radiation ranges between 2 and 10%. With both radiation and chemotherapy, this 2-year survival ranges between 15 and 30%. It is only when someone does something different, like adding repurposed drugs, that we see long-term survival like Ben. Yet that requires a rare combination of smarts and assertiveness that eludes most people, especially when their life is on the line, and they are not the expert.

Ben Williams reports, “Only the most intelligent and aggressive patients manage to convince their physicians to try the cocktail approach.”

Here is the list of repurposed drugs that Ben Williams added.

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