Meg H.

Meg H.

This article was featured in HealthCalling in June 2015. Meg, the patient, Dr. Ian Anderson, her Oncologist, and Kim Young, the Research Director, were each interviewed.

Experimental Drug Enables Guitarist to Play On

Two years ago, breast cancer survivor Meg Hentges felt such burning pain in her hands and feet that she could no longer walk, write or hold a pen. The chemotherapy-induced nerve damage, a side effect of cancer treatment, also denied her the joy of playing guitar, her passion since childhood.

The 54-year old Santa Rosa resident found relief in one of nature’s most deadly toxins, the poison secreted by pufferfish. Enrolled in a clinical trial through St. Joseph Health, Hentges received low-dose injections of tetrodotoxin, the same pufferfish toxin that in higher doses can paralyze and kill.

As she progressed through six rounds of abdominal injections over the course of a year, Hentges resumed her active lifestyle, taking up kayaking and photography. She recalls how quickly her symptoms responded to the shots, which she initially resisted.

“I was scared to try this, but I was in a lot of pain and didn’t want to become addicted to opioids so I wasn’t taking painkillers,” Hentges said. “Now I can hold a pen, I can play guitar, I can walk. It’s improved my life so much. I feel extremely hopeful.”

Now under review by the U.S. Food and Drug Administration, this tetrodotoxin-based pain medicine was tested in one of more than 20 cancer-related clinical trials conducted by researchers with Annadel Medical Group and St. Joseph Health. Along with cancer trials, the team is engaged in testing treatments for Alzheimer’s disease.

“These are cutting-edge treatments that patients who qualify can access here in Sonoma County, close to their families and support networks,” said Kim Young, RN, CCRC, research director for Annadel Medical Group. “For many patients, especially older patients who may not have the means to get to UCSF or Stanford, local trials are a huge advantage. If we don’t have a trial here, they won’t have access.”

Hentges had suffered from damage to her peripheral nerves, or peripheral neuropathy, a common side effect of chemotherapy that often gradually subsides. Some patients, however, need long-term symptom relief.

“About 10 percent of the time, chemotherapy-associated nerve damage is fairly severe and does not reverse,” said Ian Anderson, MD, Hentges’ oncologist. To maximize treatment options for this and other conditions, “we want to get access to pharmacy treatments well ahead of when they’re going to get FDA-approved,” he added. “We first focus on trying to cure the cancer, but we’re also working to ameliorate the side effects of treatment.”

The degree to which the pufferfish toxin relieved Hentges’ pain and immobility is uncommon, Dr. Anderson acknowledged, with her outcomes being among the best he’s seen. He cautions prospective enrollees to consider the risks versus benefits of investigative therapies. “With experimental drugs, you don’t know exactly what the long term consequences are going to be,” said Dr. Anderson, a cancer specialist with Annadel Medical Group. “A lot of people don’t want to be part of experimental treatments unless their quality of life is impacted enough that they’re willing to take a risk.” Hentges’ willingness to risk paid off in ways she never imagined.

In a YouTube video released in December, Hentges is prominently featured on classical guitar in a performance with the Dr. Who Fan Orchestra. A fan of the sci-fi TV series and composer Murray Gold’s score, Hentges answered an internet based call which drew more than 264 musicians from more than 20 countries to join this “virtual” orchestra and choir. Watch here.

St. Joseph Health fosters research to ensure international and national research trials are available to patients throughout the North Bay.

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