Tonsil cancer patient Richard Faugno has played the piano since he was three years old.
Richard Faugno has played the piano since he was 3 years old. Music is his passion and his profession. The Costa Mesa man, 64, was the resident pianist at the Villa Nova restaurant in Newport Beach for 32 years and teaches piano lessons.
So when Faugno was diagnosed with tonsil cancer in June, 2014, he first worried for his life, and then he worried about his livelihood.
Tonsil cancer: A rare disease
Tonsil cancer is a rare disease that requires a rigorous course of chemotherapy and radiation. But Faugno soon learned that the treatment itself, while saving his life, could also make him unable to play the piano at a professional level. High, prolonged doses of chemotherapy can cause neuropathy, a condition in which the toxicity of the drugs damages the nerves in the hands and feet, leaving tingling and numbness.
"I had a lot of fear," he says of the days following the diagnosis. "I didn't even think I'd have a future. And if I did survive, I might have neuropathy. That really worried me because my whole livelihood relies on my playing."
A personalized treatment approach
His UCI Health cancer specialist took note of his concerns and designed a course of treatment personalized to Faugno’s needs.
"Tonsil cancer is a challenging cancer," says hematologist-oncologist Dr. Chaitali Nangia.
Faugno's tumor was too large to remove surgically. "Heavy-duty chemotherapy and radiation is almost as tough as having a bone marrow transplant. The tonsils sit at the back of the throat, and the treatment can cause canker sores, mouth pain and secretions. Some patients can't even swallow saliva."
Daily treatments can go on for months and because eating and swallowing become so painfully difficult, many patients require a feeding tube to maintain strength and withstand weight loss of 60 to 80 pounds. Trying to avoid neuropathy made Faugno's case even trickier, Nangia says.
Steps taken to avoid neuropathy
"When I learned he was a pianist, we took all precautions we could to minimize the impact on his nerves," she says. Nangia decided to schedule chemotherapy treatments weekly instead of daily. She ordered special hydration and medications that could curb the toxicity that causes neuropathy.
"I promised him I would try my best to cure this cancer," she says. "But we had to balance the best possible outcome with limiting the toxicity."
"She knew I was concerned about neuropathy in my hands," Faugno says. "I can't tell you how much I appreciate what she did to try to avoid it."
The treatment was as harsh as Faugno expected. He lost about 35 pounds and needed a feeding tube for almost two years. UCI Health head and neck cancer specialists provided a special dental oncologist who worked with Faugno to help prevent permanent damage to his teeth and oral tissues.
After the chemotherapy and radiation therapy were completed, another UCI Health specialist performed laser surgery to remove scar tissue — the result of radiation therapy — from Faugno's throat to improve his ability to swallow.
Enrolling in a clinical trial
Then, after the acute phase of his treatment ended, Nangia recommended that Faugno enter a UCI Health clinical trial that is examining the potential of a lung cancer drug called afatinib for prevention of recurrence of tonsil cancer.
"I considered the clinical trial a win-win," Faugno says. "I was seen more often and monitored more often. So I felt it was special, extra treatment. It was the best thing I did. I thought that I could possibly help other people. It was my way of contributing."
Faugno endured more side effects from the investigational medication but completed the trial with the support of his healthcare team and his wife, Alice, who, Nangia says, "was at every appointment, never left his side, and laughed and cried with him."
Benefits of an academic medical center
"Because we're an academic medical center, Richard got the benefit of everything we do here," Nangia says.
"Our focus is not just on surviving but also on making the journey as comfortable as possible, and there is a big emphasis on supportive care and survivorship. Then he was offered entry into a clinical trial to minimize his chances of recurrence. That wouldn't have happened at a community hospital."
Alice Faugno credits UCI Heath with providing the special services needed to treat her husband and protect his quality of life.
"So many people were involved in his care, and every single one of them was wonderful," she says. "I don't think he would have survived if he'd been treated anywhere else. UCI Health knew exactly what to do to save his life."
And his livelihood. Faugno is now in remission and has resumed playing and teaching piano.
"I'm getting back to it little by little," he says. "It would have been horrible if I could no longer play. I would have been very depressed. But I have no neuropathy. What a miracle. I tell the people at UCI Health: From the bottom of my heart, thank you for saving my life."
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