Vismodegib lets eyelid cancer survivor keep his vision

When Paul Skobel’s eyelid cancer returned in 2013, his local oncologist told him that he would probably lose his right eye because of the way the tumor had grown back.

Paul’s right orbital bone and cheekbone would need to be removed, and the upper jaw on that side of his face might also have to be reconstructed. With the orbital bone gone, there would be no support structure for an artificial eyeball, so a skin flap would have to be taken from Paul’s thigh to cover the depression where the eye had been.

“You can imagine how I felt about that,” Paul says. “I probably wouldn’t have needed a mask for Halloween.”

Choosing MD Anderson

Fortunately, Paul’s local radiologist gave him a reason to be hopeful. A new chemotherapy drug had just been approved by the U.S. Food & Drug Administration the year before, and he told Paul that MD Anderson had it.

“He described it as a designer drug that had shown promise with the type of basal cell cancer that I had,” Paul says. “I thought, OK, maybe I can work with this.”

Paul came to MD Anderson in November of that year. His doctor prescribed him the new drug, called Vismodegib, and told him it might be possible to save his right eye.

“She didn’t promise me anything,” Paul says. “She would just say, ‘It’s possible.’”

Vismodegib begins to show effectiveness

Paul began taking Vismodegib every day. After three months, an MRI showed the tumor was getting smaller.

“It took quite a while to be visible because the skin under my eye was so stretched out,” Paul says. “It looked like I’d been stung by a wasp.”

But the medicine continued to shrink the tumor. Paul had an MRI every three months to monitor its progress. Finally, in December 2015, Esmaeli couldn’t see anything on the scan. She scheduled surgery for January to remove excess tissue and some nerves along Paul’s nasal passage.

“She removed the nerves as a precautionary measure,” Paul recalls. “But I was told I would not have any feeling there. And I don’t, from my right cheek down to the lip.”

Chemotherapy’s side effects

For Paul, the hardest part of his second eyelid cancer experience was the side effects from chemotherapy. Fatigue had him sleeping 12 or 13 hours a day, and muscle cramps in his legs and hands made it hard for him to drive.

“It was scary, especially when I was in the car,” Paul says. “I had to pull over sometimes, when I had cramps in both hands.”

His sense of taste was also severely affected. “The first time I noticed it was with water,” Paul says. “It just didn’t taste good. I thought something was wrong with it. But it was all water, regardless of where it came from. And it went from there to food.”

Eventually, meals became so unappetizing that Paul had to force himself to eat. He lost 40 pounds -- and all of his hair.

“It’s coming back very slowly, in patches,” Paul says. “But my sense of taste finally returned. I went from not being able to eat anything to not being able to stop.”

A gamble worth taking

Paul is still recovering from the fatigue caused by the chemo, but he is grateful to have come to MD Anderson.

“I was very relieved when the drug worked,” Paul says. “I was elated. There’s been no change to my eyesight.”

He also has some words of encouragement for other patients.

“If you’re looking at a new drug and you believe in the doctor who’s telling you it’s fairly good, don’t be afraid to try,” he says. “It can’t be any worse than what you have. Take a chance.”