Alexandra Vitale: A New Lease on Life, Thanks to a Breakthrough Treatment

When Alexandra was five years old, her parents noticed that her left eye was weaker than her right eye.

At the Wills Eye Institute in Philadelphia, ophthalmologists found a benign tumor on her optic nerve. After laser surgery to remove the tumor, genetic tests revealed that Alexandra had von Hippel-Lindau (VHL) disease, a rare inherited condition characterized by the formation of both benign and malignant tumors in different parts of the body.

“Anywhere from the eyes, ears, central nervous system, endocrine system, kidneys, you name it, I’ve probably had it,” she said.

When Alexandra turned 20, the incidence of tumors increased, and she underwent MRI scans every three to six months for surveillance.

“Every time I went back for a scan, a new tumor was detected seemingly out of nowhere, even though I wasn’t having any symptoms,” she said.

In 2011, Alexandra developed benign tumors on her adrenal glands that necessitated surgery.

Then, four years later, in 2015, scans revealed that she had developed renal cell carcinoma—the most common form of kidney cancer—as well as malignant tumors in her pancreas. This led to a major surgery called ancreaticoduodenectomy, more commonly known as the Whipple procedure. At the same time, Alexandra had a partial nephrectomy to remove the tumors in her kidney.

“That was probably the worst surgery I’ve ever been through,” she said. “The Whipple was probably one of the hardest ones to recover from.”

Eight months later, scans found a tumor on her cerebellum that also required yet another surgery.

“Weirdly enough, that was actually an easier surgery to recover from than the Whipple,” she said.

In December of 2018, Alexandra developed another small tumor on her kidney, which qualified her to participate in a small open-label clinical trial. The study involved just 50 VHL patients who had at least one renal cell carcinoma tumor to test a therapeutic designated as PT2977, and now known as belzutifan (Welireg).

“I remember getting the phone call and being ecstatic, crying on the phone just at the thought of being able to participate in this trial,” Alexandra said.

Alexandra had—and continues to have—a good response to belzutifan.

“On this medicine, my tumors have either remained stable, or shrunk to the point where some of them can’t even be measured,” she said. “This drug is a reset on my life and that’s the best way to explain it. Mentally, physically, I am better now probably than I ever have been.”

In August 2021, based on the results of the trial Alexandra participated in, the U.S. Food and Drug Administration (FDA) approved belzutifan for patients with VHL-associated solid tumors.

The development of drugs, such as belzutifan, is driven by basic science discoveries made possible through federal funding of medical research.

“Funding cancer research as much as possible will give people like me more time with loved ones. That is true for me, that is true for you, and that is true for members of Congress,” she said. “Everyone has been exposed to someone or knows someone who has been diagnosed with cancer. Why wouldn’t we put our money into it?”

Alexandra no longer dreads the MRI scans she continues to undergo on a regular basis.

“I’m actually excited reading the MRI reports because I look forward to seeing if tumors have shrunk and if they are stable,” she said. “That’s because, for the bulk of my life, I wasn’t hearing anything along the lines of stable or shrinkage.”

Through the many years living with VHL and the surgeries, scans, and other treatments associated with the disease, Alexandra was supported by her parents, her little brother, and her partner of seven years, Shelby.

Alexandra takes belzutifan daily–three pills that she takes in the evening because it can cause her nausea—and is scanned every three months to monitor her tumors. She remains extremely optimistic about the future thanks to the medication that has kept her cancer in check.

“I’ve been telling myself for my entire life, ‘You have to stay positive and continue to move forward,’ And quite honestly, that’s just a message that everyone and anyone can follow.”