In the midst of the pandemic, Suzzanne Lacey’s mom was diagnosed with dementia and her dad succumbed to a rare cancer.

It was such a trying time that Lacey brushed off the concerns of her closest friend, who urged her to see a doctor because, she told Lacey, “You don’t seem like yourself. Something’s off.”

Lacey assumed she was depressed and would start to emerge from her haze in a few weeks. But the strange behavior Lacey’s friend noticed persisted. She wasn’t eating much. She asked her friend, with complete seriousness, if her dog was chewing gum. And she experienced episodes of dizziness that buckled her knees and left her on the ground.

Lacey, who is in her mid-50s and lives in Seattle, is part of a tight-knit friend group of four who all watch out for one another; another friend took her to the doctor, who ordered a CT scan just to be safe. At home watching Judge Judy, Lacey picked up the phone and learned she had a brain tumor and a tumor the size of a grapefruit on her kidney along with spots on her spleen and in her lungs. The diagnosis: stage 4 kidney cancer.

Brain surgery followed quickly in January 2021, then rehab and radiation. Lacey then faced a decision about where to seek the additional treatment she’d need. Through the Kidney Cancer Multispecialty Clinic at Fred Hutchinson Cancer Center, she met with Evan Hall, MD, MPhil, a medical oncologist at Fred Hutch who specializes in treating kidney cancer. He saw that Lacey was in crisis — the weird question about a gum-chewing canine was a poor prognostic sign, evidence of neurologic symptoms due to the spread of cancer to her brain. He advised a combination of two immunotherapies — a more aggressive recommendation than other physicians had suggested. Lacey agreed with that approach; she wanted to attack her cancer from every possible angle.

“I wanted to hit this with guns blazing,” she said.

An immunotherapy cocktail enlists the immune system to attack cancer cells

In an ideal world, the immune system should leave healthy cells alone and home in on abnormal cells such as cancer cells, destroying them. Cancer flourishes by evading the immune system.

The immunotherapy cocktail that Hall prescribed for Lacey was intended to help her immune system recognize that the multiplying kidney cancer cells were abnormal, the first step in her body attacking the cancer.

“It worked for her,” Hall said.

After a few months when Lacey went to see Hall to evaluate her progress, the tumor had decreased by a third. “Everyone had masks on at that time so I couldn’t see his smile, but I could tell he was pleased,” she said.

Lacey’s kidney mass reduced in size so much that it was small enough to be surgically removed. In spring 2022, Lacey’s surgeon, John Gore, MD, MS, removed it.

“He said there wasn’t an ounce of cancer — just scar tissue,” she said. “Everyone was thrilled. I remember Dr. Hall saying, ‘We are men of science. We never use the word miracle, but this feels pretty close.’”

In April 2023, two years into immunotherapy treatment, Lacey started the next phase of her treatment: blood draws and scans every three months to make sure the cancer stays in remission paired with a smaller dose of the second immunotherapy drug. She is also participating in a clinical trial to determine how long the immunotherapy drugs remain in a person’s body. 

Two years is a typical course of treatment for immunotherapy.

“We don’t know how long patients should use these medications,” Hall said. “The immune system learns and it has a memory, which is different than with other kinds of cancer therapies. We don’t know when to stop immunotherapy. It is a major unanswered question in our field.”

Hall told Lacey that stopping immunotherapy would be a reasonable course of action but so would continuing since she experienced very few side effects. (Low thyroid function was controlled with a thyroid hormone.)

Exploring an approach to reduced-frequency dosing

The decision? A unique Fred Hutch-developed approach that called for a lower-intensity treatment every three months instead of every four weeks. Lisa Tachiki, MD, and Shailender Bhatia, MD, recently published a study about the approach and are engaged in ongoing research to show that reduced-frequency dosing, an approach to “step-down dosing,” may be a good option.

Reduced-frequency dosing has been used with a number of skin cancer patients at Fred Hutch, but the same principles apply to kidney cancer patients.  

“This approach is unique to our center,” Hall said. “In some cancers, there is a growing concern there could be late progression years later, so the thinking is that continued treatment may reduce that chance.”

Spacing out dosing is not a standard way to deliver immunotherapy, but it may become more accepted for those patients who have had good responses to standard dosing.

“We have data to show that if we increase the time between doses after patients like Lacey have responded well to standard doses of immunotherapy, patients may continue to do well without compromising the efficacy of immunotherapy,” Tachiki said. “There is biological evidence that step-down dosing would be relevant for any cancer that responds to immunotherapy.”

One compelling reason to opt for step-down dosing is that patients can be extremely reluctant to stop a drug that’s working well to keep them alive. Some research has found that stopping immunotherapy after a year instead of two years is not as effective at controlling lung cancer.

“Reduced-frequency dosing provides an option for patients to continue immunotherapy, rather than stop entirely, while still using less drug and saving cost and time of drug infusions,” said Tachiki. “It’s a middle-path approach.”

The ideal duration for reduced-frequency dosing is unknown, but patients such as Lacey are helping physician-scientists crack the code by participating in research.

“My life has changed,” said Lacey, who runs Museum Without Walls, a nonprofit she started two decades ago that develops oral history programs around themes of racism and intolerance. ”I was really depressed. I was grieving. I missed my dad. But the moment I got this diagnosis, I had a clear epiphany that no, I didn’t want to die. I see life differently, and my appreciation for every moment, even when I’m exhausted, is different, and I owe that to my best friends and Fred Hutch.”

This article was originally published March 7, 2024, by Fred Hutch News Service. It is republished with permission.