‘I honestly didn’t think I’d be here.’ Melanoma patient cancer-free after immunotherapy trial at LVHN

In the last seven years, Rebecca Schlegel changed jobs, moved apartments and had a baby boy.

For all that time, she’s also been cancer-free. Schlegel, a 34-year-old Wilson resident, was among the first melanoma patients to receive treatment that helps the immune system target and kill cancer cells, pioneering a new generation of drugs that has reversed the fates of thousands of people.

In 2016, Schlegel was featured in a Morning Call story about immunotherapy and its early promise to stretch life expectancy for advanced melanoma patients. Since then, she’s far passed the five-year cancer-free point that marks the long term success of the treatment, boosting confidence in the new drugs that help the immune system fight cancer.

Immunotherapy drastically improved the survival rate for people diagnosed with advanced melanoma from just 5% of patients to about a third, said Dr. Suresh Nair, physician-in-chief of Lehigh Valley Cancer Institute and Schlegel’s oncologist. Nair was instrumental in getting LVHN patients into immunotherapy trials through a partnership with the well-known New York cancer center Memorial Sloan Kettering.

While immunotherapy is promising, it’s not effective for the majority of melanoma patients who will still see their cancers return within five years. But recent strides in cancer research have made Nair optimistic.

“It use to be in oncology, things didn’t happen,” he said. “I’ve been doing this for 30 years and luckily, things are happening quicker and quicker.”

An American Cancer Society report in January showed that advances in treatment and screening drove the largest single-year decline in cancer mortality — 2.2% — between 2016 and 2017. Cancer mortality rates dropped by 29% from 1991 to 2017, but rates of people getting cancer have stayed flat in recent years.

Still, the steady decline in deaths means nearly 3 million more people have survived their cancers. The decline was driven largely by better treatments in four common types of cancer: lung, colorectal, breast and prostate. However, progress has slowed for all of those, except lung cancer, where screenings and a decline in smoking continue to decrease death rates.

For adults 20 to 39 years old, rates increased for colon, endometrium, kidney and breast cancers. And despite a vaccine and screening, cervical cancer is the second leading cause of cancer death among women under 40.

The steepest decline has been in melanoma deaths, largely because of immunotherapy drugs, according to the Cancer Society report. It highlights the great strides in research but also notes where the medical community has come up short, notably with patients with cancers that spread or return.

“The kinds of therapies I’ve seen evolve have been absolutely dramatic, with leaps and bounds in the last five to 10 years,” said Dr. Edward Balaban, an oncologist and vice-chairman of the Pennsylvania Medical Society’s board of trustees.

Since the mid-1970s, cancer treatment relied on chemotherapy, which uses drugs to kill or shrink cancer cells. So when immunotherapy came around, people were excited about its revolutionary approach and the possibilities it held. But Balaban and Nair are wary of calling it a cure.

“It’s still a minority of cancers that we’re curing with these medicines so far,” Nair said. “We’re getting some lengthening of survival, but cancers are still figuring out their ways around some of this.”

Long road to a cure

As for most people, immunotherapy didn’t work for Carol Adams, who was treated a year after Schlegel and with the same drugs. Adams, who lived in Longswamp Township, died in 2016 at 62.

Two decades earlier, she discovered a mole on her foot while she was pregnant and soon after was diagnosed with early stage melanoma. Despite initial success, the cancer kept coming back and eventually spread to other parts of her body.

Adams’ story embodies both the successes and failures of efforts to beat melanoma. She lived 19 years after her diagnosis, including six years without cancer. But it was aggressively mutating and came back.

Two years after Adams’ death, her husband was diagnosed with advanced melanoma.

Bob Walker watched his wife go through two decades of treatment and remission, endure painful medication side effects, job loss and weight loss, hope and despair.

“It didn’t seem like there was an end. There was constantly another hurdle,” Walker said.

So when Nair told him last December that his cancer was in remission, he had his guard up.

Nair assured him his chances of survival would improve with time because of the pace of research and drug development.

“If I can get you three years, I’ll get you more years after that, because they keep researching and finding more powerful drugs that attack cancer and kill it,” Nair said to Walker.

Treatments under development vary from fine-tuning medication already available to experimenting with gene therapies.

One drug in clinical trial at LVHN beat a patient’s kidney cancer into remission in three months, and initial data show about 70% of patients who took it saw their tumors shrink significantly, Nair said. Typically, it takes at least a year to drive advance cancer into remission.

That drug, NKTR-214, improves the effectiveness of immunotherapy drugs when used in combination.

Researchers are also developing gene therapies that alter cancer-fighting T-cells to make them better at targeting and killing affected cells.

Nair called it, “a hot area in cancer,” adding that gene therapy is where breakthroughs in cancer are likely to happen in the next five years. So far, however, gene therapy has been effective in blood cancers only, he said. And there have been serious side effects, such as seizures and temporary comas.

“The holy grail is if they can crack the code to use the T-cells to treat the most common cancers,” he said. “There’s early work on this, even for melanoma. There’s a lot of hope. We don’t know if some of this will end up disappointing. Always in cancer research, some things work and some things don’t.”

The problem with T-cell therapy is that it’s incredibly expensive and takes nearly a month to start, Balaban said. The first two gene therapy drugs were approved in 2017 and came with a price tag of $1 million to treat one patient, Balaban said. Now it’s about $600,000.

On the far horizon, scientists are developing gene-editing technology that would cost far less. But research in that area is slow because of ethical concerns about manipulating genetic material and a lack of understanding about long-term effects.

A clinical trial of CRISPR, the gene-editing technology, at the University of Pennsylvania showed that while there were no serious side effects, the treatment didn’t improve outcomes, The Philadelphia Inquirer reported this month.

Walker is mindful that treatments under development may one day play a role in saving his life. But he can’t worry about what might happen. The 53-year-old father of four is trying to live in the moment, getting back to work as an auto technician and enjoying life with his family and friends.

That’s an attitude he learned from his wife. When she was sick, she dreamed of going back to the life she used to have.

“And then it dawned on me, we take for granted in our life that we want to be happy,” Walker said. “Yet the happiest time is right now. And if you don’t enjoy your life right now you’ll never be happy.”

A life after cancer

Schlegel worries more about raising her kids than about her cancer coming back.

In the mornings, she juggles feeding 6-month-old Wyatt, making Funfetti pancakes for her two older daughters and getting all three to school and day care before making it to work as a sales associate for a large retailer on time.

“I have no time for myself,” she said.

Her daughter Angelina is a preteen with angst and attitude. She finds the country music her mom plays in the car “annoying and stupid.”

At 8 years old, her daughter Mikayla is a mix of sweet and sassy.

“She runs the household,” Schlegel said.

Schlegel gets checkups once or twice a year to monitor her cancer, but has no lingering symptoms.

Other than the monitoring, she’s living a fairly typical life for a woman in her 30s, one she didn’t envision eight years ago.

“I honestly didn’t think I’d be here,” she said.

When Schlegel was diagnosed after finding a bloody mole on the back of her ear, Nair and other doctors thought she had maybe six months to live. In addition to the tumor on her ear, she had two tumors on her brain, three in her lung and one in her liver. At that time, her best bet was to enroll in a clinical trial combining two new drugs.

Now she’s thinking of going back to school so she can to get a better paying job and a bigger house.

Nair was initially astonished by her recovery. And even though such positive outcomes have become more common, he tempers his optimism.

“We can’t rest on our laurels,” he said, “because if we’re getting a third of patients who survive advanced melanoma long term, that means two-thirds are going to still eventually die of advanced melanoma.”

Morning Call reporter Binghui Huang can be reached at 610-820-6745 or Bhuang@mcall.com.