- Associated Press - Saturday, April 16, 2016

LEWISTON, Idaho (AP) - Stephanie Florence speaks another language when it comes to cancer.

For instance, the Lewiston photographer has learned the terminology and science of treatment therapy since she was diagnosed with lymphoma in 2006, the Lewiston Tribune reported (https://bit.ly/1S4Fjvr).

“She can go up there and converse with the doctors and the researchers as much as anybody,” husband Jerry said of her voracious appetite for knowledge about her disease.

But Florence also refused to learn another language, the language of defeat used by doctors who told her there wasn’t much hope, that the cancer was “incurable.”

“I didn’t accept it,” Florence said of the time six months after her diagnosis when she peeked at her medical chart and found an entry predicting she had two weeks until a “fatal event” would steal her life away.

Florence, 44, is now cancer-free after that initial diagnosis 10 years ago, thanks to an experimental treatment at the Fred Hutchinson Cancer Research Center in Seattle. She had to fight her way into the clinical trial where she got the treatment, and her story is part of a recent Time Magazine article on immunotherapy, its promises and its pitfalls.

Immunotherapy isn’t new, and researchers have been working for years on developing ways to utilize the body’s own immune system to kill cancer cells. In fact, Florence’s fierce interest emerged when she read about a promising drug developed at Stanford that was abandoned because it was cost-prohibitive.

“I wanted to do something with it from the beginning,” she said.

Her doctor at St. Joseph Regional Medical Center didn’t believe she had time to dabble in experimental treatments, however, and instead put Florence on a traditional course of chemotherapy. It worked, and she went into remission by the spring of 2007.

“But he told me it would come back,” she said. “And it did.”

She discovered a “hot” lymph node in 2008 that surgeons removed successfully. Then there was a questionable scan in 2011 that led her to the Seattle research center, and Dr. David Maloney.

Florence wanted to get into one of Maloney’s immunotherapy trials, but couldn’t unless she had full-blown cancer. And by 2013, Florence could feel in her lymph nodes that a relapse was coming. A scan confirmed that the lymphoma had returned.

Other avenues of treatment didn’t seem promising, so she began to press Maloney to let her into a trial where the patient’s own T-cells are harvested and genetically modified to attack the proteins on the cancer cells.

And even though Maloney warned her that other patients were dying, she wouldn’t take “no” for an answer.

“I wanted to try this,” Florence said, forcefully tapping her index finger on a table with each word. “I already had it in my brain that this is what I want, and I don’t believe anything you are telling me. But he flat-out refused to allow me into the trial.”

She had a stem cell transplant in 2014, which was technically a success. And even though she didn’t officially relapse until December of that year, Florence said she could feel it coming earlier.

“By October, I knew something was up,” she said.

Ironically, that was the relapse that finally got her into the trial. Florence relentlessly called Maloney’s office and got another appointment. After a face-to-face meeting in February 2015, he let her in, and didn’t mince words about what her chances were.

“They were very thorough going over the risks,” she said. “They really lay it out, what you’re up against, and it is terrifying. It’s not like you’re going to ride off on a unicorn and see some rainbows. They emphasize the dangers involved.”

One patient who received the treatment was in a coma after a bad reaction, for instance. And only 50 people had ever even had the treatment before her, and most of them were treated for leukemia. Doctors told her they had seen “some success” with lymphoma, but Florence didn’t have much luck getting them to explain what that meant.

“It was like nailing Jell-O to a wall to get answers,” she said.

But with all the knowledge she’d amassed, especially about promising treatments that were abandoned for financial reasons and the elusive nature of clinical trials, Florence was ready to take the leap.

“I thought this was my moment,” she said.

She signed on all the dotted lines and had the altered T-cells injected back into her blood. “And then, nothing happened.”

Doctors expected some side effects, especially a fever from the battle they wanted to unleash between her T-cells and the cancer cells. But there wasn’t any immediate evidence that was happening.

Then, 28 days after the treatment last summer, she had a scan. A couple of hours later she got the call. There was absolutely no cancer in her body, what doctors call a “complete response.”

“It was the most emotional and rewarding moment of everything I’ve experienced, that there was a chance that I could be cured,” Florence said. “I feel more hopeful now than I ever have.”

She has had two clean scans since then, but won’t be considered completely cured until she is cancer-free for five years. Now she feels fantastic, and is busy getting back to a normal life.

“I am squeezing in everything that I can,” Florence said of having to put so much on hold, for so many years. “I have a lot of catching up to do.”


Information from: Lewiston Tribune, https://www.lmtribune.com

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