LINCOLN, Neb. — There’s Joe Biden’s official cancer moonshot — and then there’s Colontown.
Patients without time to wait for a big taxpayer-powered breakthrough are putting their trust in the latter. They’re trying to craft their own individual moonshots with scraps of data they’ve collected from other patients in Colontown, a members-only Facebook page for colorectal cancer patients.
“We are no longer sitting back and letting docs say, ‘Here’s your expiration date,’” said Erika Hanson Brown, a colon cancer survivor who started the page and is now called the mayor of Colontown. “This is self-activism at its best.”
Among the many virtual visitors to Colontown: AJ Gengler, a 33-year-old mother of two who lives here in eastern Nebraska. Diagnosed with stage 4 colon cancer last year, she’s had three surgeries and just finished her second course of chemotherapy. Now, she’s trying to plot her next steps if her tumors start growing again.
“The average Joe Schmoe doesn’t have much of a chance with the clinical trial scene unless they have a stellar oncologist,” Gengler said.
That’s where Colontown comes in.
The site is divided into 40 “neighborhoods,” many with gallows humor names, to help members find others with similar diagnoses. Among them: Rectalburgh, Poop Shoot Group, and Four Corners, for patients with stage 4 cancer. Patients interested in clinical trials, like Gengler, often congregate in a section of the page dubbed The Clinic, where they share personal anecdotes, report back from medical conferences, and learn about the science behind new treatments from patients who also happen to work in drug development.
“There’s a whole behind-the-scenes system of patients and scientists helping each other out, because the mainstream system is so broken,” Gengler said. She figures she’s getting firsthand data from clinical trials a year or two before they are published.
“Even though it’s anecdotal, it’s very, very accurate,” said Tom Marsilje, a scientist and colon cancer patient who helps run The Clinic.
But relying on word-of-mouth can also carry risks. Dr. Eric Haas, division chief of colon and rectal surgery at Houston Methodist Hospital, warned that patients could end up wasting precious time on unproven therapies if they put too much stock in anecdotal evidence.
“We’re dealing with a population that can be — I don’t know if desperate is the right word, but maybe too open to a false sense of hope,” Haas said. “I’ve been involved with a lot of patients who have gone down the wrong pathway seeking help from resources that are not going to be helpful.”
The federal government has its own site dedicated to clinical trials, the National Institutes of Health’s clinicaltrials.gov, but it can be unwieldy.
“It’s a beast,” said Charlie Surh, a 55-year-old immunologist, stage 4 colon cancer patient, and regular at The Clinic. With information on tens of thousands of clinical trials, the site “is like a classifieds section [of a newspaper]. … You have to know what you’re looking for and where you want to get it, otherwise it’s going to be very difficult.”
He finds it easier to get the news from Colontown.
Just in the last week, there were updates from members enrolled in three clinical trials: One was getting immunotherapy, another received a cancer-killing oncolytic virus, and a third got a combination of two drugs approved to treat different kinds of cancer.
Visitors can also download a detailed spreadsheet of clinical trials put together by Marsilje, who sifts through the government website every week.
Brown founded Colontown six years ago in hopes of sparing others the feeling of isolation she had when she was going through cancer treatment.
“I was very sick. I thought I was going to die, and I had nobody to talk to,” said Brown, who lives in Falls Church, Va. “I wanted relevant, experienced information right now, and I didn’t have the strength to dig for it. I needed it then and didn’t get it.”
Colontown now has 2,500 members, including 500 who frequent The Clinic. No one is allowed to join without talking to Brown first; she stresses that they must be kind and respectful, she said. Last year, the nonprofit patient advocacy group Colon Cancer Alliance began sponsoring the page, and now pays Brown to administer it.
The site, she said, levels the playing field, giving all patients access to the most up-to-date information, sometimes even before their oncologists hear it.
“It’s information they take back to their doctors, and the doctors say, ‘How did you know that?’” Brown said. “It doesn’t take a rocket scientist to know that not all doctors are created equal and not all hospitals are the same.”
Stephen Savage-Estrada found that out first hand: Diagnosed with stage 4 colon cancer at 28, he said his oncologist was “doom and gloom all the time.” After meeting Colontown members at a holiday party in Denver, Savage-Estrada said he had the confidence to switch to a new cancer specialist.
“I think meeting people my age was critical at that point,” said Savage-Estrada, a hair stylist. “At that point, I really just wanted to know: Was I going to die?”
Savage-Estrada’s new oncologist discovered he had Lynch syndrome, a genetic condition making him more susceptible to colon cancer. Savage-Estrada took part in an immunotherapy trial and is now cancer-free.
As for Gengler, she learned at her most recent appointment that the small tumors in her lungs had not spread. Her oncologist advised against more chemotherapy because the drugs take such a physical toll. For now, Gengler said, her doctor will simply monitor her condition.
And she will monitor Colontown. She’s heard there’s a trial in Heidelberg, Germany, showing real promise.