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YOUNGSTOWN, N.Y. — Every single day in the U.S., about 5,500 people get a new cancer diagnosis, according to the National Cancer Institute. With new treatments coming out all the time, progress is being made.
For bladder cancer, things moved along a bit more slowly. Last year, a new drug was approved by the Food and Drug Administration. It was good news for Youngstown resident Ray Page.
“I have everything I need to do, everything I want to do,” Page said, raking through home improvement materials.
Page has done carpentry since he was a teenager. He has a whole list of projects he’d like to get to, but life – as it does – got in the way.
“Everything all ripped out of here and ready to go," Page said. "And it didn’t happen.”
Page went to his doctor for what he believed was an enlarged prostate last year. That’s when he got the news.
“I looked at the screen and he said, ‘This is a very small tumor.’ And then he pulled back a little bit with the scope, and there was a very large tumor. And he told me, ‘My friend, I’ve been doing this for a long time, I think, and I’m 100% positive that’s bladder cancer.’”
Ray, like about 84,000 new bladder cancer patients each year, got put on Bacillus Calmette-Guérin (BCG), the "gold standard" for treatment.
“Some genius […] thought of putting a tuberculosis vaccine in the bladder in the 70s," said Dr. Joseph Jacob, the director of urologic oncology at Upstate Medical University. "We’ve been using it ever since.”
Jacob says it works for most patients, but for Page, it didn’t go well.
“Every side effect I think that you could get, I had it," said Page. "I just had to put everything on pause. I couldn’t do anything.”
The BCG wasn’t working, tumors were coming back, and choices had to be made.
“The standard would be to remove the bladder, which is a huge deal for patients,” explained Jacob.
Last September, though, the FDA approved a drug called Inlexo.
Unlike BCG, which patients have to hold in their bladder for as long as possible before peeing, this gets placed and stays in for three weeks, releasing the drug over time.
“It’s the best results that we’ve seen in this space of patients who have failed BCG and received Inlexo," said Jacob. "It was 83% complete response rate, meaning cancer went away completely.”
Ray got approved for a patient assistance program and was the first patient in Western New York to get the drug. It came at no cost to him.
“There is a wire that maintains the shape,” he explained, pointing to a photo of the pretzel-shaped drug-releasing system.
After a few bumpy treatments, it started to change everything.
“I have more energy. I can go out and do things now that I never could do when I was on the BCG,” Page explained.
At last check, Page is totally tumor-free and already thinking about getting back to his to-do list with his sons.
“It’s nice to be able to tell your kids what to do and have the lead on it, instead of laying in bed hoping they’re doing it right,” he laughed.
He’s posted about his experience on Facebook groups and continues to spread the word, making more patients aware and inspiring more game-changers.
“Finally, people are hearing about it, talking about it," said Jacob. "More importantly, the amount of resources that are getting poured and all this new research that’s coming out, we finally have more options to offer.”
Page considers himself living proof of just what those options can do.
“With BCG, I thought I was never going to get better," he said. "And right now, it’s going great.”
Once a doctor and patient agree this drug might be the best course of action, Johnson & Johnson do offer a variety of patient supports to help or waive high copays.
While there are side effects, mostly urinary-related, Jacob notes most patients are willing to risk that over getting their bladder removed.
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