SUNRiSE-1 Participant Shares Insights on Bladder Cancer Education

For patients facing Bacillus Calmette-Guérin (BCG)-unresponsive non-muscle invasive bladder cancer (NMIBC), navigating treatment options can feel overwhelming, particularly when awareness about the disease and emerging therapies is limited. Bill Parisi, a participant in the SUNRiSE-1 clinical trial for Inlexzo, shared candidly how education shaped his treatment journey.

Initially unsure of what the procedure would entail, he relied on trust and determination to move forward, but he also recognized the value of sharing his experience to help others understand the process and potential benefits.

Parisi sat down for an interview with CURE to discuss the now-FDA-approved therapy. He emphasized that participating in the trial was about more than just his own care, but it was also an opportunity to educate fellow patients and families.

CURE: How crucial do you think public awareness and education about bladder cancer are for patients, families, and caregivers in navigating diagnosis and treatment options?

Parisi: I went at this not really knowing, because I was really kept in dark a bit about the procedure and everything. I think I would have jumped on it harder had I known what the procedure was going to be and it would have been a little easier for me. I kind of closed my eyes and said, “Okay, let's go. Whatever you got to do, let's do.”

I remember saying to Dr. Daneshmand, "If you want to bring anybody in to see this procedure in an event that it does work, bring him in. Let's educate as many people as possible.”
And they were a couple of times there were a fair amount of people in the room.

And I remembered Dr. Daneshmand saying again, "Jeez, it doesn't bother you to have these people in while your pants are down?"

I said, “Like I said, if it helps somebody or it’s teaching these people, then that's what it's all about.” I didn't mind being, I don't know if you want to use this, but I didn't mind being a guinea pig. I didn't mind being in the hamster on the wheel. I was in. I was into it all the way.

How important do you think it is for patients and families to hear firsthand from someone who has gone through this treatment, and how might these stories help others feel more confident considering new therapies for BCG-unresponsive non-muscle invasive bladder cancer?

That's the whole idea! The travel was a pain in the butt, but at the same time, I just loved everybody I dealt with down at Keck. I can't tell you how many people I've referred because of the way you're treated, the way you're handled. Everybody handled me so nicely. That's kind of important. You're not just a number, you know?

There were a couple of times when I had gotten bladder infections, and there was always somebody that would help me. If I couldn't be in touch with the regular folks, there was always a doctor on call or on the side who would call in an antibiotic for me. They would open my file and say, "Oh, okay, yeah, you have a bladder infection. Let's take care of that."

Those were tough times working and having a bladder infection. In case you've never had a bladder infection, just so you know, there's no running to the bathroom. Sometimes you don't even get a chance for that. There were many times I would go home and change my pants.

But here again, having the backup at Keck and the people that are just fabulous over there and are your backup. I mean, I can't say enough good things about Keck.

Lastly, do you have any important messages or thoughts that you would like to share with other patients? Do you have any messages that you'd like to share about your experience?


Once again, don't give up the fight. Positive thinking is the main thing. Like I said, follow your prescription, whatever it is. There were times when I had to go get a CT scan or other procedures where they put the chemicals so that they could follow my bladder. Was it uncomfortable? Absolutely, but it's for your benefit. That's the big secret.

I cannot tell you enough, having the people to rely on that would keep me in the loop, who would make sure I was healthy going through this, and to follow the prescription. It would have been real easy to say, “No, I'm not going to go this week.” But you have to put on your big boy or big girl shoes and you go out and do it. That's the difference.

I'm sure there are a lot of people, and like I said, when I heard there were three or four that quit, it was just beyond me that they would quit and not stick to it.

Reference

1. FDA Approves Inlexzo for Some With Non–Muscle Invasive Bladder Cancer, by Alex Biese. CURE; Sept. 9, 2025. https://www.curetoday.com/view/fda-approves-inlexzo-for-some-with-non-muscle-invasive-bladder-cancer

Transcript has been edited for clarity and conciseness.

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