Stage 4 Pancreatic Cancer Survivor Shares Clinical Trial Path

Dan, a Cleveland-based lawyer diagnosed with stage 4 pancreatic cancer just before turning 41, shared his experience in an interview with CURE. He encouraged patients to ask questions, seek multiple opinions and use resources like clinicaltrials.gov alongside their oncologist. Today, he is 45, in complete remission and treatment-free.

Dan decided to pursue clinical trials after recognizing that chemotherapy would not be a lasting solution and began asking early what options could come next while his cancer was still responding. He described how self-advocacy, second opinions and researching trials based on his genetic markers helped open additional treatment opportunities.

Transcript

How did you decide to participate in a clinical trial, and what influenced your decision to pursue an experimental treatment?

I did two clinical trials. The first one was an immunotherapy and a PARP inhibitor. I did Keytruda (pembrolizumab) and Lynparza (olaparib) for about two years, and then the second one was an early-stage trial. Both of them were through Memorial Sloan Kettering Cancer Center.

I knew both from the knowledge within my family and through conversations with my treating doctors at the clinic that chemotherapy was only going to work for so long, or my body would only be able to tolerate chemotherapy for so long. That was not an end state. That was the first step of hopefully at least a few steps.

Once we got settled back in Cleveland, once I started chemotherapy, and once I was settled into that routine, we started asking questions of my oncologist at the Cleveland Clinic: what trials was the clinic involved in? What options and opportunities did they see for me? We had those conversations within the Cleveland Clinic world, and then my family began looking through clinicaltrials.gov. They were comfortable enough with the vocabulary and everything else to pinpoint options based on the genetic markers I had, the stage of the disease (which was stage 4) and the fact that my tumors were responding to chemotherapy. They were able to identify different hospitals and groups around the country engaged in pancreatic cancer trials that I might eventually be eligible for.

About halfway through my chemotherapy, they started sending messages, saying, “Hey, you guys are running these trials. We’d like more information. Could we get a secondary consultation with you?” We went through the whole clinic onboarding process, the insurance process, and ended up having consults with both the MSK team and the MD Anderson team. Through that, little by little, we got more information on what I would be eligible for, and we ended up making decisions about which paths to pursue.

The important thing about that — there are a couple of things. Number one: patients need to advocate for themselves. They need to ask questions as early as possible: “Is this working? What’s next? What can I do next? How can I find out what to do next?” If that involves seeing other doctors, no doctor should be upset that you’re seeking additional opinions. It’s strange, patients facing something as difficult as stage 4 pancreatic cancer won’t necessarily want to let their doctor know they’re seeing another doctor, or they might not want to ask about other doctors because they don’t want to be impolite, hurt someone’s feelings, or think the doctor will get annoyed. Any doctor I’ve met does not think that way.

Patients need to feel comfortable asking for secondary consults, other opinions, and additional opportunities. Not every oncologist has all the information. Different people are doing different things at different times, and treating oncologists aren’t necessarily the same people conducting the trials. The more information you can get, the more questions you can ask, and the more conversations you can have, the higher the possibility you will uncover opportunities your treating oncologists didn’t know existed.

Outside of conversations with your doctor, if you can figure out how to use clinicaltrials.gov, that is a great resource. It’s not very user-friendly, and the vocabulary can be difficult, but ChatGPT plus clinicaltrials.gov can help identify potential trials you can then discuss with doctors who might have other opportunities. I would really encourage people to do both of those things to the extent they can.

Transcript has been edited for clarity and conciseness.

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