Hope Through Clinical Trials
- Former Nebraska Senator and former University of Florida President Ben Sasse, 53, has announced he is battling stage-four metastatic pancreatic cancer and is determined to fight while focusing on faith, family, and hope in medical advances.
- Pancreatic cancer is a type of cancer that forms in the pancreas. It can be challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include unexplained weight loss, back pain, jaundice, and pain in the abdomen.
- Early-stage pancreatic cancer tumors don’t appear on imaging scans, and people typically don’t experience symptoms until the disease has progressed. The pancreas’ location in the abdomen makes it harder to find tumors. Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
- Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, explained that pancreatic cancer is difficult to treat because the cancer cells have a barrier called the stroma, which prevents cancer medications, including chemotherapy and radiation, from targeting and killing cancer cells.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for a disease you or a loved one are battling. These databases can also help you find doctors who specialize in your disease.
The 53-year-old politician, who shares his children with his wife of 30 years, Melissa McLeod, took to X to shared the news admitting his diagnosis is “hard for someone wired to work and build, but harder still as a husband and a dad.”
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This is a tough note to write, but since a bunch of you have started to suspect something, I’ll cut to the chase: Last week I was diagnosed with metastasized, stage-four pancreatic cancer, and am gonna die.
Advanced pancreatic is nasty stuff; it’s a death sentence.…
— Ben Sasse (@BenSasse) December 23, 2025
After expressing his faith in God, Sasse insisted, “I’m not going down without a fight.”
He explained further, “One sub-part of God’s grace is found in the jawdropping advances science has made the past few years in immunotherapy and more. Death and dying aren’t the same — the process of dying is still something to be lived.
“We’re zealously embracing a lot of gallows humor in our house, and I’ve pledged to do my part to run through the irreverent tape. But for now, as our family faces the reality of treatments, but more importantly as we celebrate Christmas, we wish you peace.”
Sasse’s diagnosis comes about a year and a half after he announced his wife had been diagnosed with epilepsy and “struggling with a new batch of memory issues.”
He said in a July 2024 post on X, “It’s been hard, but we’ve faced it together. A lot of late nights, a lot of hard decisions, and a lotta ‘what matters most?’ conversations. Our two wonderful daughters are in college, but our youngest is just turning 13.
“I’ve got two spectacular callings in life right now: First, I’m a husband and dad. Second, I’ve been blessed to serve as president of the best dang public university in America – Go Gators! – and I’ve loved the challenge of giving this university everything I’ve got. But here’s the bottom line: Those callings are significantly at odds with each other right now. Gator Nation needs a president who can keep charging hard, Melissa deserves a husband who can pull his weight, and my kids need a dad who can be home many more nights.”
Sasse stepped away from the presidency to prioritize what matters most, a choice we greatly respect.
It’s clear he is now resolved to remain strong and battle pancreatic cancer for the sake of those he loves.
It remains unclear what type of treatment plan Sasse will pursue, but he is undoubtedly working closely with his medical team to determine the best path forward. Sasse’s confidence in medical advances offers hope for both him and others battling the same disease.
Coping With a Pancreatic Cancer Diagnosis
Pancreatic cancer is a type of cancer that forms in the pancreas. It is more challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include weight gain, back pain, and jaundice.
Pancreatic cancer often comes with a slim chance of survival due to difficulty detecting it when it is more treatable.
Although pancreatic cancer survival rates have been improving, it’s still considered to be largely incurable. An exception to this is if the tumor is still small enough and localized enough to be operated on.
WATCH: Pancreatic cancer and early detection.
In a previous interview with SurvivorNet, Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, explains what he typically sees when patients develop this disease.
“Because the pancreas is inside the abdomen often doesn’t have symptoms that would tell you that something is wrong with your pancreas,” he says.
“By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it’s often very late in the stage of the disease.”
Meanwhile, parents, siblings and children of someone with pancreatic cancer are considered high risk for developing the disease because they are first-degree relatives of the individual. PGVs (pathogenic germline variants) are changes in reproductive cells (sperm or egg) that become part of the DNA in the cells of the offspring. Germline variants are passed from parents to their children, and are associated with increased risks of several cancer types, including pancreatic, ovarian and breast cancers. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer.
Jessica Everett, a genetic counselor at NYU Langone’s Perlmutter Cancer Center, encourages people in this category to look into possible screening options.
“If you’re concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have,” Everett told SurvivorNet in an earlier interview.
Additionally, note that up to ten percent of pancreatic cancer cases are caused by inherited genetic syndromes. So, if two or more members of your family have had pancreatic cancer, or if you have pancreatic cysts, it’s worth asking your doctor to check for pancreatic cancer since you’re at high risk.
The National Cancer Institute identifies pancreatic cancer symptoms to include:
- Dark urine
- Pain in the abdomen
- Unexplained weight loss
- Light-colored stools
- Loss of appetite and fatigue
Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
Progress in Pancreatic Cancer
Progress has been made over the last few years in the world of pancreatic cancer treatments. One clinical trial recently found that the drug Onivyde, in combination with chemotherapy in the so-called Nalirifox regimen, helped patients live longer compared with chemotherapy in previously untreated patients with metastatic pancreatic ductal adenocarcinoma (mPDAC), according to Ipsen, the pharmaceutical company that bought the drug.
“The prognosis for people diagnosed with pancreatic cancer is extremely poor and we plan to submit these new findings to the regulatory authority as, if approved, we believe this regimen could offer up an important new treatment option for people living with an aggressive and hard-to-treat cancer,” Howard Mayer, Executive Vice President and Head of Research and Development for Ipsen, previously said. “We thank the patients who participated in the study, their families and their healthcare teams.”
The drug is currently approved in the U.S., Europe, and Asia in combination with fluorouracil and leucovorin as a treatment for mPDAC after disease progression and following gemcitabine-based therapy.
Another example of progress being made comes in the form of immunotherapy, a type of cancer treatment that uses your own immune system to fight cancer.
“Up until now, immunotherapy hasn’t had a big role,” Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, previously told SurvivorNet.
Dr. Allyson Ocean explains why pancreatic cancer is so hard to treat.
A clinical trial led by researchers at the Perelman School of Medicine at the University of Pennsylvania, and sponsored by the Parker Institute for Cancer Immunotherapy, found “combination of chemotherapy with an immunotherapy meant to unleash the anticancer capacity of the immune system was effective against one of the hardest targets in cancer care, pancreatic cancer,” said Penn Medicine.
“The researchers found that in 34 patients with advanced pancreatic cancer randomized to receive the immunotherapy nivolumab with two chemotherapy drugs, nab-paclitaxel and gemcitabine, had a one-year survival rate of 57.7 percent, significantly greater than the historical average of 35 percent with chemotherapy alone,” the institution said.
Dr. Benjamin Musher, the director of medical oncology at the Dan L Duncan Comprehensive Cancer at Baylor St. Luke’s Medical Center, recently said there were currently multiple “home-grown clinical trials testing novel immunotherapies in all stages of pancreatic cancer studies underway at Baylor St. Luke’s.” But only about 5 percent of patients with pancreatic cancer participate in such studies.
“We know that we are not going to improve outcomes without more patients enrolling,” Musher said.
Hope In Clinical Trials
In addition, there are immunotherapy clinical trial innovations being made to allow for multiple immunotherapeutic approaches to be tested and compared to one or several standard-of-care options within trials. In other words, “investigational treatments can be added or dropped from the trial over time, depending on preclinical and clinical evidence.”
“We’re encouraged by the trend toward more innovative clinical trial designs to improve the drug development process and ultimately lead to better patient outcomes,” PanCAN Chief Science Officer Lynn Matrisian said in a recent article from the Pancreatic Cancer Action Network.
Clinical trials, in general, are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can play an important role for some patients’ treatment, but they also serve a larger purpose.
“Clinical trials hopefully can benefit you, but it’s also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said. “We need everyone to be partners with us if we’re ever going to truly cure cancer or prevent people from having to die from cancer.”
Expert Resources on Clinical Trials
- Clinical Trials Can be Life-Saving for Some
- Clinical Trials and What Statistics Really Mean
- Access Experimental Treatment Options: Clinical Trials At The VA
- An Evidence-Based Approach to Discussing Clinical Trials With Your Patients
- Are You Looking For A Breakthrough Cancer Treatment Like The One Making Headlines Now? We Can Help You Find A Clinical Trial
- Clinical Trials Need More Minority Patients
- Clinical Trials Using CAR-T Cells Are Extremely Promising
- How a Clinical Trial Might Improve Your Outlook
That being said, there is no guarantee you’ll receive more effective treatment than the standard of care, and clinical trials certainly aren’t right for everyone. You should always talk with your doctor(s) before getting involved in one. Some risks to consider are:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects for experimental treatments
- The treatment may not work for you, even if it has worked for others
But if you’ve already decided that a clinical trial is right for you or you’re just beginning to explore your treatment options, you should know that SurvivorNet has a tool for you. The SurvivorNet Clinical Trial Finder: an A.I. driven tool for patients to find clinical trial options for treatment.
The tool is built on top of clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world, and gives access to more than 100,000+ individual clinical trials, updated daily.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said.
“Even one percent more people successfully enrolled in clinical trials can change the world.”
Understanding Clinical Trials
Clinical trials are available for eligible cancer patients if other treatment options don’t seem to work. A clinical trial can be defined as a research study that compares the most effective known treatment for a specific type or stage of a disease with a new approach.
Participating in one does not guarantee you will get the most effective treatment and they are certainly not for everyone, but it does give you the chance to potentially access new, cutting-edge treatments while advancing science.
Before getting involved in a clinical trial, talk with your doctor(s) and consider the following general risks of enrolling:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects for experimental treatments
- The treatment may not work for you, even if it has worked for others
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said.
“Even one percent more people successfully enrolled in clinical trials can change the world.”
Why I’d Choose a Clinical Trial For Myself
Your doctor may have spoken with you about possibly enrolling in a trial if you have advanced disease or if there’s a drug that’s currently considered investigational that may work better than the standard for you.
A lot of patients may feel uncomfortable about the thought of participating in a trial, but the trials can provide amazing opportunities for patients. For one thing, they give patients access to a bevy of new drugs that are currently being developed by pharmaceutical companies.
If participating in a clinical trial is something you think you may be interested in, the government has a list of trials that are currently ongoing. SurvivorNet also has a tool to help you find trials for your particular disease.
Your doctor may have spoken with you about possibly enrolling in a trial if you have advanced disease or if there’s a drug that’s currently considered investigational that may work better than the standard for you.
Contributing: SurvivorNet Staff
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