Ben Sasse’s face is so bloodied that people think he’s been struck with acid or electric shocks, the former senator claimed this week.
The truth, however, is that Sasse’s appearance is the result of an experimental treatment he is undergoing to fight his terminal cancer diagnosis.
The 54-year-old father-of-three, who represented Nebraska from 2015 to 2023, was diagnosed with stage 4 pancreatic cancer in mid-December — and given just four months to live.
Pancreatic cancer is considered one of the deadliest forms of the disease because 13 percent of patients do not live longer for five years. For those diagnosed at stage 4, like Sasse, barely three percent survive this long.
Now, it has been 99 days since his diagnosis, and Sasse says, although he never planned to ‘die in public,’ he feels he ended up with a ‘calling to die.’
As part of his battle, he is undergoing treatment with daraxonrasib, a drug that can treat pancreatic cancer by disabling proteins that drive tumor growth.
The drug has shrunk his tumors by 76 percent so far, but he knows that it will probably not save his life, as he said tumors keep emerging in new places, describing treatment as like playing ‘Whac-a-mole’.
While the pill has kept the cancer at bay for now, it comes with a nasty side effect that prevents his skin from regrowing, causing him to bleed in places all over his body — including on his face.
Sasse is shown above on a broadcast for Focus on the Family podcast in March this year
In a wide-ranging interview with the New York Times, he said: ‘I did not decide to die in public. I obviously ended up with a calling to die.
‘In mid-December, I got a three- to four-month life expectancy, and I’m at Day 99 or something since then, and I’m doing a heck of a lot better than I was doing at Christmas.
‘But even at three to four months to live, you have to redeem the time. There’s only so many bits of unsolicited advice I can give my children.’
He added: ‘I didn’t like the idea of my 14-year-old son not having a dad around at 16. I didn’t like the idea of my daughters, who are 22 and 24, not having their dad there to walk them down the aisle. I felt a real heaviness about that.
‘But I’ve continued to feel a peace about the fact that death is something that we should hate. We should call it a wicked thief.
‘And yet, it’s pretty good that you pass through the vale of tears one time and then there will be no more tears, there will be no more cancer.’
Sasse was a senator from 2015 to 2023 and was well known as an independent conservative voice within the Republican party.
He was also a prominent critic of President Donald Trump, being one of the seven Republicans who voted to impeach him over charges of insurrection.
In 2023, he stepped back from politics to become the president of the University of Florida, saying he wanted to pursue a different model of civic reform.
Health-conscious in his 50s, he would take part in sprint triathlons – multi-course races where contestants complete a swim, bike ride and run in under two hours.
Sasse, a senator for Nebraska until 2023, was a prominent independent conservative voice in the Republican party. He was also a critic of President Donald Trump
But in October last year, he began to experience a ‘ton of back pain.’ At first, he blamed it on his 45lbs weighted vest or thought it was because he pulled a muscle.
When the pain continued to worsen, however, he saw his doctor who ordered a battery of tests and a full-body scan.
Forty-five minutes after the scan, doctors called him to say his torso was ‘chock-full’ of tumors and diagnosed him with stage 4 pancreatic cancer.
Ben Sasse, 54, has opened up about his battle with stage four pancreatic cancer. He is shown above with a bloodied face, which he said was the result of experimental treatment
Pancreatic cancer begins as a growth of cells in the pancreas, an organ behind the lower part of the stomach that makes enzymes to help digest food and hormones that help manage blood sugar.
It is one of the most feared cancers in America because, in its early stages, its symptoms — such as a dull headache, intermittent indigestion or unexplained fatigue — are vague and easily dismissed.
This means that often, by the time the disease is finally diagnosed, it has spread and become much harder to treat, making the cancer a death sentence.
Patients may be treated with surgery, radiation or chemotherapy, but if the cancer is too advanced, these will likely only delay the disease rather than cure it.
About 67,000 Americans are diagnosed with the cancer every year, while more than 52,000 die from the disease.
Overall, just 13 percent of patients survive for five years or more after their diagnosis. Among those diagnosed at stage four, like Sasse, only three percent live for five years.
Once largely considered a disease of older adults, most commonly affecting people over 65 years old and particularly those with diabetes or obesity, doctors say it is now rising among young people.
Sasse said that when he was diagnosed with the cancer, doctors said his body was riddled with tumors
Sasse is pictured above, left. He said he does not believe the experimental treatment will clear his cancer
Sasse said that when he received the diagnosis, doctors told him he actually had four other cancers in addition to pancreatic: Lymphoma, cancer of the white blood cells, vascular, cancer of the blood vessels, lung cancer and liver cancer.
Doctors said these were triggered by the pancreatic cancer spreading in the body, and causing cancer in other areas. His original spinal pain that pushed him to go to the doctor was caused by pancreatic tumors that were pushing on his spinal column.
He said: ‘So, it was pretty clear that we were dealing with a short number of months.
‘I said, I believe we’re all on the clock. We’re all dying. So, this is not the scariest thing to me. [But] I have kids out of the house — our daughters are 24 and 22. But our providential surprise, our boy, is a decade younger. I was immediately thinking about Melissa [my wife], my best friend of 33 years.’
Doctors initially offered him chemotherapy, radiation and surgery, but said they were not confident these would be successful.
Sasse has not said whether he received any of the treatments, but said that shortly after his diagnosis, he was looking for a clinical trial to join.
Within two weeks, he had been accepted into MD Anderson Houston’s trial for the drug daraxonrasib, which has been designed specifically to treat some forms of pancreatic, lung and colon cancers.
In its phase 1 trial, patients receiving the drug who had pancreatic cancer survived for 13.1 and 15.6 months on average. This was longer than the 7.4 months longer than among patients who were treated with the current standard medications.
He is now in Houston up to two days a week for the treatment, and receives it orally, with doctors monitoring for side effects.
Besides the bleeding skin, he said he is also suffering with constant pain and regular nausea that often causes him to vomit.
He said his face typically feels ‘nuclear’ and like it is burning and is in the pharmacy every day seeking medications to ease the side-effects.
Although the drug has reduced the size of his tumors, he said that doctors tell him that because there is already so much cancer across his body, it is unlikely that the drug will be able to cure the disease and save his life.
He did not give an updated prognosis, but said that after starting the treatment he has felt ‘better than I deserve’.
He said: ‘Death is terrible. We should never sugarcoat it. It is not how things are meant to be.
‘But it is great that death can be called the final enemy. It’s an enemy, but a final enemy.
‘And then, there will be no more tears.’
