PORT ST. LUCIE — After waiting more than two months for access to an experimental treatment, Port St. Lucie resident Russell Reed has begun taking a drug he hopes will slow the progression of his stage 4 pancreatic cancer.
Reed, 64, was recently approved to receive daraxonrasib, an investigational drug designed to target certain KRAS mutations associated with pancreatic cancer after his previous treatment options were no longer effective.
The decision to pursue the medication came after his chemotherapy stopped working.
"It really came to the forefront when the last chemotherapy treatment stopped working. It really was the most cutting-edge treatment option at the time for me. It was specifically for metastases to the liver," Reed said.
His wife, Marnie Reed, said much of the delay stemmed from the Expanded Access Program process being unfamiliar to those involved. As the couple waited for approval, they found the uncertainty especially difficult given the urgency of Russell's diagnosis.
"I would have hoped that, given the urgency of pancreatic cancer and the number of people across our country that need it, I would have hoped that the manufacturer would have staged it so that the thousands of nearest and dearest that applauded the announcement of the EAP out of the FDA and at ASCO would have said, 'Okay, here's what you need to do in order to get it to your patients,'" she said.
Despite the lengthy process, the Reeds said they do not blame anyone for the delay. Instead, they remember the moment they learned the medication had finally been approved.
"My goodness. It was pure joy. Pure joy," Russell Reed said. "We drove to Hollywood immediately when we got the call. We got to the office. Our oncologist was just all smiles. It was overwhelming, to be honest, and humbling because we learned in that room how much people care."
While daraxonrasib is not considered a cure, Reed said the opportunity to continue treatment represents something far more meaningful than medicine alone.
"It means everything. I'm 64 years old. I have a wife that cares about me and wants to keep me on this planet longer and has done everything in her power to make that happen," he said. "We have three kids. We have a grandchild. We want more time. We're world travelers. We want to travel again. We are going to travel again in October. It just means everything. I'll take as much time, and we'll make every day count. That's what it's all about, really, is making every day count."
The Reeds' efforts to secure the treatment drew widespread attention, leading to support from community members and public officials. Among those who assisted was U.S. Rep. Brian Mast, who helped facilitate a call between the family and the U.S. Food and Drug Administration.
Marnie Reed said the response from people following their story exceeded anything she expected.
"I never really lifted my head long enough to realize how many people out there were in the same or worse than we were, who were also grappling with the urgency of getting this drug. The support and kindness that came, overwhelmingly globally and in a very large amount, was completely shocking to me," she said.
Now that Russell has started treatment, the couple hopes their experience encourages others facing similar circumstances to continue advocating for themselves and their loved ones.
"When someone tells you, 'Wait,' and you're looking at the person you love, whomever that is, that is not an option. I don't feel that that's an option," Marnie Reed said. "So when people tell me it's coming or you'll have to wait until this, no, I'm not waiting. Husband is sick, and he has a very urgent cancer. So the answer to that politely is no."
Russell Reed echoed that message.
"And the longer you wait, the worse it's going to get. So get into a place. Don't take no for an answer. And then once you get in the fight, just like Jimmy Valvano said, never give up," he said. "Don't ever give up."
With treatment now underway and working, Reed said he is looking ahead to traveling with Marnie and their children once again and celebrating his wife's upcoming birthdays to come.