Carl Gehringer, participant in a Phase 1 trial at UH after lung cancer diagnosis
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(Gallery by Lynn Ischay, The Plain Dealer)
CLEVELAND, Ohio — Carl Gehringer Jr. had spent nearly four months on a Phase 1 clinical trial at UH Seidman Cancer Center, taking a combination of a study drug with chemotherapy for cancer patients with liver or kidney dysfunction, when he started complaining about feeling ill.
In mid-August, Gehringer's girlfriend, Sue Leffard of Morgantown, W.Va., had taken a few weeks off from her job as a dietitian to stay with him at his suburban Youngstown home. It was Leffard who took him to St. Elizabeth Boardman Health Center to get checked out.
A couple of days later, nurse Nancy Horvath, research study coordinator for Gehringer's trial, saw the results of the blood tests done at St. Elizabeth. She called him and told him that he needed to come into Seidman for a blood transfusion. His blood platelets were too low, a common side effect of chemotherapy.
Even with the 2-liter transfusion, which took two hours, his platelet levels remained low. Gehringer returned for his appointment Aug. 20, anticipating that he would get his next chemotherapy infusion two days later. But Horvath told him the treatment would have to be delayed a week.
Carl Gehringer Jr. in 2008.
Carl Gehringer Jr., Youngstown
Diagnosed: November 2009, lung cancer that spread to his liver.
Phase 1 clinical trial: A combination of two chemotherapy drugs, carboplatin and paclitaxel, and a pharmaceutical-developed study drug for solid-tumor cancer patients who have liver or kidney dysfunction.
"So, I won't hold you to it, but where do you think we'll go from here? Have a little bit of a break?" Gehringer asked. He wanted a clear picture of what he faced after he was finally able to complete his sixth and last treatment on the trial the following week.
Horvath told him that was a question that his oncologist, Dr. Afshin Dowlati, would have to answer when he arrived in a few minutes.
"I'm not sure," she said. "You probably will need a break. We usually give patients a little bit of a break to give your body time to recover."
When Dowlati entered the exam room, he asked Gehringer how he felt.
"Sluggish," he replied.
"My energy level is not as vibrant and yet my downside is not as low," he said.
A former smoker who had been diagnosed with lung cancer in late 2009, he was coughing more than usual, mainly in the mornings. He had a tingling sensation in his fingertips and his feet. His writing had changed. He couldn't grip a pen as well as before.
Because Gehringer was getting the highest level of chemotherapy offered as part of the trial, Dowlati said he would definitely take a break before deciding if they wanted to do something else down the road.
"I think you're doing well from a cancer standpoint," Dowlati said. "I think we're on the right track. When we're done ... it's just sitting tight, going back to normal life as much as you can."
The plan after Gehringer's last treatment infusion, now pushed back until Aug. 29, was to do another CT scan two weeks after that to see if the cancer was stable or if it had spread. If it was stable, Gehringer would come back for a follow-up appointment in one to two months.
If the cancer had spread, they would start discussing other options, if there were any.
After Dowlati left, Gehringer said to Horvath, "I'm kind of anxious to see the CT scan. I hope there's some substantial reduction."
There wasn't.
On Sept. 17, with Leffard again at his side, Gehringer found out his cancer was progressing.
A month and a half later, Gehringer returned to Seidman in the hopes of being screened for a trial they had identified for him. But he could barely walk, had fluid buildup in his belly and excruciating pain on the right side of his abdomen -- on a scale of 1 to 10, his pain was a 7. Dowlati admitted him to the hospital to find out why Gehringer had started physically declining so quickly in the past 10 days.
"Do you have a luxury suite for me?" Gehringer joked with Dowlati.
"It's a five-star hotel here," the doctor replied. "Within a few days, we'll know what's going on."
Two days later, Dowlati stopped by Gehringer's sixth-floor hospital room.
Dowlati sat on the corner of the bed. Gehringer, hooked up to oxygen, was sitting in a wheelchair. The bed had been too uncomfortable for sleep.
The latest CT scan showed that the cancer had spread and was beyond treatment.
"I think we had a good result in previous treatment that kept things going six, eight months there," Dowlati said. But with the way that the cancer was now growing, there were no more options.
They needed to shift their focus to making Gehringer as comfortable as possible. To manage the pain. To focus on hospice care.
His gaze already on Dowlati, Gehringer sat up straighter and leaned in slightly to look at the doctor more closely.
"There's nothing else out there, no place else to go?" Gehringer asked.
"I'll be honest with you, Carl ... We've looked into everything," Dowlati said. "If there was the slightest possibility to go down that specific pathway, I would offer that to you. I would never deny that."
A few seconds passed. Silence.
"What do you think went wrong with the treatment? Not you, but ..." Gehringer asked.
"This is cancer we're dealing with," Dowlati said, assuring Gehringer that his question wasn't uncommon. "And cancer has a mind of its own. It will decide when it wants to grow, and it'll decide when it's gonna respond to our treatments. That's the nature of cancer."
"I appreciate what you've done," Gehringer said. "I don't think I could have been in better hands."
He asked Dowlati how much time he had left.
It could be months, Dowlati said -- one month, three months, maybe six.
After spending about 15 minutes talking, the two men shook hands and Dowlati left the room.
Gehringer bowed his head in resignation.
"It's a very difficult thing to hear that your life ... may be shortened," he said. "But with the pain that I'm going through, it's ... tolerable."
The next day, he went home.
On Nov. 14, two days after he moved into St. Elizabeth Boardman Health Center Hospice House, he died.
Up until then, he never lost hope that there was something else out there that might help him, said Leffard. He made calls to other oncologists and his pulmonary physician. He never stopped talking about the next treatment.
"He was optimistic," she said in January. "He never gave up on anything.
"He really thought something was going to come along."
Set up by a mutual friend 11 years earlier, Leffard said the couple had a lot of common interests. They loved the water and skiing. Neither had ever married.
"He was such a brave, 'love life' kind of guy," she said. Never an outwardly spiritual person, Gehringer had begun to change his outlook during the last few months of his life, Leffard said.
"Once he was well again, his mission was going to be to go out and help people with lung cancer and be a proponent for prevention," she said.
"He started to feel like there was a purpose for all of this."
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