Kidney Cancer Survivor
- Diagnosed in 2007 at age 67 with stage IV kidney cancer after a metastatic tumor shattered his leg
- Treated with sunitinib (Sutent), surgery, and radiation therapy for metastasis
- Began treatment in 2013 with nivolumab as part of a clinical study at SCCA
- Nearly cancer-free and living his normal life in 2014
On April 16, 2007, Richard Catlett, a 67-year-old, 6-foot-7, 260-pound fit gentleman, went to the gym. He trained on the Stairmaster’s top setting. He bench-pressed 200 pounds. He was feeling at the top of his game.
The very next day, on April 17, Richard walked out the front door of his house, and his left leg broke, just above the knee. “It disintegrated,” Richard said. “I thought I had been shot.”
Richard lives in the country on Washington’s Olympic Peninsula. There was nobody at home to help him. He couldn’t even get to a phone. So he yelled. He yelled, and he yelled, and eventually a neighbor heard him and called 911.
Richard was prepped for surgery the next day. “I overheard the word cancer a few times, but there was no way to say for sure yet,” he said. Richard got a rod and pins in his leg to hold his femur together. “And the next day, my general practitioner told me no cancer! But I didn’t believe him,” Richard said. “I knew something was wrong.”
Richard went home a few days after surgery and followed up with his regular doctor, but he wasn’t getting any better. He wasn’t healing.
“I started getting on the Internet every day, and I learned that bone cancer normally starts somewhere else,” he said.
Diagnosis: Clear Cell Carcinoma
After five weeks, Richard’s bone had hardly healed at all, so his orthopedic surgeon did a punch biopsy, taking a sample of deep layers of skin. The pathology report revealed clear cell carcinoma, a type of kidney cancer. A computed tomography (CT) scan showed a 10.4-centimeter (cm) tumor on Richard’s left kidney. What had shattered Richard’s left femur was a tumor that had spread from that kidney.
There was only one doctor for him to see near the town where he lived, so that’s the doctor he went to, but it wasn’t an ideal choice. “He was an internist, not an oncologist, and I didn’t like him,” Richard said.
Back on the Internet, Richard learned about sunitinib (Sutent), which was a new drug at the time that shrank advanced kidney cancer tumors but didn’t cure them. “That was a scary thing to learn,” Richard said. “Statistics didn’t include Sutent, but the survival rate to live past five years with this disease back then was less than one percent.”
Through his doctor, Richard started taking sunitinib, but still his leg never healed.
In May 2008, 13 months after his surgery, an orthopedic surgeon took the rod and pins, as well as a substantial section of the left femur, out of Richard’s leg. The surgeon replaced the rods and pins with new ones down to Richard’s calf and up to his hip. He also gave Richard a new knee.
“It was about this time that I learned that Sutent is an antiangiogenic drug [drug that prohibits new blood vessels from forming]—it interferes with healing,” Richard said. So he stopped taking the drug for a month to let his surgical wounds heal.
He also learned there are medical oncologists who specialize in kidney cancer, but there aren’t many. Scott S. Tykodi, MD, PhD, at Seattle Cancer Care Alliance (SCCA), is one of them, and Richard, who wanted more expert advice, was pleased to find him.
In January 2009, Richard saw Dr. Tykodi for a second opinion. The doctor recommended and arranged a radical left nephrectomy, surgery to remove Richard’s left kidney (outside of the SCCA system). “That surgery eliminated all visible signs of cancer,” Richard said. He had stopped the sunitinib just before the surgery, and for the next two years he took no medication. Back under the care of his internist, Richard had regular CT scans at three-month intervals that showed no signs of his disease.
More Cancer, Different Approach
However, during this time, another metastatic tumor had been developing, this time in Richard’s neck, in a paratracheal lymph node. Eventually, the tumor grew large enough to show up on Richard’s CT.
This time Richard took a new approach to treatment. “I consciously decided to live my expectations,” he said. “To focus [on the result I want], expect it, and it will happen.” He is living proof today that this tack, and medical science, are working for him.
Dr. Tykodi saw Richard again and recommended having the neck tumor removed, which Richard did. “That’s when I fired my internist and began seeing Dr. Tykodi [regularly],” Richard said.
In the years since his diagnosis, Richard has become well connected internationally with other kidney cancer patients. “I know about all the great national doctors around the country,” Richard said, “and they all talk about John A. Thompson, MD, and his group at SCCA, [which Dr. Tykodi is part of].”
Around this time, Richard also developed a 2-cm lung lesion, so Dr. Tykodi sent him to see Douglas Wood, MD, a cardiothoracic surgeon at UW Medical Center, who removed the lesion. Once again, there was no remaining evidence of disease in his body, and for two-and-a-half years he didn’t have any cancer treatment—until a 4.2-cm tumor was discovered in his right lung.
Richard didn’t want to have another surgery. “It was too painful,” he said. So he began researching again and learned about clinical studies of radiation therapy for his type of kidney cancer metastasis.
Olympic Medical Cancer Center (OMCC) in Sequim, Wash., had just acquired a new focal beam radiation machine, and Richard hoped they could use it to treat his cancer. The study he’d read about called for three months of sunitinib, followed by high-dose focal radiation, and then another three months of sunitinib.
“I wanted to try this [study radiation] for my lung lesion,” Richard said. Rena Zimmerman, MD, a radiation oncologist at OMCC, oversaw his radiation treatment, which appeared to work.
Again Richard showed no signs of cancer, until August 2013, when a regularly scheduled CT scan revealed many small lesions on his lungs and liver. Another scan a month later showed more lung tumors and a 10.4-cm mass on Richard’s liver. And they found a lumbar vertebrae lesion as well.
Is This It? What Can We Do?
Richard naturally thought this might be the end of the road for him. He wondered if there was any promising course of action to try. Another local doctor had him try a tyrosine-kinase inhibitor, pazopanib (Votrient), that blocks tumor growth, but it caused his heart rate to soar. So Richard went back to see Dr. Tykodi, who encouraged him to enroll in a clinical study of nivolumab, an immunotherapy drug, in October 2013. This medication blocks a protein called programmed cell death (PCD-1), freeing up the immune system around a tumor to attack the tumor cells.
“Eight weeks later, my tumors had reduced [in size] 58 percent!” Richard says. “It was a great Christmas present.”
Living with Kidney Cancer
Richard gets nivolumab by infusion at SCCA every two weeks. By August 2014, the treatment had eradicated nearly 90 percent of his lesions, and his vertebral tumors were gone. “The lung tumor, the last one, was last seen on a scan in June,” Richard said. His liver tumor had shrunk from 10.4 cm to 2.3 cm. And no new tumors had formed.
“The past seven years have been a huge experience for me,” Richard said. “The people who survive and contribute to science are why I’m here and lucky to be on this [clinical] trial myself.” Richard said he’s had no side effects from this treatment. He is nearly back to his old self and is exercising on his elliptical machine, lifting weights again, and tending to his two-and-a-half-acre garden.