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Access to Clinical Trials Turns Cancer into ‘An Adventure’

“I call it an adventure.” That’s how Bob Siemon talks about his now five-year battle with Stage 4 colorectal cancer.

A positive person by nature, Bob doesn’t describe the two series of chemotherapy, the radiation, the sickness, physical weakness and clinical trials as a struggle or a fight. It’s an adventure.

It has been a perilous adventure, to be sure. One he did not seek. But it has been an adventure that has had surprising highs to match the terrifying lows. Most significantly, Bob’s adventure has brought him into the compassionate company of a medical team that he says words don’t adequately describe.

“The people at Hoag Family Cancer Institute, I can’t say enough wonderful things about them,” Bob said. “Everyone, the doctors the nurses and the volunteers, they are so kind. When people give you love, it means everything. They’re working as hard as I am to save me.”

Colorectal cancer often develops without any symptoms, allowing it to go undetected in its early stages. In Bob’s case, by the time doctors found the cancer, it had metastasized to his lungs.

“The doctor said, ‘You have less than 5 percent chance of survival.’ ‘If there is a 5 percent survival rate, then you’re looking at one of the 5 percent. I’m going to beat this thing.’”

I was 64. I thought, ‘I have so much to live for. I don’t want to die.’ I told the doctor, That became his mantra, the soundtrack to his adventure, inspired by a Tom Petty song, “I Won’t Back Down”...“I wanted to eradicate the cancer 100 percent from my system. I want to live a long normal life.”

To do that required going above and beyond the traditional modes of treatment. After his first round of chemotherapy, Bob spent a year traveling regularly from his home in Newport Beach to Los Angeles as part of a clinical trial into new treatments. The clinical trial slowed his cancer but did not stop it. So, after a year, Bob received radiation treatment in Los Angeles. Then a second round of chemotherapy and “all the wonderful things that come along with that,” said Bob, including neuropathy so profound he couldn’t button his shirts.

In addition, Bob sought alternative remedies and worked closely with his physicians to incorporate those into his Western medical treatment. Also, he bought a boat.

An avid sailor, Bob had a lifelong goal of competing in a yacht race. Deciding that cancer wasn’t going to rob him of his passion, he and his wife, Seana, commissioned Sundaze, a Beneteau Oceanis 38 sloop, and entered it in the 125-nautical-mile Newport Beach to Ensenada, Mexico Yacht Race. With Bob as the skipper, they won their division.

The boat race, the trips to Los Angeles, the openness to alternative medicine, all of it speaks to the will Bob has to live and thrive. He found his health care professionals to be just as motivated. In 2016, one of Bob’s oncologists in Los Angeles suggested that he start seeing oncologist Diana Hanna, M.D., who had just joined Hoag Family Cancer Institute in Newport Beach. Thanks to donor support, Hoag offers university-like care with access to Phase 1 clinical trials, unlike any other community hospital in the area.

“She was so loving and so nice, smart and caring – and she’s just down the street,” Bob said. The change in location was life-altering for Bob, not just because the drive was shorter but because Hoag offered something extraordinary that other facilities can’t match.

“At Newport Beach, you get Fran the greeter, who gives you a hug every time you come in. You drive down the coast to the infusion center, looking at the ocean. You get a clean, loving, well run center. It’s just so positive,” he said. “I want to be very respectful of the care I received in Los Angeles. I am so grateful for what they provided for me, and everyone was so compassionate. But they make it so easy and nice at Hoag, it’s unbelievable.”

For example, the radiation Bob received at Hoag under the direction of Dr. Hanna was unlike his experiences elsewhere.

“They give you a little card that you swipe on a reader when you walk in, instead of standing in a line. You walk back into a changing room, and they call you. It is the easiest, most simple way to run a radiation department,” he said. “When you go through these treatments, when you’re sick, the simplest tasks are hard. Making it simpler is just wonderful.”

Shortly after, Dr. Hanna entered Bob in his second clinical trial for a targeted therapy at Hoag. Bob did not respond well to the treatment and had to be taken off the trial, but he is grateful for the access to innovative treatment options. And when Dr. Hanna presented him with a third clinical trial opportunity, Bob did not hesitate.

“You have to throw everything you have at this cancer, because if you don’t, it’s going to get you,” said Bob, who has applied the tools he used as the CEO of a global jewelry company toward his battle with cancer.

The new trial is a Phase 1 trial that is usually only offered in university research settings. The Phase 1 trial Bob is currently enrolled in is one of many that are available at Hoag, for many different types of cancer. It seems to be working.

“Food doesn’t have a bad taste. I don’t have much of an appetite, so I make it my goal to eat all my meals daily. I don’t feel any side effects after the infusions,” he said. “And, more importantly, it’s working. Recently, I had a 35 percent reduction in all my tumors. I couldn’t believe it. Up until then, the tumors either slowed down or got bigger.”

“Before this, I had asked Dr. Hanna, ‘At what point do the tumors get so big that you die?’ She said, ‘I’m not done.’”

While Bob’s journey is not yet behind him, he is grateful to have gotten this far.

“I’m living a great life. I feel so blessed to be at this time and moment, and to be able to go to Hoag and get treatments there with such compassion and such competence,” he said. “What cancer has done for me is that it’s taught me a lot about people, about compassion and love. There are so many people out there who want to help you. They’re all doing everything they can to help me to live, and Dr. Hanna and Hoag are heading the path.”

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