In November of 2014, Phil Kauffman went to his primary care doctor with what he thought was a broken rib. The doctor advised him to let it heal on its own—a standard approach for such maladies.
Phil, a retired engineering consultant who lives near San Diego, California, with his wife (their two daughters are grown), went home and waited for his rib to heal, but the pain stuck around for months.
In March of 2015 his doctor ordered an X-ray, but instead of a broken rib, it revealed suspicious spots in Phil’s lung. A CT scan found five lesions characteristic of lung cancer. His rib pain was caused by pleural effusion (liquid) in his right lung, which was extracted, and an examination of that liquid confirmed a diagnosis of stage IV non-small cell lung cancer (NSCLC).
Phil remembers that during the first week after his diagnosis he was paralyzed with fear. His brother in law, a physician, helped him snap out of it, assuring him that his treatment options guaranteed a survival period of at least a few years or maybe more, and that cancer research was progressing at such a fast rate that the prospect of extending his lifetime beyond a couple of years was good.
This provided enough comfort for Phil to come to terms with the very real possibility that he might die. He accepted this reality, came to peace with it, and decided to fight back. The first step was to dive into research. “I got the idea in my head that what I needed to do was stay alive until some laboratory maverick somewhere came up with a cure,” he says.
“It’s an engineering approach. The practical reality is that there are only two possible outcomes: Either I succeed in my quest to stay alive until a cure is developed or I’ll fail. If I fail, I’ll succumb to cancer, but if I succeed, I’ll die of something other than cancer, hopefully many years from now. I’m convinced that I have a really good shot at the latter,” Phil says.
Phil received carboplatin and pemetrexed (Alimta) for a few months until his tumors stabilized. Then he remained on Alimta to keep the tumors in check. Meanwhile, he continued to do his own research.
Cancer Commons Assists
In September of 2015, Phil reached out to Cancer Commons in search of further support to validate the chemotherapy treatment he was receiving and to get a different perspective on future treatments, especially the possibility of receiving immunotherapy treatment through a clinical trial.
His contact at Cancer Commons, chief scientist Emma Shtivelman, recommended seeking a second opinion from an oncologist at U.C. San Diego who was the principal investigator for a number of clinical trials conducted at UCSD’s Moore Cancer Center.
“Emma is really up and up on the latest and the newest available treatments,” Phil says. “Whenever I found something new through my research, I would always run it by her, and she was always a step ahead, well familiar with whatever ‘new’ discovery I hit her with. On top of that, you can tell that she truly cares.”
During chemotherapy treatment, Phil’s kidney function deteriorated. He was referred to a nephrologist who determined, after a kidney biopsy, that his impaired kidney function was a direct result of chemotherapy. His primary oncologist immediately stopped chemotherapy for a period of six months, and his kidney function stabilized, although at a level that still wasn’t good enough to make him eligible for the clinical trials he was interested in. Worse, even though his original tumors remained stable, a new tumor appeared in fall of 2016.
Phil’s new oncologist at UCSD made one last effort to help improve his kidney function enough to enroll in a clinical trial, but his kidney function remained below normal. Phil asked Emma about a stereotactic body radiation therapy (SBRT) treatment with a robotic tool called CyberKnife, and Emma recommended a dual approach: Using CyberKnife therapy and immunotherapy concurrently. Phil’s new oncologist was willing to prescribe Phil’s desired treatment outside of a clinical trial that combined both therapies, also being conducted at UCSD.
Phil began receiving treatment with the immunotherapy drug nivolumab (Opdivo) in December of 2016. He also received SBRT on his new tumor, which successfully destroyed it. His other tumors have not grown. “I just had another scan and everything is still pretty much stable,” he says.
Phil’s kidney problems have persisted. “I can live a long time with my kidneys the way they are,” he says, “but the fact is that I’m no longer a candidate for clinical trials.” While frustrating, Phil’s ineligibility for clinical trials means he can take a step back from doing his own research. “Doing research on the treatment of cancer is a very depressing activity, and the statistics you read about are scary and difficult to take if you’re a patient,” he says.
Now, he’s outsourced that work to Cancer Commons and his oncologist. “They read all the depressing statistics and, when the time comes, will just tell me when a drug that is superior to what I am taking is available commercially. I get to remain blissfully ignorant, which strongly reinforces my optimistic outlook,” Phil says.
These days, Phil spends much of his time with his wife and his art. He has been painting for years and has slowly transitioned from using traditional media to creating computer-based paintings.
His advice for newly diagnosed patients? “Consider the reality that there are only two possibilities: either you’re going to stay alive or you’re not. If you can come to terms with that, then the battle is yours. Cling on to life for as long as it takes for medical research—which is progressing at almost the square root of energy over matter (the speed of light)—to catch up with your disease.”
And he cannot recommend getting in touch with Cancer Commons highly enough. “There is no money in the world that can buy that sort of support,” he says. “It is the ultimate second opinion.”
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.