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Why cancer patients must look for their own clinical trials

There is little that is more emotionally challenging than seeing someone you love dying of cancer and knowing that there may be an answer - but you can't find it.

Patients and families often must comb the internet looking for clinical trials.
Patients and families often must comb the internet looking for clinical trials.Read moreiStock

"Oncologists can barely keep up. My sister found a trial I was a perfect candidate for, and my doctors didn't even know it existed."

I can't stop thinking about this quote.

I read it in a recent Washington Post story about an immunotherapy drug that has been a lifesaver for Stefanie Joho, an advanced colon cancer patient in her early 20s

She was referring to the rapidly changing landscape of clinical trials for immunotherapy drugs. These medicines are not working for all advanced cancer patients but they are proving effective for some like her – even if sometimes only briefly. Researchers are racing to figure out for whom they work and why.

Nowhere are these changes more evident than in advanced bladder cancer. Prior to May 2016, the FDA had not approved any new treatments for advanced bladder cancer since platinum-based chemotherapy in 1978. Median lifespan with advanced bladder cancer was about 14 months.

For my first husband, Ahmad, it was 11 months from Stage IV diagnosis to death in April 2014. After platinum-based chemo failed, there was no official next option. Every time someone told me how much progress had been made in cancer research and how cancer was becoming a chronic disease rather than one that kills you, well, that just made things worse because that narrative directly contradicted our experience.

But in May 2016 things started to change for patients like him. That's when the FDA approved an immunotherapy drug as a second-line treatment after platinum-based chemo. Since then, the FDA has approved four more immunotherapy drugs for advanced bladder cancer, including one as a first-line treatment for patients unable to tolerate chemotherapy. Three of these approvals have occurred within the last month.

This is hopeful news for advanced bladder cancer patients and a stunning change. But here's the thing: as Joho said, the landscape is changing so fast, doctors sometimes can't keep up.

I wrote a column in October about how hard it is for metastatic cancer patients to find and participate in clinical trials. In early May, I participated as a patient advocate on a panel in Washington D.C. sponsored by the Coalition for Clinical Trial Awareness about the challenges patients encounter in finding and participating in clinical trials.

Joho's comment reminds me how difficult this remains for patients and their families.

There is little that is more emotionally challenging than seeing someone you love dying of cancer and knowing that there may be an answer – but you can't find it. There may be a drug that isn't typically prescribed for this particular cancer or that has just been invented. There may be an actionable mutation sitting in a dataset of thousands of mutations but you just don't know how to unlock it.

And that is where desperation sets in. Desperation that drives patients and families to educate themselves and seek answers. It's not that their doctors don't want to help. They are inundated. And no one is as motivated as patients and their families.

As a cancer patient advocate for the last three years, I have been repeatedly impressed at the sophisticated understanding some patients and caregivers develop. Anyone who says that patients shouldn't talk to each other because they might get bad information (and it is typically medical professionals who say this) don't know what it's like to want to save the life of someone you care about. Nor do they recognize that patients and families may be a lot sharper than they realize.

Joho's sister is the perfect example. She took it upon herself to do what the doctors weren't doing for her sister.

But in order to develop this sophisticated knowledge, it takes resources: time, money, skills, energy, to name a few. It takes resilience and emotional stability. It takes being free enough of pain and acute medical needs to do the research.

And so, it becomes a survival of the fittest. Those who can best advocate for themselves have the best shot at getting more and better treatment.

Why do we consider this acceptable? That's what I will be asking at the American Society of Clinical Oncology conference in Chicago later this week. I'll let you know what I discover.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco. This guest column appears rhrough our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.