Hanging onto hope: What it’s like to participate in a clinical trial

Hanging onto hope: What it’s like to participate in a clinical trial

By Stephanie Wykstra, a freelance writer and research consultant for AllTrials USA.

Paula Kozik sat in her oncologist’s office with her husband by her side. It was November of 2015, a few months after a surgery to remove a cancerous tumor from her neck. Her doctor told her that the tests showed no evidence of cancer. These were “words that I’d never expected to hear,” Paula said.

For 11 years, Paula had been living with ovarian cancer, undergoing several surgeries and seemingly endless rounds of chemotherapy—she was just thankful to still be alive. Eight months after the better-than-expected news she received in November 2015, Paula’s blood tests and CAT scans continued to be cancer-clear. She rejoiced along with her doctors, nurses, even a pharmacist, who had grown to be “like her own family” after so many years together.

Like many women with ovarian cancer, Paula had experienced symptoms for years – including severe back and abdominal pain – without ever being diagnosed. When she finally consulted with a gynecological oncologist in 2004, at the age of 55, she was surprised to learn she had stage IV ovarian cancer.

Since that diagnosis, and enduring nearly two years of chemotherapy and several surgeries, Paula had developed a new tumor. This time the tumor was on her neck. Her oncologist advised her to seek treatment via a clinical trial (in which a new drug undergoes testing in patients to gauge its effectiveness) given her cancer’s resistance in the past to more traditional options. She would need to find a new doctor and new hospital to participate in a clinical trial. “One of the most difficult decisions for me was leaving the security of this wonderful doctor for the uncertainty of clinical trials,” Paula said.

She reached out to several different institutions about clinical trials, including the National Institutes of Health (NIH). Searching for trials and filling out all the required paperwork was overwhelming, Paula said. Finally, she found a trial she was eligible for, thanks to a research doctor she had been referred to by her oncologist.

She was going to be one of 60 women in the multi-center clinical trial, which was testing the effectiveness of a drug that could reduce blood flow to tumors and thereby slow or stop growth.  The trial recruited patients with ovarian, fallopian tube or peritoneal carcinoma. Over the next three years, Paula’s tumor remained the same size. She met a few other women who were enrolled in the trial when they were receiving treatment at the same center. The trial was Phase II, in which all patients receive the drug (rather than a Phase III randomized trial in which patients are chosen at random to receive either the new drug or another treatment). One by one, due to death or a tumor’s unresponsiveness to the treatment, all but one woman, Paula, remained in the trial. By 2013, she was the only one of the original patients still enrolled, and the researchers published the results stating that the drug was ineffective on these kinds of cancers.

Looking back on the experience of being in a clinical trial, Paula notes their importance and the value of sharing the results. Because the researchers who worked on the trial she participated in shared their results – even though they weren’t positive – other researchers have been able to use that information to avoid repeating each other’s work.

Seven years after she enrolled in the trial, Paula’s tumor began to grow again. She was removed from the clinical trial, and a surgeon performed the delicate work of removing the grapefruit-sized tumor from her neck. She received additional chemotherapy to try to ensure that the growth hadn’t spread. A few months later, she went to the oncologist’s office and received the news that no trace of cancer was detected.

Paula shared many of the ups and downs of her cancer treatment journey with friend Nancy Long (profile). Nancy and Paula met in 2006 at a Sam’s club; Paula recounts how a woman with a warm smile approached her and asked if she had cancer. “As I looked at her gorgeous head of hair (a wig), I replied, yes, forgetting that my bald shiny head had already given me away. We laughed, talked and discovered we had the same cancer, same doctor, same treatment and we were both Italian…a match made in Heaven!”

Together, Nancy and Paula pour their time and energy into the efforts of the National Ovarian Cancer Coalition. As co-presidents of the Maryland Chapter, they offer hope to other cancer patients and survivors, as well as spread awareness of the signs of the disease. As grateful as she is to be a survivor, “My big question is why I’m still here,” Paula said. “I’m hoping to give other women a face of hope.”

Paula Kozik is co-president of the Maryland Chapter of The National Ovarian Cancer Coalition (NOCC). The NOCC Central MD hosts its 7th annual 5KRun/3K Walk to Break the Silence on September 18, in honor of Ovarian Cancer Awareness month. To register, please visit: Runwalk.ovarian.org/Annapolis.

NOCC supports the AllTrials initiative calling for all clinical trials to be registered and their results reported.

1 Comment

  1. Mary Fedor

    Paula is the face of hope and inspiration to me and all She meets. Such a beautiful person!

    Reply

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