I am sitting here with tears in my eyes and anger in my heart. I just learned that the cancer clinical trial that my husband enrolled in – gambled on, you could say – didn’t work.
The data show that the pancreatic cancer patients such as my husband who received an experimental combination of two immunotherapy drugs actually died a few months earlier, on average, than those who received the standard chemotherapy treatment. The results were so disappointing that the trial has been halted.
The news doesn’t change the fact that my husband is gone, one of the 40,000 people who die of pancreatic cancer each year.
But it extinguishes the hope he cherished – that I still carried – that this clinical trial would make a difference for other cancer patients.
I’m not angry at the physicians or the researchers. They are deeply committed to caring for today’s patients while also seeking better treatments for future patients. As much as I wish I’d had my husband longer, I firmly believe that clinical trials are our best tactic in the fight against pancreatic cancer.
No, what angers me is that this most deadly of cancers continues to take its unrelenting toll.
A dramatic boost
Immunotherapy has been the subject of clinical trials for years, but it got a dramatic boost when philanthropists donated $350 million to two centers devoted to immunotherapy, one at the Johns Hopkins Hospital, the other a consortium of six academic medical centers including Penn’s Abramson Cancer Center. It has also been a focus of the Cancer Moonshot program, led by Vice President Biden. Immunotherapy stimulates the body’s own natural immune system to fight or block the development of cancer cells.
For my husband, Steve Kelly, enrolling in an immunotherapy trial gave him hope as he battled stage 4 pancreatic cancer.
Steve truly believed that cancer’s deadly code would be cracked someday by brilliant researchers and a brave cancer patient whose own immune system would kick the tar out of cancer.
“Why not me?” he used to say as he received his treatments.
Steve died in April 2015 at the age of 55, 22 months after his cancer diagnosis. And although his clinical trial didn’t cure him, it did give him a life with cancer on his terms.
Steve, an editor at the Inquirer, was a fit and healthy runner and gym regular when he first began experiencing pain in his stomach and later his back. A trip to the primary-care doctor led to progressively scarier diagnostic tests: first an X-ray, then an ultrasound, then a CAT scan, and ultimately a biopsy that revealed stage 4 pancreatic cancer that had spread to his liver.
It was a numbing diagnosis. Only one in four pancreatic cancer patients will survive a year past diagnosis. The five-year survival rate is just 8 percent. This year, pancreatic cancer surpassed breast cancer as the third leading cause of cancer death.
Surgery generally isn’t an option for patients whose pancreatic cancer has spread to other organs, and the standard chemotherapy has had limited results. For Steve, there was never a question that he would be aggressive and seek out clinical trials that looked beyond current treatments. Although he had a wonderful local oncologist at the Cancer Institute of New Jersey, he sought treatment at Johns Hopkins in Baltimore expressly because of its many clinical trials in pancreatic cancer.
He first enrolled in a chemotherapy trial, testing a new cocktail of four different drugs. It was effective in reducing the size of Steve’s tumors, and he tolerated it well, at first. But chemotherapy is a toxic mix that can kill good cells along with cancer cells, and the side effects can be debilitating.
My amazing husband then made a choice that some may not understand. He still had no tumor growth on his chemo combo, but not the quality of life he envisioned in the prime of his life.
The fatigue, nausea, loss of appetite, and other effects drained him, limiting his work schedule and keeping him from the active life he loved. His body had become so depleted that he sometimes had to skip his chemo treatments.
Spurred on by hope and buoyed by faith, Steve ended his chemo regimen and enrolled in the immunotherapy trial.
There were three different arms of the trial, with patients receiving different levels of treatment that would be compared for their effectiveness. Steve received a combination of GVAX, made from irradiated pancreatic cancer cells, and CRS-207, developed from the listeria bacteria. Those two foreign agents were thought to stoke the body’s natural defense system into action, generating the “good” T-cells that wage battle with cancer cells.
For the first couple of weeks, Steve received multiple injections of GVAX in his arms and thighs.
“Piece of cake,” he said, compared with the once-a-week chemo infusion treatments that were hours long, followed by days of feeling lousy.
The listeria infusions were a different experience. The side effects, the doctors and nurses warned, could include cramps and stomach pain, chills, fever and vomiting. It was, after all, a form of food poisoning.
It was bad but only for about 12 hours. After that, Steve felt pretty darn good.
The immunotherapy trial, which he started in April 2014, launched a six-month gift to our family. Steve had immunotherapy once a week for two weeks, but then he had the third week off. He said he felt so good that at times he could almost forget he had cancer. He resumed a regular work schedule at the paper. He went back to the gym. He started running again, even competing in a 5K.
We spent a week at the beach in North Carolina. And in August, we took a family trip to Costa Rica, where Steve zip-lined, white-water rafted and, ironically, was my rock when I battled my own case of food poisoning. I’m sure on that trip that no one suspected the toned middle-aged guy paddling through white water was in the late stages of pancreatic cancer.
Several months after we returned home, Steve began to experience some new pain and swelling. A scan in November revealed the cancer had returned and spread to his lymph nodes. He returned to chemotherapy, as well as radiation, but it was the start of a sobering five-month period in which we both knew in our gut that the “Why not me?” hope would not come to be.
Here’s the thing when you’re facing such a terrible disease: Hope keeps you going. It is stronger than fear, stronger than anger, stronger than physical pain. As long as there’s another option, another treatment, another drug, hope can help you pick your head up off the pillow for another day.
Clinical trials provide that hope.
Steve spent his final weeks at home surrounded by his family and his two dogs, with March Madness playing on TV and the Bradford pear trees blooming outside his window.
His experimental drugs may not have prolonged his life. But they did give him the type of life he wanted in his final year on earth. That’s not reflected in the clinical data, but it’s stamped forever in our family’s memories.