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Taking a Chance on a Clinical Trial

Pancreatic cancer survivor Reesa Levy and other advocates in purple shirts

• Treatment with a pancreatic cancer specialist
• Pancreatectomy
• Chemotherapy
• Clinical trial of a personalized vaccine

I was sitting in the car after returning from a great summer in Connecticut, and suddenly I felt an intense pain in the area of my appendix.

I thought it might be gas, but by the next day I was in the doctor’s office being sent for a CT scan. A few hours later I was told to go to the emergency room, because I had acute appendicitis. I rushed to the hospital only to be told by the surgeon that he wanted to treat the appendicitis with a drug. I went home and took the medication, but by the next afternoon I was still very ill and in pain. My internist said I should schedule another appointment with a new surgeon and have another CT scan. That is when the story began. The second scan came back with a shadow on my pancreas in the tail.

I had an appendectomy in October 2017. After the operation, I waited for six weeks to get an MRI because I had metal staples placed in my body from the appendectomy. After the MRI confirmed that indeed I did have a shadow on my pancreas that might be cancer, I was then sent for a biopsy at Boca Raton Hospital, in Boca Raton, Florida. On January 2, 2018, I was told that the biopsy found cancer cells in the tail of the pancreas.

A Treatment Plan Plus a Clinical Trial

A few days later my daughter came to Florida and whisked me away to Barnes-Jewish Hospital in St. Louis, Missouri. She had researched pancreatic cancer and found Dr. William Hawkins, a wonderful and renowned pancreatic surgeon. I was lucky enough to become a patient of his. After an initial exam to determine if I qualified to have the surgery, I was taken from radiology to admissions on the discovery of two blood clots, one in my leg and one in my lung.

At that point my diagnosis was adenocarcinoma stage IIa, and I was going to have a distal pancreatectomy.

Once Dr. Hawkins agreed that I could have this operation (spleen, distal pancreas, partial colon, adventitia of stomach), I was asked if I wanted to be part of a clinical trial. My goddaughter, a physician, had told me if I could get on any clinical trials, I should do it for the many tests and additional care and observation you get. I said yes and agreed to have my tumor removed, analyzed, and sent to be made into a personalized vaccine for my trial after chemotherapy.

The operation was on January 17, 2018. I was discharged January 23rd and given a home health care aide for five days.

After Surgery, Chemo and a Clinical Trial

I was instructed to do six months of chemotherapy. I took three capecitabine tablets a day and had a once-weekly infusion of gemcitabine. The gemcitabine was difficult to infuse, so I was instructed to get a port, which I did. I tolerated both well, but side effects included neuropathy—my feet were sometimes so painful I could not walk, although my hands were less painful. I also had tiredness and difficulty sleeping. My hair thinned so much I had to wear a wig, but I now have more hair than before!

After six months of chemo and a month’s rest, I began my six-month National Institutes of Health-funded clinical trial. Once monthly I was administered the vaccine with an electroporation device, a machine that gives you a hard hit in the arm and then an electric shock to open cell walls. It was brutal, and I am so glad I was able to finish the six months. The hospital and my private insurance paid for blood tests and scans.

Life after My Treatment and Trial

The great news is that I am testing cancer-free, have a wonderful life, and am able to do everything I want. I see Dr. Abraham Schwarzberg at the Florida Cancer Center for follow-up.

I think a lot of my well-being is a result of my trial four years ago, in addition to the most wonderful family and supportive friends and health care professionals.

How lucky am I!?!


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