• Unique symptom leads to quick diagnosis
• Joining a clinical trial right away
• Good response enables me to live an active life
I was diagnosed September 30, 2015 at the Rowan Memorial Hospital in Salisbury, North Carolina. My diagnosing doctor and I only met twice.
I went to the doctor because I thought I had a herniated belly button. My regular young doctor was out of town, so I saw the doctor who was filling in. After examining me this doctor suggested I get a CT scan that afternoon. After the scan was over I was told to go see my doctor again the next morning, even though I had no appointment.
The next morning, the doctor told me that I probably had stage IV pancreatic cancer. The CT scan had shown a large tumor in my pancreas and another in my liver, as well as multiple smaller tumors in my lungs and fatty tissues. He scheduled a biopsy the next day and the biopsy confirmed that I had pancreatic cancer. It turned out that what I thought was a herniated belly button was actually a Sister Mary Joseph nodule, an external sign of internal cancer.
I told the diagnosing doctor that I normally had pretty good luck, but I felt my luck had just run out. However, I was actually VERY LUCKY to have seen a very experienced general practitioner, who immediately recognized that I probably had some sort of internal cancer. And, luckily, my initial diagnosis took less than 24 hours.
More Luck Gets Me a Clinical Trial
I’m also VERY LUCKY to have a daughter who is a surgical oncologist with years of experience treating pancreatic cancer. She immediately came home to help guide me with my doctor selection. She started calling pancreatic cancer experts in my area. Her research pointed us to an oncologist at the Wake Forest Cancer Center in Winston Salem. Dr. Angela Alistar (now in Morristown, New Jersey) takes an aggressive approach to treating pancreatic cancer. Luckily, Wake Forest Cancer Center is a teaching and research hospital that is 20 times bigger and 20 miles closer to me than the Rowan Hospital. AND, luckily, Dr. Alistar was looking for participants in a phase I clinical trial for a new drug called CPI-613. After hearing about all my options, I quickly signed to participate in the clinical trial. I was LUCKY to be one of the last patients to get into this clinical trial.
Dr. Alistar, my daughter the doctor, and our study nurse worked very hard to get me set up for my first chemo. The time from initial diagnosis to my first chemo was only two weeks. In those two weeks, I got a port installed, initial blood work, another CT scan, my first MRI, and a trip to Walt Disney World with my wife, my daughter, her husband, and three grandkids.
The clinical trial consists of two chemotherapy drugs: a modified amount of FOLFIRINOX and the trial drug CPI-613. I receive chemo every two weeks. On Tuesdays, I get the main dose—I wear a pump for 46 hours getting 5-FU. On Thursdays, they remove the pump and give me another shot of CPI-613.
My first blood work showed a CA 19-9 of 2,500. After four weeks it had climbed to 10,000. But after the third round of chemo, it started going down. Plotting these numbers coming down forms the most beautiful graph I’ve ever seen. After only 11 months of chemo, my CA 19-9 went below 35 (35 is normal), and has stayed low ever since. At my recent blood work in May 2018, it was 7.2.
As part of the clinical trial, I get CT and MRI scans after every four rounds of chemo. At my first scan after starting the treatment, my tumors had shrunk by about 30 percent. At about six months into chemo, my lung and fatty tissue tumors were apparently gone. After a year, my tumors in my liver and pancreas appeared to be only scar tissue. Luckily, no scan has ever been worse than a previous one.
Many patients cannot tolerate FOLFIRINOX. Luckily I have tolerated it well. I don’t know if it’s me, the slightly reduced amount used in the clinical trial, or the combination of FOLFIRINOX plus the CPI-613. Regardless, chemo has not affected me badly.
Living with Chemo
I’m pretty active for a normal 70-year-old. I KNOW I’m active for a 70-year-old that was diagnosed with stage IV pancreatic cancer 30 months ago. I feel good 12 of the 14 days of my chemo cycle; on the two days of chemo I feel like I have the flu. I have had a few rounds of diarrhea that were controllable with just a little extra medicine. I finished my 60th round of chemo in the beginning of May—almost no one has had 60 rounds of FOLFIRINOX. I had my 16th set of scans shortly after the chemo. With my CA 19-9 level where it is, I think they will be clear.
Luckily, I was one of the last patients to join the clinical trial. Since the four patients that came off chemo had to all go back onto different treatments, Dr. Alistar and Dr. George Yacoub have decided to see what will happen if I don’t come off chemo. I am to stay on it as long as my body will allow it. So far, my blood tests show no real issues. I feel ok.
When I retired in July 2015, my wife and I began traveling in our small motor home. In August of 2015 we took a trip west, which included a stop at Burning Man, for our first visit to the week-long art festival in the desert north of Reno, Nevada. Three weeks later, I got my diagnosis. A few days later my wife hugged me, looked me in the eyes and said: “We WILL go back to Burning Man next year.” I remember thinking to myself, I love you but you know I have stage IV pancreatic cancer, so fat chance of ME going back. Well, we went back in 2016. And we went back in 2017. My wife has bought tickets for us to go again this year.
My wife and I travel a lot. My doctor daughter and her family live about 14 hours away, and we visit four times per year. We have gone on family vacations to Key West, Yellowstone, Destin (Florida), Asheville (North Carolina), and multiple family trips to Wilmington, North Carolina, where my son lives. We took a family trip to Cancun, where I went scuba diving.
I have no idea what the future will bring. But I tell everyone that if you are diagnosed with this awful disease and get a chance to be involved in any clinical trial, DO IT!
Updating My Life
It’s now May 2019, about a year since I told my story. I still get chemo every two weeks. This week I start my 84th round of FOLFIRINOX plus the experimental drug CPI-613. Next week I have my 22nd MRI and CT scan. About two days during chemo, I feel about like I have the flu but I can live with that. I still credit CPI-613 with saving my life. Truly amazing!
Last August my wife and I made it to our fourth Burning Man festival, and in December Juanita and I celebrated our 50th wedding anniversary with about 70 family members and friends. We still visit our grandkids in Canada multiple times each year. I always drive the 735 miles each way. I continue to work around the house and yard. My wife and I bought a small condo at Carolina Beach back in October of last year. We are still decorating the condo. We visit the beach across the street from the condo often. Life is GOOD!!