“I have some strange symptoms. I am itching all over, and it is uncomfortable when I urinate.”

It was November of 2011, and I was out of town in Missouri when my husband Robert called and told me this. I told him to go to the doctor right away. I had never heard of such symptoms, but my guess was that he had a urinary tract infection and needed antibiotics right away. Robert went to our internist in Plano, Texas and, fearing he had a gall stone, he ordered blood tests and a sonogram. Robert called me to tell me that the doctor did not see any gall stones, and he was sending him to the hospital for an MRI. I packed my bags and drove the 6 hours back to Dallas. I really thought that he would soon be having his gall bladder removed, and I needed to be there for him and our two children, Kaitlyn, 17, and Dylan, 14.

After Whipple Surgery September 2012 After Whipple Surgery September 2012

Robert was admitted to the hospital while they ran more tests. The itching continued, he was slightly jaundiced, and Robert’s blood tests showed that he had elevated bilirubin. I didn’t even really know what bilirubin was or what might cause it to be elevated. The GI doctor ordered a test called an ERCP, so he could take a look inside his bile duct to see if there was something blocking the duct which would cause the bilirubin to elevate. The next morning, he went in for the test, but the doctor came out hours later to tell me that he aborted the test, because he could not get his scope through Robert’s bile duct. He suggested that we go to another hospital and have another doctor try that was more skilled at this procedure.

Robert was transferred to UT Southwestern Medical Center in Dallas where Dr. Agrawal performed the ERCP the next morning. Dr. Agrawal was able to get his scope in, and he placed a stent to open up the bile duct. He took pictures inside the duct and samples of tissue to biopsy. The biopsy results were inconclusive. No cancer was found, but there was an area of suspicion and a narrowing of the bile duct where it leads into the pancreas. I was starting to get pretty scared, and Robert was still itching badly. A few weeks later, Robert was still itching, and Dr. Agrawal did another ERCP, replaced the stent and took more biopsies. They were still inconclusive with some atypical cells but no definite cancer.

Biking in Italy Biking in Italy

Dr. Agrawal suggested that we talk to a surgeon, and we met on December 16. He told us there was a 90 percent chance this was cancer and recommended that Robert undergo the Whipple procedure. He cautioned us not to wait too long to decide. It was almost Christmas, and we had a house full of company coming from as far away as Australia, so we decided to wait until after the holidays to decide.

After Christmas, Robert and I decided to get a second opinion. It just seemed like too radical of an idea to have a major surgery when he didn’t even know for sure that he had cancer. We made an appointment at MD Anderson Hospital in Houston, a 5-hour drive from our home in Allen, Texas. Three weeks later, we went back to MD Anderson to have another ERCP and more biopsies. Again, the biopsy results were inconclusive with no definite cancer diagnosis. Robert’s blood tests were all pretty normal, but he still had elevated bilirubin with some itching and abdominal discomfort.

Purple Stride 2013 Purple Stride 2013

At this point, I was scouring the Internet to find some clue as to what else this could be besides cancer. I came across something about autoimmune pancreatitis, and we discussed this with his doctor. He agreed that this could be what is causing Robert’s symptoms. He decided to try a course of steroids to see if this would help his symptoms and the bile duct stricture. Two months later in April, he went back for another ERCP. There was no improvement. We gave it another two months, but by June Robert’s CA19-9, a tumor marker for pancreatic cancer was starting to rise. We were really getting worried now. In July, we met with a surgeon at MD Anderson, Dr. Jason Fleming. Robert’s CA19-9 had gone up to over 200. And even though at this point he had five ERCPs with negative biopsies, this was starting to look more like cancer. We decided to wean Robert off of the steroids and scheduled surgery for September.

Throughout all of this as we continued to go back and forth from Dallas to Houston, life was very busy. Robert and I were both working, our daughter Kaitlyn graduated from high school and prepared to start college. Our son was active in Boy Scouts and wrestling at school. All of that suddenly came to a halt, and our focus shifted to Robert and his upcoming surgery.

After we settled Kaitlyn into her dorm and Dylan started his sophomore year of high school, Robert, his mother and I packed up and left for Houston. We found temporary housing through local charities in Houston and prepared to stay for several weeks after surgery.

Purple Stride Family 2013 Purple Stride Family 2013

September 4, 2012, Robert underwent a pylorus preserving pancreaticoduodenectomy or the Whipple procedure. His surgeon, Dr. Jason Fleming. had done hundreds of them before, and we were confident in his ability, and we knew we were getting excellent care at MD Anderson. The surgery was successful, and Dr. Fleming was able to remove the mass at the head of his pancreas and 28 lymph nodes. He placed a feeding J-tube, so Robert could get enough nutrition after surgery.

A few days after surgery. Dr. Fleming came in to tell us the news we were dreading. It was cancer. The pathology results showed that a 3-centimeter malignant tumor and three malignant lymph nodes had been removed. I had still hoped that it wasn’t cancer, but now we knew for sure. I was never so scared.

During his 8-day stay in the hospital, Robert was an absolute model patient. He did everything the doctor told him to do. He walked several times a day after surgery and never complained. While he was recovering, Robert had visits from two Whipple Warriors who volunteered at MD Anderson, visiting with patients who had just had the same surgery that they themselves had survived many years before. I cannot tell you how inspiring and reassuring it was to meet these two survivors and hear them tell us that they are still cancer-free and leading a healthy, active life. I will never forget Bill and Mary. Thank you so much.

Robert recovered from his surgery with no complications and little weight loss: which he attributes to the feeding J-tube and the excellent nutritional support he received from MD Anderson.

Robert With Purple Steer Robert With Purple Steer

We met with oncologist Dr. Robert Wolff at MD Anderson six weeks after surgery. He explained that there was a high risk of reoccurrence, and he suggested adjuvant therapy to improve his chances of staying cancer-free. Since Robert was healthy and doing so well, Dr. Wolff thought he would be an ideal candidate for an aggressive therapy with folinic acid/fluorouracil/irinotecan/oxaliplatin (FOLFIRNOX). Robert started eight rounds of chemotherapy on October 15. Although the treatments were far from easy, he completed them without complications. After four months of chemotherapy, he was finally finished. But Dr. Wolff was taking no chances, and he suggested that Robert continue with six weeks of chemo radiation following the Virginia Mason protocol. Since this would involve treatments six days a week, it was necessary for us to stay in Houston. So we packed up and moved to Houston with our dog and 16-year-old son. We enrolled Dylan at a local school and stayed in a furnished apartment close to the hospital. Robert did pretty well with the chemo radiation, and everyone survived the temporary stay in Houston, but we were ready to go home.

Throughout this time, I had been doing extensive research online and reading about the latest clinical trials for pancreatic cancer. I ran across information about clinical trials at Johns Hopkins Hospital in Baltimore using immunotherapy for pancreatic cancer. Dr. Elizabeth Jaffe had developed a cancer vaccine called GVAX that was being used in several studies. One of the studies involved patients that had undergone the Whipple procedure and were still cancer-free. I decided to talk to Robert about it and see if he was interested in participating. Robert felt strongly that he wanted to do everything in his power to prevent a reoccurrence, and he also wanted to help researchers find more effective treatments for this disease. I called the Pancreatic Cancer Network (Pan Can) and asked them to help me see if Robert would be eligible for this trial. The person I talked to was so supportive, she put me in touch with the research nurse at Johns Hopkins, and we made arrangements to go to Baltimore.

Robert qualified for the trial and began on June 13, 2013. He received the GVAX vaccine once a month for three months followed by boost vaccines every six months. The latest vaccine was given in March, 3-½ years since his Whipple surgery, and there is still no evidence of disease.

Robert and I both feel that it is important to take ownership of your health care and work in partnership with your medical team. When you are faced with cancer, you can feel like things are far beyond your control. We feel that educating ourselves and being involved in the entire decision making helped us feel a little more in control. We are so grateful to the dedicated medical professionals who have worked in partnership with us to fight this battle and as we continue to fight it.

Believe me, we know how lucky Robert is, and we appreciate that there are many who have not made it this far. We hoped against hope that his diagnosis would not be cancer, but it was, so now we fight it, one day at a time.

Celebrating Life,

Kristina Stacey