It started suddenly, no sign anything was amiss, just some itching and rashes developing on both of Jay Elston's legs. A trip to his primary care physician in 2012 led to an initial diagnosis of hepatitis, a prescription for antibiotics, and a recommendation to call again if Jay were not feeling better in a few days.
In three days, I couldn't keep anything down. I'd lost 40 pounds in a week. And he said, just go to the ER.
This led to more tests, including a CT scan and the location of a tumor on his pancreas, either adenocarcinoma or neuroendocrine, and a decision of where to go next.
It was too rare what I had. They gave me three choices. The business I was in before, I had dealings with people in Dodge Center, so I knew people up here. And I thought, I'll go to Mayo, because if I get in trouble, I know people up there that can help my wife.
A biopsy at Mayo Clinic in Rochester revealed that Jay had a neuroendocrine tumor in his pancreas.
Neuroendocrine tumors are really a collection of tumors that can arise anywhere, essentially, in the body. But they behave very differently from one person to the next.
The tumor's presentation in patients is so unique that some will experience diarrhea or pain from the tumors, while others will have no symptoms, and the tumors are discovered during an imaging exam for something else. Some tumors are slow growing. Others are aggressive. Neuroendocrine tumors can secrete hormones, which are the source of many of the symptoms patients experience.
They are still a big enigma. And therefore the most common ones, the small bowel neuroendocrine tumors, we really don't have a good understanding why people get them.
Treatment options vary as well, with surgery, chemotherapy, and nuclear medicine therapy among other options. With his diagnosis, Jay had clarity from the beginning.
I was here to fight it from the beginning. And that's what I intend on doing. I want to see my kids graduate. I want to walk my daughter down the aisle. I intend on staying around for a long time.
And it has been a battle. A multidisciplinary team comprising medical oncology, gastroenterology, pulmonary medicine, surgery, radiology, especially nuclear medicine, and pathology has supported Jay through each around.
The care plan never changes, where other places you get a new doctor, they've got a different idea. They decided from the beginning what they were going to do. And that's the same plan that we've carried out through the whole seven years.
Jay's medical oncology team started him on chemotherapy, which shrank the cancer and gave him two years without issues. And then the cancer had spread to his liver. This time, chemotherapy was not effective in bringing his neuroendocrine tumors in check. And another option was needed.
PRRT is a therapy using a radioactive compound that sticks to the neurons and tumor cells. There are three components to it. There is what's called a somatostatin analog, which binds to the receptors of the tumor cells. And then there is a therapeutic radionuclides, or radioactive molecules, which is therapeutic. And then there is almost like a glue that binds these things together. So we inject this into a vein. It circulates around to the body. And it sticks to the tumor cells that express these somatostatin receptors. And then this radiation molecule sits right on the tumor cell and kills the tumor cells with radiation.
The Division of Nuclear Medicine, part of the Department of Radiology uses PET imaging with gallium ga 68 dotatate to locate neuroendocrine tumors and determine whether a patient will respond to lutetium dotatate. Patients receive four doses, each eight weeks apart, with checkups about a month after each infusion. For most patients, improvement in symptom management comes after the second dose. For Jay, the effects of this new treatment were almost immediate.
Doctor Halfdanarson told me before I got the first treatment, don't expect immediate results. It usually takes two rounds before we see anything. Within three or four days, the diarrhea stopped. It had shocked the tumor enough. It quit producing that hormone. And within a week, I was back to normal. It was just amazing.
I think what's absolutely remarkable about his story is the huge improvement in his quality of life. He went from being in and out of the hospital, more days in the hospital than not, because of severe diarrhea and electrolyte abnormalities to being able to do the things that he wanted. So that was really kind of exciting to see somebody have such a big impact following just his first treatment.
It's been a great experience. And when I was in the hospital in Joplin with all this, there was a patient in there. And one of the nurses asked me if I would go talk to him about Mayo. I said, I'll be happy. I'm happy to talk to anybody about Mayo. My family knows that. They probably get tired of hearing about it. Everything runs so much different here than it does at home. And it's just an amazing place.