It started subtly. No sign anything was amiss just some itching and rashes
developing on both of Jay Elsten'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.
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, that he 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, they 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 tumors 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 for 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, you know. 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 round. The care plan never changes where other places you get a new
doctor, they got a different idea you know. They decided from the beginning
what they were gonna 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 neuroendocrine tumor cells.
There are three components to it. There is what's called
a somatostatin analouge which binds to the receptors of the tumor cells and
then there is therapeutic radionuclides where radioactive molecule
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. Dr. Halfdanarson told me before I got the
first treatments that 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 they 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 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 at Joplin with all this there was a patient in there and when
the nurses asked me if I would go talk to him about Mayo. I would said I'll be
happy to you know, 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, it's just amazing place.