Dan’s St. Louis physician appeared more interested in continuing the shots and chemo than hearing what Dan had been learning on the Internet. Dan craved a specialized second opinion and everything he read recommended more aggressive approaches. Standing out among carcinoid cancer experts on the Heartland Carcinoids website was Dr. Jean F. Botha, Director of Hepatobiliary Surgery and Director of the Living Donor Liver Transplant Program at the University of Nebraska Medical Center in Omaha (UNMC). Dr. Botha is a professor at UNMC, trained in South Africa and Germany. They began corresponding.
About that time, Staff Sergeant Daniel Barber was accepted into Ft. Leonard Wood’s Warrior Transition Unit (WTU). The WTU provided Dan the opportunity to continue his job working on Army helicopters, when he wasn’t attending medical appointments to receive the specialized care he needed to survive. With his medical care time restriction lifted, Dan’s first step was to visit Professor Botha in Omaha.
Dan was hoping for a two-stage liver resection. But after examining Dan and his medical records, Dr. Botha felt he was not a suitable resection candidate. He recommended three options. One was a liver transplant. The second was a multivisceral (multiple) organ transplant. Both were expensive and risky. The third option was most preferable. It was PRRT (Peptide Receptor Radionuclide Therapy) followed by surgery and a small bowel resection. There was however, a catch. PRRT was not approved and practically unknown in the US.
The concept of PRRT radioisotope therapy dates to the early 1900s in what was once East Germany. Technology allowed it to become practical for tests and trials in Europe in the mid-1990s. Only recently have clinical trials become available in the US.
PRRT is a form of targeted therapy, designed to impact certain tumors that can absorb certain types of chemicals bound to radioactive materials. Receptors in the tumors attract the chemical with the radioactive material it is absorbed into the tumor by the receptor. The localized radiation then begins killing the tumor cells. PRRT was the obvious best choice and the leading PRRT testing and trial facility is in the city of Bad Berka, former East Germany. The question was how to pay for it.
Like a young Perry Mason in the Internet age, Dan poured through the military’s TRICARE medical insurance policy documents. He read the words until they made sense, sifted them for clues, then he copied, pasted, printed and referenced what he found. He discovered several relatively obscure but appropriate policies and programs that could cover his medical expenses. Among them were a rare disease clause, and another clause which stated if he could demonstrate an unproven medicine treatment was safe and effective, TRICARE would pay for it.
Dan was so focused building his files of Army programs, clauses and paragraphs that might help provide for his unusual medical needs, when opportunity came knocking he nearly ignored it. Dan’s WTU at Ft. Leonard Wood was about to be visited by Brig. Gen. Gary Cheek, commander of Warrior Transition Command, and Sgt. Maj. Ly Lac, the Warrior Transition Command sergeant major. They were coming to the post WTU for a townhall-style meeting.
Dan was immersed in his TRICARE research and didn’t want to take time for the meeting. His fellow soldiers urged him and his squad leader made him go. Dan listened but said nothing. As the meeting wound down everyone in the room pointed at Dan and said “General, you need to talk with Sgt. Barber.” The General and the Sgt. Major focused their attention on Dan.
Dan just happened to have his file folders with him, which included recent printouts of the rare disease and unproven medicine clauses of the TRICARE plan. He handed his files to the General and diplomatically explained his frustration navigating the Army health system. Some had even suggested Dan retire and then receive treatment.
"We went over several avenues of the PRRT treatment. We discussed how this treatment was only done three places in the world," Dan said. "Brig. Gen. Cheek was very supportive and impressed that I had done my homework. As long as there was a policy in place, he said he could support these treatments." Dan’s wife Deanna calls the meeting “Fate,” and her husband agrees. Because Dan was a Title X Active Duty Military, TRICARE paid all of Dan’s medical expenses.
Within a week, Brig. Gen. Cheek scheduled a meeting with Dan at Walter Reed Medical Center to explore his treatment options. At Walter Reed, Dan met with an oncologist who approved PRRT as a treatment option. Brig. Gen Cheek approved the German-based PRRT treatment. Dan’s medical records were sent to Professor Dr. Richard Baum, a PRRT expert at Zentralklinik in Bad Berka, Germany.
Dr. Baum responded that Dan appeared to be a good PRRT candidate. Dan was excited to be working with doctors with wider world views. In 2010, Dan checked into the clinic in Bad Berka. The WTU provided his travel, lodging and support. It also quickly resolved a surprising prepayment requirement at check-in.
The clinic performed a series of tests, including some not available in the US. The tests showed Dan’s tumors were slow growing and had high receptors, which made him an ideal candidate for PRRT. That’s when Dr. Baum gave Dan the news: “Dan,” the professor said, “You’re going to live a long life.” He went on to explain “'Out of my 2,000 patients, out of my 10 years of doing this, with the receptors your tumors have, your condition and where you're at, this is what I see.”
PRRT is an intravenous procedure that begins with an hour-long kidney-coating drip, followed by 15-20 minutes of a special machine pumping the Peptide Receptor Radionuclide solution into the body, all during which time the patient must drink three liters of water. The water helps the body expel the radioactive material, but the procedure requires several days of rest when completed. Dan said there was no pain when he received the treatment, but it did make him “nauseated, a little sick, disoriented and tired with no appetite,” which translated to a 12 lbs. weight loss.
It didn’t take much time in Bad Berka for Dan to recognize a crucial need to learn German. “Few people spoke English. Communication was a problem,” Dan said. Back home in the US, he found an Army on-line language training course, based on Rosetta Stone, where he learned German.