A Missouri Guardsman's story of hope

Veteran receives non-FDA-approved treatment for cancer through TRICARE

By Matthew J. Wilson
Ngmo.pao@US.ARMY.MIL

FORT LEONARD WOOD, Mo. - A determined Missouri National Guardsman who is a veteran of three deployments to Iraq is fighting a battle for his life with cancer through treatment that can only be found abroad.

On Aug. 25, Staff Sgt. Daniel Barber, a maintenance section chief with Company D, 1-106th Assault Helicopter Battalion, traveled to Bad Berka, Germany, for his second round of peptide receptor radio-nuclide therapy, a treatment for carcinoid cancer of the liver that has not yet been approved by the Food and Drug Administration in the United States.

The treatments also are rarely covered by American insurance companies, but Barber's bill is being paid for by TRICARE, the health insurance of U.S. service members, through cooperation among General Leonard Wood Army Community Hospital, post's Warrior Transition Unit, TRICARE, the Guard and the medical providers in Germany.

After being misdiagnosed with esophagitis gastritis grade 1 prior to a June 2008 deployment and gallbladder issues following it, Barber was told he had carcinoid cancer, a slow growing tumor type of cancer in October of 2009. He had two large tumors and 50 or more smaller ones that had spread throughout his liver.

"I was speechless for a minute," Barber said of his diagnosis. "The normal range of emotions came into play - shock, despair, anger, frustration, fear and relief, because I finally knew what was wrong. I knew I wasn't crazy like all the other doctors thought I was. I came in complaining about several different things and they look at you like you're a man from outer space."

He was told he had stage-4 liver cancer with one-to-three years to live. Not satisfied with that answer, Barber, who has been in the Guard 16 years, began doing his own research on the best way to combat the disease.

"I'm from Missouri, so I've got a little mule in me, and I don't take 'no' for an answer very well, especially when I felt as good as I felt," said Barber, who lives in Richland. "I'm 42-years-old, I pass my physical training test and I pass weigh-in. I still do physical training every day and still come to work every day, working in my military occupational specialty. I'm a healthy young man except for a few tumors."

Barber found and joined Heartland Carcinoids and NETs support group online where he began researching who the top doctors in the carcinoid field were and what were the best treatments.

Having recently come off deployment, Barber was still within his 180 days to receive TRICARE benefits through the Transitional Assistance Management Program.

After seeking medical attention in St. Louis and enduring several surgeries, special monthly shots that cost $3,000 and chemotherapy, Barber did not respond to the treatment as hoped.

"Everything I was reading said be aggressive," Barber said. "I feel strongly that you should have a second opinion. Doctors are kind of like shopping for cars - sometimes they get set in their ways and sometimes they're very open minded. But I feel like you should explore all avenues."

On Nov. 30, 2009, Barber was accepted into post's Warrior Transition Unit, which allowed him to continue to work as a quality assurance specialist for UH-60 Black Hawks at the Christopher S. "Kit" Bond Army Aviation Support Facility on post during the week when he wasn't attending medical appointments. Not satisfied with his doctor's wait-and-see approach, Barber asked for a second opinion.

He sought treatment in Omaha, Neb., where Dr. Jean Botha had found success treating carcinoid cancer patients with a two-stage liver resection, where the tumors were cut out. But it was determined that Barber wasn't a candidate for the procedure.

"He could do it - he could clear my liver up - but the tumors would probably return," Barber said.

Botha, however, offered Barber more options, including a liver transplant, a multivisceral organ transplant and a non-FDA-approved treatment called peptide receptor radio-nuclide therapy that is only being practiced outside the U.S.

"The PRRT stood out," Barber said. "Dr. Botha was trained in South Africa, which opened up the door for the European medicine, which was another look and I wanted that approach."

As soon as Barber returned home, he researched PRRT. He then had an opportunity to present his case to Brig. Gen. Gary Cheek, commander of Warrior Transition Command, and Sgt. Maj. Ly Lac, the Warrior Transition Command sergeant major, who were visiting the post Warrior Transition Unit.

"We went over several avenues of the PRRT treatment - we discussed how this treatment was only done three places in the world," Barber 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."

Barber was able to provide those policies to Cheek and after a visit to Walter Reed Medical Center, the opportunity to get treatment in Germany was approved. Barber's medical records were sent to Dr. Richard Baum, an expert in this form of treatment at the Zentralklinik in Bad Berka, who said the Guardsman seemed to be good candidate for the treatment.

The first treatment was scheduled for May 4-19. The Warrior Transition Unit provided travel, lodging and support. At the German hospital, Barber went through a series of tests, including a GA-68 PET Scanner, a machine that creates a 3-D scan of the human body that is not yet available in the U.S. It was determined that Barber had slow-growing tumors, which confirmed that he was a perfect candidate for the treatment.

"Every doctor I had been to up until that point had basically told me I'm going to die - 1-to-3 years or 3-to-5 years. Dr. Baum looked me in the eye at the consult and said, 'Dan, you're going to live for a long time.' I looked at him and said, 'How are you so sure? Everyone else has said the opposite.'" Barber said. "He said, '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.' I thought that was pretty ballsy of him, but he didn't even bat an eyelash. That was upstanding of a doctor to come out and say that. He wasn't worried about liability; he was just doing his job."

The news was the answer of hope that Barber had fought so hard to hear.

"Hope is a powerful tool," Barber said. "Having a positive attitude in a crisis situation and faith are both key."

The PRRT treatment is administered intravenously. It starts with a coating for the kidneys, which takes about an hour, followed by 15-to-20 minutes of the medicine being pumped into the body with a special machine and several days of rest.

"The treatment went well," Barber said. "There was no pain. I was just a bit nauseated. Your appetite leaves you, of course. With all cancer treatments, there is a little sickness involved after each treatment. The procedure was very tolerable, other than that."

After he completes his second treatment, Barber has one more scheduled for Nov. 28, with the possibility of two more. The procedures should shrink Barber's tumors 50-to-80 percent to stabilize the disease or cause remission.

Never having lost his sense of humor, Barber said he finds it amusing that a PRRT treatment in Germany, at around $15,000, still costs less than his chemotherapy treatments in St. Louis, which ran about $22,000.

Barber has received support through this journey from his wife, Deanna, son Luke, Family, the Guard, and coworkers. He praised his coworkers for donating their vacation days to him through the Leave Transfer Program so he could receive all of his initial treatments and continue to support his Family before he was accepted into the Warrior Transition Unit.

"I was looking at 20-to-25 days off from work with basically half the time of sick leave left in my account because of the deployments," Barber said. "Before a deployment, you take all of your vacation and you use your sick leave going to doctors. Basically you are drained after you go on deployment, as were all my fellow employees.
"But they dug deep and saw that I was going to miss out on about 15 to 20 days of pay. They donated 192 hours of their vacation to assure my Family was taken care of during our time of need."

The Missouri Veterans Commission, Barber added, contributed a grant of $1,500 toward his medical expenses, as well.

Among members of the 1-106th, which has Guard units in Missouri and Illinois, Barber said there are a total of six Soldiers who have been diagnosed with cancer. He recommends Soldiers take advantage of all the health checks at their Army-mandated over-40 screening.

If a Guardsman is diagnosed with cancer, Barber said they should join a support group, find a doctor who specializes in the disease, hold their insurance company accountable, read and understand policies, changes and statuses, and do their own research.

"You are your own best advocate," Barber said. "Definitely don't take a wait-and-see approach. Be determined to watch your Family live and grow. Don't ever give up."

For more information about the Missouri National Guard, please call 1-800-GoGuard or visit www.moguard.com.