Fred Neubauer was literally sitting in the chemo chair when we spoke with him recently as part of our patient story blog series. “They haven’t started with the actual meds yet,” he said calmly; “They’re giving me fluids to keep me hydrated and some anti-nausea to start.”
Fred was diagnosed last October with cholangiocarcinoma, also known as bile duct cancer, which has now spread to his spine. “They hope the chemo will keep it from expanding,” he added.
A sales professional in the chemical industry for over thirty-five years, Fred had retired from the business a few years back. “However, I returned to work when contacted by a colleague that owns an environmental consulting firm specializing in industrial wastewater treatment. This environmental consulting firm provides technical support and products to maintain clean wastewater discharge for industry through North America. I worked for three additional years until I got diagnosed,” Fred recalled; “I’m a stubborn man so I didn’t notice any symptoms I actually went in for a kidney stone, but the doctor told me I had a huge mass on my liver about the size of 4 sticks of butter.’”
There are also smaller lesions throughout the right liver lobe as well as several in the left lobe.
“The right side of my liver is infested, so to say,” Fred explained,” so surgery is not an option. It has to be chemo or something else.”
After his initial diagnosis, Fred was scheduled for his first round of chemotherapy. While waiting for his appointment to begin, his wife picked up a copy of Conquer, a medical magazine to educate patients about cancer. “She was flipping through and there was a four page insert for the Cholangiocarcinoma Foundation,” Fred remembered, “so I wrote to Stacie Lindsey who told me about the annual Cholangiocarcinoma Foundation conference coming up. She directed me to Melinda Bachini, the Director of Advocacy, who’s a twelve-year survivor.”
The average life expectancy for newly diagnosed cholangiocarcinoma patients can be a sobering statistic, which is why our partners at CCF work tirelessly to innovate research that opens new pathways for treatments. “Typically, you get diagnosed late in the game because there are no telltale signs,” Fred elaborated, “and it’s a very aggressive type of cancer. The folks at CCF told me to sign up for Ciitizen right away so that all my records could be stored in one place.”
It was while collecting his medical information that Fred quickly realized the importance of digital health records. “I’m in Alabama where a number of the hospitals, labs, and physicians still communicate via fax,” he clarified; “You think of the medical world as being sophisticated, but in many cases it’s not. Medical administrators told me HIPAA doesn’t allow them to share records digitally. I said: you’ve got to be kidding me.”
After signing up for Ciitizen, Fred connected with Lisa Taylor, our Director of Records Retrieval, who quickly informed his care team that HIPAA mandates all patients be given a digital copy of their records if requested. Along with Head of Customer Support Mequel Bunch, they tracked down all of his data in no time. “They’re my advocates now,” Fred added; “Lisa gets the doctors and hospitals to update my files electronically. From my perspective, it’s a godsend. I just sit here in the chair and you guys do all the work.”
Since his diagnosis, Fred’s life has been chaotic, but he’s thrilled that Ciitizen has helped with some of the heavy lifting, including helping navigate a liver biopsy for genetic testing. “Originally, testing only showed one genetic marker indicating whether or not I could be in a clinical trial,” Fred explained; “But when another group got a piece of the biopsy, they found two more markers that opened up twelve new potential trials. That’s a big deal.”
The potential for genetic biomarkers to open up new treatments is indeed a very big deal, which is why Ciitizen and CCF are partnering on #mapitfoward and the Real World Genomics study to help advance cholangiocarcinoma research.
In two weeks, Fred is headed to MD Anderson in Houston for a second opinion with one of the foremost experts in cholangiocarcinoma. To secure the appointment, Fred shared his health data by giving the care team permission to view his Ciitizen profile. “They want me to do my third CT scan there, but they wanted to see my previous scans, plus my MRIs, which I had stored with Ciitizen. He was also able to see all my bloodwork and the timeline of all my treatments. It’s just a godsend; I can’t stress that enough. All I have to do is type in their email and then decide how much access I want to give them.”
Because of the help we’ve been able to provide, Fred is one of our most enthusiastic patient advocates. “Every time I’m here getting chemo, I tell every patient I meet about Ciitizen,” Fred gushed; “If they need to get an MRI and CT scans done at other facilities, you guys will handle all the data retrieval and storage which is fantastic. I’m sure everyone you talk to in this situation tells you the same.”
While Ciitizen has already helped Fred organize his data and secure an important second opinion, it’s the potential to share his data for new treatments that he’s most hopeful about. “Every quarter I get a scan to check the hot spots and see if they’re growing or not,” he said; “I’ve been on my current treatment for eight months. If these current spots don’t get better soon, I’ll need to try something else and I’m hoping my health data will point the way.”
Join Fred and the Cholangiocarcinoma Foundation, and sign up for Ciitizen to take control of your health data and help advance important cholangiocarcinoma research.