Ron & Stephanie Hruby rally their community to raise awareness and critical research funds for NETRF
“It was a regular summer afternoon,” explains Stephanie, a 43-year-old physical therapist, wellness coach, wife and mom of two from Vermont.
“It was June 1, 2020. I had gone on a run that morning, and we were grilling some food outside when I started to have pain in my right side, which progressed quickly. So, I did what you do: I checked with Dr. Google and self-diagnosed an angry gallbladder.”
Stephanie’s sister dropped her off at the emergency room at The University of Vermont Medical Center, where medical professionals diagnosed her with Stage IV neuroendocrine cancer, with her primary site located in her pancreas with metastases to her liver.
“So, within six hours, I went from thinking I had an inflamed gallbladder to being diagnosed with a cancer I had never even heard of. They moved quickly; I had a biopsy the next day and started the Octreotide shots right away, but my liver enzymes were out of control. My local oncologist consulted with Dr. Jennifer Chan from Dana-Farber in Boston, and they came up with the plan to put me on Captem, which I was on for thirteen months. Within the first three months, my pancreatic tumor was invisible, and my liver tumors shrunk by 50%. I had an incredible response to Captem.”
Stephanie expanded her care team to include NET experts Drs. Wolin and Lui, who concurred that because Stephanie was young and this journey was a marathon, not a sprint, they would stop the Captem and put her on Affintor for maintenance; after seven months, she had her first tumor progression. She had two bland embolizations that did not produce improvement, and after began PRRT under Dr. Wolin’s care.
“Dr. Wolin’s team was phenomenal. I had an incredible response to PRRT; it shrunk everything. I had 40-50 liver tumors, and PRRT got rid of all but four.
Eventually, Stephanie consulted with Drs. Jaydira Del Rivero and Jonathan Hernandez at the National Institute of Health who agreed that she was an excellent candidate for surgery.
Unfortunately, in the time between the consult and surgery, Stephanie’s cancer grew rapidly and spread.
“I started a newly approved treatment, Cabozantinib, as recommended by Dr. Wolin. However, my labs became very unstable after 6 weeks. After more scans and tests, my team care decided to put me back on Captem, which had worked so well in 2020,” she explained.
As Stephanie awaits her next set of scans, she is focused on educating herself about genetic testing, clinical trials, and complementary medicine.
“Asking questions in NETs support groups and watching NET experts online has been of huge value in learning what action steps need to be investigated and what options are out there. The connections I have made through online groups and conferences have gotten me through tough times and continue to be the silver lining in this situation,” she added.
Stephanie and Ron are people who jump headstrong into understanding and educating themselves on an issue or diagnosis and doing what they can to raise awareness. In addition to Stephanie being actively involved in the community and supporting events, Stephanie’s husband, Ron, has linked the Stephanie Hruby Fund to an open access cyber security consulting website (https://cybermechanics.pro) to help raise awareness about NETs and $25,000 for NETRF research this year.
“I ask people to think of their donation not as a cost but as an investment in their community, friends and loved ones,” said Ron.
“Before 2020, Steph and I didn’t even know this type of cancer existed, and today, we are connected to thousands with this diagnosis. We all need to help with the development of a cure or a sustainable disease management protocol for this type of cancer. By supporting NETRF, you become a catalyst for a brighter tomorrow, a champion for those fighting. My wife Stephanie has been managing her pancreatic neuroendocrine diagnosis since June 2020, and we continue to have hope for the future. Let’s keep the advancements coming!”