May 22, 2024
In this episode, Fred Neubauer, a stage 4 cholangiocarcinoma survivor, shares his inspiring journey with Dr. JYP. Fred’s rare bile duct cancer was discovered during imaging for a kidney stone. Facing a challenging diagnosis, he explored advanced treatments, including chemotherapy, radiation, and innovative clinical trials, which helped shrink his tumors. Despite the difficulties, Fred remains hopeful and proactive in managing his cancer. Dr. JYP emphasizes the significance of biomarker testing, which helped Fred access treatments tailored specifically to his cancer's characteristics. Fred discusses his advocacy work, highlighting how helpful it is for patients to access their medical records easily and participate in clinical trials to find the best possible care and advance the science for others.
Throughout the episode, Fred talks about maintaining a
positive outlook and staying active in his hobbies, such as DIY
projects and car restoration. The episode highlights how personal
determination, along with medical advancements, can transform
cancer treatment, providing hope and improving the quality of life
for those diagnosed with rare cancers.
3 Episode Key Takeaways
1. Importance of Biomarker Testing: Fred
Neubauer's conversation with Dr. JYP highlights the crucial role of
biomarker testing in accessing targeted therapies that have
significantly impacted his treatment for cholangiocarcinoma, a rare
bile duct cancer. He emphasizes the need for cancer patients to
pursue such testing to tailor treatments specifically to their
genetic cancer profiles, which can lead to more effective disease
management and better outcomes.
2. Value of Clinical Trials: The episode underscores the value of participating in clinical trials, especially for patients with rare and advanced stage cancers. Clinical trials offer access to the latest treatments and technologies, such as histotripsy and other targeted therapies that are not yet widely available but can be life-saving.
3. Support and Advocacy: Fred
Neubauer's journey from receiving a dire prognosis to becoming an
expert in his own care and a patient advocate serves as a powerful
testament to the importance of support, education, and advocacy.
His story inspires those who are Cancering to be proactive in their
healthcare, seek out resources like the Cholangiocarcinoma
Foundation, and engage in community and mentorship programs to
improve their health and quality of life.
Fred's Resources
https://www.ciitizen.com/
https://www.genomicfocus.com/
https://cholangiocarcinoma.org/
fredneub@bellsouth.net
Show Overview
02:00 Fred, a five-year bile duct cancer survivor, shares his
journey.
06:13 Stage 4 cancer, but tumors shrink.
08:02 Fred insists on biomarker testing for targeted treatment.
15:41 Genomic Focus helps find cancer clinical trials.
22:25 Fred values relationships with doctors and staff.
29:27 Fred's shares his hobbies as a DIYer, and celebrates his wife's birthday.
