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May 22, 2024 33 mins

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.

 

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