February 19, 2025 - Cancer Patient Lab Session 132 Discussion forum: community.cancerpatientlab.org Full transcript: https://docs.google.com/document/d/1zfDFgewzDfE0llaUnSSY-mkABRVHVWzsLykPWgfCAWw/edit?usp=sharing “We're getting more integrable knowledge sources. Each one is different. Some are wider, some are deeper. Crowdsourcing them will help us get better answers faster. “How do we make it cheaper? We automate it. What do we automate? We automate all the things that a caregiver does and basically amplify what a caregiver can do.” – Bill Paseman Meeting Summary Patients and caregivers often seek multiple opinions before making treatment decisions for conditions beyond the "standard of care" (the decision-making logic captured in guidelines, like the NCCN guidelines). Rare diseases are one example of situations that present difficult treatment decisions. Even though the data are especially sparse and contradictory, patients and caregivers need to make decisions anyway. Bill Paseman has a rare kidney cancer and a brain meningioma. He brings a unique perspective from his background in computer science and as a Silicon Valley entrepreneur to this decision-making challenge. He used generative AI (such as ChatGPT) and the decision-making concepts of second opinions, financial portfolios, and Power Laws to decide: 1. If he ought to enroll in a clinical trial for kidney cancer (called “EVEREST”, taking the adjuvant everolimus after surgery for renal cell carcinoma), based on 13 opinions; 2. If he ought use proton or photon radiation to treat his brain meningioma, based on 13 opinions; and 3. How he will pick treatments for (a yet to occur) kidney cancer recurrence, based on 17 opinions. What are the challenges you face in making treatment decisions if you have a rare disease? ● Heterogeneity: Rare diseases have very low success rates in clinical trials, often less than 3.5%. This means the population is highly heterogeneous, making it difficult to draw meaningful conclusions from real-world evidence. ● No good models: Properly characterizing and categorizing patients with rare diseases is challenging, as the underlying biology may not be well understood. This makes it hard to apply real-world evidence to specific patient profiles. ● Control group: Testing personalized treatments in a real-world setting is risky, as there is no control group to validate the efficacy. The treatments may work for some patients but not others. How can you make treatment decisions when you lack good data and you get contradictory recommendations? You should gather your in-depth health data and analyses, including your comprehensive genomic profiling, your tests, your detailed medical history, and analysis of your treatment responses, and create a spreadsheet, including test results, with tissue or blood source, date, and a summary of findings. You should keep these data in a medical folder for sharing with clinicians, researchers, and advocates. If you see any article, clinical trial, or research paper that is compelling, find the lead researcher and email them a brief clinical summary, asking if they're willing to have a 10-minute chat. The discussion covers what your decision-making process should incorporate. Both humans and software agents can provide opinions and help in aggregation. How can you use AI and other software tools to make better treatment decisions? ● Automate: Find software tools for all of the steps in your decision-making process, such as gathering expert opinions, finding clinical trials, and analyzing your data. ● Multiple sources: Use multiple GenAI tools, such as ChatGPT and Claude, plus humans, to gather a range of recommendations. ● Easy to use: Find tools that are user-friendly and don’t require technical expertise. ● Reliability: Choose tools that are auditable and reliable, so you can trust the information and recommendations provided. What tool is Bill working on next? A software agent combining: ● a spreadsheet of all test results, stored in a medical folder, ● a clinical trial finder, and ● a decision support tool. How can you learn more about using AI to assist you in developing your cancer care plan? ● Contact Bill at bill at rarekidneycancer.org. ● See "Using ChatGPT to Learn and Guide Individualized Complementary Cancer Therapies" (Robb Owen) [Session 125] ● See “How AI Is Shifting the Dynamics of Your Next Doctor Visit” (Ezra Cohen, MD) [Session 121] The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

November 13, 2024 - Cancer Patient Lab Session 120 Discussion forum: community.cancerpatientlab.org Full transcript : https://docs.google.com/document/d/12wGpTprKzkuhCjmXRG5xziQGYlxWsjiYoPAsl1rUfmY/edit?usp=sharing “Developing an effective way to translate this medical information from the bench side to the bedside is what matters, because science without application is not a science for me. “Cancer cells love to have lots of iron. However, iron has dual properties: it can facilitate tumor growth, or it can cause cell death (ferroptosis), due to the accumulation of iron and failure of the antioxidant defensive mechanism of cancer cells. “Methionine is an essential amino acid involved in protein synthesis and methylation processes, which are critical for cancer cell growth. In a clinical study, 5-fluorouracil alone failed to shrink tumors, but when combined with methionine restriction, a significant tumor-shrinking effect was observed. This suggests that methionine restriction can sensitize cancer cells to chemotherapy.” – Ahmed Elsakka, MD Meeting Summary Advanced cancer patients and caregivers are continually searching for optimal treatment options. It’s often challenging because treatment options are continuously advancing and some forms of cancer have become drug-resistant. One area of great potential is metabolic approaches to controlling cancer – working to inhibit the systems that drive cancer growth and disrupting cancer cells’ energy production – a method that makes cells more vulnerable when paired with other cancer treatments. Dr. Ahmed Elsakka, Director of Research at the Metabolic Terrain Institute of Health, is uniquely qualified to discuss clinical metabolism, cancer metabolism, and clinical applied biochemistry in the prevention, diagnosis, and treatment of cancer and other complex metabolic diseases. He is a metabolic therapy specialist, clinician, and scientist with expertise in various research fields, including neurometabolism, ozone therapy, regenerative medicine, photodynamic therapy, sonodynamic therapy, methionine metabolism, ferroptosis, tissue healing, and metabolic management of cancer. He was the Senior Researcher and Medical Director of the Egyptian Foundation for Research and Community Development. After completing his medical education at the prestigious Faculty of Medicine of Alexandria University, Egypt, and a rigorous residency program in Egypt, Dr. Elsakka pursued advanced studies in neurometabolism at Johns Hopkins University in the United States, focusing on the impact of ketogenic diets in epilepsy and other neurological disorders. Notably, he collaborated with Professor Thomas Seyfried, a global leader in cancer metabolism studies. Dr. Elsakka further obtained a postgraduate diploma in clinical applied biochemistry from Harvard Medical School, a certificate in epigenetics and gene expression from Melbourne University in Australia, and a Masters of clinical nutrition and metabolism from the National Nutritional Institute in Cairo, Egypt. He is associated with the Global Society of Metabolic Therapy (as the co-founder), the Global Leadership Panel at Fight Cancer Global, the Egyptian Functional Medicine Association, and the Egyptian Medical Society for Ozone Therapy and Complementary Medicine. His expertise includes drug delivery systems, nanotechnology, and phytochemical extraction, having collaborated with a medication facility in Brazil to conduct workshops and train their company’s teams. Discussion topics include: - New metabolic therapies at the cutting edge of cancer care that cancer patients and caregivers need to know about - Better understanding how cancer metabolism can be used to treat your cancer - Understanding cancer “metabolism” – how cancer cells use carbohydrates, fats, and proteins from food to get the energy they need to grow and spread - The role of iron in cancer and ferroptosis as a new cell death mechanism - How sound and light can be applied to control cancer - How methionine restriction can control cancer - The emerging developments in nanotechnology that can impact cancer care - How you can know whether a metabolic approach might be right for you See our discussions with Jane McLelland and Nasha WInters. They are both active in the same area. Dr. Elsakka works with Nasha Winters. Contact Dr. Elsakka at drahmed at mtih.org The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

“I shared ownership with the oncologist. It’s gonna require the patient to be brave enough to try it, and to have a doctor who is willing to support it.” - Bryce Olson See the entire Cancer Patient Lab session with Bryce Olson and Dr. Robert Gatenby at: https://youtu.be/WbhXk-3Wz4s Read the full transcript at: https://docs.google.com/document/d/1d-z_Gh7CRwoeALKP1Mty-1yrSYxDZGyvd1tz7F_Xvyg/edit?usp=sharing Join the Cancer Patient Lab at www.cancerpatientlab.org The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

“Genes don't reliably predict response to treatment, and the gene mutations or expression in cells don't reliably predict the expression of proteins in our cancer cells… If we ever want to achieve precision oncology, we must figure out both on the science side and on the institutional side how to embrace diagnostics of many proteins, coupled with some genes or gene expression, and patient data.” Amanda Paulovich, MD, PhD, Fred Hutchinson Cancer Center

Filtricine is a biotech startup founded by researchers who came from Stanford to see if they could starve cancer cells with a restricted diet. They are developing a nutrient formulation which attempts to identify and exploit cancer cells’ metabolic vulnerabilities (the chemical processes that produce energy and basic materials needed for survival). Their diet eliminates some amino acids that cancer cells need but aren’t needed by normal cells.