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The Patient Story

Cancer Patient Lab

November 5, 2025 . Cancer Patient Lab Session 168
Full transcript: https://docs.google.com/document/d/1qIB7iM2N0UXjv3Rgy_eh7y_cNXflv_oi9gAxt1FvDKg/edit?usp=sharing
Join the discussion: community.cancerpatientlab.org

“My mom has pancreatic cancer. She's recovering right now. When she first got diagnosed, my dad spent hours scouring the internet for anything he could find to help my mom. He stumbled on a video from Roger, who also was a patient, a pancreatic cancer survivor, and this one video set off a chain of events, which was super impactful on my mom's journey, and that got me thinking, ‘How could we make that easier to find?’ There's this corpus of knowledge on the Cancer Patient Lab, which is super unique. There's over 100 hours of videos and conversations, but most people don't have the time to go through and find the right video and find that one nugget that they're actually looking for. The idea was: let's convert all these webinar transcripts and use that as a knowledge base for this chatbot and use it as a conversational search to make it easy to find the right content that you're looking for, and then also give you a link to go watch that specific video to answer some of your questions. That was the main impetus.

“The big differentiating factor between this and let's say, like a ChatGPT, is ChatGPT gives you the average of averages, and if you've heard any of Brad's webinars, we're trying to go beyond just the standard of care and talk about what are some more innovative, cutting-edge treatments or philosophies that we should be thinking about. By focusing just on the webinars, you get a higher degree of signal versus noise, depending on what you're looking for.” – Eric Chang

“We are focused on a very specific kind of domain, which is giving answers to cancer patients, and so we want to be able to measure and understand how good this is along specific dimensions, segmented by which model, which sources are we pulling in, and so forth. It's the beginning, not the end.” – Ari Akerstein

Meeting Summary
If you have been diagnosed with a serious health condition, you are faced with a series of decisions—decisions that may shape the course of your treatment and your life. Navigating complex cancer care—choosing tests, interpreting results, and planning treatment—can feel overwhelming for you and your loved ones. Searching the Internet ("Dr. Google") and AI tools ("Dr. ChatGPT") can help, but you may have concerns about the authenticity and reliability of information sources. Since AI tools are new, you probably don't have much experience in using them.

The mission of the Cancer Patient Lab webinar series is to bring you and your loved ones cutting edge information to help guide your testing, treatment, and other decisions. We have been blessed with insights from highly regarded leaders in cancer research and clinical care. However, it's a challenge to find the insights and answers to the questions you may have by searching through the archives of our 150+ webinars.

Cancer Patient Lab co-founder Brian McCloskey had a vision: that we could use AI to search through the transcripts of the many webinars we have hosted, and provide specific answers to specific questions you may have. Eric Chang, a Silicon Valley software product manager, graciously led a team to build such a tool. He was assisted by volunteers Sanskriti Bokde and Kathy (Jieru) Lin.
Also part of this this team is Ari Akerstein, who has been working with Brad Power to build a chatbot for a startup (Navis), using AI to answer questions by referencing cancer guidelines (like the NCCN guidelines). Ari has combined both reference sources (the webinar transcripts and the guidelines) to answer questions.

Discussion topics include:

Accessing and using the Cancer Patient Lab chatbot

● Go to our community platform - community.cancerpatientlab.org - click on the "Ask Navis" button

● Ask specific questions and receive targeted responses using trusted sources like the NCCN guidelines and the Cancer Patient Lab webinar transcripts
● Provide your medical information, needs, and preferences to receive personalized responses
● Receive guidance that goes beyond standard care information

How can you learn more about using AI to guide your cancer care decisions?
● Send an email to cancerpatientlab@gmail.com

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.

How You Can Use the Cancer Patient Lab Chatbot to Answer Your Questions

October 15, 2025. Cancer Patient Lab Session 165
Full transcript: https://docs.google.com/document/d/1l5i_O2la7mT6zN5WBdsGGjOAsctXKV3SukbMrtu-mzg/edit?usp=sharing
Join the discussion: community.cancerpatientlab.org

"What is self care? A theoretical framework for self care is built on a couple of pillars. First of all, it's about getting the right education about what it means when you have cancer, to take care of yourself. Then through that, get some self control towards the disease, some self reliance.

“There are many people who come to us … asking about a specific diet: ‘I want to have a list of what to eat in the morning, in the afternoon and evening,’ be it for preventing cancer, if that's the case, or for staying strong with cancer. We feel this is really hard for two reasons. One is that even if there is such a perfect diet, having it is one thing - but adhering to it is a very different story. But it also depends on the circumstances of each individual. We prefer to have in mind some sort of guidelines and directions around nutrition than around any specific diet. That's what the evidence shows.” – Thanos Kosmidis

Meeting Summary
Patients who have been diagnosed with cancer face confusion and being overwhelmed at navigating many decisions and finding services, including on their quality of life, nutrition, and self-care interventions.

Thanos Kosmidis, Co-founder and CEO at CareAcross, is uniquely qualified to lead a discussion on the non-medical challenges that patients and caregivers face and “best practices” for managing cancer care. He has a background in computer science, telecommunications and business. CareAcross is a global meeting point for cancer patients and caregivers, which supports and empowers them while accelerating oncology research and development. The company has been through the MIT Enterprise Forum and MassChallenge accelerators. They have led four clinical trials, of which one is complete. They presented one at ASCO. They have been focusing on Europe: UK, Germany, France, Spain, Italy, and Greece.

Discussion topics include:

Why should you actively engage in self care activities (such as exercise, diet, and stress reduction) as part of your cancer care?

How should you engage in self-care activities (such as exercise, diet, and stress reduction) as part of your cancer care?

What exercise guidelines should you consider for your cancer care?

What dietary guidelines should you consider for your cancer care?

● Follow a balanced diet. The Mediterranean diet is one frequently noted example: restrict saturated fats; eat moderate amounts of fish, poultry, and dairy; emphasize whole grains, vegetables, and fruits
● Personalize your diet, depending on your specific cancer diagnosis, age, weight, treatment, comorbidities, and side effects
● Consult a cancer dietitian for personalized nutrition advice

How can you safely store and share your health data?

How can you participate in medical research?

How can you learn more about things you can do for your health when you have cancer?

● Contact Thanos Kosmidis at thanos.kosmidis at careacross.com or see the CareAcross website
● Find and use digital services that provide personalized support based on evidence and clinical guidelines to keep informed
● Talk to peers, participate in patient and caregiver support groups and online communities
● Consult with healthcare experts, e.g., cancer dietitians for tailored nutrition advice, cancer exercise specialists for exercise
● See previous discussions:
○ “Designing the Right Exercise Program for Your Cancer Situation” (Schmitz) [Session 157]
○ “Exercise to Boost Your Immune System to Fight Cancer” (Incledon) [Session 49]
○ Adding Exercise for Everyday Life and Developing a Medical Device to Personalize Cancer Treatment (Skinner) [Session 47]
○ “Exercise and Cancer Development and Progression" (Jones) [Session 143]
○ “Applying Nutrition Science to the Optimization of Cancer Treatment by Solving Symptoms” (Bratton) [Session 41]
○ "A Patient’s View on Nutrition, Supplements, Integrative Oncology, and Complementary Therapies" (Ellis & Sabin) [Session 33]
○ “Scientific Research on Lifestyle Choices to Reduce Your Cancer Risk” (Brockton) [Session 40]
○ “How Daily Lifestyle Interventions Improve Your Cancer Outcomes” (Grilli) [Session 158]

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.

"How to Care for Yourself When You Have Cancer" - Thanos Kosmidis

September 17, 2025 CancerPatient Lab Session 164
Join the discussion: community.cancerpatientlab.org
Full transcript: https://docs.google.com/document/d/1pQXkcF3VY0Ej_mi2irTBDv7nh1cYKt4NYQijQV4LJ1Y/edit?usp=sharing

“Patients who are more physically active have less risk of recurrence. They survive longer, overall, which is not surprising. Anyone who is physically active is likely to live longer. But more particularly, we see that their cancer-specific survival is greatly enhanced.
We never knew before this fantastic study, called the CHALLENGE trial, whether it was a reverse causation. In other words, that association was the fact that patients who were doing better, feeling better, were more likely to survive, and they also did more physical exercise.
Now we have very solid evidence in a very large trial to show a direct causative drive, and this is in a randomized controlled trial. That study was presented at the American Society of Clinic Oncology in Chicago in the middle of this year.

Increasingly targeted exercise is being established as a first line treatment. It's not a ‘nice to have’. It's not something that you just say, ‘I'll talk to your patient.’ ‘It'd be great if he did some more walking, or if he played a bit more golf.’ It's much more nuanced than that. We're realizing that it's absolutely essential as a component of the overall care of the patient, and the evidence now is that it enhances the effectiveness of mainstream cancer treatments.

“We need to stop talking about fitness. We need to talk more about the internal mechanisms of the levers that we are adjusting and tuning to produce a more cancer-suppressive environment, or to enhance the effectiveness of a treatment, or to reduce the side effects. More so than just, ‘Are they fitter?’ Having higher cardio respiratory fitness is nice, and it is related to survival, but I'm not sure that's the actual medicine.

“We now know that muscle tissue is a major endocrine organ, and it's signaling to all the other tissues in the body. In particular, our muscle tissue is a major moderator of signaling to our immune system and modulating the effectiveness of our immune system. So if a patient has low muscle mass, they have dramatically compromised immune capacity, and of course, this is a major issue in trying to fight their cancer.” – Rob Newton, PhD, DSc

Meeting Summary
Cancer treatment is episodic and focused practically entirely on the primary medical treatments of surgery, chemotherapy, and radiation therapy. While these treatments can be lifesaving, truly integrative oncology encompasses other treatments and therapies as well. Exercise medicine, nutrition therapy, and psychological support are major pillars of cancer care, but access is limited at best. Fortunately, quality research is accumulating providing clear evidence that these “adjunct” treatments extend survival, enhance quality of life, facilitate the primary treatments while reducing their side effects, and reduce risk of recurrence. As a result, access is opening up with more and more hospitals and cancer centers providing more extensive integrative oncology, including treatment in the home utilizing the greatly expanded capacity of the internet and virtual health care due to Covid19.

Rob Newton, PhD, DSc, is uniquely qualified to lead a discussion on personalizing exercise to complement traditional cancer care. He is Professor of Exercise Medicine in the Exercise Medicine Research Institute that he established (2004) at Edith Cowan University, Perth, Western Australia. His current major research directions include: exercise medicine as neoadjuvant, adjuvant, and rehabilitative cancer therapy to reduce side-effects and enhance effectiveness of surgery, chemotherapy, and radiation therapy; the influence of targeted exercise medicine on tumor biology, and exercise medicine for enhancing survival and reducing decline in quality of life, strength, body composition and functional ability in cancer patients.

Please view this session to learn:
What is personalized exercise for cancer care?
What are examples of personalizing exercise to your situation?
What are the standard exercise targets and how should you vary from them?
How can you measure progress from exercise interventions?
Should you consider blood flow restriction training?

Follow research from Rob Newton's Exercise Medicine Research Institute at Edith Cowan University
Contact Rob Newton: rob at fitmed.com

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.

"Personalizing Exercise for Your Cancer Care" - Rob Newton, PhD, DSc

Roger Royse - FDA Advisory Committe