Playlists - Cancer Therapy Startups

Cancer therapy

The Patient Story

Cancer Patient Lab

August 7, 2024 - Cancer Patient Lab #108
Discussion forum: community.cancerpatientlab.org

“This is my philosophy: What is the need of my patients? If they come to me and they say, ‘I will be getting chemotherapy, and I want to know which natural substance or repurposed drug or other chemo I should take with it.’ I say, ‘Good. This is our defined question. You get chemo with platinum, cisplatin, or carboplatin, and you want to know if you should take curcumin or cannabidiol with it. Okay. We have to test it.’

“I never fly blind. I never trust anything. I never use one single method. I go for CTCs. I go for tumor markers. I go for radiation. I always want to know what's going on, and if I have a slight feeling it's not going in my direction, I test. I go for an MRI. I go for a PET CT every month. It matters, because if I fly blind, and I fly to the wrong destination, I can't turn around. Time goes in just one direction. If we miss the opportunity, we can’t go back. I just want to be as effective as I can and as I have to, because this is a hard road.”

“Every patient needs something slightly different, because his cancer type is different, his stage is different, his immune system is different, and so on. The more diagnostics we can do, it will make our work better. You need to do it for every supplement, for everything you do. You need to think, ‘Why am I doing this?’, for every supplement, every vitamin, every probiotic, for everything.” – Martin Lužbeták

Meeting Summary
Advanced cancer patients and caregivers are motivated to leave no stone unturned in searching for ways to treat their disease. They may want to know what other combinations of therapies might complement their primary treatment (often chemotherapy, radiation, surgery, or immunotherapy). The heart of complementary oncology is to add something else to the standard treatments, like selenium, vitamin D, omega-3 fatty acids, probiotics, and so on. This pursuit can lead patients and caregivers to find treatments that are not (yet) sanctioned by clinical standards, and they can run headlong into concerns about personalized therapy combinations which have not been tested in randomized clinical trials.

How should you evaluate non-standard complementary treatments?

Dr. Martin Lužbeták, MD, MS, is uniquely positioned to integrate advanced diagnostic testing with clinical care, particularly in the realm of complementary therapies. He operates a specialized molecular diagnostics lab in Düsseldorf and maintains a medical practice in Vienna. Trained in general medicine, his early career was shaped by a keen interest in alternative and preventive medicine. Initially focusing on surgery and internal medicine, he later transitioned into complementary oncology, working with treatments such as selenium and vitamin D. In 2018, he established his Vienna practice, dedicated to complementary medicine, recognizing a significant and growing demand for high-quality care in this field. When his colleague and partner in Düsseldorf passed away in 2020, leaving no successor, Dr. Lužbeták took over leadership of the lab, preventing its closure. Since 2021, he has led both his practice and the lab, leveraging his expertise in diagnostics and the application of results—an endeavor that is both challenging and rewarding.

There is a discussion of the challenges in making decisions about complementary therapies.

There is a discussion of some complementary therapies that should be considered, including:

● Targeted vitamins
● Selenium
● Omega-3 fatty acids:
● Intravenous high-dose vitamin C
● Fasting

There is a discussion of how you can increase your confidence in the effectiveness of complementary therapies, including:

● Lean into testing
● Get blood tests
● Get tissue tests
● Find a doctor you can trust

How can you learn more about complementary therapies?
● See the notes, transcript, and recording from our discussions about complementary therapies with Mark Taylor and Gabriele Gavazzi; Nasha Winters; Donald Abrams; and Bapcha Murthy.
● Contact Martin Lužbeták at drluzbetak@medvienna.at.

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.

Full transcript: https://docs.google.com/document/d/18tqXrwe0jh8eyn7DDY37mKnXWHka1fed_6GRQdurg6E/edit?usp=sharing

“Evaluating Complementary Therapies in Cancer Care” - Martin Lužbeták, MD, MS

September 4, 2024 Cancer Patient Lab #112
Discussion forum: community.cancerpatientlab.org
Full transcript: https://docs.google.com/document/d/1GHtTkX8lVtXxIodNDXjId5h_uvcVqf55D7jB5lvPocU/edit?usp=sharing

“Knowledge is power for me, so I started to learn as much as I could. I started to go to every support group I could find, and read everything I could find.

“Even though I'm living with this crap inside me, I'm still trying to enjoy my life every way I can.

“The stronger I am mentally, the stronger I feel physically, and the more I feel like I can overcome everything.” – Burt Rosen

“You're going to give me chemo, radiation, surgery, immunotherapy, or maybe a targeted therapy. But how do I take care of Burt? Everything you're going to do for me is designed to kill the bad stuff inside me. Nothing is designed to take care of the good stuff inside me or help my body deal with the bad stuff.” – Burt Rosen

Meeting Summary
"Engaged patients get better outcomes" is one of our core beliefs at the Cancer Patient Lab.

But what does a very engaged patient look like?

Consider the story of Burt Rosen. Diagnosed in July 2022 with two primary cancers (renal clear cell carcinoma and advanced pancreatic neuroendocrine tumors), Burt has done everything possible to make sure he continues to enjoy his life. He doesn't let himself be defined by his health issues and repeatedly pushes himself out of his comfort zone. Whether it is camping and hiking in Glacier National Park three months after a major liver surgery, hiking when he can, traveling, volunteering, meeting tons of people, starting nonprofits, learning all about Integrative oncology, and looking for full-time jobs, Burt does as much as he can to make sure his mental health is doing great since he feels better physically when he feels better mentally.

What has Burt Rosen learned?
● Enjoy life as much as you can, despite your health challenges, such as taking a solo road trip to Glacier National Park, jumping out of an airplane.
● Adopt integrative oncology practices, including yoga, diet, exercise, and meditation.
● Live life and don’t let cancer define you, a philosophy of "I can do it" and "I will do it."
● Don’t get stressed when bad things happen. Life goes on. Once you get diagnosed with cancer, there is no deal that nothing else bad will happen to you.
● Learn as much as you can, because knowledge is power. Go to every support group you can find; read everything you can find.
● Surgery has risks that nobody ever thinks about when they're making these decisions. Many people want to get it out as fast as possible.
● View cancer as a gift. Learn to appreciate life, everything, and everybody. Figure out the things you don't appreciate, and cut them out of your life.
● Never think of yourself as a “cancer patient”, be very focused on who you are, and you happen to have cancer. Love who you are, not who you were.

What does Burt do?
● He makes sure he has vegetables in every meal.
● He limits his junk food.
● If he can be outside, he goes outside.
● If he can take a walk, if the fatigue isn't too bad, he takes a walk.
● He does yoga.
● He meditates.
● He goes to therapy once a week.
● He takes some supplements, mostly vitamins.

What are Burt’s recommended information resources?
● For neuroendocrine tumors (NETs)
○ Neuroendocrine Cancer Awareness Network (NCAN)
○ Learn Advocate Connect Neuroendocrine Tumor (LACNETs)
○ The Neuroendocrine Tumor Research Foundation (NETRF)
○ The Cholangiocarcinoma Foundation (CCF)
● For pancreatic neuroendocrine tumors
○ Pancreatic Cancer Activation Network (PanCAN)
○ Let’s Win Pancreatic Cancer
● For integrative oncology
○ The Society for Integrative Oncology
○ CancerChoices - They do reviews of things like a keto diet, cite their scientific sources, and grade it in a couple of different categories

How can you learn more about engaged patients and the better outcomes they have gotten and Burt’s views on living with cancer?
● See our discussions with Ari Akerstein, Mark Taylor, Brian McCloskey, Robb Owen, and Brad Power
● Contact Burt at jburtrosen@gmail.com
● Read Burt’s blog: Adventures with NETs Blog
● Join one of Burt’s Facebook groups:
○ For people in Portland or connected to the Oregon area who have neuroendocrine tumors: PDX Netswork
○ For people from all over the world who don't want to deal with cancer politics: Adventures With NETs

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.

“A Guy with Two Cancers Explores Treatments and Life” - Burt Rosen

Andrew Spanyi's wife Katalin was first diagnosed with breast cancer in 2003. He cut back on his out-of-town consulting work and drove her to treatments that included surgery, chemotherapy and radiation. Katalin was cancer free for over 11 years. Unfortunately, the cancer returned in 2016, and passed away in 2023. Andrew was her supportive caregiver 24/7 for her years of treatment.

Andrew Spanyi's Cancer Caregiver Story

Roger Royse - FDA Advisory Committe