Patient from Hell

In this episode of the Patient From Hell, we talk to Mike and Megan Scherer, a couple who faced fertility challenges after Mike's testicular cancer diagnosis at age 26. They share their personal journey through cancer treatment, fertility preservation, and eventually becoming parents through assisted reproductive technologies. The Scherers also discuss their non-profit organization, Worth the Wait, which provides financial assistance and support to young adult cancer survivors facing fertility issues. Their story highlights the emotional, financial, and medical complexities of fertility preservation and family building for cancer survivors.

Key Highlights:

1. Cancer treatment can significantly impact fertility, making it crucial for patients to discuss preservation options immediately after diagnosis.

2. The financial burden of fertility treatments for cancer survivors is substantial and often not covered by insurance, as was the case for the Scherers.

3. Through their non-profit Worth the Wait, the Scherers aim to alleviate the financial barriers preventing young adult cancer survivors from pursuing fertility preservation and family-building options.

About our guests:

Mike Scherer is a cancer survivor, co-founder and chief visionary of oncofertility charity Worth the Wait. He is passionate about helping other young adult cancer survivors lead meaningful lives in survivorship. He has shared his perspective with clinical and industry audiences nationally through speaking engagements, articles and podcasts. When he’s not advocating for cancer awareness, he enjoys spending time with his family and cycling. Mike is also a managing partner of Summit Financial Strategies, an investment management firm.

Megan Scherer is the co-founder and executive director of Worth the Wait. Megan advocates for patients and oncofertility nationally as a speaker and patient advocate. She enjoys the personal relationships she forms with young patients Worth the Wait assists and loves providing hope and inspiring others with her story as a caregiver, infertility patient, and mom to son Elliott. Before co-founding Worth the Wait in 2021, Megan held marketing communication leadership roles in the health insurance industry. 

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!⁠

Key Moments:

At 29 minutes: "We look into the eyes of our child now and we don't think, man, you were an expensive little guy. We just think, we're so fortunate to have you here and be able to raise you. When we sat down to start Worth the Wait, we said, okay, if we were able to remove that financial barrier, would you be willing to go through what is also a difficult process? And the answer was yes." - Mike Scherer

At 32 minutes: "There's so many stories of AYA patients every week who are reaching out for assistance and there are people who are maxing out their credit cards to pay for [fertility treatments]. There's people I know that are selling t-shirts, that are selling popcorn, that are doing these things because this is the one thing in their life that they want to have a chance at." - Megan Scherer

At 38 minutes: “"You don't have time to waste and depending on the diagnosis you may have a very short window. Banking sperm takes a day but preserving eggs can take weeks, so you want to know upfront." - Megan Scherer

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

In this captivating episode of "The Patient From Hell" podcast, Dr. Sydney Barned shares her unique perspective as both a practicing physician and a seven-and-a-half-year survivor of stage 4 non-small cell lung cancer (NSCLC). Dr. Barned offers invaluable insights into the challenges of navigating a cancer diagnosis, the importance of patient advocacy, and the gaps in understanding between doctors and patients. Her story highlights the need for better communication, education, and support in cancer care, while also shedding light on the personal struggles and triumphs of living with cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) funding study comparing the impact of using different types of material to understand palliative chemo for advanced cancer patients. 

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Debra Schragg, MD, MPH.

Key Highlights:

1. Dr. Barned's dual perspective as a doctor and cancer patient provides a rare and insightful look into the complexities of cancer care.

2. The episode emphasizes the importance of patient education and self-advocacy in navigating cancer treatment and palliative care.

3. Dr. Barned's experience reveals gaps in doctor-patient communication and understanding, particularly regarding palliative chemotherapy.

About our guest:

Dr. Sydney Barned, is a dedicated physician and lung cancer advocate committed to advancing research, raising awareness, and supporting policy initiatives in the field of oncology. Diagnosed with stage IV lung cancer at the age of 33, she brings a unique perspective to lung cancer advocacy, combining her firsthand experience with her medical expertise to drive positive change in the fight against cancer. With a background in Internal Medicine and a focus on hospital medicine as an internal medicine hospitalist, Dr. Barned is actively involved in community outreach and educational initiatives aimed at empowering patients and healthcare professionals alike.

Key Moments:

At 3 minutes : "So I had to do a lot of compartmentalization and it was some a lot of the times it was tough especially when I got patients who were younger and you know they reminded me of myself.... I've diagnosed patients with cancer, treated the side effects of cancer, you know, had to have those difficult conversations where I'm like,’ look, treatment is not working. We need to switch to more comfort based measures.’ I've had to bring in hospice and, you know, I've even had to pronounce time of death. So I've seen the entire spectrum and I mean, one of the things that it definitely does make me, it makes me very grateful for the life that I have."

At 30 minutes: "Most patients when you're going through a diagnosis of cancer, you are not necessarily understanding everything because the emotions that are tied to hearing you have cancer. So just hearing that in itself is a blow, much less hearing you have advanced disease. That's going to be another blow as well. And a lot of the times when doctors are talking to you after hearing those two statements, it kind of sounds like, again, I'm going to be aging myself, but you remember Charlie Brown? When the adult was talking... you didn't hear anything. And that's kind of what it's like when a patient is hearing all of this information from their doctors."

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!⁠

--

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

In this episode, we hear the remarkable story of Wenora Johnson, a three-time cancer survivor who faced the challenges of job loss, single motherhood, and pursuing an education, all while navigating her diagnoses. Wenora shares her experiences with warmth, humor, and wisdom, offering valuable insights for anyone facing adversity. We delve into the cultural taboos surrounding cancer in her community, the critical role genetics played in her health journey, and why involving loved ones in our health decisions is so essential. Wenora’s story goes beyond survival; it’s about how she turned her experience into a passion for patient advocacy, making a lasting impact in the cancer community.

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!

Key Highlights:

1. Given the significant role genetics play as a risk factor for cancer, it is important to keep your family and loved ones informed. 

2. Give yourself grace; you don’t have to become a patient advocate fighting for systemic change. It’s perfectly okay if your focus is simply on getting through today.

3. Having a supportive healthcare team that genuinely wants to see you succeed is crucial—not only for the effort they’ll put forth but also for inspiring you to stay healthy and proactive in your treatment. 

Feeling lost in your cancer experience? We've created interactive, disease-specific maps to help you see all the paths you might face. Launching this Fall! Sign up for access here.

About our guest:

Wenora Johnson is a three-time cancer survivor (Colorectal, Endometrial and Basel Cell Carcinoma), Volunteer Research/Patient Advocate and Navy Veteran. As a volunteer with various organizations, she shares her understanding of policy; research; genetic testing; hereditary cancer; patient engagement and clinical trials with patients and the healthcare community. Being a Lynch Syndrome patient, Wenora advocates for genetic testing and awareness. She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with organizations such as CAP (College of American Pathologist); Clinical Trials Curator for Fight CRC; FORCE (Facing Our Risk of Cancer Empowered) Research Advocate, Peer Navigator and Board Member; a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program; a PCORI Ambassador and Clinical Trials Panel Member; IRB for local community hospital; NRG Oncology Patient Advocate Committee Member and the AACR Scientist~Survivor Program - presenting a poster on financial toxicities and disparities among minority patients; Center for Genomic Interpretation (CGI) Acceptable Thresholds Committee Board Chair and an External Advisory Board Member for WCG Clinical Services. 

She has written various patient advocate blogs and participated as a guest speaker/panelist and serves as the Community Patient Advocate for the University of Chicago Comprehensive Cancer Center and the University of Chicago Cancer Center. Wenora works in administration in the greater Chicagoland area and enjoys reading and traveling with her family.

Visit the Manta Cares website 

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

In this episode we speak with Roger Royse, a Silicon Valley lawyer and pancreatic cancer patient. Roger shares his experience navigating the healthcare system, discussing his approach to treatment, the emotional challenges he faced, and the insights he gained along the way. He emphasizes the importance of being proactive, questioning assumptions, and seeking multiple medical opinions. Roger also delves into the anger he felt during his experience and how he learned to channel it productively. Throughout the conversation, he offers valuable advice for both patients and their loved ones, highlighting the need for personal responsibility and careful communication.

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!⁠

Key Highlights:

1. The importance of questioning medical assumptions, seeking multiple opinions, and being proactive in your treatment experience.

2. By controlling and channeling emotions like anger, patients can become more effective advocates for their own care.

3. An overview of the dos and don'ts of supporting a loved one facing a cancer diagnosis including the importance of careful communication, the power of offering practical help, and avoiding insensitive or unsolicited advice.

About our guest:

Roger Royse is a startup lawyer in Silicon Valley and a pancreatic cancer patient. Roger was diagnosed with stage 2B pancreatic adenocarcinoma in July 2022 after taking a multi cancer early detection blood test.  After 6 months of chemotherapy and surgery and an experimental cancer vaccine, Roger currently has no evidence of disease as of July 2024. 

Roger has been active for many years with the Leukemia Lymphoma Society having been its Bay area Man of the Year in 2012 and since his diagnosis has joined the board of the Cancer Patient Lab.org, a non profit dedicated to evidence based therapies and has created a community for cancer therapy technology startups to demo their solutions in person and online at www.cancerstartup.com. Roger has since testified to an FDA Advisory committee on multi cancer early detection and has been featured in many publications including the Wall Street Journal on MCED. 

Roger believes in the patient being proactive and taking personal responsibility for their health and being very involved in their treatment decisions based on evidence based treatments.

Visit the Manta Cares website 

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

In this episode we speak with Bellinda King-Kallimanis, PhD, an expert in oncology research and patient advocacy. Bellinda shares her diverse experience in the field, from academia to the FDA and now her role at LUNGevity Foundation. The conversation covers various aspects of lung cancer, including screening procedures, risk factors, and common misconceptions. Bellinda emphasizes the importance of early detection and addresses the stigma associated with lung cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) and a study comparing the impact of using different types of material to communicate screening information to patients. The episode also includes a rapid-fire Q&A section, where Bellinda provides concise explanations of key terms and concepts related to lung cancer.

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Robert J. Volk, PhD.

Key Highlights:

1. Lung cancer screening compliance is strikingly low at 5-6%, despite high risk for those with tobacco history, and additional requirements may further complicate the process.

2. Stigma surrounding lung cancer, primarily due to its association with smoking, can deter people from seeking screening or discussing their health history, despite the fact that people with no tobacco history or people who have not smoked can also develop the disease.

3. Patient involvement in research, through initiatives like citizen science programs, and improved communication of complex information are crucial for advancing lung cancer care and understanding.

About our guest:

Dr. Bellinda King-Kallimanis is Senior Director of Patient-Focused Research at LUNGevity Foundation. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders and has built a Citizen Scientist program to aid this. Prior to joining LUNGevity, she worked at the US Food and Drug Administration Oncology Center of Excellence on the Patient Focused Drug Development team. There, she worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials.

Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.

Key Moment:

At 38:39 “I've taken it on to try to improve my communication as a researcher, because we spend so many years reading complex materials that you just start talking that way. It does not resonate with my family. They'll be like, what are you talking about? Who do you think you are? So if we really want to be able to talk to people and connect the work we do, then we have to be able to talk about it in much simpler terms. I really do think it's so important for us all to work on our abilities to make sure that we are speaking to each other versus, I've been in plenty of conversations where people are not speaking, they're just speaking around each other because there's a gap in the understanding and healthcare is already like very complex and cancer is really scary. So,just being aware of not talking in acronyms all the time.”

Visit the ⁠Manta Cares Website⁠

Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only.  This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Cancer care is difficult enough to navigate as someone with little to no healthcare/biology background, but what does it mean when a physician faces similar challenges within the healthcare system? Dr. Jean-Luc “JL” Neptune shares his compelling caregiver story of caring for his mother and father's cancer diagnoses simultaneously with the help of his sister. We delve into how his experience impacted his career, his outlook into the flaws of the healthcare system, and his perspective on what patients (and caregivers) can do to get the most out of their care. 

Key Highlights:

1. Access to contextualized information is not easy; information online without context can be overwhelming and not specific to the patient.

2. The best source of information about your diagnosis and prognosis is likely a doctor in the field, but finding one with the time to fully inform you is not an easy feat either. Fee-for-service care is the current healthcare model, which arguably promotes quantity over quality. However, the tide is slowly but surely shifting towards value-based care.

3. To achieve the highest quality care today, the best thing you can do is advocate for yourself and seek multiple expert opinions. Keeping track of your symptoms is a good idea for effectively and efficiently contextualizing your treatment plan with your provider(s).

About our guest:

Jean-Luc (“JL”) Neptune, MD MBA is a physician executive, digital health leader, investor and advisor with 20+ years of experience in the health innovation space. Dr. Neptune most recently served as the CEO, Chief Medical Officer, and co-founder of Suntra Modern Recovery, which provided early addiction intervention and treatment services at scale. Prior to Suntra Modern Recovery Dr. Neptune was the founder of Athletik Health Inc., which operated modern sports medicine clinics offering the “athlete in everyone” outstanding clinical care and customer service. Dr. Neptune served as entrepreneur-in-residence at the Hospital For Special Surgery (“HSS”), the #1 rated orthopedic hospital in the United States, working closely with the leadership team of the HSS Innovation Institute. Dr. Neptune was also General Manager at Blueprint Health where he oversaw investments into dozens of digital health companies (including RubiconMD, NexHealth, Moving Analytics, and CleanSlate UV), and continues as a partner in the Blueprint investment funds. Dr. Neptune earned a BA from Columbia College at Columbia University, an MD from the Columbia College of Physicians and Surgeons, and an MBA at the Wharton School. Dr. Neptune completed a residency in internal medicine at New York Presbyterian Hospital and is licensed to practice medicine in the state of New York.

Key Moments:

At 10:55 “I've often debated with people online about access to information and really as a patient, should you be like going on the internet and looking at all these sites? And my argument is you shouldn't because unless you can contextualize this information, make it specific to you and cut out all of the noise from the signal, you're probably only making yourself more stressed out, more confused by seeking information from all these places.”

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Brad Power, the co-founder and CEO of the Cancer Patient Lab, shares his insight on a multitude of topics such as: the challenges of innovating healthcare, the importance of personalized care, and Brad’s personal experience with cancer.

Key Highlights:

1. Large organizations are resistant to change, making it difficult to innovate within the healthcare industry.

2. Personalized care is the future of healthcare, allowing for tailored treatments and better outcomes.

3. Patients should educate themselves, seek second opinions, and actively participate in decision-making about their care.

About our guest:

Brad Power is the co-founder and CEO of the Cancer Patient Lab, a patient-led learning community for cancer patients and caregivers navigating testing and treatment decisions beyond the standard of care, and founder of the CancerHacker Lab, which also helps startups that are disrupting the status quo in cancer care. In 2018 Brad was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which led to "no evidence of disease" for four years, until it recently recurred. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did. Brad then hosted two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. In 2022 Brad launched Cancer Patient Lab with two advanced prostate cancer patients. Brad hopes to make hackathons and other resources available to many more patients who are facing complex testing and treatment decisions. Brad is a founding member of ennov1; an advisor to 4DPath, Alva10, Cancer Commons, Consuli, Rabble Health, and Travera; and is an active contributor to the Personalized Medicine Coalition.

Key Moments:

At 2:04 “Software is easy to change and people are hard to change.”

At 24:56 “If I'm a doctor and let's say I'm in a community hospital environment, which is 80% of where cancer gets treated, and I'm dealing with a dozen or two dozen different kinds of cancer, I may not know. I had a patient that looked like you six months ago or a year ago, and this was the best thing at that time. Therefore, this is the best thing for you. And the patient says, no, did you not know about bispecifics or whatever the immunotherapy is or whatever the new, new thing is? And so the patient who's coming in fresh with open eyes finds things that the doctor who spends his or her life doing this kind of work is not able to keep up with.”

At 42:12 “Cancer Patient Lab is the patient-led learning community that I co-founded that is a source of education and services for advanced cancer patients outside of the standard of care.”

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Janice Cowden, retired nurse and patient advocate, shares her remarkable triple negative breast cancer (TNBC) story. Five years following successful treatment for stage one breast cancer in 2011, Janice was diagnosed with a stage 4 metastatic TNBC recurrence. As of today she has 8 years of no evidence of disease (NED) under her belt. She shares how she stumbled upon the cancer community that inspired her to become the advocate she is today and the uncertainty that comes with NED. She also shares how she copes with losing friends in the cancer community through her patient advocacy work. We also have a rapid fire Q&A where she answers questions surrounding various medical terminologies, diagnoses, and more to keep you in the loop. 

NOTE: There is one clarification from the rapid fire Q&A session. The definition of disease free survival (DFS) is the time from random assignment (used in clinical trials and research studies to assign participants to different groups) to cancer recurrence or death from any cause (Gutman SI, Piper M, Grant MD, et al. 2013).

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!

Key Highlights:

1. Metastatic breast cancer (MBC) is stage four breast cancer that has spread to distant sites in the body.

2. Finding events and communities centered around cancer not only supports cancer patients emotionally and socially, but can also serve as informational hubs. Being proactive in learning about your diagnosis, whether it’s through community and/or research on your own time, can help you feel confident with the choices you make. 

3. While finding a community of other cancer patients can help, unfortunately this disease means that you will lose friends you make in these settings. It doesn’t necessarily get easier, but finding an outlet to cope with such losses is vital to your wellbeing.

About our guest:

Diagnosed with Stage IV triple negative breast cancer in 2016, five years after an early-stage breast cancer diagnosis, Janice launched into patient advocacy following training through Living Beyond Breast Cancer’s (LBBC) Hear My Voice Outreach program in 2017. As a peer-to-peer support and research patient advocate, Janice is passionate about supporting others with metastatic breast cancer, in addition to continually furthering her scientific knowledge base of this disease, treatments, and clinical trials, which she acquires through attending scientific breast cancer conferences and webinars. Janice is involved with several patient-founded and led organizations including PCDI, GRASP, and Project Life MBC. As a trained peer support volunteer, she is founder of an international online peer support group for patients newly diagnosed with MBC. She serves on the Board of Directors for METAvivor Research and Support Inc., and is an Advisory Board member for Project Life MBC. She is an individual member of the Metastatic Breast Cancer Alliance. When she’s not busy with advocacy work, Janice enjoys traveling, reading, outdoor activities, and spending time with family, including her husband, two adult children and three grandchildren.

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

In this episode, Dr. Doug Blayney, oncologist, former President of the American Society of Clinical Oncology (ASCO), and the Chief Medical Officer of Manta Cares, discusses the latest advancements in breast cancer treatments presented at ASCO’s 2024 Annual Meeting. He highlights the significant progress in antibody drug conjugates (ADCs), which are engineered to specifically target cancer cells, offering new hope in cancer treatment. The Manta Cares team also attended the ASCO conference, presenting an abstract for a personal treatment management tool designed to assist cancer patients and survivors (and their families!) in navigating their next steps – Manta Maps!

Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here!

Key Highlights:

1. Advancements in breast cancer treatment were highlighted at the ASCO Annual Meeting this year, including alternatives to chemotherapy and the emergence of antibody drug conjugates (ADCs).

2. Checkpoint inhibitors help the immune system recognize and attack cancer cells by removing the "brakes" that prevent the immune system from targeting the cancer.

3. Personalized approaches to treatment based on patient age, co-morbidities, and cancer type, were highlighted, leading to more effective and tailored treatments. 

About our guest:

Dr. Doug Blayney is an oncology physician who specializes in breast cancer. His research focuses on quality improvement in cancer care systems, new drug development, and patient experience improvement. At the American Society of Clinical Oncology (ASCO), he was founding Editor-in-Chief of its flagship practice journal, and as President, started the ASCO Quality Symposium and began planning for ASCO’s CancerLinq. He was a founding member of the National Comprehensive Cancer Network (NCCN) Growth Factor Guideline panel, and is a past member of the U.S. Food and Drug Administration’s Oncology Drugs Advisory Committee and the NCCN Board of Directors. Dr. Blayney leads the Manta Cares Scientific Advisory Board as the Chief Medical Officer.

Key Moments:

At 1:05 "As a doctor who treats breast cancer, I thought it was important that we have a lot of alternatives to chemotherapy. So even though some of the studies were portrayed as negative because they didn't improve overall survival, I think pushing out the time a patient gets chemotherapy and its associated toxicities is a major advance.”

At 21:14 "We need better assays to predict who's going to respond to these ADCs (Antibody Drug Conjugates). We're learning that they're here to stay and they're a great benefit to many with breast cancer and other cancers." 

At 35:20 “It's thought that you and people without known cancer, develop one or two cancers a day, small little bitty ones and our body's immune system recognizes that as foreign and eats them up and the cancer doesn't grow and proliferate. One of the ways cancer grows, especially in adults, is immune escape. So somehow the brakes are put on the immune system at some point when that cancer develops. The IO checkpoint inhibitors are thought to work by taking off those brakes.”

Visit the Manta Cares website 

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.

Cecilia Lang-Ree shares her experience as a childhood survivor of acute lymphoblastic leukemia. She shares some of her memories as an inpatient, her struggles with fitting in with her peers at school, and the evolution of her identity in relation to her survivorship. She also shares her discovery of her fertility issues and the importance of discussing fertility as early on as possible as a cancer patient. She ends the episode with powerful advice about owning your survivorship and the resources available for cancer survivors. 

Visit the ⁠Manta Cares website⁠ & ⁠sign up for the access list⁠ for our digital platform coming soon!

Key Highlights:

1. Being a cancer survivor, especially at a young age, significantly affects one's life and identity, often leading to phases of uncertainty, denial, and willful ignorance. Embracing your survivorship can lead you to people who are also in your shoes, and through connections you can find resources that will support your survivorship-specific needs.

2. The AYA (Adolescent and Young Adult) community plays a crucial role in providing support and understanding for young cancer patients. 

3. Discovering fertility issues can be emotionally challenging, emphasizing the need for early conversations about fertility options like egg and embryo freezing. Survivorship clinics and self-advocacy are key in navigating these preservation options as well as other side effects of cancer treatments.

About our guest:

Cecilia Lang-Ree is a childhood leukemia survivor, advocate, and healthcare Product Manager born and raised in the Bay Area. Since her diagnosis at age 4, Cecilia's personal and professional mission has become to make prevention information accessible to all. At work, she combines product strategy, user savvy, and her academic background in chronic disease prevention & behavioral design to pioneer consumer products that help people lead healthier, happier lives. 

Currently, Cecilia is the Senior Product Manager at Biolinq, a medical device company developing a minimally invasive glucose monitoring sensor for metabolic health. Cecilia holds an M.S. and B.A. from Stanford University, and outside of work enjoys hiking, skiing, trying new restaurants in San Francisco, and hanging out with her husband, Christian, and beloved family! 

Key Moments:

At 6:55 “I was very lucky that I had parents who could read scientific journal articles. They could read my clinical protocol and understand the potential side effects and take action to prevent them. They could be my advocates with doctors and nurses, but I saw firsthand that most of the other kids in the hospital did not have that. Many were children of undocumented immigrants or folks just did not have access to that kind of information. And so for me, that has really sparked, in my career, this passion for prevention, early detection, and really knowing that health data and health knowledge is power.”

At 11:39 “I didn't want the attention. I wanted so badly just to fit in and be normal. I didn't want anybody to know, push it away, push it away, push it away. Don't put this intention on me. I never wanted anybody to mention the C word, cancer, because when the C word got dropped in the classroom or anywhere else, it just changed the energy in the room.”

Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.