AliveandKick'n the podcast

The movers and shakers in the lynch syndrome field. Join patient advocates, physicians, geneticists, genetic counselors and others in the space, as we go deep into what it's like to LIVE in a world with Lynch Syndrome genetic mutations.

AliveAndKickn Podcast - Dr William Oh 01/12/2025

AliveAndKickn Podcast - Dr William Oh I sit down with Dr William Oh, newly appointed Precision Medicine Director at Yale Cancer Center. Dr Oh is a Medical Oncologist who has focused mainly on Genitourinary cancers, so we of course talk about prostates. We discuss high risk populations and of course finding cancer early, knowing family histories and decision making about having surgery. /episode/index/show/aliveandkickn/id/34827720

AliveAndKickn Podcast - Dr Mohammad Ali Abbass 12/23/2024

AliveAndKickn Podcast - Dr Mohammad Ali Abbass I sat down with MSK's colorectal surgeon Dr. Mohammad Ali Abbass just before CGAIGC, the Collaborative Group of the Americas on Inherited GI Cancers. At CGA, Dr Abbass moderated a discussion around colon resection for Lynch Syndrome patents. Dr Abbass and I also discussed a study around the outcome of surgical decisionmaking for those who have had germline testing before surgery vs those that have not. Of course we talk aspirin, vaccines and exercise and our lives in the "Lynch Syndrome bubble" and while some changes have been glacial, others have moved forward more significantly over time. For fun, we talked Artificial Intelligence and risk prediction, and soccer in the New York City area. /episode/index/show/aliveandkickn/id/34579675

AliiveAndKickn Podcast - Cathy Nobil-Dutton 12/21/2024

AliiveAndKickn Podcast - Cathy Nobil-Dutton From a warm summer day, I sat down with Cathy Nobil-Dutton, lynch syndrome survivor, wellness coach and more. Cathy is the only person I've met who had almost melanoma, sort of. Our conversation is all over the place, as it should be when discussing living with lynch syndrome. Wouldn't have it any other way. /episode/index/show/aliveandkickn/id/34564765

AliveAndKickn Podcast - Dr. Patrick Soon-Shiong 12/03/2024

AliveAndKickn Podcast - Dr. Patrick Soon-Shiong I sit down with Dr. Patrick Soon-Shiong, Executive Chairman and Global Chief Medical and Scientific Officer for Immunity Bio, and we talk everything cancer vaccines scientifically, including the potential Lynch Syndrome vaccine. A new term is announced on our podcast, Tumor Educated Lymphocytes. Dr Soon-Shiong, succinctly summarized a very complicated vaccine space, which will be important as more patients enroll in trials and learn about their genetics. /episode/index/show/aliveandkickn/id/34257410

AliveAndKickn Podcast - Diane Hardesty 11/26/2024

AliveAndKickn Podcast - Diane Hardesty I sit down with a reluctant guest, Diane Hardesty finally, Lynch Syndrome patient, speaker and a self-proclaimed Valley Girl. Before Diane's genetic testing results, 10 people in her family had passed away from cancer. Diane's son did not inherit her mutation so it ends with her. Diane is still a previvor, as she has not had cancer, but not for a lack of looking. Diane's sister has had cancer 18 times and she is still with us. How can she NOT do this? - is Diane's mantra when asked how she can talk about Lynch Syndrome when so many have been affected. /episode/index/show/aliveandkickn/id/34168400

AliveAndKickn Podcast - Robin Centner APRN, CNM, MSN 09/28/2024

AliveAndKickn Podcast - Robin Centner APRN, CNM, MSN I sit down with Robin Centner, Lynch Syndrome survivor, who talks about how she had a conversation with Dr Henry Lynch himself, her family history, and how she made it her mission to take of her family and make sure they had all the information they needed to take care of their health. Robin feels fortunate to be able to do what she does in her home state of Kentucky and beyond. /episode/index/show/aliveandkickn/id/33243332

AliveAndKickn Podcast - Dr Christina Dieli-Conwright 09/15/2024

AliveAndKickn Podcast - Dr Christina Dieli-Conwright I sit down with Dr. Christina Dieli-Conwright to discuss exercise and nutrition, esecially as it pertiains to lynch syndrome patients, but all cancer patients and everyone else. Dr Dieli- Conwright works with cancer survivors exclusively now, and is excited to be working with some of the most vulnerable populations including lynch syndrome patients. Moving as a message is a tough one especially in the States, but it's a necessary one, especially in the cancer journey. Christina's clinic at Dana Farber is for Dana Farber patients being treated there, but measurements can be done virtually and remotely. Everyone has their own motivation for potentially exercising, but sometimes a cancer diagnosis will stimulate a change in behavior. All exercise is good for lynch syndrome patients, but most importantly, pick the one you're going to do and stick with. We discuss verbage and terminology in research, trials, and healthcare in general. Sit less and move more. Some exercise is better than none. /episode/index/show/aliveandkickn/id/33060457

AliveAndKickn Podcast - Dr Darrell Gray II 09/02/2024

AliveAndKickn Podcast - Dr Darrell Gray II I sit down with Gastroenterologist Dr Darrell Gray II, as we discuss the Association of Black Gastroenterologists and Hepatologists (Black in Gastro) movement, and how he approaches communicating bedside practice to policy. He wants to advance the science and center the community involvement, and there is always will be more work to be done. As new technology is implemented, those that have been marginalized in the past, tend to be the last to have access and/or participate. I asked a question that had been on my mind, which was the notion of ethnicity in clinical trials. ABGH is a 501c3 that continues to grow since inception in 2021. Black women in medicine are statistically leading black men in medicine, but they face their own challenges (as do all women working in medicine). /episode/index/show/aliveandkickn/id/32867687

AliveAndKickn Podcast - Roxy Thunder 08/17/2024

AliveAndKickn Podcast - Roxy Thunder I sit down with Roxy Thunder, originally from the Phillipines but now residing in Michigan. Roxy is a bodybuilder, personal trainer and a lifestyle coach. Roxy inherited her Lynch Syndrome mutation from her father, who passed away from colon cancer and was diagnosed at 45. Roxy herself developed bleeding, where she discovered PCOS and Endometriosis, all while going through a divorce as well. She also had genetic testing to confirm Lynch Syndrome, and subsequently developed the lifestyle she lives now. Even with family passing away in the Phillipines, so far, none of the family has gotten genetic testing. Roxy credits changing her lifestyle and training for keeping her healthy. In her spare time, Roxy became passionate about politics during Covid and researching, including going down some rabbit holes, as we all have. /episode/index/show/aliveandkickn/id/32621382

AliveAndKickn Podcast - LeeAnne Hayden 06/09/2024

AliveAndKickn Podcast - LeeAnne Hayden I sit down with LeeAnne Hayden, Lynch Syndrome patient, ostomy patient, and host of The Beautiful Bag podcast. Not only does she have an inspirational story, but she is also the first and only (so far) lynch syndrome podcaster that I've had on. LeeAnne has adjusted to her new lifestyle and is upfront that it's an adjustment that takes time, but like anything, she hits it head-on. LeeAnne is sharing her ostomy experience so others can benefit. /episode/index/show/aliveandkickn/id/31668417

AliveAndKickn Podcast - Allison Rosen 05/27/2024

AliveAndKickn Podcast - Allison Rosen I sit down with Alison Rosen, colon cancer survivor and lead on Project Echo for the American Cancer Society. We talk about young adult survivorship, cancer advocacy and of course Lynch Syndrome. While Alison was 32 at diagnosis, she (so far) has tested negative for anything genetic, which was surprising given the family history of cancer. Apparently we were on a podcast together in 2012 or so (someone look it up) so Alison looked me when it was time to potentially get an ostomy. Project ECHO (Extension for Community Health Outcomes) bringing subject matter experts with participants from many walks. All teach all learn is the motto. Successes and failures, tools, and more. Allison is co-chairing the Art and Science of Hope panel at ASCO. /episode/index/show/aliveandkickn/id/31480307

AliveAndKickn Podcast - Scott Weissman 05/01/2024

AliveAndKickn Podcast - Scott Weissman Full disclosure, we recorded this in February, just as the Alabama Supreme Court IVF decision was handed down. I sit down with Scott Weissman, Genetic Counselor and so much more, at the Norton & Elaine Sarnoff Center for Jewish Genetics. Statistically we're all carriers for something in the carrier screening space, but also statistically it's very low for both partners to be carriers for the same mutation. Interestingly, Illinois has specific issues geographically as it borders a number of states that have strict reproductive rights issues, including abortion and family planning. We did discuss hereditary cancer, including CMMRD, constitutional mismatch repair deficiency. We also discussed the potential Lynch Syndrome vaccines and how the current backlash against science and vaccinations could be detriments to moving forward. We did get into socioeconomic issues, not just political and philosophical, but I think we're on a similar page. Whatever hair we had left is gone. /episode/index/show/aliveandkickn/id/31074453

AliveAndKickn Podcast - Dr. Asaf Maoz 04/21/2024

AliveAndKickn Podcast - Dr. Asaf Maoz I sit down with Dr Asaf Maoz, Medical Oncologist at Dana Farber Cancer Institute, who I recently saw at the LynkedIn and Scientific Symposium. We discussed what brought Dr Maoz to this point, discussing immunology, T-cells, receptors and targets. Dr Maoz confirmed that not all Lynch cancers are MSI-H. This year, for the 5 year anniversary of the patient LynkedIn conference, they had the scientific symposium the day before. Dr Michael Foote from MSK presented some data on cancer risk after immunotherapy. I appreciate the debates and conversations that take place at the symposiums, and how data will continue to drive innovation, but like anything, until you generate the data you can't hypothesize and stratify. Of course we ventured into the cancer vaccine space and the unique molecular features of Lynch Syndrome and the potential to prevent cancer in the future. Takeaway is to keep up with screening regardless. We also discussed language barriers to healthcare overall, not just Lynch Syndrome, including how AI is being looked at in order to potentially find tidbits that are missed. /episode/index/show/aliveandkickn/id/30917353

AliveAndKickn Podcast - Emily Goldberg 03/30/2024

AliveAndKickn Podcast - Emily Goldberg I sit down with Emily Goldberg, Genetic Counselor for JScreen. JScreen is a nonprofit that provides cancer genetics testing, but also has a reproductive carrier screening panel. Most patients choose saliva but sometimes blood is chosen by mobile phlebotomy. JScreen which started in Atlanta, provides testing and counseling in all 50 states. Pricing is unique because they are a non-profit. Cancer genetics was launched 3 years ago at JScreen and the numbers have increased dramatically with people wanting to have genetic testing. There's still wait times for cancer genetic appointments, so there's a need for services like JScreen. Variants of Uncertain Significance still happen regularly, about 20% of the time. Historically they get classified over time as benign. Cascade testing, or getting other family members tested after one tests positive, continues to be an issue in the space. /episode/index/show/aliveandkickn/id/30606843

AliveAndKickn Podcast - Cody Mitchell 03/06/2024

AliveAndKickn Podcast - Cody Mitchell Boise Podcast pro Cody Mitchell joined me on the podcast as we talked Lynch Syndrome as she approaches her 4th cancerversary of endometrial cancer. Cody has been able to turn her diagnosis into knowledge and cohesion among her network. Cody is considered de novo as she is the first in the family to have a lynch mutation. Cody's genetic counselor recommended AliveAndKickn and she appreciated that we are living with Lynch, and the information is coming from reliable sources, especially in a world of misinformation. Cody and I are also on Peloton together, so she shared her story of getting her Peloton during treatment, which of course during Covid. She gives credit to her oncology physical therapist who recommended an exercise regimen, and cites the benefit of exercise and consistency to maintaining her identity. Her numbers actually improved during treatment. I won't give away Cody's favorite Peloton instructors, so you have to listen for yourself. I tell the story of my one and only time doing Peloton meditation in the studio. /episode/index/show/aliveandkickn/id/30250083

AliveAndkickn Podcast - Erica Nelson 02/26/2024

AliveAndkickn Podcast - Erica Nelson I sit down with the Awkward Angler herself, Erica Nelson, from west of Denver in Crested Butte, Colorado. Erica is a flyfishing guide in the Valley with a Lynch Syndrome story and so much more. Erica also does consulting on diversity, equity and inclusion with her own podcast. The organization Brown Folks Fishing has a number of programs around conservation, but also looking at leadership roles. Angling for All addresses inequality in fishing, talks about reconciling and navigating our own identities and creating action. True diversity work is in the recovery. Erica is the second indigenous flyfishing guide in Colorado. I learned about Hozho, the term for balance and beauty in everything. The loss of her mom unexpectedly coincided with pain that caused her to get checked and she had cancer. She had a hysterectomy, and learned she inherited MLH1 from her father. Erica is balancing the grief of losing her mother and the changes in her body. Erica disclosed that she postponed her urgent surgery to go on a trip to Brazil that she had been planning for some time. Obviously she's ok, so...good decision/bad decision. /episode/index/show/aliveandkickn/id/30104733

AliveAndKickn Podcast - Dianne Hammer 02/18/2024

AliveAndKickn Podcast - Dianne Hammer I sit down with Dianne Hammer, who shares her Lynch Syndrome story for the first time on a podcast. Recently diagnosed, Diane is still a previvor, although she found pre-cancer when she had her hysterectomy. She's also unsure which side of her family she inherited her mutation. An avid writer and reader, Diane was also sexually assaulted while working at a bookstore at knifepoint. Although able to fight him off, the person had assaulted others, and eventually caught and put away. Diane became a changed person after the experience, similar but not the same as cancer, a car accident, etc. As a researcher, Diane found no resources for middle aged sexual assault, so she built her own platform. Sexual assault is not about age, sex, desirability. It's about power and control. I was caught off guard about the dramatic number of sexual assaults that occur, taking into account the ones that aren't even reported. I'm guessing there are people out there who could benefit from Diane's experience and the community she is creating. /episode/index/show/aliveandkickn/id/30007278

AliveAndKickn Podcast - Rachel Travis 02/05/2024

AliveAndKickn Podcast - Rachel Travis I sit down with Rachel Travis, otherwise known as the TattedRayofSunshine. Not only does Rachel have a Lynch Syndrome colorectal and peritoneal cancer story, but also an alcohol, a firearms, a weight, a childhood trauma, rape and more. Rachel hopes that her diagnosis was a wakeup call for others, including her family. Through her faith, she feels she can smile and laugh and get through this, and just about anything else. We're both hopeful for the future. /episode/index/show/aliveandkickn/id/29795233

AliveAndKickn Podcast - Michelle Vina-Baltsas 01/25/2024

AliveAndKickn Podcast - Michelle Vina-Baltsas I sit down with Michelle Vina-Baltas, who has been having colonoscopies for 20 years, developed skin cancer 12 years ago, but only got tested for Lynch Syndrome recently. Even as a life coach with tools for mitigating it, Michelle still gets a little anxious before screenings. Michelle works with women that struggle with food and body image. Finding balance and a positive relationship with food is difficult for so many of us, including those who have had cancer issues. It all ties into how we respond goingt to the doctors for screening. /episode/index/show/aliveandkickn/id/29655373

AliveAndKickn Podcast - Amber Eastman 01/08/2024

AliveAndKickn Podcast - Amber Eastman I sit down with Amber Eastman, Lynch Syndrome survivor, and member of the Confederated Tribes of Ronde in Oregon. Amber confirmed with me that women of color face a more difficult challenge in that they are often noit believed, that they're crying wolf when they come to the physician's office. Thankfully, Amber met with a physician who had just attended a lynch syndrome seminar, and she was correctly diagnosed. I love Amber's policy of never a victim, always victorious. Not only did Amber have colon cancer and liver cancer, but also ovarian cancer. Finding AliveAndkickn and being part of Living with Lynch gave Amber the impetus to become a Lynch Syndrome advocate in her community. /episode/index/show/aliveandkickn/id/29380358

AliveAndKickn Podcast - Srinivas Pai 11/21/2023

AliveAndKickn Podcast - Srinivas Pai I sit down with Srinivas Pai, Lynch Syndrome survivor from lots of different places including India, Singapore, Michigan, New York and now Indiana. While of course he has a rectal cancer story, how he and his wife, an Internist herself, managed his treatment in 2012, tells a story itself. We talk about the rectal cancer trial that recently took place roughly 10 years after his own treatment at Memorial Sloan Kettering in New York City. The best thing you can do is share with your family, and what they do with it...is what they do with it. Srinivas is building what he's termed Power (withpower.com), the AirBNB of clinical trials, not just for Lynch Syndrome. /episode/index/show/aliveandkickn/id/28743673

AliveAndKickn Podcast - Jaystan Davis 11/04/2023

AliveAndKickn Podcast - Jaystan Davis I sit down with Jaystan Davis, colon cancer survivor at age 19, as we discuss Lynch Syndrome, basketball, and more. We also talk about how what was originally thought was an infection was actually additional cancers, so being your own advocate is important. His clinical trial of immunotherapy and folfox proved to be effective in treating Jaystan. He did the treatment for 2 years from home, while still being a student. August 2023 was his last treatment and is cancer free. So now what happens? There's no playbook, especially for someone in this space at this age. We talk about coaching with his father, and I share my one season of coaching basketball experience. /episode/index/show/aliveandkickn/id/28514318

AliveAndKickn Podcast - Dr Toni Seppala 10/08/2023

AliveAndKickn Podcast - Dr Toni Seppala I sit down with Dr Toni Seppala from Finland, GI surgeon, as we talk Lynch Syndrome and hockey instead of soccer for a change. We talk risk-reducing surgeries, screening intervals, and the debate that continues, especially as it pertains to the different genes within Lynch Syndome. We also discuss the cancer registry system in Finland which has been around since the 50s and the lynch syndrome registry which has also been around for over 40 years. Close to 400 families are in the registry now. /episode/index/show/aliveandkickn/id/28257368

AliveAndKickn Podcast - Erin House 09/25/2023

AliveAndKickn Podcast - Erin House I sit down with Erin House, Lynch Syndrome survivor with a great story, including her running in the NYC marathon on behalf of AliveAndKickn. Erin, originally from Australia, has an interesting story of genetics and international implications. Takeaway is to be your own best advocate and follow your instincts. The Erin House gene is now considered pathogenic in the States as well as in Australia. Erin is setting up a betting pool for her finishing time, so place your bets now on Erin's fundraising page on AliveAndKickn. I will make sure not to bring Fosters beer for her finish. We both agree that pumpkin does not belong in beer or coffee, but pumpkin is great otherwise. /episode/index/show/aliveandkickn/id/28135253

AliveAndKickn Podcast - Rachelle Manookian 09/04/2023

AliveAndKickn Podcast - Rachelle Manookian I sit down with Rachelle Manookian, Genetic Counselor at Children's Hospital of LA. We discuss the transition from adult oncology at City of Hope to pediatrics, and the nuances it entails. Rachelle and I originally met when she was a student at Mount Sinai in New York, and she's running the NYC marathon for AliveAndKickn, giving her an excuse to get back to the City. Link to Rachelle's marathon fundraising page is at . We caught up on the good old days at Mount Sinai, as well as some NYC food digression. Hopefully I had my Los Angeles soccer history close to being correct. Fact check me. /episode/index/show/aliveandkickn/id/27935895

AliveAndKickn Podcast - Dr Jose Perea Garcia 08/31/2023

AliveAndKickn Podcast - Dr Jose Perea Garcia I talk with Dr Jose Perea Garcia, Digestive Surgeon as well as cancer researcher in Madrid. We talk about how surgery has evolved and management of the Lynch Syndrome patient compared to sporadic cases. We compare some protocols and coverage in the US vs elsewhere such as Spain where there is government run. Urban vs rural is an issue everywhere. I convince Dr Garcia to offer me a ticket to an Atletico Madrid game if I get there, including if they play Real Madrid. /episode/index/show/aliveandkickn/id/27902940

AliveAndKickn Podcast - Dr. Tiago Biachi 08/10/2023

AliveAndKickn Podcast - Dr. Tiago Biachi I sit down with Dr Tiago Biachi, Medical Oncologist at Moffitt Cancer Center, as we discuss Lynch Syndrome, GI cancers, MSI, immunotherapy and of course soccer including the women's world cup, the pickup game at ASCO which I was not invited to, and more. /episode/index/show/aliveandkickn/id/27712389

AliveAndKickn Podcast - Dr William Karnes 07/11/2023

AliveAndKickn Podcast - Dr William Karnes I sit down with Dr William Karnes, Gastroenterologist and Director of High Risk and Colonoscopy Quality at the Digestive Health Institute at UC Irvine Health, as we discuss his accomplishments, including the launch of DocBot. We discuss quality measure indicators and what can and/or should be built into the automation. DocBot, now as part of Satisfai health is about to launch a multi-center study in four different countries. /episode/index/show/aliveandkickn/id/27434703

AliveAndKickn Podcast - Dr Harsha Vyas 06/01/2023

AliveAndKickn Podcast - Dr Harsha Vyas I talk community oncology with Dr Harsha Vyas, Oncologist at Cancer Center of Middle Georgia. Dr Vyas is also Advocacy Chair for the Community Oncology Alliance (COA). Belk, Kroger, and WalMart are the centers of the area, so people will come to Dr Vyas and make a day of it while there. Truly appreciate Dr Vyas' perspective on what he sees, as well as his own "why" for becoming an oncologist. It's important to have the family involved if possible to ensure a higher success rate, which is the art of oncology and medicine overall. COA's goal is to educate on what is happening in the community oncology space, to patients, lawmakers and more. /episode/index/show/aliveandkickn/id/27016041

AliveAndKickn Podcast - Brian Kelly 05/26/2023

AliveAndKickn Podcast - Brian Kelly I had a conversation with Brian Kelly, life sciences and diagnostics professional. Brian's career is expansive but working with pharma on advanced diagnostics has been his passion for the last dozen years. Precision therapy is not a simple triangle. A lot of parties are involved. Molecular classification of disease has evolved. MSI, BRAF, KRAS has crossed the silicon valley chasm from early adoptors to main street. The FDA and the other global approval bodies deserve a lot of credit for upping their game in the approval process, especially over the last decade. There's still a lot to be done to educate and inform, and Brian is someone who has seen it firsthand with his wife who had early colorectal cancer, who does not have Lynch but is MSI High, and thankfully is doing well. The ecosystem still matters, and we need to continue to strive for better. /episode/index/show/aliveandkickn/id/26957424

AliveandKick'n the podcast

TOPICS