AliveandKick'n the podcast

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.  S...

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 sha...

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 (...

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 sam...

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 scienti...

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.  Cance...

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 tha...

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...

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 abl...

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, an...

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...

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 corre...

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 M...

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, whil...

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 re...

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 Australi...

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...

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...

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.    

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 stud...

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...

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 a...

I talk with Melissa Carr where we talk Lynch Syndrome, meteorology, and how she has dedicated herself to a number of public health initiatives in Wisconsin.  We also talk soccer and the Forward Madison (fla)mingos, her team Wildflowers team participation in the Badger Challenge bike ride/run/walk.  Melissa is also co-founder of Soles United, a collective of orgs that bring inclusivity to the foref...

I sit down with Angela, psychotherapist in the UK and we talk Lynch Syndrome.  Angela went through her cancer journey during Covid, which has its own challenges.  We talk about coping with the mental and emotional strain and putting things into place after a medical trauma.  We talk toxic positivity and embracing that it's difficult and you're allowed to be human in this space.  You'll have to lis...

I talk with Dr Marilena Mela and discuss her scientific evolution to where she is now.  Thankfully Dr Mela was exposed to Lynch Syndrome so much that she has focused on molecular genetics.  Dr Mela is PhD trained and is taking her board exams in August.  We also talk about her role at the New York Genome Center, and her role as a Junior Board Member at the Cancer Genomics Consortium.  We talk MSI...