AliveandKick'n the podcast

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.  

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.  

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 affec...

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.    

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...

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 50...

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 changi...

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.  

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 teac...

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 repa...

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...

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 Signif...

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 gett...

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 Color...

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. ...

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.   

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.  

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 Livi...

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...

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 fat...