AliveandKick'n the podcast

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 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.  

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).    

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.    

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 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.   

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.    

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.  

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.    

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.