Sarcoma Sisters

SARC (Sarcoma Alliance for Research through Collaboration) is a non-profit organization dedicated to the development and support of research for the prevention, treatment, and cure of sarcomas – a cancer of the bone and connective tissue of the body. Dr. Kopp and Dr. Allen-Rhoades join Dr. Scott Okuno, SARCs Chief Medical Officer, for a conversation about the history of the Sarcoma Sisters and how they are hoping to help patients and loved ones navigate their sarcoma diagnosis through their podcast.

Dr. George is a medical oncologist and Associate Professor at Harvard Medical School. She is the Clinical Director at the Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Institute with over 20 years experience of treating patients throughout the world with sarcoma. She is actively involved in the clinical research and works to develop new clinical trials focusing on therapy for metastatic soft tissue sarcoma. In this episode we discuss: What led her into medicine, and what led her into taking care of patients with sarcoma - it included one of the first targeted therapies for a sarcoma subtype, GIST (Gastrointestinal Solid Tumor) What is Leiomyosarcoma including how is it treated, and challenges to the current treatment paradigm What is the Count Me In (CMI) Leiomyosarcoma (LMS) Project What the hope is to learn from CMI LMS How the CMI LMS project helps current and future people living with LMS What does Dr. George see as the next big thing for treating LMS   Here is the Link to the Count Me In Leiomyosarcoma Project music: Rosepigg photo:  nine koepfer 

Kate Ueland, MS ,RD, CSO is an Assistant Professor at Bayster University where she teaches and mentors students and she practices as a dietitian at Seattle Cancer Care Alliance in Seattle, WA. Kate also works at Fred Hutchinson Research Center in Seattle, WA as the nutrition advisor and editor for the Cook for Your Life website providing science-based guidelines, recipes, and tips to those who have been touched by cancer. The Fred Hutch Cook For Your Life website is such an amazing resource that everyone needs to check out no matter where you are in your cancer journey! We learn from Kate what led her into nutrition and oncology. In this episode we touch on a many nutritional oncology topics: Food as medicine Foods to focus on: plant based and increasing fiber Weight stability versus focusing on a number on the scale Food during treatment versus survivorship  Adding evidence to the hot topics of: Avoiding sugar Ketogenic diet Food deserts Establishing healthy relationships with food   Fred Hutch Cook For Your Life Photo credit: Anna Pelzer Music: RosePigg

Dr. Dan Steventon is a Doctor of Physical Therapy and practices at The Sanford Children's Castle of Care Hospital in Sioux Falls, South Dakota. He specializes in pediatric cancer physical therapy. However, outside of the amazing care he gives his patients, he has a robust social media educational platform and is known as PT Dan The Kids Cancer PT! We encourage you to check him out on twitter And his You Tube Channel including his special series on rotationplasty for Sarcoma Awareness Month! We discuss: His journey to specializing in Physical Therapy and pediatric cancer PT Dan's goals for kids with cancer: Restore, Rebuild, and Reclaim your world Physical therapy needs for patients with sarcoma PT Dan and his push up contest with his patient to raise money and awareness Does every child with cancer need a Physical Therapy evaluation? Why is Physical Therapy needed? Why is tailoring a physical therapy plan to each child so critical? How PT Dan motivates patients during their toughest time in their cancer journey The importance of perspective surveillance in physical therapy  Managing amputations and limb salvage through physical therapy How physical therapy helps with pain including neuropathic pain PT Dan's research helping children who are non-verbal or too young to describe their pain  The importance of a team effort in cancer care PT Dan on social media   Music: Rosepigg Photo: Raspopva Marina 

Dr. R. Lor Randall is an Orthopedic Oncologic surgeon who is a world renowned expert in sarcoma orthopedic surgery. He is the David Linn Endowed Chair for Orthopaedic Surgery; Chair, Department of Orthopaedic Surgery and Professor, Department of Orthopaedic Surgery at the University of California, Davis in Sacramento. Dr. Randall's clinical practice and research focus on musculoskeletal surgical oncology and on building-leading edge trans-disciplinary teams to combat rare cancers of connective tissue in children and adults. In this episode we discuss: What led him into Orthopedic Oncologic surgery His translational and health inequity research including his passion for improving quality of life for adolescents and young adults with cancer Questions patients and/or parents should ask their oncology team including their orthopedic surgeon Challenges when parents and children disagree on surgical options (limb salvage versus rotationplasty)   Scar tissue is like cooked bacon His research review of radiation and surgery in Ewing sarcoma Advances in orthopedic oncology targeted therapies and considerations in orthopedic surgery As promised in the interview:  Dr. Randall's Twitter YouTube Video with our upcoming guest PT Dan discussing rotationplasty with his former patient Shanna - it is a 4 part series - so great! Shanna is the founder of a wonderful NGO Childhood Cancer Community TikTok channel of Jessica Emily Quinn - an amazing AYA with 842K followers who posts hundreds of videos highlighting her rotationplasty and answers questions

Dr. Janeway is a pediatric oncologist and senior physician at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. She is the Director of Clinical Genomics at Dana-Farber Cancer Institute and her research is focused on genomics, precision oncology and bone sarcomas. She leads clinical trials in osteosarcoma and Ewing sarcoma both as an independent investigator and as the Chair of the Children's Oncology Group (COG) Bone Tumor Committee. In this episode we discuss: What led her into medicine, pediatric oncology and sarcoma research How do we begin to define precision medicine in Osteosarcoma - start with defining subtypes  Ways that Dr. Janeway is spearheading defining the osteosarcoma subtypes through genomic and clinical data collection How patients and advocacy groups are leading the way in research efforts and information on Count Me In Osteosarcoma Project Two Phase 3 clinical trials Dr. Janeway is working on and how they will be moving the needle in making progress in Osteosarcoma in a variety of areas (genomics, quality of life, and surgical resection) music Rosepigg photo Eric Prouzet

Dr. Aaron Weiss is a board certified pediatric hematologist/oncologist practicing in Maine. He is an associate professor and the Division Director of Pediatric Hematology-Oncology at Tufts University School of Medicine and he holds the Sam L Cohen Medical Director Endowed Chair at Maine Children's Cancer Program. As part of Children's Oncology Group he is the Vice-Chair of the Soft Tissue Sarcoma Committee, and the Associate Vice-Chair of the Clinical Trials, AYA Oncology Discipline Committee. He is an expert in Desmoid tumors and he is the chair of the Desmoid Tumor Research Foundation Medical Advisory Board. In this episode we discuss: - What led Dr. Weiss into his expertise of soft tissue sarcomas and specifically Desmoid tumors - Is a Desmoid tumor and cancer and why does the cancer classification matter? - Where do Desmoid tumors occur and the profound affect on quality of life for patients - Should the clinical trial endpoints for Desmoid tumors change? - All areas of Desmoid tumor treatment including: - Localized treatment such as high intensity ultrasound - Systemic treatment from chemotherapy to targeted therapies - The importance of active surveillance as a treatment option - Why some treatments have fallen out of favor and what is on the horizon music: Rospigg photo: Felix-Mittermeier

Dr. Allen-Rhoades and Dr. Kopp discuss the results of the recently published Ewing Sarcoma clinical trial - Phase III Trial Adding Vincristine-Topotecan-Cyclophosphamide to the Initial Treatment of Patients With Nonmetastatic Ewing Sarcoma: A Children's Oncology Group Report. We mention in the episode that the full article is accessible, however, it is only if you purchase individually - bummer. However, the link Is here for the article abstract and if you would like to purchase. We discuss the clinical trial in detail including background on previous trials, methods, results and how these results affect current and future treatment of patients with Ewing sarcoma. Thank you for listening and please let us know your thoughts!  

Dr. Ishwaria Subbiah is a palliative care physician and medical oncologist in the Division of Cancer Medicine at MD Anderson Cancer Center in Houston, TX. She is uniquely qualified for this role, having completed training at MD Anderson, not only in medical oncology but also in Phase 1 drug development and Palliative Medicine. With all this training she sees patients in the palliative care clinic and also conducts clinical research that focuses on symptom management and patient centered supportive care that is driven by patient-reported outcomes (PROs) with an emphasis on older adult participation on clinical trials. She also works on developing palliative care initiatives and PROs on the national and international level. You can find Dr. Subbiah on social media including twitter where she is very active.   In this episode we discuss defining palliative care what interested Dr. Subbiah in palliative care the difference between palliative care and hospice care benefits of palliative care why palliative care is critical to cancer care breadth of palliative care team caregiver experience the future of palliative care   Image credit National Cancer Institute Music Rospigg

Dr. Wilky  is the Director of Sarcoma Medical Oncology at the University of Colorado. She cares for patients over the age of 18 with every type of sarcoma and is an expert not only in traditional chemotherapy treatments for sarcomas, but also at using modern technology such as gene sequencing and molecular profiling to identify out-of-the-box treatments particularly in targeted therapy.  Dr. Wilky is also a translational researcher who conducts and designs clinical trials for sarcoma patients, with a focus on early immunotherapy protocols.  Her laboratory studies the interaction between sarcomas and the immune system. Additionally, Dr. Wilky leads the investigator-initiated clinical trials committee at the University of Colorado Cancer Center, helping other researchers bring laboratory science discoveries into human clinical trials You can get so much great information about sarcoma and treatments by following Dr. Wilky on social media on Twitter or on her blog In this episode we discuss: How are clinical trials used in medicine The hope of clinical trials Phase 1 clinical trials Phase 2 and 3 clinical trials  Learning from all patients enrolled on clinical trials Big data and sarcoma Immunotherapy and sarcoma Compassionate use and right to try What are the most important questions you should ask your doctor when considering a clinical trial  music: Rospigg photo credit: volodymyr-hrysh

Dr. Allen-Rhoades and Dr. Kopp discuss the topic of second opinions for your sarcoma.  Discussing common questions and concerns of second opinions: Tips on deciding if you need/want one Types  Issues with too many Unnecessary concerns - you're not cheating on your oncologist why it is important to discuss with your oncologist Tips to getting the most out of it How the pandemic has made them more accessible  music: Rospigg photo: Markus Winkler

We talk with Dr. Safia Ahmed a radiation oncologist who specializes in caring for adults and children with sarcoma - she works with our sister Wendy at the Mayo Clinic! Dr. Ahmed is a Senior Associate Consultant in the Department of Radiation Oncology at the Mayo Clinic in Rochester, Minnesota. And she is an Assistant Professor of Radiation Oncology - Mayo Clinic College of Medicine and Science. She has giving numerous lectures and research presentations on a variety of radiation and sarcoma topics including late effects. In this episode Dr. Ahmed breaks down all things in radiation! How does it work? What are the different types of radiation and how do they compare? What are the side effects are radiation? What is the maximum dose of radiation? And so much more!!   music: Rospigg photo: NCI

Dr. Fitzhugh is an associate professor and interim chair of the Department of Pathology, Immunology and Laboratory Medicine at Rutgers New Jersey Medical School and the Department of Pathology and Laboratory Medicine at Rutgers Robert Wood Johnson Medical School. She is an expert in the pathology of sarcomas. Dr. Fitzhugh also has interests in the recruitment, retention, and promotion of Black and other underrepresented groups in medicine to pathology as well as racial disparities in treating patients. Dr. Fitzhugh is a celebrity pathologist and has >21,000 followers on Twitter - find her at @DrFNA. And check out her article: Through My Eyes: The experience of a Black woman in pathology In this episode we talk about all things sarcoma pathology and also Dr. Fitzhugh's unique experience as a Black woman pathologist and her platform #blacklivesmatter   We discuss: 5:30 what does a pathologist do?   12:30 why pathology diagnosis takes time and the steps pathologists take to determine sarcoma type   14:00 why second opinions are needed   16:30 The variety of sarcoma tumors    18:00 why it is so important to get the diagnosis right    19:00 pathologists have big hearts   22:18 : breaking down IHC/working up a tumor   25:30 growing and karyotyping tumors and genomics   30:00 FISH breakdown   33:15 why is tissue an issue?   34:45  Sarcoma is a team sport and including families    38:15 how is pathology changing with new technology    43:00 Dr. Fitzhugh platform - women of color in medicine    44:00 Convincing minority children pathology is where they want to be - letting future generations know the role of a pathologist   46:30 meaningful impact of having black role models in pathology    49:45 Dr. Fitzhugh finding her voice   50:25 Trolls on Twitter and assigning value to black people   54:00 Bubba Watson update   music: Rospigg photo: CDC

We talk with our sarcoma brother and world-renowned sarcoma genomics scientist and pediatric oncologist Dr. Brian Crompton. Dr. Crompton is an Assistant Professor at Harvard Medical School and an Attending Physician of Pediatric Hematology/Oncology at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. He is the Principle Investigator of the Crompton Lab where he and his team are harnessing novel genomic and proteomic approaches to improve patient outcomes in pediatric solid tumors. They leverage innovative technologies to determine prognostic biomarkers and validate druggable targets in Ewing's Sarcoma and Osteosarcoma. In this episode Dr. Crompton breaks down the current state of genomics and personalized medicine and the future for us. We talk about all the things: genomics, liquid biopsies, ct-DNA, etc. To read more about Dr. Crompton's laboratory and/or donate to his amazing research click here.

We talk with Dr. Andrea Hayes-Jordan a world renowned pediatric sarcoma surgeon and a professor of pediatric surgery and surgical oncology at the University of North Carolina Children’s Hospital.   Dr. Hayes-Jordan is the Surgeon-in-Chief of the UNC Children’s hospital and the division chief of pediatric surgery at UNC. If you want to know how a world class surgeon thinks this is the episode - take this episode in - Dr. Hayes-Jordan is amazing! Learn: 9:20 - How she prepares when she has a new patient - specific considerations when talking with her patient and their families 15:15 - Explaining positive margins 36:40 - How she knows what a tumor looks like when operating 45:00 - Prepping physically and mentally for 12+ hour surgeries  51:20 - The 3 most important questions you should ask the surgeon removing your or your child's tumor watch the podcast video: Episode 7 - Dr. Hayes-Jordan  Music: Rospigg

We talk to the amazing Dr. Corrie Painter  Dr. Painter is the Associate Director of Operations and Scientific Outreach for the Broad Cancer Program and the Associate Director of Count Me In. Corrie shares with us her own Angiosarcoma story and how her diagnosis ultimately led her to her current position at the Broad Institute where she is leading the charge on the Count Me In patient driven projects that are pioneering how cancer research is done and making impacts on finding cures in rare and metastatic cancers.   The Count Me In projects include the following cancer types: Metastatic Breast Angiosarcoma Metastatic Prostate  Stomach and Esophageal  Brain Cancer - any type  Osteosarcoma  All tumors types Open to all people in the US and Canada. If you or someone you know is interested in joining click this link: Count Me In       Breakdown of specific topics:  5:00 - description of Angiosarcoma  6:00 - length of time to Corrie's diagnosis with sarcoma  7:30 - sarcoma treatment  12:00 - journey of Corrie's cancer treatment:Yellow brick road laid out in front of you on your way to Oz - With Angiosarcoma - We didn’t even have bricks - we didn't even know what bricks were 15:30 - connecting to work together to build that road 22:30 -  Broad Institute and Count Me In: beginning with metastatic breast cancer 28:00 - Building and some results from the Angiosarcoma Count Me In project  38:00 - what is count me in - how does it work to take part? 40:00 - key is building with patients involved 50:00 - the power of people giving their history directly to scientists for research 52:00 - the closure/space available for loves ones 54:00 - the power of loved ones - making a difference in angio sarcoma 57:00 angiosarcoma turtle mascot - slow and study - we will get there and win the race   Music: Rospigg Artwork: Randall Ruiz

Lisa is joined by Donna Bell in episode 5: Fertility 101. Donna Bell is a Nurse Practitioner at MD Anderson Cancer Center and an expert in onco-fertility. She cares for pediatric, adolescent and young adult patients in the pediatric leukemia/lymphoma division and she helped to start and leads the onco-fertility consultation service.   We dive deeper into the meaning of the fertility terminology used and: Why the initial conversation matters Burden parents of patients with sarcoma carry Information overload and squeezing in the fertility conversation All you need is one good man – this is true for marines and sperm Why yearly fertility follow up is so important And so much more!!!

We are joined by Dr. Abha Gupta in episode 4: Sarcoma and Fertility. Dr. Gupta is a sarcoma and onco-fertility expert. We discuss female and male fertility and: Do you even want to be a parent? And if yes – is it important if your future baby is related to you? What’s the rush – why fertility question needs to be asked when someone is first diagnosed with cancer and is there a rush? Balloons/marbles = ovaries/eggs Push and pull of AYAs (adolescents and young adults) and their parents Changing your mind – loss and regret   And so much more! Music: Rospigg Artwork: Tucker Good

Hanneke and Jim share with us their families' sarcoma story beginning when their daughter was diagnosed with Osteosarcoma at 7 years old. This episode is relatable to all people and families with sarcoma, including advice for what to tell well intentioned people who give unsolicited advice: "Just stand in my puddle with me. That's all I need right now. It's raining everywhere. Don't try to give me an umbrella, don't try to give me rain boots, just stand with me where I am" Music: Rospigg Artwork: Nick Nice

In this short episode we continue the conversation with Hanneke and Jim. They share with us their experience in survivorship land with their daughter who completed therapy for Osteosarcoma 4 years ago. Music: Rospigg Artwork: Jonathan Borba

Our first episode letting you know our why for starting a podcast about sarcoma.