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