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

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. 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

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