Talk IBC

Dr. Bora Lim and Josh Newby discussing their work in inflammatory breast cancer research, the challenges of securing funding for rare diseases, and the importance of patient involvement in academic centers. They also discuss the evolution of breast cancer treatment and research, the need for seed funding for rare diseases, and the importance of collaboration and adaptability in advancing cancer research and care.

Terry Arnold and Rachel Ford discuss Rachel being diagnosed at age 37 with inflammatory breast cancer, and not getting the standard of care treatment.

John's daughter was misdiagnosed, then eventually diagnosed with inflammatory breast cancer. He has since wrote a guest bill called Marnie's Law for Legislature in Massachusetts which is now before the 194th Congress. The law states that inflammatory breast cancer shall become a part of the education component for all undergraduate nursing programs in the Commonwealth of Massachusetts.

Christine is an IBC sister who brought this approach of understanding the benefits of lymphatic massage to our attention. Chelsey Jean is a sports therapist, naturopathic practitioner, free thinker and creator of the Advanced Natural Health Clinic and the Chelsey Jean label.

Terry speaks with Dr. Daniel Stover, an Associate Professor of Internal Medicine in the Division of Medical Oncology and Department of Biomedical Informatics at Ohio State University Comprehensive Cancer Center.  They discuss new research and the processes for inflammatory breast cancer. 

In this episode, Dr. Kelsey Corrigan, who works in the lab with Dr. Wendy Woodward at  MD Anderson in Houston, TX, discusses how they are recruiting metastatic inflammatory breast cancer patients or survivors and their caregivers to complete a brief 5-minute survey assessing patient and caregiver perception of the disease and treatment options as well as preferences regarding treatment options.

Dr. Wendy Woodward is the Executive Director of the MD Anderson Cancer Center Inflammatory Breast Cancer Clinic and Program. Here she discusses inflammatory breast cancer and the need for dedicated centers and networking with other specialty centers.

In this episode of TalkIBC we are discussing lymphedema with certified specialist Dr. Marc Miller.

Ivy was diagnosed as Stage 3B IBC in November 2021. After 5 months of Doxorubicin+AC and Taksol, Double Mastectomy (have gene mutation called PALB2), and 30 radiation sessions, she is NED since August 2022. Professionally, Ivy is a chemist providing consulting in the chemistry and biology field to the U.S. Government. She lives in Maryland with her husband and 7 year old twin girls. 

Description of Discussion

SISU- A Finnish concept of strength of will, determination, perseverance, and acting rationally in the face of adversity. Sisu is not momentary courage, but the ability to sustain that courage. 

How has Robin applied sisu through the course of her IBC treatment from 2016 to recent developments of brain metastatic activity and stepping into whole brain radiation while still living with inflammatory breast cancer with quality of life and hope. 

Bio

Meet Robin Matrai, from Calgary, Alberta Canada, whose YES attitude may inspire you, cause you to scratch your head or call you to action. Her perspective of living a life with joy, grit and sisu, despite a double diagnosis of Lupus (1996) and Metastatic Inflammatory Breast Cancer (2016) has not stopped her from successfully parenting, operating her own company, painting, travelling, mentoring, speaking, writing, competing in fitness competitions and so much more.