The Patient Perspective

After exploring the science of chemotherapy-induced peripheral neuropathy (CIPN) throughout this podcast series, the final episode brings listeners the perspective that matters most—that of someone living with the condition every day.

Professor Susanna Park and Dr. Paola Alberti speak with retired physical therapist Jayne Schak, who developed severe CIPN following treatment for breast cancer. Although cancer-free since 2022, Jayne continues to experience debilitating neuropathic pain that has reshaped her daily life. She shares her personal journey navigating the healthcare system, finding support through the Foundation for Peripheral Neuropathy, and becoming a passionate advocate for patients living with peripheral neuropathy.

The Foundation for Peripheral Neuropathy (FPN)

The Foundation for Peripheral Neuropathy is the leading nonprofit organization dedicated to improving the lives of individuals affected by peripheral neuropathy through awareness, research, advocacy, and education. By connecting patients, caregivers, clinicians, and scientists, FPN advances awareness of peripheral neuropathy and supports access to reliable information and resources. In addition, FPN funds innovative research aimed at better understanding the causes of neuropathy and developing more effective treatments and preventive strategies. The Goal of the Foundation for Peripheral Neuropathy is to one day cure this devastating condition.

Research is essential to addressing chemotherapy-induced peripheral neuropathy (CIPN), one of the most common and debilitating side effects of cancer treatment. Despite its significant impact on quality of life and cancer survivorship, there are currently limited options to prevent or effectively treat CIPN. Research priorities include: (1) identifying the biological mechanisms underlying nerve injury; (2) discovering biomarkers to predict individual risk; (3) developing strategies to prevent neuropathy (without compromising cancer treatment efficacy); and (4) advancing targeted therapies that restore nerve function and reduce symptoms. Continued investment in collaborative, patient-centered research is critical to improving outcomes for cancer survivors living with CIPN.

More information available at https://www.foundationforpn.org/

Jayne Schack, person living with CIPN

Jayne Schack, BS, PT, MA, is a 66 year old retired American physical therapist (PT) [or "physio" as they'd say in most other English-speaking countries]. Living most of her adult working life in Massachusetts, she treated geriatric populations in skilled nursing facilities and home environments, amongst other occupations throughout the years.

Moving to Jonesboro, Arkansas in 2019 to be near her sister, Jayne took a brief foray into academia: first as Assistant Professor in the Department of Physical Therapy at Arkansas State University (AState) in Jonesboro from 2019 to 2021, then as a Standardized Patient for the New York Institute of Technology College of Osteopathic Medicine (NYITCOM) on the AState campus.

Jayne was diagnosed with stage 1A breast cancer in late 2021. The good news is, Jayne has been cancer-free (YAY) since her cancer treatment concluded in July 2022. The bad news: she began having progressively worsening CIPN nerve pain symptoms right around the same time. This was the start of her CIPN journey, the focus of this discussion. As part of this journey, Jayne will discuss her role as a Volunteer Ambassador for The Foundation for Peripheral Neuropathy as well as give feedback for CIPN researchers, oncologists, and other treating clinicians from her perspective as both patient and former "hands-on" clinician.

Although no longer able to work, Jayne has resolved to be a useful member of society through: healthcare advocacy and educating; varied volunteer work; and grassroots community activism. To feed her soul, Jayne enjoys exercise; going to plays, museums, concerts, and movies; spending time with family and friends; participating in her spiritual group; and singing in her choir. Jayne says, "I won't let this nerve pain cause me to be a pimple on the backside of life!" She's proud she was recently able to participate in a Concert Tour Trip to Southern Germany with the AState Choirs.