About Us
MBC patients will continue treatment for the remainder of our lives, and we cannot be cured.
We call into question the practice of repeatedly treating Metastatic Breast Cancer patients with the highest possible dosage (Maximum Tolerated Dose, or MTD) that causes the most challenging side effects, especially since MBC patients will repeatedly endure the most toxic dose at the beginning of each new regimen.
We, as MBC Patient Advocates, support the dual therapeutic objective of sustaining our lives while affording us every opportunity to optimize its quality.
We recommend that our physicians fully consult with us when discussing each treatment, consider our unique characteristics (age, race, body mass index, availability and quality of at-home care, history of side effects from prior drugs, CNS metastases, etc.) to jointly identify the best dosage for each for us as a unique individual. The term we've adapted for this initiative is "Patient-Centered Dosing."
We believe that Patient-Centered Dosing (PCD) represents a viable and humane approach to treating MBC patients. Although additional data is warranted, some recent findings have shown that a reduced dosage may be just as effective as the Maximum Tolerated Dose for several drugs.
FDA Action
We are delighted that the FDA is listening to our message! Just months after the PCDI delivered an oral presentation at ASCO 2021 about the results of its MBC Patient Survey in which 86% of 1,221 respondents indicated they had experienced at least one bad treatment-related side effect, the FDA declared, “It’s loud and clear from our patients that the drugs are too toxic… patients deserve a more tolerable dose.”
And the FDA is putting actions to these words. The FDA launched “Project Optimus” to halt the decades-old practice of identifying and leveraging the MTD, and is issuing guidance to pharmaceutical companies to identify two or more doses based on efficacy and tolerability. So the longstanding practice of leveraging the most toxic “tolerable” dose is being terminated.
Furthermore, the FDA has begun scrutinizing existing oncology drugs that were based upon the MTD. To this end, the FDA’s “Project Renewal” initiative is working to ensure that labeling information for older oncology drugs is clinically meaningful and up to date. As a direct result of Project Renewal’s efforts, the labeled starting dose of the oral chemotherapy drug capecitabine (Xeloda) has been adjusted to render it more tolerable.
The PCDI is pleased that the FDA, ASCO, and other organizations that have heard our message are collaborating to ensure that drugs given to individuals with cancer are tolerable as well as effective, thus enabling patients to enjoy a better quality of life!
Patient-Centered Dosing Initiative (PCDI) Enters A New Phase With the Metastatic Breast Cancer Alliance (MBCA)!
In February 2023, the Patient Centered Dosing Initiative was incorporated as a project under the Metastatic Breast Cancer Alliance’s Clinical Care Working Group. The MBCA is a national collective of individual patient advocates, pharmaceutical/biotech companies, and 37 nonprofit organizations united in aspiring to improve the lives of those living with metastatic breast cancer (MBC).
The PCDI’s numerous accomplishments, including a publication in the peer-reviewed journal Breast Cancer Research and Treatment and an ASCO presentation, have been patient-led and patient-focused. We believe our association with the MBCA and its membership will increase our reach and impact. The PCDI’s goal of embedding physician/patient dosage-related discussions into clinical practice will remain at the center of what we do, and we welcome the opportunity to provide presentations to patients, oncologists, industry, and payers - both independently and through the MBCA.
Potential future PCDI/MBCA initiatives include delivering presentations to the MBCA’s industry members, presenting PCDI-related information to patients with MBC as well as to those with other types of cancer (which the PCDI has already begun to do with LUNGevity and the ACE Collaborative), and reaching out to international organizations and other collaborating partners of the MBCA.
The PCDI is eager to develop this collaborative relationship and further improve the quality of life for people living with MBC.
Meet the Team
Anne Loeser • PCDI Founder
1953 - 2023
Anne Loeser, the founder and driving force of the Patient-Centered Dosing Initiative, passed away on October 10, 2023, from complications of metastatic breast cancer (MBC) and GI issues. Read more about Anne’s life & contributions here.
Julia Maues
Julia Maues was diagnosed with breast cancer in 2013 while pregnant. Following the birth of a healthy baby boy, Julia did tests she couldn’t do while pregnant and discovered the cancer had already spread to her brain, liver, and bones. After multiple treatment setbacks, her cancer began to respond to targeted drugs and radiation. Although cancer is part of Julia’s life, it doesn’t define her. She has made it her life’s work to make an impact in the lives of others living with cancer, focusing on disparities and inequities in breast cancer outcomes in underserved groups such as those living with breast cancer brain mets. In 2019, Julia collaborated with Dr. Nancy Lin of Dana Farber Cancer Center on a webinar put on by SHARE about the latest treatments for brain mets, patient stories and the message of hope for those living with this diagnosis. Julia strongly believes that when cancer researchers listen to and collaborate with patients, more breakthroughs can be achieved. Together with her ‘breastie’ Christine Hodgdon, Julia co-founded GRASP (Guiding Researchers and Advocates to Scientific Partnerships), a program connecting researchers and patient advocates, and elevating patients as a critical voice in the research process as the experts in living with cancer. She is a member of Living Beyond Breast Cancer’s (LBBC) Hear My Voice program, the Metastatic Breast Cancer Alliance, a Komen Advocate In Science, an Alamo Foundation SABCS scholar, a DoD Congressionally Directed Breast Cancer Research Program reviewer, an ASCO guidelines panelist and a founding member of the #InclusionPledge to end disparities in breast cancer for Black women.
Sheila McGlown
Sheila M. McGlown’s incredible life’s journey portrays a strong-willed and passionate woman who has overcome adversity to emerge victorious in her fight with breast cancer. She is a pioneering breast cancer advocate with a focus on the African American community. A metastatic breast cancer survivor for 10 years, Sheila seeks to empower and support breast cancer patients and survivors, using her voice to provide a ray of hope.
Janice Cowden
Janice was diagnosed with early stage triple-negative breast cancer in 2011, with a metastatic recurrence of TNBC in mid-2016.
A retired nurse, her passion for research and scientific learning led her into patient advocacy less than one year following her MBC diagnosis. A self-proclaimed lifelong learner, she is continually seeking knowledge about her disease by attending multiple scientific-based breast cancer conferences each year. In addition, Janice has participated in several advocacy training programs including Living Beyond Breast Cancer’s Hear My Voice Outreach program, and NBCC’s Project LEAD. In 2019, she attended the San Antonio Breast Cancer Symposium as a scholarship recipient of the Alamo Breast Cancer Foundation. In 2021, she was accepted into the ASCO – Conquer Cancer’s Research Advocacy Network’s Consumer Grant Reviewer Training Program which will add to her knowledge base for cancer research grant funding.
In her spare time, Janice enjoys reading, swimming, traveling, the beach, being outdoors in the beautiful Florida sunshine, time spent with friends and visiting with her two adult children and three precious grandchildren. Because she has had no evidence of disease since 2016, unlike most with MBC, she is on no systemic treatment which allows her to live life to the fullest. Since her MBC diagnosis in 2016, Janice’s mantra is that she remains realistically hopeful about her future while living with MBC. She openly and willingly shares her breast cancer story to spread hope to others within the metastatic breast cancer community.
Martha Carlson
Martha Carlson was diagnosed with metastatic breast cancer after a lung biopsy in early January 2015. Soon after her diagnosis, Martha started writing about her experience of living with stage IV cancer and being mom to three kids in junior high and high school. She is a contributing Voices writer for Cure and other magazines. She's had advocacy training with Living Beyond Breast Cancer and the National Breast Cancer Coalition. Currently, she volunteers her time with the Metastatic Breast Cancer Alliance, where she's part of a patient-led research team looking for solutions to increase clinical trial participation of Black women and men with metastatic breast cancer. She is also a member of a research team studying patient-doctor communication around biosimilars. She works as a freelance grant and manuscript copy editor and proofreader, following years of work as an editor of consumer publications.