Wishes Fulfilled, and a Legacy
A few months ago I posted about entering hospice and received many precious notes from well-wishers across the world. Your kind words mean so much to me that I’ve placed them in a document to look at whenever I need a lift! Words indeed support the healing process, and I am very grateful for being a recipient of so many caring thoughts!
I’d entered hospice at the end of March at 77 pounds, at which point I was physically and mentally drained and ready for end-of-life, but still hoping to reach my 70th birthday at the end of July. Almost miraculously I began gaining weight and feeling better, and was granted a fabulous birthday filled with loving texts, calls, and a memorable visit with friends!
Since then I’ve begun to fade a bit with decreased appetite and increased GI issues. My hospice team is stellar and are doing everything they can to reassure me that if I start having considerable pain or discomfort, it will be well-managed.
Towards the end of one’s life it’s natural to reflect upon one’s legacy. My husband and I have managed to raise a wonderful parrot and enjoyed 48 years of marriage together! Yet beyond that, I hope that my book “The Insider’s Guide to Metastatic Breast Cancer” has helped patients and caregivers navigate the disease and its treatments, and that the Patient-Centered Dosing Initiative’s (PCDI’s) efforts have paved the way for rendering oncology drugs more tolerable.
Below is an email I’d forwarded to individuals with MBC who participated in the PCDI’s 2020 survey who’d asked to remain informed about our progress. Knowing that the PCDI’s work has precipitated change regarding quality of life and how future drug doses will be selected brings me immense happiness, and is perhaps the most precious legacy of all!
Wishing you the best possible health and much happiness!
With heartfelt gratitude,
Three years ago, you and 1,220 others helped to transform the decades-old “more is better” paradigm for treating oncology patients by participating in the Patient-Centered Dosing Initiative’s (PCDI’s) MBC Patient Survey. The survey aimed to discover the prevalence and severity of patients’ treatment-related side effects and whether patients with side effects felt better after their dose was reduced. We learned that 86% of participants suffered at least one bad treatment-related side effect, and of these 20% visited the ER/hospital, 43% had to miss at least one treatment, and 83% of patients given a dose reduction felt relief on the lower dose.
The PCDI subsequently delivered these results in an oral presentation at the American Society of Clinical Oncology’s (ASCO’s) 2021 worldwide meeting. Five months thereafter, the FDA declared, “It’s loud and clear from our patients that the drugs are too toxic: patients deserve a more tolerable dose.”
Since then, the FDA has issued guidance for pharmaceutical companies to move away from the “Maximum Tolerated Dose/More Is Better” paradigm in Phase 1 clinical trials in favor of identifying doses that are more tolerable and still effective. This outcome of this initiative, called “Project Optimus,” will be that future patients will have access to oncology drugs that are appreciably less toxic.
The FDA has also begun reviewing dosages of approved cancer therapies that are currently taken by patients in the clinic. This endeavor, called “Project Renewal,” recently updated the dosage label for the oral chemotherapy drug capecitabine (Xeloda) to make it more tolerable, and there will likely be more to come!
In 2021, the PCDI launched a survey for medical oncologists with experience treating individuals with MBC. Of the 119 respondents, 85% claimed not to believe that a higher dose is always more effective than a lower dose, and 97% would be willing to discuss flexible drug dosing options with their patients. The PCDI was privileged to present these survey results in a Poster at the San Antonio Breast Cancer Symposium (SABCS) in 2021 and publish them in the peer-reviewed journal, “Breast Cancer Research and Treatment.”
Because patients occasionally have difficulty informing their doctors about side effects, the PCDI created a flyer to help them raise this topic with their health care team, and we are currently developing a companion flyer for health care professionals.
The PCDI’s accomplishments have come to the attention of multiple organizations in the US and internationally! The PCDI has recently been integrated as a project of the Metastatic Breast Cancer Alliance (MBCA), and on Thurs. Aug. 24 at 4PM ET we will be delivering a presentation to advocates across the world about “Finding the Right Dose” for which you are welcome to register here.
Regretfully, this will be the final update you will receive from me about the PCDI’s work, as I am currently in hospice. That said, the PCDI’s efforts will continue, and we are grateful that with your help and support we have been able to initiate change for the better for oncology patients!