Patients Helping Patients Blog
Clinical Trials – Patients ARE the Pioneers
Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Auroro, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.
“The pioneering spirit is less about thinking up new ideas as ridding ourselves of dogma and old habits that hold us captive in thinking.” Bertrand Piccard http://bertrandpiccard.com/home
Profound. Who wants to be captive in their thinking? No one I can name. Especially in the world of healthcare. Medical sciences are far surpassing dogma in many aspects of delivering care to patients – in technology, in documentation, in processes and structure, in diagnostics, in pharmaceuticals and other interventions such as surgical techniques all the way to preventative care. Some diseases have been eradicated entirely, others are manageable and have become chronic rather than life threatening.
It is invigorating to have even a small part in innovations with the potential to alter and improve the landscape of health and well-being. In last week’s broadcast of Mythbuster’s #3 – Do Patients Have a Voice While Participating in Clinical Trials? Our host, Andrew Schorr brought up the notion of being perceived as a pioneer in cancer treatment with each of our respective roles in clinical trials. Our panel was comprised of an oncologist and a clinical trial navigator (a resource who pairs patients to relevant trials)and myself, a patient advocate and participant in multiple clinical trials.
One trial in which I participated led to the provisional release of a therapy added to front line treatment for Ovarian, Fallopian Tube and Primary Peritoneal Cancer who test positive for either the BRCA 1 or 2 inherited genetic mutations. Addition of the oral medication researched has since shown astounding results for patients with these forms of cancer that prolongs disease free progression an average of 19.1 months. https://www.lynparza.com/ovarian-cancer-treatment.html
I personally never considered myself a pioneer, but in this context, I suppose it fits. Without patients, researchers and oncologists exhausting every resource to identify what can extend our life or achieve a cure for incurable forms of cancer; how can we validate new inroads to treatment? Regardless of how it is termed, I take great pride in participating in clinical trials to prove efficacy for patients of today and the future. Pioneer. Forerunner. Research Subject. Terms mean less to me than the knowledge that if just one patient considers a clinical trial as a result of seeing our webinar, it is validation enough my involvement matters.
Shortly after the broadcast, I was talking to a new acquaintance at a gathering about the program and my personal experience with various clinical trials. As I detailed my journey for her, she asked a time or two, so “ALL you ever did was take experimental medicines?” Communication breakdown. But yet, I was quite happy she expressed her question in the way she had so I could clarify. My response was swift, “No. In actuality, in only one clinical trial was the medication ‘‘experimental’. Other than one, I was enrolled in only Phase 3 or higher trials where the medications were known to be effective, they just needed more data to understand dosage, frequency and when to use in combination with existing chemotherapy drugs to amplify the power of each.”
Despite being in multiple clinical trials, I have yet to achieve remission and the elusive cure for my form of cancer; yet, I still chime praise for each trial I’ve been enrolled in. I consider each an opportunity a peek into the future of cancer management. While I cannot claim certain things regarding my cancer as a result of clinical trials, each one has earned me quality time with loved ones or has been a bridge to a new treatment option not available to me were it not for the commitment of researchers, oncologists and patients worldwide.
When you view the webinar rebroadcast or in summation, my hope is that you will be receptive to clinical trials as an additional avenue available to you. Beyond our specific topic of whether patients have a voice in clinical trials, in our segment, our message is clearly that patients do retain their voice during a clinical trial. Of equal importance, collectively our outcomes and first hand experiences are an even more powerful voice chiming their merits. In many ways the patient voice is important not just during, but extends long past the time parameters of trials.
Roberta Aberle is a cancer thriver, despite her 2012 diagnosis with an advanced and aggressive type of cancer. Her cancer; primary peritoneal carcinomatosis, is very rare and lethal, giving her an extremely poor prognosis to live longer than 6 mos. Yet, 5 1/2 years later, she is an active advocate for the cause of cancer as a writer and speaker. Her articles have appeared in Conquer and Coping magazines. Her cancer blog: MyLifeline.org/RobertaAberle and social media site, Live With It on Facebook, in which she shares insights on how life looks from the eyes of cancer, has a following of thousands around the globe. Roberta’s writing appeals to not only those facing cancer or caring for a loved one with cancer; her work contains messages relevant about the need to approach each and every day with appreciation and gratitude whether you live within the fearful confines of cancer or not.