By: Sarah DeBord
Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
To call me a proactive patient might be an understatement.
I have now attempted to find a clinical trial twice in the midst of my treatment plan, and each time have walked away with something I’d do differently “the next time.” Long before I knew I’d need to consider a clinical trial, I engaged myself in learning more about them. I wanted to be prepared when the time came and equipped with the knowledge I’d need to make the best decision for me (and my tumors).
I joined clinical trial groups, followed oncologists and researchers on Twitter that were invested in treating my cancer type, watched webinars, attended conferences and kept up with abstracts that came out of major oncology conferences.
I had my finger on the pulse of the research pipeline for my tumor type.
But even when the time came, I found things didn’t go as smoothly as I had expected, and it wasn’t as easy as taking my amassed spreadsheet of available trials and having my pick. It turned out even the proactive patient had much to learn.
1. Educate yourself
The voices of patients are being elevated, and resources are being created to help patients understand and navigate many aspects of their cancer care. This includes understanding the often-misunderstood clinical trial. Patient advocacy groups as well as pharmaceutical companies know that one of the key ways to increase patient enrollment in clinical trials is by educating patients about them. When you make the unknown known with patient-friendly tools, you take the fear and apprehension out of the patient. Patients and caregivers should join clinical trial groups, watch videos on clinical trials and find webinars that explain clinical trials – many of which are taught in such a way that everyone can understand this scientific world.
2. Establish yourself as a patient
During my previous year’s quest for clinical trial, I missed out by days on the last spot of the very trial I was going to that cancer center to enroll in. Mere days! And part of the delay of game was the long wait to establish myself as a patient. This will be the most time-consuming process for anyone who anticipates looking outside of their current healthcare system for a trial. I found that most major cancer centers would not touch me as a patient or answer questions I had about their trials I qualified for without seeing me in person and giving me the once-over. And getting that appointment can take weeks or months.
If you are a metastatic patient who knows that clinical trials are in your future, and you believe you may need to look outside your current health care system to find them, establish yourself as a patient before you find yourself pressed for time and needing trial options sooner than later.
3. Don’t be afraid to pick up the phone
You are the captain of your own ship. The U.S.S. Clinical Trials can confidently set sail under your command and without your oncologist on board. Though it’s always a plus to have them by your side as you navigate the often-stormy waters of clinical trials, you do not need them at the helm to change course, visit different ports or reach out to other cancer centers about possible trials. In fact, expect to do much of this work yourself.
4. Don’t assume lists of clinical trials are up-to-date
Being the proactive patient that I am, I had spreadsheets with long lists of trials that I qualified for on paper. I would sit back and look at these organizational beauties and assume the hardest part would be deciding which one would be the best for me. As I was healthy and stable, I knew I had every right to be particular – like an episode of “The Bachelorette” with a room full of qualified men and I was holding the rose.
Websites that hold lists of clinical trials are populated by real people, and the rate at which trials open, close, and fill up cannot be maintained in real time. Though they are a great jumping-off point to see where there are trials, put more faith in an actual phone call to find out than by information you see on the screen in front of you.
5. Get genomic testing
For the reasons I explained in my article about genomic testing, you should not consider clinical trials without first considering genomic testing. This is simply because of the amount of basket trials and targeted therapies available are increasing by the day.
A great example involves my own tumor type. Two-percent of us have a mutation for which there is a targeted therapy that not only has produced a complete response rate in some patients, but also has zero toxicity. That sounds dreamy, and it’s too dreamy for me as I don’t have this mutation. But what if your tumor was holding onto a secret like that and genomic testing could change the course of your treatment and therefore your life?
For some patients, you may have a champion in your oncologist who gladly teams up with you to find trials available. For others you may find that you are on your own, especially if you choose to look outside of the cancer center where you are treated. Turning your attention to clinical trials can be exhausting, but it’s important to ask around and find the support and resources that are out there to help you tackle this next phase of your treatment.
Clinical trials can feel as if you are jumping off a cliff without knowing how far you’ll have to fall before finally hitting the water. For many of us, we’re already standing on the edge with nothing left to do but jump and hope that we’ll eventually hear the splash. As a metastatic patient, what do I have to lose?
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.