10/14/2021 By Liz Hiles
Cancer research exists to save lives, improve the quality of life for the cancer community, and change healthcare for the better. There is more to cancer research than you think. Those that joined us got to hear the unfiltered stories of what it means to be a cancer research participant. They received tips about how we can make healthcare care more about the cancer community and influence real change.
On September 29th, we were joined by GRYT Health community members who shared the details of their own clinical research experiences. Jennifer Brower (breast cancer survivor), Melanie Croce-Galis (lymphoma survivor), Jeff Guffey (melanoma and thyroid cancer survivor), and Robert Matney (melanoma survivor) shared their personal experiences and answered questions from the audience about their experiences in navigating the clinical research process.
Jen shared her experience of being diagnosed with triple-positive breast cancer at the beginning of the pandemic and traveling from Michigan to Indiana to participate in a clinical trial. She has had over a year of chemotherapy and immunotherapy, 25 rounds of radiation, and a double mastectomy. Later, she ended up testing positive for the ATM gene and decided to participate in a cancer vaccine trial that will likely benefit her sister and daughter. Key advice from Jennifer is that if you are hitting a roadblock with clinical trial information from your doctor, “use Facebook, use social media, use whatever you can.”
Jen also shared that you should use your cancer network to find out information. The clinical trial sites are a great start, but they are not always updated in a timely manner. If you hit a dead-end at a specific institution because someone has moved to a different position or left that institution, check your cancer network to see if anyone else is participating in that study at that institution and they can likely share the correct, current contact information for the person coordinating the study efforts.
“Ask those questions. ‘If I were not in the clinical trial, do you know if I would be given a different course of treatment? How is it going to be different?’,” encouraged Jen after sharing that she found out one trial she was in was requiring her to have a much higher course of radiation treatment than if she were not in a trial. “You can drop out of a study at any time,” she continued as she encouraged people to learn what will be done in the trial and to compare it to what your course of treatment would be without the trial.
Melanie shared her experiences in living with follicular and B-cell lymphomas since 2004 and dealing with her son’s tumor and rare genetic disorder. Her experiences as a long-term patient and a parent led her to learn about the various websites that allow you to search for your own trial information to find something that will work for you and your loved ones.
“You know I’ve been living with this for a long time. And over the years I shared my particular cancer story with lots of people. I kind of learned early on that people really, it sort of helps to talk about it and people really help with giving advice and getting advice,” she shared, encouraging everyone to seek the answers they deserve.
Jeff had the unique experience of being ineligible for a lot of diagnosis-specific trials due to his dual diagnosis. However, he was able to participate in clinical trials regarding mental health and therapeutic practices for oncology patients. In nine years he has had thirteen surgeries, 142 chemo and immunotherapy treatments, twenty direct radiation treatments, and two rounds of radioactive iodine. He is currently receiving a year and a half of targeted therapy.
In the therapeutic study, Jeff did so well that he shared that “even an oncological psychiatrist is now trying to push me to become a part of the study from the other side, to where I’m actually doing some of the health coaching for new participants, so I’m looking into that as well.” A full-circle moment in which the results turned the participant into a patient coach.
Robert has participated in a few studies since 2013 when he was first diagnosed with melanoma. He is currently NED – No Evidence of Disease. The initial findings of the trial he participated in have been published and there will be more to come as the findings are further analyzed. Robert shared how he utilized ClinicalTrials.gov.
Robert warns, “There’s a ton of paperwork. I really alert everyone to just how much labor you have to do, to get into a clinical trial. And it was worth it. I don’t regret it for a second. I just really alert to the fact that not everyone would have that opportunity.” The others echoed the experience. For all the considerations, paperwork, and, sometimes, travel expenses, trials are worth all the challenges and hassles. Remain steady and push through to reap the rewards.
Many on the panel also reminded attendees that sometimes the participation in a clinical trial will not benefit the individual directly, it may benefit future patients and/or family members. They also encouraged attendees to participate in genetics studies for the same reasons. It may be too late for genetics to help you since you have already received a diagnosis, but that doesn’t mean that your loved ones won’t benefit from the information obtained from the results.
As Robert shared, “I just cannot possibly be a more enthusiastic advocate for clinical trials. I think that careful peer reviewed structure. Research in the medical field is why any significant portion of us live, older than 60 ever. And there’s a lot of different ways to leave a legacy, and a clinical trial is one essential way to leave a legacy to add to the aggregation of human knowledge, it’s, it’s a it’s a way of giving back for the finite time we get here and so, you know, we make a personal decision but I just, I cannot overstate how much our support, that at least possibility for participating in clinical trials.”
Dr. Dan Platt, Chief Medical Officer of GRYT Health, joined the discussion for a few moments to discuss the intricacies of how clinical trials are blindly run from the clinical side of things.
Overall, everyone reminded the audience that they should not solely rely on their doctors to find information about clinical trials if they are interested in pursuing that avenue for treatment or other cancer-related issues. They encouraged you to take control of what you want for your treatment plan. Being your own best advocate was definitely one of the strongest messages for the night.
The GRYT Health Team will always encourage and support our community members to learn as much as they can about the treatment options for their conditions, advocate for the best treatment options for their own lives and participate in clinical trials when they are a good fit for them. If you don’t know where to start, let us know and we will guide you through it.
If you’d like to know more about the clinical research experiences of Jen, Melanie, Jeff, and Robert, check out the video from our program in September 2021.
If you have further questions about clinical trials, please contact us directly at firstname.lastname@example.org.