An Interview with Mary Clare, an Experienced Clinical Trial Participant
In August 2020, Megan-Claire Chase, a cancer survivor and patient advocate, interviewed Mary Clare, a cancer survivor, about her experience participating in clinical trials. Mary Clare is a patient advocate and educator who lives in Chicago. She is a two-time AML leukemia survivor, who’s also had two stem cell transplants, and now a big part of her life is helping other cancer and stem cell patients through their journey. Mary Clare explains how she felt empowered by participating in clinical trials, and how they were always very patient-centered. She is proud of making a difference in cancer research.
A recording of the interview can be found on our youtube channel and on our instagram.
Megan-Claire: I’m Megan-Claire, a cancer survivor patient advocate and your host. I’m working with Ancora.ai to help raise awareness of clinical trials as an option for patients who could benefit from them and share their experiences. We are thrilled to have Mary Clare from Chicago to discuss her experience in clinical trials and share her insight as to why she participated in one. Hi Mary Clare, welcome! Why don’t you give us a quick introduction of yourself?
Mary Clare: Hi! I’m in Chicago like you said, and originally from Virginia. I’m a two-time AML leukemia survivor and I’ve had two stem cell transplants. I’m excited to be a patient advocate as well as an educator. My background is in teaching and running educational programs. After cancer, a big part of my life is to help other cancer patients and stem cell patients make their way through this journey.
Megan-Claire: We’re so glad you’re here! What was your knowledge of clinical trials before you participated in one?
Mary Clare: I think my perspective is a little different than many patients. My husband works at the University of Chicago and we have been affiliated with universities throughout his career. Many of the people that I know in my day-to-day life in this community work in medical trials. Just by chit chatting at after-school events or at a potluck at my daughter’s school, I found out so much about that process. I’m also fortunate that my mother-in-law is a nurse and very active within medical advocacy. I understood that clinical trials were how developments, cures, and treatments happen for cancer patients, but my mother-in-law was quick to clue me in on the exact details.
Megan-Claire: How did you hear about your clinical trial?
Mary Clare: So each and every clinical trial I’ve been part of, and I’ve been part of a number of them since my second day diagnosed with cancer, all came from my oncology team. Every possible trial that was available to me was mentioned to me, even the very small ones like one extra dose of a medication or taking a one-day break between chemo treatments. My oncologist being one of the best in the country, as well as a researcher who individually knew the scientists conducting the studies, made it just a no-brainer for me.
Megan-Claire: There are many patients who are hesitant to participate in clinical trials so what made you want to take part in one? Were you broached by your doctor? Or was it something that you both decided to do together? What was your mindset going into it and thinking about it?
“My gut feeling was that this was going to be a really tough fight. I needed to think about my legacy as a human, not only to my family and my community, but to medicine, and if I could help in some way.”
Mary Clare: I think my gut feeling, especially the first time I was diagnosed and was quickly rushed into a hospital for six weeks, was that this was going to be a really tough fight. I needed to think about my legacy as a human, not only to my family and my community, but to medicine, and if I could help in some way. I was really coming to grips with the fact that I might not survive, so that legacy part of it was big. But as far as my doctors talking to me about clinical trials there was zero pressure. I made myself clear pretty early on that I was interested in clinical trials and I knew to ask that question when we were talking about care for AML leukemia and many other cancers. My doctor explained to me how specific the disease was to my body, for instance with my mutations, telling me how with some nuances I could try different things. A lot of them were very slight and small, and didn’t take any additional time, so it was pretty easy.
Megan-Claire: I really love what you said about thinking of it as a legacy and also that everybody is different. I think a key thing with clinical trials is that they make it a little more personalized to your actual body and what is going on with your specific cancer. Can you give us the cliff notes version of what the process was like when you were accepted into the trial, because I think that’s where a lot of patients have concerns?
Mary Clare: The first step would often be my doctor saying we were going to do this particular treatment and that this clinical trial could be done alongside if I was interested. I would ask some basic questions and I would look through a stack of paperwork to understand if it was a stage one, two, or three trial, who was conducting it, and its different components. By saying I was interested the patient coordinator for the study, typically a nurse that worked within trials, came to me and helped me navigate. They may not have always known every single answer I needed but they found out. There was no pressure for me as far as having to sign on the dotted line today and I think that’s ethically what has to happen – it needs to be the patient’s decision. You also need to have as much information as you can. Oftentimes I would get a packet of information and say I want to research this, I want to look more into this, I want to see who these doctors are. Yes I was seeing big names like Stanford or Harvard, but I wanted to know more about whether it was a researcher in their first study or if they had done many things. I was never offered anything that wasn’t a phase three trial so I wasn’t even hesitant. Also I think a lot of people think clinical trials are for when you’re out of options, but for me that was absolutely not the case. The trials that I was part of were add-ons to the standard of care and the personalized care that I was receiving.
Megan-Claire: You already came in with a bit more knowledge than the average patient, so tell me what knowledge you gained from participating in the trial? Was it different from what you thought you were going into?
“For the majority of the trials, the research coordinators would stop by and see me when I was in the hospital or clinic, and I didn’t have to work around their schedule, they worked with me. I definitely felt another level of care, like they were part of my care team.”
Mary Clare: I really wasn’t sure how much of an impact I would have being part of a trial, I wasn’t sure if it was just going to be email questionnaires or someone pulling my blood results. What I was surprised by is that for the majority of the trials, the research coordinators would stop by and see me when I was in the hospital or clinic, and I didn’t have to work around their schedule, they worked with me. I definitely felt another level of care, like they were part of my care team. I’m proud of being part of these things. I’m proud that I was lucky enough to be at a research institution where these things were just offered to me, because that depends upon the hospital where you’re being treated or the clinic where you’re being treated. So I think it behooves patients, and I encourage them to look at what all of their options are.
Megan-Claire: In the young adult cancer world, which is also called AYA, we have different struggles because there is a gap from when you’re a teenager, but you’re nowhere close to retirement age – you’re working and/or you have a family life. How did you juggle being in this trial and also your home life and everything else that comes with being a young adult cancer patient?
“Early on I asked a doctor when I could go back to work, when I could do this etc. and he said this is your job – to be a patient, to take care of yourself, to be informed. That really switched my thinking.”
Mary Clare: I think family’s really how we made it work. Early on I asked a doctor when I could go back to work, when I could do this etc. and he said this is your job – to be a patient, to take care of yourself, to be informed. That really switched my thinking. I think the other follow-up question was whether I should keep drinking coffee in the hospital since I wasn’t really doing anything productive, and he said to keep drinking coffee if it was beneficial for me, as a way to keep my routine. I was able to embrace being a patient as my work and was very lucky that I could take a leave of absence from my job. My mother moved in with us and she was the primary caretaker for my daughter since my husband had to keep working. I luckily had my wits about me most of the time and could go to appointments on my own or with my mom. Being between 18 and 40 (37) when I was diagnosed, I was considered an AYA and was treated with a very specific clinic within the University of Chicago. There is not a lot of research about us, especially with leukemia where most people who have it are infants and 75 year-old men. Since there’s a very small amount of us that are in this middle, it means that the doctors have to figure out how to treat us. For example infants usually receive high doses of chemo, while elderly patients receive relatively low ones. They’ve learned through trials that young adults who are healthy to begin with who take the chemo at much higher doses have better outcomes, like a younger person. So it really is a great time to be part of all of this and I’ve been fortunate enough to be able to start working a little bit now myself, and not have cancer take over your whole life, even though it wasn’t easy.
Megan-Claire: You really bring up a good point about being a young adult cancer patient, I too was diagnosed under 40, and there really needs to be special attention given to our age range. I think it’s really great to have you here today to dispel some myths about clinical trials because no matter what your age you should always be considering a trial. As we wrap up this fabulous conversation I would love for you to offer a bit of advice for those patients who might feel a little uneasy about participating in a clinical trial – what would you say to them?
Mary Clare: I think one of the main things, and this is not just about clinical trials, is about the patient experience as a whole. It’s important to empower yourself to understand how this cancer is working through your body, through which mechanisms, whatever condition you have. Sure we all took biology back in high school or maybe a little bit in college, but I’ve spent the time to really figure out in basic terms what is going on with my body to get a general idea of what is going on with these different medications. Typically we’re treated with multiple medications, different phases of treatment, they’re constantly monitoring things, and you should be able to set your expectations for recovery. I think that by just saying you trust your doctor whatever they want to do and that you don’t need to know all the details, you’re doing yourself a disservice, and that you can make much better decisions if you ask those questions, especially since we live in a day and age where you can email your doctor (I even text the nurse practitioner in my oncologist’s office at times). You can say that you don’t get something, can ask what has to be done and when, or why you are going back to this medication. I think it’s really helpful to know that if the doctor can’t explain it, the nurse can tell you who in the team would be able to break it down for you. Often the people who can do that are teachers at heart, it’s a skill that they cherish having, and they will make time for an interested patient. Families can help as well, my mother-in-law was at many appointments taking lots of notes, my husband was trying to figure this stuff out and then in turn explain it to me. Clinical trials are a way that patients can be empowered and make a difference, and I love that.
Megan-Claire: So I feel wrapped with hope in hearing about your experience today and I really hope that it helps to answer a lot of questions or to ease some fears that other patients might have, and that our listeners give themselves the permission to ask those questions and take those steps, because our health matters. Thank you again for joining us today. Make sure everyone to check out the resources on www.ancora.ai: their glossary, their FAQ list, blogs … I’m Megan-Claire Chase and remember information empowers us all.
About the interviewer:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.