A Patient’s Perspective on Clinical Trials
(Editor’s Note: This article is in two parts. This is Part 2 (go here to read Part 1) and consists of an interview of Celine Delaloye, a professional working at a pharmaceutical company and an HER2 breast cancer-positive patient. The interview is conducted by the “Indomitable” Christine Bienvenu, breast cancer patient, avid patient advocate and board member of the Patient Empowerment Foundation, our sister organization under development in Europe. And please, don’t be concerned that this is an interview with a European patient. You will be surprised to see that the issues, thoughts, concerns of patients and doctors are the same. These issues are worldwide!)
As a professional working in a pharma company, Céline Delaloye (28) is no stranger to clinical trials. Here, she discusses her personal experience as an HER2 breast cancer-positive patient.
Interview With Celine Delaloye
Christine Bienvenu (CB): How did you learn about the clinical trial you are part of, and what convinced you to enroll in it?
Céline Delaloye (CD): It was thanks to working for a pharmaceutical company that I first heard about the clinical trial, and given my job, I’m well aware of how difficult it is to enroll in trials – let alone get accepted. As a professional, I’ve drafted many a quality of life questionnaire for clinical trials, and my professional insights really helped me when I, all of a sudden, was a patient myself.
My oncologist explained to me what a Phase II randomized study was, with the “random” part meaning that I couldn’t choose which group I’d be part of. Again, thanks to my professional background, I already knew a lot and didn’t need further convincing. But for my husband, it was really important to get a second opinion. Luckily, the oncologist we met with spoke very highly of the clinical trial, boosting our confidence about it being the best possible treatment available.
CB: Because of your job, you’ve seen how difficult it can be for patients to meet Phase II clinical trial eligibility criteria. Does that make you feel fortunate about access to the clinical trials, or frustrated that more patients can’t benefit – or did you even think about that at all?
CD: Like you said, I knew from my professional background what I was up against. My husband, though, was afraid I’d be used as a “guinea pig”. And it’s when I heard those words – “guinea pig” – that it struck me how the words “clinical trial” can really scare people. They’re in the dark about the details; to them, it’s like some kind of experimentation.
I honestly feel very fortunate that I was accepted into the clinical trial because I had the “luck” – if you want to call it that – of meeting all the criteria. I’m proud and happy to be part of a clinical trial. But I’m fully aware of the fact that not everyone has the same opportunity.
CB: How did you feel when you were accepted: Happy or apprehensive? What were your hopes and fears when you enrolled in the clinical trial?
CD: Initially, I was really happy in the sense that there was no doubt at all about my meeting all the acceptance criteria for the trial. I was excited. Scared. A bit of everything. My professional experience pushed me to learn as much as I could about the clinical trial.
To be honest, though, as a patient, I just needed to understand every aspect of it. But when I started reading all the documentation related to the study, its possible side effects and outcomes, I became more apprehensive: Which ones would I have? When I started the first cycle, though, I realized that we’re all unique in how we react. Just because potential side effects were listed didn’t mean that I’d have them. Two treatments in, I saw that I wasn’t experiencing every side effect, and felt more reassured about continuing the treatment with confidence.
And oh my goodness, the paperwork! I found it completely overwhelming, to be honest. But I just took it one step at a time. That’s the only thing you can do, really.
CB: Be honest, how hectic were the logistics of being part of a clinical trial?
CD: As a professional, I hadn’t had to deal with the emotional component of being part of a clinical trial. As patient, I did. As a patient, at intellectual level, I needed to understand all of the protocol tests associated with clinical trials to feel reassured and feel confident about continuing.
To be honest, I was never discouraged by the number of appointments related to the clinical trial. Sure, logistically, I needed to make sure my baby and husband were okay, but I have an amazing network of family and friends who have supported me throughout. At no time have I wanted to stop treatments: I’m more of the mindset of, “The faster we start, the faster the results”, right?!
CB: How supportive was your medical team in helping you deal with logistics?
CD: They were amazing, across the board – seriously. All the oncologists and nurses were so accommodative of and flexible with my schedule, needs and requests. They really made my life so much easier. Keeping up the busy pace of appointments was never an issue.
CB: Based on your experience, what would you tell anyone considering enrolling in a clinical trial?
CD: As both a professional and a patient, I’d encourage others to look into clinical trials, gather extensive information, ask their oncologist questions, and go for it. In my mind, it’s the best thing that can happen, treatment-wise. But I know how difficult it can be for so many, given just how stringent the acceptance criteria are. And for me, that’s a problem. Get out there, don’t sit back. Be proactive! Learn everything you can… Talk to your doctor: in my view, as patients, we’re a crucial part of the team!
CB: As a patient, do you feel information about clinical trials could be more available or easily accessible?
CD: Personally, I think every patient should be informed of any study, regardless of eligibility or where they are being treated. It is both the patient’s and the doctor’s responsibility to learn about clinical trials. When you are first diagnosed, your world crumbles. But information is knowledge and power… It’s so important. In my view, all hospitals – university and private – should be part of raising awareness in patient circles about clinical trials by hosting regular information sessions. If patients had easier access to information on clinical trials, I think they’d be naturally more inclined to look into their eligibility.
Another aspect that I think is often overlooked – but very important – is this: If a patient isn’t accepted into a clinical trial, what support networks are available for them? They have just as many hopes as the rest of us and shouldn’t be left behind. I was just lucky enough that I qualified fully for the clinical trial, so this deep disappointment wasn’t ever anything I had to deal with. I feel very lucky in that respect. But I do wonder about the support network for those patients who don’t qualify.
CB: Any parting thoughts?
CD: As a patient, it’s important to remember that when you accept to be part of a clinical trial, you also have every right to back out – at any time. It’s also important to know that if the disease progresses, a patient runs the risk of being removed from the study. I also firmly believe in the patient being proactive and informed every step of the way.
The National Cancer Institute’s (NCI) “10 step guide on how to find a cancer treatment trial” helps patients better understand what clinical trials are all about, how to talk to their doctors, and know what questions to ask, visit: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/trial-guide?cid=tw_NCIMain_nci_Clinical+Trials_sf39211784