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This Is What It's Like To Be In A Cancer Clinical Trial
Every year, thousands of patients sign up for and undergo experimental treatments in the name of finding new medical options for themselves and others who share their condition. The number of these brave souls is growing fast: Clinical trials registered with the National Institutes of Health have grown 127% in the past six years, from 66,287 in 2009 to 190,138 in May 2015. That's pretty amazing when you consider that just 15 years ago there were only 5,635 registered clinical trials in the US. Under the Affordable Care Act, insurers are now prohibited from dropping or limiting coverage for participants who choose to enroll in a clinical trial to treat cancer or other life-threatening disease, which could increase access to and participation in this kind of research. Jessica Sultaire, 27, spent the past year enrolled in a clinical trial for an ovarian cancer drug. This is her insider's look at the experience.
Some women my age open their refrigerator in the morning and reach for a green juice. For nearly a year, I opened my refrigerator in the morning and reached for my green chemo pill. There was also a white pill, a red and white pill, and a tan pill. These pills stared me in the face every day since last May, when I started on a clinical cancer-drug trial. They were pretty normal-looking as pills go, but these ones packed a serious punch. They stood to revolutionize how women with ovarian cancer are treated. They also held the promise of slowing the progression of my disease.
I was first diagnosed with Stage 3 Ovarian Epithelial Cancer on Thanksgiving of 2012, less than two months before my 25th birthday. Just a few days earlier, I had received a call from the gastroenterologist I'd consulted about severe abdominal bloating I was experiencing. He was calling to let me know that after looking at the results of an endoscopy and colonoscopy I'd had done, the bloating was "just gas." Two days after that phone call I noticed that, in addition to my extremely distended abdomen, my ankles and feet were swollen like grapefruits. I was home for the holiday and planning to spend the night out with friends when my parents rushed me to the emergency room in my hometown of Torrington, CT. That was where I learned my issue was much more serious than indigestion.
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No combination of words can come close to describing how it feels to be told that you have cancer. There was a momentary feeling of relief—in the sense of, "Finally! We know what the problem is!" which quickly dissolved into fear and disbelief. What is actually worse than hearing a doctor tell you that you have cancer is watching your parents receive the news. I remember my mom asking the consulting oncologist if I could be cured and him telling her there was no guarantee. I sat there numb and shaking as I watched my parents' hearts break.
Having been diagnosed at such an advanced stage, there were a lot of tumors, and the cancer had spread to places outside my ovaries, including my liver. After surgery to remove my tumors and a total abdominal hysterectomy—meaning all my reproductive organs were removed—I underwent a grueling chemotherapy treatment, and was deemed cancer-free on April 26, 2013.
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It didn't take long for cancer to rear its ugly head again: I received news that the cancer was back on December 10, 2013, and had to decide what the next steps would be. Receiving this news a second time was a little different from the first. I recall first turning to my oncologist and saying, "We did this once; we will do it again. Let's do what we need to do". It was devastating news, but I felt more prepared to receive it. I also had the proper support system in place, including social workers and other friends with cancer, who served as go-to emotional cushions. My reaction was more rooted in the disappointment of these seemingly never-ending obstacles than the fear of dying.
The Clinical Trial
Not long after the news of my cancer's recurrence, my gynecological oncologist, who evaluates a treatment plan from all angles, recommended a new and exciting option that had shown promising results in people with slow-growing ovarian tumors like mine. Although the tumors grow slowly, they are not very responsive to traditional chemo, and are therefore really difficult to treat.
Pimasertib, an oral chemotherapy drug, was being called "up and coming" for ovarian cancer treatment by doctors at big-name hospitals, and had been found to be effective in Phase 1 clinical trials. A research team at Massachusetts General Hospital, not too far from where I live in Providence, RI, were looking for participants for Phase 2 of the trial, which would investigate whether another drug called SAR245409, used in combination with Pimasertib, would make the treatment more or less effective. In other words, all participants in the trial are receiving Pimasertib, the variable is whether or not our other pills are SAR245409 or a placebo.
Once I went to Mass General for the consultation, the principal investigator of the clinical trial, a medical oncologist, explained the study in depth. He discussed how the drug is administered, the type of testing I would require and frequency of visits, as well as how the drug works to fight the cancer as a targeted therapy. He also reviewed all of the possible side effects and likelihood that those side effects would occur based on the first phase of the study and gave me a copy of the study protocol and informed consent sheet. The research team did not pressure me to agree to join the study or make any decisions on the spot. In fact, they encouraged me to take it home and think about it over the next week or so prior to making a decision.
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Making The Call
I really struggled making this decision because it was the first time I was being asked to choose my treatment plan. My doctors had their opinions and provided many resources to help me make an informed decision, but ultimately the route I took was in my hands. I did not know anything about what it's like to be in a clinical trial and feared how my body would react to the drug or if there would be long-term consequences of pursuing this treatment.
My other treatment options, which were more similar to what I had already tried, were more flexible in that I could pursue them at any time should the trial not pan out. The trial, on the other hand, put limits on the number of treatments patients could have previously received. So the choice was now or never.
I decided I didn't have anything to lose. I was free to leave the trial at any time, and excited about being involved in something that, if refined to a point where it could help women on a large scale, has the potential to save thousands of lives. The doctors seemed to favor this treatment and set the expectation that although it may not remove the tumors entirely, it may hinder or stop their growth. With a cancer as persistent as mine, even stable disease is a good prognosis, though ideally being cancer-free is the goal.
Nausea, Vomit, Repeat
Imagine the last time you got a stomach bug. You probably experienced stomach discomfort, diarrhea, nausea, and vomiting. Maybe it was even so uncomfortable you wondered if you'd ever feel better. Now imagine feeling like that every day for over nine months, and you'll start to understand the reality of my life as a participant in this trial.
A typically bad day went something like this: I'd be up all night from being sick. Then I would take the drug that made me feel that way, be sick at work, take two more pills at dinner time and wait to feel sick again. Other side effects of my treatment included a swollen leg, full-on acne over every square inch of my face, chest, and back; mouth sores on and under my tongue and on my cheeks; and a trace amount of fluid collecting behind my retina, which was found during a routine checkup and luckily didn't affect my vision. These symptoms all cleared themselves up after brief treatment breaks, or "chemocations" as I call them.
Before the trial, when I was first treated with chemotherapy, I got two infusions one week, one the next, and then I had a whole week off. While the treatments were taxing, I knew that I'd be feeling good in a few days. Emotionally, mentally, and physically it was so important to have that one week when I felt like myself. That's a luxury I didn't have while enrolled in the clinical trial.
I'm not shy about sharing my experiences, and have detailed most of my illness on my blog, The Cancer Chronicles. So most people in my life knew I was participating in a clinical trial. My coworkers, who are all aware of my illness, have always been supportive, and my generous benefits as an academic advisor at Bryant University have given me peace of mind. Considering my circumstances, I rallied more than I expected at work while I was on the clinical trial, but it wasn't easy by any means. My job is a student-centered role that requires a lot of pushing through with a smile. You need to be detail-oriented, compassionate, and empathetic to be successful.
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Searching For Community
With other forms of treatment, you have a good idea of what you can expect based on what others have gone through. The first chemotherapy treatment I had is the "industry standard" for treatment, meaning a lot of people are treated similarly. There is an abundance of credible information out there. I also spoke with two friends who had received chemotherapy in the past. They understood my fears and concerns on a personal level.
In a clinical trial, there are so few people who are going through what you're going through, so the experience is very different. You can't really research what the experience is supposed to be like, because you're the one who will eventually tell people what it's like. The inability to relate to anyone can be very isolating. The physical struggle is a small piece—the emotional toll is much larger and more complex. There is a level of camaraderie that I seek out with other "cancer crushers" to feel understood. Lacking the ability to connect with even one person that has had the same experience feels like being dropped into the middle a foreign country with zero knowledge of the language. Sure, there are plenty of people that are willing to guide you, but if you don't have your bearings and can't articulate your experience in a way that someone truly understands, you still feel alone.
I put out many feelers for others living in this foreign land that was my clinical trial, and always came up short—until I met Trudie, a woman about my age from Belgium who's on the same trial, in November 2014. She was doing some strategic searching of her own, found my blog, and reached out via email. We checked in with each other periodically via email, usually once every two to four week, and found that the treatment was tough on both of our systems. We experienced a lot of the same side effects, including terrible acne on our face and body, diarrhea, fatigue, and swelling of our face and legs, and it was nice to have someone to just vent to and know what's normal and what's not.
My boyfriend Cory, who I met just one month before going on the trial, is my biggest cheerleader. I did not believe that anyone could love me like that, being so sick and going through all of the ups and downs of this clinical trial. It's a lot to ask of someone to be your partner when you're this sick, but he was right there the whole time, coaching me through many daunting days and nights of being physically ill and emotionally drained.
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Questioning Quality of Life
Over time, a trial can wear on you. While I was as active and as social as I could be while also working full time, you can only suck it up with a smile on your face for so long. In March, I spoke up to the team at Mass General about how my quality of life was suffering, mentioning I didn't think I could handle the trial much longer. After being granted a three-week chemocation (and being able to keep food down!), I decided my time in the trial was over. As it turns out, the day I was prepared to quit the trial, my CT scan results showed progressive disease, or new tumors. As it was outlined in the paperwork I signed, you are in the trial as long as you can tolerate it—unless any new disease is found, in which case your participation is terminated. So in my case, I knew I wanted out, but I would have had to leave the study regardless.
No Looking Back
Despite the side effects and my experience with the trial, my prognosis has not changed much now in comparison to when I started the trial. One "benefit" of having a low-grade cancer is that although it's not as responsive to chemotherapy treatment as high-grade cancers, it is slow growing, which gives me time to experiment with long-term treatment options.
Though I'm facing an incredibly persistent and aggressive disease, each doctor has given me great hope that I can live a long and fulfilling life with appropriate treatment. Not once has any oncologist stamped an expiration date on me. We never talk life expectancy or survival statistics and that has shaped my expectations for my future.
While this clinical trial did not work out for me, I've never questioned if it was worth it. My experience was tough, but I felt supported by the researchers and the doctors leading the trial the entire time. And there's definitely something to be said about the promise of clinical trials. It's exciting. You're contributing to the possibility of other people getting well in the future, and that's a crazy feeling.
At the end of the day, the data I was able to contribute is, in a small way, helping to pave the way for a future treatment option. I am here today, living my life, because there were people bold enough to be the first to participate in innovative surgeries and therapies. I feel good knowing that I could do the same.
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