It had been a busy year, I was working as hard as ever, but I just didn’t feel right. For the first time in 49 years, I had this little pooch in my stomach, not like any other pooch I had ever had. And it was just a little pooch. Everyone said, “Welcome to your 50’s, welcome to menopause!” I went to the doctor several times in 2008 and in less than a year from my last gynecological exam, I was diagnosed with stage IIIC ovarian cancer. I had a rare type of ovarian cancer, clear cell. Finding answers and support for ovarian cancer would be challenging enough, now with a rare type of ovarian cancer, I would have to work even harder.
After my debulking surgery in my hometown of Dallas, Texas and 6 rounds of gold standard, first line treatment, my cancer appeared to be gone. But at my first 90 day check, the cancer was there. The news was devastating, and unfortunately, anticipated.
At the time of my recurrence, my oncologist in Dallas suggested that I enter a clinical trial. Alternatively, I could continue treatment with one of several second line, FDA approved drugs.
But how do I decide which trial would be the best? For that matter, how do I decide between a trial or second line treatment with FDA approved drugs, and even which FDA approved drugs? There are no guidelines with which to make a choice, other than the possible side effects of the chemo and data showing response rates to certain chemo treatments. I needed some way to evaluate the drugs that I could consider taking in my next step of this battle. I wanted a way to pick the drugs that would give me the best chance at eradicating my disease. I wanted to know if the drugs were going to work on MY cancer.
On New Year’s Eve, while researching my options for clinical trials, I came across Clearity Foundation’s information. My husband called fully expecting to get a recording and Laura, the founder of Clearity, answered the phone! From there she worked expeditiously to get samples of my tumor to her labs to begin testing. The molecular profiling testing Clearity Foundation offers could provide the answers to my questions, something to base my decision on. While waiting on the test results, I had appointments at Moffitt Cancer Center, a National Cancer Institute hospital in Tampa, Florida and in Dallas. I wanted to get many expert opinions for my next step.
What I learned in Dallas is that it is becoming more difficult to qualify for clinical trials as drug companies are adding criteria to their trials that exclude patients who have been exposed to multiple chemo regimens in the past. They are looking for “healthier” patients to test their drugs in an effort to get more accurate results for the drug’s effectiveness. Also, there were limited trials in Dallas, one for solid tumors, one for vaccines, none for ovarian cancer specifically. This information furthered my insistence that I needed to find a suitable clinical trial. Waiting until after further treatments could exclude me from clinical trial options.
There were several ovarian cancer trials ongoing at Moffitt Cancer Center. One offered the trial drug in combination with a commonly used FDA approved drug. As my doctor in Tampa explained, I would be getting standard of care, PLUS a trial drug. After discussing the trial in Tampa with my doctor there, and reviewing my test reports with Clearity Foundation, I saw that trial as a true opportunity for me. Today, I have been on the trial for 8 months with plans to continue as I have experienced stable disease. This is better than what I believe I could have achieved on the second line treatment alone.
As Laura says, “The cure is out there,” and I think that cure is specific to each person. We all have to keep trying until we find what will work for each of us. I am optimistic it will happen and I will keep trying until it does!