Kim Alexander: Living with Inflammatory Breast Cancer since 2006
I was diagnosed with HER2-positive, stage III inflammatory breast cancer in October 2006. It progressed to metastatic cancer in May 2009. By December 2010, I had undergone several different treatments and participated in several clinical trials but my cancer was no longer responding and the treatments were very toxic to my body. I was ready to give up. I agreed to enroll on one last clinical trial. It was testing a drug called T-DM1 (Kadcyla). It handed me my life back, and some — I’m happier than I have ever been.
It all started in September 2006. I was riding a horse that I had recently purchased and I suddenly felt severe pain in my breast. When I looked, I discovered my breast was extremely enlarged. Despite this, it was another three weeks before I went to a gynecologist, because I had heard about something called inflammatory breast cancer, and I needed to wrap my mind around the awful possibility that I might have something that serious.
The gynecologist sent me straight to a breast specialist, who confirmed my fears immediately. Being told that you have inflammatory breast cancer and that it is the worst type of breast cancer was terrifying. I was immediately thrown into a world that I knew nothing about; treatments, surgeries, breast cancer markers. I had to become an expert really quickly.
My initial treatment was chemotherapy. Because my tumor was HER2-positive, I first received two chemotherapy drugs and then trastuzumab (Herceptin), which targets HER2, and paclitaxel (Taxol). After a short break, I had surgery, which was followed by a year of treatment with trastuzumab.
Just six months after stopping treatment with trastuzumab, I found out that my cancer had progressed. For the next 18 months I received various exitsing treatments and participated in a number of clinical trials. Some of the drugs or drug combinations benefited me for a time but none had a lasting effect.
After the fourth or fifth treatment, I was so sick that I decided to tell my doctor that I wanted to stop treatment. However, she talked me in to enrolling in a phase III clinical trial at Sarah Cannon in Nashville, which was testing T-DM1. Enrolling in the trial changed my life.
I received my first dose of T-DM1 in December 2010. Initially, T-DM1 controlled my cancer, then it started to shrink it, and by December 2011, there was no sign of it. It was an amazing moment, and one that I had not expected.
My decision to enroll on the T-DM1 clinical trial turned my life around almost immediately. I had been ready to throw my life away, but the dynamic, upbeat attitude at Sarah Cannon, where there was no consideration that I was a dying person, coupled with the fact that my cancer was responding to T-DM1, enabled me to start thinking about my future. I felt so positive that just a month after enrolling in the trial, I adopted an unwanted, neglected thoroughbred ex-racehorse and made plans for his future as a dressage horse.
I still receive T-DM1 every three weeks and my scans continue to show no sign of disease. I’m extremely healthy, I’m spending most of my time outdoors, and I’m living a life that is, in many ways, higher quality than it was before my diagnosis.
There are two things that I have learned from my experience with cancer. First, cancer is not a death sentence and you must not stop living. If your doctor makes you feel that there is no hope, then you need to consider finding a new one. Second, clinical research saves lives. It saved my life, and has saved the lives of many of my friends. Without it, cancer will beat us all.
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