Kim Alexander: Living with Inflammatory Breast Cancer since 2006

Age: 55Gallatin, Tennessee

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.

View all Cancer Progress Report 2013 Survivors