Carol Weinbrom: Living with Metastatic Breast Cancer since 2001
I am in my 12th year of treatment for metastatic breast cancer. Although I have been in treatment constantly since my diagnosis, I have lived, and continue to live, a full and productive life. In 2012, I had my tumor genetically profiled. This empowered me. It enables me to search for clinical trials of new drugs that might keep me alive with minimal toxicity so that I can continue enjoying life.
My journey with cancer began in 2001 when I went to my general practitioner because I was tired, so tired I was having trouble completing simple tasks. He told me he felt an enlarged liver and sent me for a CT scan. The scan revealed tumors in my liver. At the time they thought it was liver cancer, but biopsies showed that it was not, it was breast cancer. I was metastatic from day one.
My first thought was: How long do I have to live? Is there any chance of survival? I felt I had to say goodbye to my future.
But the reality is that I joined a vibrant group of people living with metastatic breast cancer. You might not recognize us, we may look just like you, we are not cancer survivors, we are surviving with cancer, constantly receiving treatment. In essence, we live two parallel lives.
For me, for the first two years after diagnosis, one life was a series of chemotherapies that reduced levels of tumor markers in my blood. The other was a full-time job, a busy home life, and family obligations.
At the end of those two years, my tumor markers had dropped to levels found in healthy women and CT scans showed no evidence of disease. I was placed on anti-hormone therapy, exemestane (Aromasin), and for the next five years I lived an almost normal life.
At that time, a tumor again appeared in my liver. After radiofrequency ablation of the tumor and six months taking capecitabine (Xeloda), my tumor marker levels were once again normal and I went back on an anti-hormone therapy, this time fulvestrant (Faslodex).
Then, in the summer of 2010, several tumors were detected in my liver. I started back on a series of chemotherapies. First, carboplatin and a nanodrug called Abraxane. Then, when that drug combination failed, I received gemcitabine (Gemzar). But my body crashed and I needed several platelet and other blood-cell transfusions.
To my community oncologist, I added an oncologist at a regional cancer center. I was placed on tamoxifen, but my disease progressed, so I changed to eribulin (Halaven). It was a great drug for me and my tumor markers almost reached normal levels. However, I had to stop taking eribulin in December 2012, because my platelet and blood-cell counts plummeted.
That is when I identified a research oncologist and agree to genetic analysis of my tumor. I knew that I had the option of going on with chemotherapy or looking for more targeted drugs. I wanted more targeted drugs and I knew that genetic analysis was a way to get to them.
The results of the genetic analysis indicated that everolimus (Afinitor) might be effective against my cancer. Unfortunately, it wasn’t. This frustrated me, because, for the first time in my treatment, I had something that was telling me a drug should work for me but it wasn’t. I thought: What am I missing in the analysis?
My research oncologist explained that currently, genetic analysis is not all encompassing, because knowledge today has its limits. He also said that our knowledge is rapidly expanding and that in time genetic analysis will give a more comprehensive picture of tumors.
Although genetic analysis failed to identify a drug that benefited me, the power that it gave me was priceless, and I would recommend it to anyone in my position.
I am currently receiving an investigational drug through a phase Ib clinical trial. It is one of very few options left to me. The reality is that I am at the end of approved treatments, I rely on investigational drugs and the researchers who are identifying new ones.
To ensure that drugs are constantly entering the pipeline, researchers need a dependable source of funding. What I don’t understand, is why research into cancer, and all other diseases, is not automatically funded at a steady level by the government. As a metastatic breast cancer patient out of approved therapies, I feel I have to beg for the dollars to support the research behind my next drug. I don’t think I, or anyone, should have to beg.
The AACR was saddened to learn that Carol Weinbrom passed away on June 7, 2015. We are deeply grateful to Carol for sharing her experience with metastatic breast cancer in the AACR Cancer Progress Report 2013 to help educate others and advocate for continued funding of cancer research. We send our sincere condolences to Carol’s family and friends.
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