Barbara Bigelow: Enjoying Life Because of Cancer Research

Age: 62Buzzard's Bay, Massachusetts

Almost 13 years after my initial diagnosis with stage II ER-positive breast cancer, the cancer metastasized. A biopsy of a metastasis in my liver showed that the cancer was now triple-negative, that it had a high tumor mutational burden, and that it was high for PD-L1. This knowledge turned my treatment plan on its head, I enrolled in a clinical trial testing a combination of an immunotherapy and a chemotherapy. The side effects made me so sick that I was in a medically induced coma for 10 days, but the metastases were eliminated and there has been no evidence of the cancer for 4½ years. I am grateful to be alive, enjoying life with my husband, daughters, and new grandson.

My long journey with breast cancer started when I was 44. I went for a routine mammogram, but nothing was routine about it, immediately after the mammogram, they performed an ultrasound and biopsy. The following day, my husband’s birthday, I was told that I had stage II ER-positive cancer.

I began treatment with breast conserving surgery. I found out after the surgery that the cancer had spread to some of my lymph nodes, which was heartbreaking. I then had radiotherapy and chemotherapy with doxorubicin and cyclophosphamide. It was a really tough year, I had so many side effects; I was anemic, I had to have blood transfusions, I lost my hair. One of my sisters also passed away from breast cancer.

After the chemotherapy, I took anastrozole, an antihormone treatment, for 10 years to reduce the risk of the cancer recurring. I also had my ovaries removed and a bilateral mastectomy with reconstruction to further reduce my risk of recurrence.

About three years after I finished the anastrozole treatment, I was experiencing a worsening of back pain that I had been suffering for a while. An MRI ordered by my back surgeon showed not only back issues, but also an area of concern near my right kidney, which turned out to be a tumor; I had stage IV breast cancer.

I was devastated. I started taking palbociclib and letrozole, but PET scans six months later, in September 2015, showed that the disease had progressed further and was now in my liver as well.

At this point, I sought a second opinion at Dana Farber Cancer Institute. The oncologist I met was wonderful, and I switched my care immediately. I took fulvestrant, another antihormone treatment, for three months, but again the cancer kept progressing; I had seven tumors in my liver, the base of my spine, and lymph nodes.

A biopsy of one of the liver metastatses showed why the treatments had not stopped the cancer from progressing, the cancer was no longer ER-positive. I was now faced with a diagnosis of metastatic triple-negative breast cancer, a very aggressive disease.

My oncologist told me that my cancer had a high tumor mutational burden and was high for PD-L1, which made me a good candidate for immunotherapy. I enrolled in a clinical trial testing the immunotherapy pembrolizumab (Keytruda) in combination with the chemotherapy eribulin.

I knew the treatment would be aggressive, so I was prepared when I started losing weight, vomiting daily, and losing my hair. I struggled on for about three months. Then, the skin around the port through which the chemotherapy was delivered to my body became red and looked infected. At the emergency room, I was given antibiotics and sent home. A few days later, I developed a high fever and started vomiting. By the end of the day I had been admitted to the intensive care unit (ICU).

In the ICU, I started going downhill fast, I was placed in a medically induced coma and given a less than 10 percent chance of surviving. Eventually, the doctors determined that I did not have an infection, I had hyper inflammatory syndrome as a result of the pembrolizumab. They started me on steroids to counteract the inflammation, and my condition began improving slowly. When I was woken from the coma, I had lost 42 pounds and my muscles had atrophied. I had to spend a month in the hospital and then a month in an acute rehabilitation facility learning to walk, talk, eat, and look after myself again.

Despite this horrific experience, scans showed no evidence of the breast cancer. It has remained that way ever since. I do have some significant long-term effects from the treatments I have received, including adrenal insufficiency and balance problems. But I am alive, I did not think I would live to see my oldest daughter graduate from college, let alone get married and have a child. My husband and I are so happy enjoying magical moments together.

I also devote a lot of time and energy into raising awareness about metastatic breast cancer and the need for funding for research into the disease, it is the only way that we will save more lives and change this diagnosis from a terminal condition to a chronic one.