February 20, 2020
Inflammatory breast cancer survivor finds hope in clinical trial
BY Tiffany Honken
I’m the kind of person who follows my gut. So, when I looked up my symptoms online and thought I had inflammatory breast cancer, I kept pushing to get tested, even when my doctor told me no.
When I went to get fitted for bras in 2016, the woman who measured me pointed out that my left breast was “huge” compared to my right one. I figured everyone has a little asymmetry and brushed off her comment.
Several weeks later, I got an infection after my cat scratched my chest. My doctors diagnosed me with cat scratch fever, but it didn’t get better with antibiotics. My left breast was still swollen with lots of pain for weeks.
I did my own research, and the symptoms pointed me to inflammatory breast cancer. I told my doctor in my hometown of Columbus, Nebraska. He suggested I try a different antibiotic for 90 days.
My gut told me that wasn’t right, and I pushed for a biopsy. Three days later, my doctor confirmed that I had inflammatory breast cancer.
My inflammatory breast cancer recurrence
I had chemotherapy followed by a simple right breast mastectomy at my local hospital. I had no evidence of disease but still needed chest wall radiation after surgery. In August 2018, PET and CT scans revealed a recurrence.
My daughter was pregnant and due that December. She asked my doctor if I would live to see my granddaughter. He said that my cancer was stage IV and that I didn’t have much time.
I decided then to get a second opinion.
Going to MD Anderson eased my anxiety
I met someone in a Facebook group for people with inflammatory breast cancer, and she encouraged me to request an appointment on MD Anderson’s website. I was in Houston within four days. Breast cancer specialist Dr. Vicente Valero determined that I actually had stage IIIB inflammatory breast cancer.
During my appointments with Dr. Valero, he put me at ease as soon as he walked into the room. He always enters with a smile and leaves with a hug.
Dr. Valero knew I was anxious about my lab results. He ensured that I got them back quickly. That eased my anxiety about cancer treatment.
Choosing an inflammatory breast cancer clinical trial
I began chemotherapy with carboplatin and gemcitabine in September 2018. The cancer was still growing, and I had low blood platelets from the carboplatin. I'd also developed hypothyroidism.
Dr. Valero switched me to a different chemotherapy drug -- eribulin -- a month later. But my right neck lymph nodes were still enlarged.
He kept looking for treatment options that would work for me. And, in January 2019, I enrolled in a Phase II inflammatory breast cancer clinical trial led by Dr. Bora Lim. The clinical trial combines the immunotherapy drug atezolizumab and chemotherapy with eribulin and an oral targeted therapy, cobimetinib.
I take atezolizumab every two weeks and cobimetinib orally for 21 days, with seven days off. After the first four weeks, I received four cycles of eribulin through an IV, a short infusion given two weeks in a row and one week off. Now I’m on maintenance therapy with just atezolizumab and cobimetinib. I’ve been in remission for more than a year.
I travel from Nebraska to Houston every few weeks for treatment and labs. Traveling that often is draining, but I’m motivated knowing that this clinical trial is keeping me alive for my family. I’m so grateful for their support and prayers.
I deal with fatigue and chemobrain all the time. I always park on aisle 10 when I go to the grocery store, so I can remember where my car is parked. I also write everything down.
Trust your gut
As my inflammatory breast cancer diagnosis taught me, sometimes your gut feeling is correct. Trust your doctors, but speak up if something doesn’t feel right.
And, advocate for your own care. Standing up for yourself can save your life, just like it saved mine.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
Standing up for yourself can save your life.