Triple-negative breast cancer survivor finds hope with clinical trial

A little over a year ago, Robbie Johnson was desperately searching for the right metastatic breast cancer treatment.

"I’d been receiving no treatment, and I knew the cancer was spreading throughout my body,” she says. “My husband and I were mentally at a very low point.”

Robbie was initially diagnosed with HER2 breast cancer in October 2013. She underwent treatment in her home state of South Carolina, but 2 years later, a nurse practitioner noticed a lump near her collar bone during a follow-up appointment. A biopsy confirmed that the cancer had returned. This time, though, doctors were a lot less certain about the type of breast cancer she had, with the hospital changing her diagnosis from HER2 to triple-negative and back to HER2.

A triple-negative breast cancer diagnosis

Following triple negative chemo treatment, she underwent surgery in March 2016 to remove the lump below her collarbone and followed up with HER2 chemo treatment until July 2016.  At the end of July, the lump below her collarbone returned. CT and bone scans confirmed the cancer was spreading all over her body. Her doctors stopped all medications with the hopes of enrolling her into a clinical trial, but those plans kept stalling. Fed up, she did her own research and decided MD Anderson was where she should go. A second opinion from another doctor recommended she head straight to MD Anderson.

On Sept. 2, 2016, Robbie met with Sadia Saleem, M.D., and she hasn’t looked back.

“Dr. Saleem listened. She was accessible and she personally called us back and talked to us several times that first week we were there,” Robbie says. “I felt like I was getting the attention that I thought we needed because it was definitely a snowball going downhill at that time.”

New biopsies and PET scans ordered by Saleem showed Robbie had triple-negative breast cancer, and her disease had spread to her collarbone, shoulder, liver, lungs, right buttock and rib. Saleem recommended that Robbie enroll in a clinical trial examining the combination of the drugs Olaparib and AZD5363 to treat recurrent cancer. Robbie agreed to give it a shot.

“It made sense that we were going to have to do something a little out of the ordinary since it’d spread throughout my body, and it’d spread while I was on treatment,” she says.

Triple-negative breast cancer clinical trial shows promise

While Robbie was waiting for an open slot in the trial, she took two rounds of an oral chemotherapy drug called Xeloda and a drug called Ixempra, which is administered through an IV. Neither shrunk the tumors, so Saleem pulled her off the medications to prepare her for the clinical trial. On Nov. 22, 2016, Robbie started taking Olaparib twice daily and AZD5363 twice a day, four times a week.

“When I started the trial, you could feel the lump in my buttocks and the lump below my shoulder blade. But around March and April, both the doctor and myself could tell they were getting smaller,” she says. “Now they’re both gone.”

 All of the tumors are shrinking dramatically. Robbie still has some cancerous spots, so she will stay on the trial indefinitely. The medications have been causing her some nausea and diarrhea, but both side effects have been manageable.

“I feel great. I’m mentally in a very good place,” she says. “I just continue my life. I go and do whatever I want to do. I play golf; I go fishing. My husband and I have our own business, so I help with that. I clean and I cook. I certainly was not in the same place a year ago.”

Lessons learned from metastatic breast cancer

Robbie hopes that by sharing her story, she can empower others to take charge of their treatment and not be afraid to speak up when something doesn’t make sense.

“Don’t walk out of any appointment without at least attempting to get the answers you deserve. You have to be your own best advocate. You can’t become complacent. Do your research. Don’t settle for something you’re uncomfortable with,” she says. “If something doesn’t feel right, there’s probably an issue. Go get a second and third opinion.”

Request an appointment at MD Anderson online or by calling 1-877-632-6789.