TNBC and Me: Getting Metastatic Treatment Through Clinical Trials

August 30, 2018

In 2014, I felt a large mass on my left breast. It turned out to be stage III, triple-negative breast cancer. My oncologist offered me the choice to start ACT chemotherapy immediately or look into clinical trials. I didn’t know anything about clinical trials at the time, but the words made me imagine a guinea pig covered in acupuncture needles, trapped in a cage. I told myself I didn’t want to be a lab rat and I wanted the medication that was proven to work.

I chose what I thought was the safe option – the standard of care. I had four months of chemotherapy, two single mastectomies, seven implant infections, and am now flat. Then, 16 months later, in August 2016, the TNBC metastasized. Small nodules were found in my lungs, prompting the oncologist to again recommend clinical trials.

This time my ears perked up. I wasn’t happy to enter into the grey zone of not really knowing how to treat this terminal illness, or that I was about to embark into unknown experimental territory. But I acknowledged that I was actually ignorant about clinical trials and was basing my decisions on fear, so I was ready to learn. And since there is no known cure for TNBC, especially metastatic TNBC, I was willing to open up more and listen to my options. But I listened with caution; I certainly didn’t want to put myself in more danger. 

Foundation One genomic testing of my tumor tissue was done immediately. The Foundation One report identifies each mutation associated with the tumor, and this information can be used to identify trials precisely for that tumor. Precision medicine is astonishing – it involves taking risks, but it gives us the opportunity to try innovative drugs and treatments before FDA approval.

My oncologist suggested a National Cancer Institute-designated hospital where my Foundation One test results, hormone receptor status and BRCA test results were used to identify matching trials at that location. Unfortunately, I learned there’s no one-stop shopping when looking for clinical trials. The most popular route is to do your own search on to see where trials are being held. It became clear to me that I had to shop for trials on my own, then physically show up to the hospitals participating in the trial and get tested to see if I was eligible.  

I felt like I was going to lose my mind. I felt alone, terribly afraid, abandoned, sometimes hopeless, angry, and desperate. I was in severe fight or flight mode and I didn’t know where to turn. Overwhelmed, a friend and family member combed through the database for me and I visited every doctor on the list they created. I made appointments with several doctors in New Jersey and New York and if interested, did any preliminary tests to see if I was eligible for their trials.

I started taking charge and keeping a copy of every report and scan to expedite the new patient process. One oncologist tested me for an androgen receptor, another for PD-L1, and yet another for GPNMB.

Each visit took a few days or weeks to be seen, even as I panicked about tumors spreading in my liver, lungs, bones and lymph nodes. After visiting about eight specialists, along with getting the advice of the professionals, I chose to enroll in a phase I trial of pembrolizumab (Keytruda) Pembrolizumab MK-3475.

Once on the trial, I had chemotherapy as frequently as weekly, to as far apart as every three weeks. Scans were every 4 to 8 weeks and blood work (including tumor markers) was taken each time I had treatment. I liked that I was being closely watched. It was, in fact, being so closely watched during this trial that showed when my tumors started to grow after shrinking from Keytruda. In June 2017, I was removed from the Keytruda trial because the tumors were growing back.

The tumors were small, so another trial was suggested. This time I received professional help from two startup companies that help bridge the gap for patients and providers – and Smartbridge Health. I was given a second opinion, a professional phone consult and a list of the top 5 to 10 trials for me in my area, based on my medical records.

I went on to the NCI-9782 trial for 8 months, which included treatment with taxol, carboplatin and a PARP inhibitor. Why a PARP inhibitor? Well, they used the mutation information from my Foundation One test and saw that my FANCA mutation has the same DNA blocking repair path, so we thought we’d see how the PARP inhibitor would work for me.

On this trial, I was NEAD (no evidence of active disease) according to scans, but then the tumor markers started rising. I got a brain MRI and PET scan that confirmed bone, abdominal and brain progression. Since we found the tumors so small, I was able to have Gamma Knife instead of brain surgery.

When I first started searching for trials, the important things for me were that I would not be given a placebo, that the trial was specific to TNBC, and the impact it would have on my quality of life.

I learned that the medicines in clinical trials aren’t just any drugs – they go through an extensive review with an IRB board specifically designed to make sure trials are safe for human subjects. I also learned that while I was worried being given a placebo drug meant I’d have to take a sugar pill, that is false. On a trial, they would never not give you at least the standard of care. I would never be given only a fake pill.

Now I’m on the search again, and I know who to call. Other reputable sites I’ve found useful are EmergingMed, The Storm Riders and the National Cancer Institute.

About 15 to 20 percent of all breast cancers are triple-negative. To learn more about this subtype, its treatments and how it impacts lifestyle, attend our conference, Sharing Wisdom, Sharing Strength September 28 – 30. To read more personal stories, visit TNBC and Me

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