Living with Metastatic Breast Cancer

Chapter 10: Judy Ann A Miracle of Science At age 38 in 2003 Judy was diagnosed with ductal carcinoma in situ treated with left mastectomy, and an axillary lymph node dissection, but no adjuvant systemic therapy or radiation. Judy relapsed August 2013 with invasive cancer. ER 100% positive, PR 40%, negative for HER-2/neu by immunohistochemistry, PET-CT showed widespread disease in lymph nodes. First chemotherapy was Abraxane, treated by others, with good response per PET-CT in December 2013. February 2014, enlarging nodal disease on exam. However, the CT scan showed that most of the disease had responded except for a 4 x 3 cm left mediastinal chest wall mass invading the anterior chest and sternum. By March 2014, she had progressive disease by PET scan with initiation of Anastrozole until June 7, 2014, when she came off in preparation for the PALOMA-3 trial, which unfortunately was closed before she could enroll. This would have given her an option to receive Palbociclib, then investigational. Non-protocol Faslodex started July 23, 2014 and she was put back on anastrozole with it. Progressive disease, September 10, 2014 compared with a CAT scan of June 10, 2014 with extensive adenopathy most prominently in the chest. She received Xeloda September 24, 2014 with Navelbine added October 14, 2014 because of poor response to Xeloda alone. At relapse Taxotere, Adriamycin, and Cytoxan were started November 5, 2014 with 2 doses, but clinical progression occurred with significant worsening of her pain. A Foundation One report indicated FGFR positivity she enrolled in a Lucitanib clinical trial FGFR antagonist January 9, 2015. Left chest wall mass was biopsied on January 2, 2015, revealing infiltrating ductal carcinoma, ER greater than 50% positive, progesterone receptor negative, HER-2/neu negative. Dose reductions were needed due to thyroid function abnormalities and thrombocytopenia. Disease worsening on CT scans led to discontinuation of Lucitanib on July 28, 2015. This investigational drug was subsequently found to be ineffective in breast cancer. Early September 2015 Judy had an initial consult at U.S. National Cancer Institute to assess eligibility for an investigational trial of tumor infiltrating Lymphocytes (TIL). Please read Judy’s story for a miracle of science. Judy Ann’s Story Five years ago, I was dying with only a few months to live. My breast cancer had returned, and the fight was almost over. I spent as much time with my friends and family as I could. I had no more bucket list plans, and I intended to curl up with my cats and read books or watch TV until I died. But I had one last chance at the brass ring. And I took it. When I was diagnosed in 2013 it was a heavy blow. Metastatic (or Stage 4) breast cancer is “treatable but not curable”. For obvious reasons, I was suddenly very motivated to learn everything I could about my disease. My cousin, a patient advocate for many years, advised me to get to a comprehensive cancer center and to try to get into clinical trials. Two years later, more than a dozen treatments had failed me. I had been treated by Dr. Charles Vogel at the University of Miami and we had tried hormonal therapies and chemotherapies. I had even been in a clinical trial for a drug called Lucitanib, an FGFR1 inhibitor, which had some magic and bought me almost six months. At first, my tumors seemed to disappear and both Dr. Vogel and I were excited by the results. But I experienced a host of side effects and practically had Dr. Vogel on speed dial. We were able to manage problems with blood pressure and thyroid function but ultimately, my platelet count got too low. We had to reduce the dosage until that too failed. That’s when I met Dr. Stephanie Goff. She is one of the researchers on Dr. Steven Rosenberg’s team at the National Cancer Institute. At an advocacy training called Project LEAD, she told me about their clinical trial. A few weeks later, I arrived for duty at the National Institutes of Health in Bethesda, MD. The trial was for “Immunotherapy using Tumor Infiltrating Lymphocytes” (TIL for short). Here is how it works: inside my tumors were T-cells which were able to recognize my cancer. But the cancer was able to trick these T-cells into thinking it wasn’t a threat; thus, the cancer avoided setting off the alarm and kept my T-cells from multiplying and attacking. Dr. Rosenberg’s team has created a treatment that is often able to overcome this resistance. To be a candidate for this trial, you have to have at least two tumors. One that can be surgically removed (to obtain the TIL) and one that they can watch to see if the treatment is working. With breast cancer patients, we often have bone only disease. By the time we have tumors that can be surgically removed, the cancer has spread to the liver or lungs, and we are becoming too sick to endure the treatment. Some patients have brain metastases, and they also don’t qualify for the trial. Because of these problems, I was the first breast cancer patient that was treated. I was a good candidate because I had an easily accessible tumor in my right breast, and I was still fairly healthy. In August of 2015, Dr. Goff removed that tumor. Nikos, the man behind the scenes in the lab, isolated the T-cells from my tumor. He fed them bits of my tumor to identify the cells that would attack my tumor. He then expanded these cells and filled an IV bag with 81 billion of them. Unfortunately, it took four months to complete his work in the lab. And between my surgery (in August) and when my cells were ready (in December), I had really started to go down the rabbit hole. I was in a lot of pain. Tumors had spread throughout my liver. I understood that the odds of this treatment working were about 15% (not good) and I was doing my best to prepare myself for the unhappy but likely outcome. I limped into the clinic at the NIH in December of 2015 and was there for almost a month. Prior to receiving my cells, I received high dose chemotherapy to temporarily knock out my immune system. The post treatment is also grueling. Suffice it to say that, when I was finished, I felt battered and weak. Despite the fact that I felt miserable, even before I left the clinic, I had a glimmer of hope. I knew that my tumors were shrinking. They continued to shrink, and I stopped taking my pain meds cold turkey. A few weeks later, my energy returned. By April, I was backpacking again on the Appalachian Trail. In May of 2016, I had my first clean scan. My cancer was gone, and it has stayed that way ever since. Since news of my clinical trial was published, there’s been a lot of excitement about the treatment I received. But my friend, Cindy, received the same treatment—and it didn’t work for her. To my knowledge, it hasn’t worked for anyone else with breast cancer. Cindy was also a patient of Dr. Vogel’s and we all hoped she would have the same response I did. Sadly, she passed away just a few months after her treatment. Please see chapter 11, Rebecca’s Story, “A Miracle of Faith and Prayer”.