In hindsight, the symptoms I began experiencing in the winter of 2013, including pains in my chest and shoulders and a persistent cough, should have rung loud alarm bells. However, having undergone a pancreatectomy and splenectomy to cure a history of mucinous cystic neoplasms of the pancreas 5 years earlier, I didn’t think I would be so unfortunate, at the age of just 39, to have another serious illness to contend with so soon after the last one. Still, once it was clear the symptoms weren’t abating but were, in fact, increasing, I didn’t hesitate to make an appointment with my primary care physician.
After examining me, the doctor ordered a chest x-ray, which showed a small nodule on my right lung; she thought it could be caused by pneumonia. She prescribed antibiotics and medicine for the cough and ordered another chest x-ray in 2 weeks. The new imaging scan showed my lungs were clear, and there was no hint of the mass from a couple of weeks earlier.
Xin Zheng and her husband, Zhigang Wei, PhD, on a trip to Port Miami, Florida, in December 2019.
Unfortunately, a confluence of errors, one from the radiologist who examined the film and deemed it normal, and one from me after choosing to ignore instructions from my physician to have a follow-up chest x-ray in a year, eventually led to a diagnosis of advanced-stage non–small cell lung cancer (NSCLC) and, I feared, certain death.
Going From Cure to Terminal Cancer
At first, my health seemed fine, and there were no hints of the life-and-death struggle that lay ahead. Then, in 2015, the chronic cough and pains in my chest and shoulders returned and were more ferocious than before. A CT scan found a 3-cm mass nestled in the upper lobe of my right lung, exactly where the mysterious mass had appeared—and seemingly disappeared—2 years earlier.
I underwent a lobectomy to remove the affected upper lobe of my right lung, and a pathologic examination of the mass found I had stage Ib NSCLC. The oncologist said I wouldn’t need any further treatment, and my primary care physician told me I was lucky, because my lung cancer had been “cured.” I was ecstatic, but my happiness was short-lived.
Three months after the surgery, I began experiencing a sharp pain in my right leg, which was first misdiagnosed as a large cyst on the calf of my leg; later, it was determined to be lung cancer metastasis to my femur. And there was more bad news. A CT scan of my brain found three cancerous lesions. Now, I had stage IV cancer and was terrified.
I underwent grueling hip replacement surgery to remove the cancerous bone, followed by months of radiation to my leg and brain, as well as Gamma Knife radiosurgery to remove now a total of 10 malignant lesions from my brain. But I knew, despite the treatment, my prognosis was not good. Genomic sequencing of my tumor failed to turn up any targetable gene mutations, so drug selection to keep the cancer manageable was limited and so were my options.
The Power of Patient Advocacy
Throughout this long ordeal, I have been fortunate to have a dedicated patient advocate by my side, my husband, Zhigang Wei, PhD, who has been relentless in pursuing potentially effective therapies for my cancer. Earlier sequencing of the tumor did not detect alterations in one of the three major driver genes of NSCLC—EGFR, ALK, or ROS1—which play an important role in lung cancer development and precision treatment management. However, more sensitive next-generation genomic sequencing did find I have RET fusion–positive NSCLC, which is detected in approximately 2% of NSCLC cases.1
My husband canvassed the Internet for information on research advances in RET fusion–positive NSCLC and received an e-mail from an inquiry he had sent to Alice Shaw, MD, PhD, Paula O’Keefe Endowed Chair in Thoracic Oncology at Massachusetts General Hospital and Professor of Medicine at Harvard Medical School, about studies underway investigating RET-targeted inhibitors. One of the clinical trials Dr. Shaw mentioned was the phase I/II ARROW study of the kinase inhibitor BLU-667, now known as pralsetinib, which was demonstrating promising clinical activity against solid tumors with RET alterations.
The trial was enrolling patients with a variety of solid tumors, and I became the first patient with NSCLC to receive the therapy. In April 2020, I passed the 3-year mark of being in the study, and currently my lung cancer shows no signs of progressing and remains stable.
(Editor’s Note: Results from the phase I/II ARROW trial, which were presented during the ASCO20 Virtual Scientific Program,2 showed that patients with RET fusion–positive lung cancer treated with pralsetinib achieved durable remissions. The RET inhibitor also demonstrated significant efficacy across multiple advanced solid tumors harboring RET alterations. Blueprint Medicines, maker of pralsetinib, has submitted the drug for U.S. Food and Drug Administration approval in the treatment of advanced RET fusion–positive NSCLC.)
Ensuring All Patients Have Access to Precision Oncology
"My husband and I have become staunch patient advocates. Our key message to every terminally ill patient with cancer, every physician, and every health-care policymaker is that all patients should have access to genomic sequencing and to clinical trials."— Xin Zheng
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Looking back, I am haunted by a nagging feeling that my cancer may have been caught at an earlier stage, when perhaps cure was possible, if the mass in my lung hadn’t been missed and if I hadn’t ignored the advice of my doctor to have an annual chest x-ray. However, I cannot dwell on the past.
My experience has shown me that a diagnosis of advanced cancer is not a death sentence, but I know not every patient is as fortunate as I am. I want to give back to the medical community that has given so much to me. My husband and I have become staunch patient advocates. Our key message to every terminally ill patient with cancer, every physician, and every health-care policymaker is that all patients should have access to genomic sequencing and to clinical trials.
I would not be here today if I had not been privy to advancements in precision oncology. I want every patient to have that same opportunity to live with their cancer and not die of it.
Ms. Zheng lives in Ann Arbor, Michigan.
1. Wang Y, Xu Y, Wang X, et al: RET fusion in advanced non-small-cell lung cancer and response to cabozantinib: A case report. Medicine (Baltimore) 98:e14120, 2019.
2. Subbiah V, Hu MIN, Gainor JF, et al: Clinical activity of the RET inhibitor pralsetinib (BLU-667) in patients with RET fusion+ solid tumors. ASCO20 Virtual Scientific Program. Abstract 109.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.