Donna’s journey with gastrointestinal stromal tumor (GIST) began in 2006 and has been a rollercoaster of medical procedures, treatments, and emotional challenges.
My story is one of resilience and hope, reflecting the continuous advancements in cancer treatment and the importance of advocating for oneself in the face of adversity.
In 2006, a routine colonoscopy revealed polyps and a mass, which, after a biopsy, was diagnosed as GIST – an uncommon type of cancer that starts in the digestive tract. The discovery was unexpected and marked the beginning of Donna’s long journey with this disease. She underwent surgery to remove the mass, hoping that this would be the end of her ordeal. However, this was only the beginning.
Donna was told by an oncologist that the size of the tumor was not significant enough to warrant any additional therapies or medication. Years later, when additional tumors appeared, she was told by her anesthesia team from that initial surgery that she should have begun oral medication immediately following her initial surgery.
Donna visited her internal medicine doctor in 2009 for back pain, leading to an MRI, CT scan, and biopsy. Tumors were found on her pelvic bones, and a cyst was identified on her liver. Surgery was not an option for the bone lesions, and she was told that radiation and chemotherapy were ineffective for GIST. Donna visited the oncologist again, who started her on the drug Gleevec. This medication became a significant part of her treatment regimen. Donna remained disease progression-free for the next few years.
By December 2015, the growing cyst in her liver had become a more solid mass and was suspected to be GIST. After weighing her options, Donna underwent a liver resection and continued taking Gleevec. Despite the surgery, a routine CT scan in June 2017 revealed a mass on her liver and on her rib. She attempted radiation for the mass on her rib, but the treatment led to continuous rib fractures and ongoing pain. She attempted a new drug, but the side effects, including extreme pain and hair loss, were unbearable.
In 2018, Donna and her husband consulted with a doctor who, at that time, was the Chief Medical Officer of the American Cancer Society. He recommended two experts in GIST, and, after completing her research, Donna decided to visit Oregon Health & Science University, an NCI-designated Cancer Center in Portland, OR. She also attended a GIST conference, meeting one of the recommended oncologists and connecting with people with her same rare disease. She learned more about her cancer, new treatments that were available, and gained a better understanding of clinical trials. Shortly after, she started the DCC-2618 Phase 3 clinical trial under the care and coordination of a knowledgeable and involved medical team. The clinical trial drug, Ripretinib (Qinlock), has since been approved by the FDA, and she continues to take the drug today.
Donna’s health journey has been fraught with challenges, missteps, and hard-won victories. From the initial diagnosis and surgeries to navigating various treatments and clinical trials, she has persevered through immense physical and emotional pain. The support of dedicated medical professionals and her determination to find effective treatment options have been crucial in managing this relentless disease. She knows the necessity of continued investment in cancer research, particularly for new, effective drugs with fewer side effects for patients like her.