Every Wednesday in 2024 will be dedicated to learning about the clinical trial process and to highlighting the groundbreaking clinical trials focused on gastrointestinal stromal tumors (GIST). We understand the importance of staying informed about the latest advancements in research and treatment options, and we want to empower you with the knowledge to make informed decisions about your healthcare journey.
Clinical trials are the backbone of medical progress, serving as the driving force behind the development of new treatments and therapies. Understanding the details of these trials is crucial, as it empowers you to make informed decisions about your healthcare, demystifies the process, and ensures you play an active role in shaping the future of GIST treatment.
Kandee Evans’ Story:
There are many ups and downs when it comes to participating in a clinical trial. Between traveling long distances, potential side effects, and the fear of the unknown, many patients question if the effort is worth it. For GISTer patient Kandee Evans, however, discovered that it was.
Kandee Evans’ journey with GIST, or “the rollercoaster” as she terms it, began in 2020 when she was diagnosed and subsequently underwent surgical removal. After surgery, her general oncologist gave her the option to take Gleevec, but Kandee declined as the doctor did not think it was strictly necessary.
Two years later, Kandee had severe pain in her abdomen that she thought may have been appendicitis. In reality, her GIST had returned full-force and she connected with a GIST specialist who conducted biomarker testing and prescribed Gleevec for her exon 9 mutation. Her specialist also connected her with The Life Raft Group to receive further education and support.
Unfortunately, Gleevec did not shrink Kandee’s tumors, so she was prescribed Sutent. After three months of Sutent, it was clear that Kandee’s GIST did not respond to this medication, either. When her oncologist spoke to her about starting Stivarga, a standard third-line option, Kandee became increasingly worried.
“I was scared because, you know, I had always heard there were four drugs (for GIST) and here I was, not even two years into this and I failed two. I got two left.” Kandee commented.
It was around this time that Kandee’s oncologist began discussing clinical trials. Kandee was extremely hesitant to join a trial. When her oncologist brought up the topic, she responded, “I will never, ever do a clinical trial, so this does not have to be part of our discussions.”
Kandee explained to the LRG that her main reason for avoiding clinical trials was that she would rather take medications already approved by the FDA.
The trial her oncologist was urging Kandee to consider was IDRx’s StrateGIST 1 Trial. At the time, IDRx was recruiting for Phase 1, in which patients suffering from metastatic and/or inoperable GIST would take an experimental drug called IDRx-42. IDRX-42 is a potent, oral, highly selective KIT inhibitor targeting all major categories of activating and resistance mutations in patients with KIT-mutant GIST. In preclinical studies, IDRX-42 demonstrated superior anti-tumor activity compared to imatinib, the current first-line of therapy, in GIST human xenograft models.
Kandee had the opportunity to connect with a patient on an LRG Facebook group who was already enrolled in the trial. After speaking to this patient, Kandee felt more comfortable about considering this trial It was not an easy for Kandee to get enrolled on the StrateGIST 1 trial. Kandee called every trial site in the US trying to reserve a spot and finally secured one in Miami. She is currently travels via airplane weekly to the trial site. Although everything is paid for by the trial sponsor, the constant travel has forced her to put many aspects of her life on hold. For Kandee, it is worth it because Kandee’s tumors have shrunk significantly.
“I feel fabulous.” Kandee exclaimed.
It has been worth it for many other GIST patients, as well. Phase 1 of this study has shown tumor shrinkage and confirmed partial responses across all clinically relevant KIT mutations. The company is currently recruiting for Phase 1b expansion study, in which they will further evaluate the efficacy of IDRx-42.
Kandee, stressed two key points about being a GIST patient. Number #1 is that GISTers must always stay informed on the current treatment options available and current clinical trials. Even if a patient is doing well on a drug, they must always have a “Plan B” in case that treatment becomes ineffective over time. The second point is to continually advocate for yourself. Kandee herself is no stranger to advocacy. She has been a fervent advocate since her son (now 22) was diagnosed with autism as a toddler. Her advocacy skills have been put to the test throughout her GIST journey, but she is happy that she persevered.
“Don’t give up. Never give up. Just keep fighting.” – Kandee Evans
Dr. Candace Haddox, Dana-Farber Cancer Institute and Kandee Evans teamed up to offer valuable insights into the world of clinical trials in honor of International Clinical Trials Awareness Day. Following Dr. Haddox’s presentation, there was an interactive discussion with Kandee offering firsthand experiences and perspectives. If you have any additional questions for Dr. Haddox or Kandee, please email liferaft@liferaftgroup.org.
If you are interested in a clinical trial and would like support, please reach out to patientregistrydepartment@liferaftgroup.org. The LRG has many options for peer-to-peer support as well including private discussion groups focused on specific mutations and trials, as well as online & in-person patient support groups and GIST Mentors available for patients and caregivers. We encourage you to take advantage of these resources. You are not alone, and we are here to help.
