The Connective Tissue Oncology Society (CTOS) meeting was held Nov 18-21st and was chaired by three women in the field: Dr. Silvia Stacchiotti, Dr. Margaret von Mehren, and Dr. Inga-Marie Schaefer. Not only was this year’s meeting special because it was held virtually due to COVID-19, but I had the honor of being invited to speak on a GIST panel of experts with global key opinion leaders. One of the new aims of the CTOS organization is to incorporate the patient perspective in more of its sessions. It was exciting to have the Life Raft Group as a new seat at the table.
The GIST Expert Panel resembled a tumor board with a multidisciplinary team commenting on three unique cases.
The first case was about a 40-year-old female with a large gastric lesion. This case brought up relevant topics such as staging and risk classification, treatment dosing and follow-up. When the patient became pregnant, the discussion turned to choices such as pregnancy interruption versus imatinib interruption. There are case studies in the literature about pregnant CML and GIST patients but discussing with a multidisciplinary team is critical to weigh in on such an important decision for the mother and child. The presenter was happy to report that the patient delivered a healthy baby after interrupting imatinib during pregnancy. Further follow-up procedures were discussed.
Case two involved a 62-year-old male with a 5 cm tumor adjacent to the gastric-esophagus junction with a mitotic rate of 8/50 HPF. After emergency surgery with clear margins, he was identified to have a Kit 11 mutation with deletion 557-559. This case demonstrated how important it is to look at the risk of recurrence for such a patient to determine adjuvant therapy. The 557-559 deletion puts this patient at high risk for a recurrence. Indeed, the patient had one a couple of years after initial surgery. As the case unfolded, discussions centered around which medication, dosage, surgery and/or radiotherapy were options to help with progression.
Lastly, case three was a 63-year-old male with metastatic GIST who progressed on imatinib, sunitinib, and regorafenib. It was clever to watch how the physicians were strategic about dosing and combining radiotherapy to help when one lesion showed progressive disease but other lesions were stable. The patient was able to benefit from 8 years of regorafenib with careful management from his clinical team.
Taking a step back and assessing this experience, it was a humbling moment to be asked to sit at the same virtual “table” as my medical colleagues. Each of them has a set of unique experiences that bring much value to the discussion. As a patient advocate, it was important to share the learnings I have gathered over the years helping patients such as advocating for mutational testing, monitoring side effects on different doses of medication, but also emphasizing the importance of being seen by an expert.