In May, 2022  Memorial Day weekend to be exact, I was diagnosed with inoperable Stage 3c Anorectal Mucosal Melanoma. At the time scans of brain, abdomen, pelvis in May, June were clean. I began treatment in June, 2022 in a clinical trial at MSKCC (NCT05384496) involving twice daily oral Axitinib +  monthly infusions of nivolumab (Opdivo).  September 2022 imaging showed that my primary tumor was stable but that I had metastasis to the liver.  This was considered “progression” on study and in October, 2022 I was advanced to “triplet” therapy on the trial, which added ipilimumab (Yervoy) infusions to my regimen and increased the frequency of infusions to every 3 weeks. I have had some bumps along the way, such as immune-related hepatitis and hypothyroidism, but everything has been manageable with medication or modification of treatment regimen.  December, 2022 scans will determine next steps. If there is any further progression, I will be evaluated for acceptability for TIL expanded access or a different clinical trial.  Surgical evaluation in October revealed it was possible to resect 1.5 cm of rectal tumor with minimal impact to bowel function, although there is the possibility of bacterial contamination, which would render the sample unusable. It may be possible to extract tissue from a different tumor site, and we’ll cross that bridge if/when we come to it.  

Throughout this journey, I have managed to stay active most days.  I truly believe that movement is medicine.  I have run 3 charity 5Ks since June and am hoping to run a 10K or ½ marathon in the spring.