I would suggest, if possible that you seek additional opinions as to your particular case at other institutions such as MSK, MD Anderson John Hopkins Kimmel Cancer Center or Duke Cancer Center. I assume you've had molecular characterization of the biopsies of your primary tumor and/or metastises performed. The institution I listed above, like Mayo, are centers of excellence in the treatment of esophageal cancer. I've had consults with each of them re the most appropriate treatments of my Stage 4 ESCC (diagnosed Dec. 2019). Unfortunately, due to my age and excessive comorbidity burden, I was not deemed an appropriate candidate for surgery or inclusion in ongoing clinical trials. S/ubsequntly, I under went a regimen of focused high intensity radio therapy for tumor deburdening followed by multiple cycles of FOLFOX chemo therapy at Duke University Cancer Center.

My initial clinical response was good, but I still had evidence of residual disease. The immuno-oncology agent, Keytruda was added to my FOLFOX chemo regimen. Unfortunately, I experienced an adverse reaction to Keytruda after my third dose that required 3 months hospitalization and rehabilitation. On the upside, even though I was off chemo for the entireity of my hopitalization and rehab, my discharge scans showed that Keytruda seemed to have improve my clinical response.

When I was sufficiently recovered, I resumed chemo with FOLFIRI to mitigate my neutropenia and worsening neuropathy. I'm still recieving low dose FOLFIRI as maintenance therapy. Thus far, have maintained a sustained good clinical respone with this regimen. The results of my last scans showed no evidence of disease.

If my scanswhich are scheduled for mid September show NED, we plan to discontinue chemo and just do quarterly surveillance scans. If there is a recurrence of disease, we will explore other oncogene targeted small molecule therapies that are currently avaiable.

Regardless of what you may have been told in your various clinical consults, there is reason for hope. There are new targeted therapies for EC that are in clinical development. In the interim, you have to embrace the suck. While difficult, you must also maintain a positive mental attitude and not give into dispair. Resolve to own your disease, not let it own you.