Recommend next steps for non-standard treatment?

You know I've replied to your SmartPatients message on this topic. Try not to look at this as "staying on chemo until I die". It's more a case of "staying alive with chemo" until something is found that can maybe get you to NED status... or at least battle your cancer to a stalemate so that you may carry-on.

And yes, I noticed someone mentioned City of Hope up in Duarte. This is within an hour of us. You get an online consult with them... and they invite you out for a clinical trial... we'd be happy to host you for a few days to lower your expenses... pick you up at the airport etc. I know what it is like to need hope. Be well... hang tough.

Gary

don't give up, keep looking, sometimes the big and best is not the answer, prayer works, not sure how or if you believe. sometimes you just have too. .

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.

Hi Gary, bless your heart and thank you for re-phrasing this. Why can't doctors speak in the same manner, or at least soften it up a bit.

Me and my wife will be looking at City of Hope, I know a few people have mentioned this. Right now we are overwhelmed with figuring out what our criteria should even be, so sounds like we need a bit of time to figure this out.

Many thanks for offering all the things. Very kind of you.

Thank you for sharing your story.

> I would suggest, if possible that you seek additional opinions as to your particular case at other institutions

We try to, but Mayo told us they won't do virtual/video consult across state lines, because apparently docs need a license in a particular state and it's a regulatory issue (I think back then Covid rules changed this temporarily). That's why we had to drive for 2 days to Mayo in Jacksonville as opposed to just talking online. Not sure how you did consults at all these places?

> Regardless of what you may have been told in your various clinical consults, there is reason for hope.

Yes, we are trying to stay positive and embrace the suck. It's not easy and we do have bad days (often), but we're also trying to navigate this. Thank you for the encouragement.

Keep looking for western medicine solutions as you are doing. I like what Gary said about staying alive long enough for advances to come along to help (which are happening all the time).

In addition, please buy a copy of Kelly turner's book entitled "Radical Remission". No false hope here, but she outlines 9 things that people with no hope did and somehow got to NED. If you can't find the book, send me your address and I'll buy a copy for you. It's been such a great gift to me. Basically I'm hitting my tumors from every angle. I'm letting the doctor's do their chemo thing and following all of their advice. These other 9 things I'm doing myself. I feel like it's helping me in so many ways. Certainly not hurting. Keep fighting. Steve

Thank you Steve for the kind words and the recommendation. We'll check it out.