Lori

I am a 4 yr+ stage 4 ESCC survivor. Everyone's course of disease is different. In my case, I underwent successive rounds of focused high intensity radio therapy followed by an initial 6 rounds of FOLFOX. I had a good initial clinical response with near total ablation of my esophageal lesions and medialstinal nodes. Due to my age and existing comorbidities, I was told by the onco-thoracic surgeons I that I was not acceptable candidate for surgery and that I should resume chemotherapy when my diseased progessed.

And so I did. After 5 rounds, PET and CT-MIPs scans reveal progesion of my disease with mets to both kidneys, my left shoulder blade, and left humerous. I resumed FOLFOX therapy with the addition of Keytruda. Unfortunately, after three doses of Keytruda, it triggered an adverse reaction by reactivating my pre-existing MS. This led to an immediate discontiuation of therapy and a two month stay in the hospital and a rehabilitation facility. Fortunately, my scans before discharge demonstrated that I had a very good clinical response with greater than 80% shrinkage of the existing lesions.

After being discharged to palliative home care, I was advised to take a break from chemotherapy to allow me to recover from my debilitated state. During my stays in the hospital and rehab, I had developed severe radiotherapy induced esophageal strictures and was rendered unable to ingest solid foods. Despite having a G-tube placed, I lost considerable body weight and muscle. After a 3 month hiatus, I resumed chemo using a reduced intensity regimen of folinic acid and 5 FU. Repeat scans after 5 rounds showed modest progression of my disease so I resumed full intensity chemo with FOLFOX. After 5 rounds of FOLFOX, I was switched to FOLFIRI as the oxyplatin exacerbated my pre-existing MS related neuoropathy and my mobility.

My last last 3 CT-MIPs scan showed a complete clinical response with resolution of all renal and bone mets as well as all mediastinal and retro-peritoneal and abdominal nodes. As I am tolerating my current FOLFIRI regimen, our plan is to continue this therapy indefinitely. I still have my G-tube in place but have recently undergone a series of pneumatic dilations by my onco-thoracic surgeon whowas able to dilate my lower esophageal opening to approximately 18 mm. The results of the dilations, while transient, are nothing short of remarkable. I had endured over two years of being totally non-po during which, I was unable to swallow my own oral and nasal secretions. Now I am able to consume softer foods i wish as well as certain sea foods and ground meats dishes with little issues provided I eat smaller portions, take small bites, chew them well, and chase each bite with small sips of liquids to help with dilution and lubrication and prevent the occurrence impactions. When impactions occasionally occur, usually with breads or crackers,/ I find that the carbonic acid content obtained by consumption of a few ounces of Coke or another carbonated cola will help emulsify the impacted food bolus after 10 -30 minute and clear the obstruction. If not cleared within 12 hrs a trip to the ER may be required.

Thus, if surgery is not a viable option perhaps a G-tube are esophageal dilation are. I would encourage you to discuss these options with your care team. In the mean time, it's critical that you maintain a positive mental attitude and become a fierce advocate for access to the best available therapeutic avaialable therapies for your disease.

I wish you well in your journey with our fellow traveller.