Upper Oesophageal Cancer Treatment Options

[Cross-posting to the Oesophageal cancer forum] 

Hello all,

In June 2022 I was diagnosed with upper oesophageal squamous cell carcinoma in the post-cricoid region, with bilateral lung secondaries (T3 N1/N2 M1). So far, I’ve had two cycles of chemo (carboplatin + 5FU), eight of immuno (pembrolizumab) and one course of radio (20Gy/5fr).

The tumour in my throat has reduced in size by about 50%, but at the end of March I developed an auto-immune response to the immuno, so the plan now is to pause that for at least a month and return to chemo.

I can’t swallow at all at the moment and take all water and food via a RIG tube. That isn’t a problem, but I would really love just to be able to drink a glass of water again. The most debilitating symptom though is the incredibly sticky saliva which I have no option but to spit out at regular intervals.

I’ve been told that surgery is not an option because of the proximity of the tumour to my larynx and other structures, and that further radiotherapy could be detrimental to swallowing and/or breathing. However, my feeling is still that surgery would be the most effective if it could be achieved without too much risk.  One also reads so many stories of breakthroughs with personalised treatments / vaccines etc. - perhaps there are trials of these sorts of therapies which I should be considering.

I'd be keen to hear from anyone who has had different / more successful treatment for similar cancer – and especially anyone who has found a way of dealing with the terrible saliva!

Thank you so much for taking the time to read this post!