Any advice for eating with esophageal cancer during chemo?

Very tough... I remember those days well. Wish he had a J tube... any reason he does not? But when I counsel others... I know there are usually 3 things that work against us EC patients with regards to eating and taking in nutrition. And they are loss of ability to swallow, loss of appetite due to loss of taste buds, nausea, whatever... and then there's vomiting due to being sick from our treatments. But it is important for us patients to have a new mindset on our long EC journeys. For maybe 6 months to a year, eating is no longer a pleasurable activity. Should we survive, this will come back... but... it's going to be awhile. And if one can not swallow (I've been there myself, when even a tiny sip of water won't go down and had to bring it back up) then it's over, you must take in calories and hydration thru TPN, J tube, or G tube (or a combination thereof). As I've counseled hundreds now, it's amazing just how many I've talked to who haven't eaten in a few days... and I'm screaming at them over the phone What are you waiting for!!?? Get in now and get a J tube or whatever. Most of us do take in extra hydration during our infusions... but taking in calories... is critical to us surviving our long journeys. And I've seen numerous times when no one seems to notice our weight loss! Even more stunning when they weigh us every time we go in for treatments. The reason is simple... our many doctors are rarely there when we go in for chemo, or radiation, or immunotherapy. They don't lay eyes on us often enough. I swear to God, just a few months ago, we had a guy on our weekly Zoom calls, we had been counseling him since January... we said Hey John (not his real name), you don't look to good... how much you weigh now? He was at 98 lbs, down from 150 originally, and down from 127 from two months earlier. We screamed at him to get a feeding tube the very next day. First he penned a letter into MyChart and also separate emails... to each of 4 doctors... his chemo oncologist, radiation oncologist, his thoracic surgeon and his GI doctor... explaining his situation and how he had brought up a J tube before, but was always told he was not yet in need. Now he was officially documenting his condition, and holding his many doctors accountable! He didn't get a J tube the next day, but it did go in within 3 days. And he was a surgery candidate... but now they wouldn't do his esophagectomy until he got back over 115 lbs! Well HELLO!! Anyone out there!?

So I constantly remind new patients I'm counseling that just because you have many doctors, and treatments are underway, or you're in the downtime between treatments and surgery... DON'T think your doctors have a clue what's going on with YOU! You are one of a hundred patients to each of these doctors... YOU must keep an eye on yourself and bring things to their attention... all along your journey. And btw... I would day that I've had at least 5 or 6 with very similar stories to John's... where I screamed at them to stop talking to me and get in and get J or G tubes pronto. All but one did... the other was quickly given a stretch, which got her to her esophagectomy. I was not happy about that one, but she was in a remote location in Canada, but it worked enough since her esophagectomy was less than two weeks away.

So... bottom line... do all you can to shove in calories, even if the desire isn't there... even if food tastes like cardboard... you're eating to survive, for the time being. One day eating will become a pleasurable activity once again. Hang in there! Much love to you all...

Gary

@mrgvw thanks Gary, unfortunately your experience sounds all too familiar. He's probably lost about 70lbs if not more. The only explanation I get for him not having a FT is because his oncologist says it isn't time yet. Since she doesn't say he needs one he is comfortable with that, says if the doctor said he doesn't need it he doesn't need it.