Any advice for eating with esophageal cancer during chemo?

During my treatment for esophageal cancer, I lost all appitite for eating for months and lost 20 pounds. The solution was to have feeding tube installed and to take 6 ISOSOURCE canisters per day which provided the needed calories and protein. I'm now cancer free and my appitite is back full strength. Have the docs talked about getting a feeding tube?

It has been talked about, but the doctors say it isn't time for a feeding tube. They just keep telling him to eat whatever he can, and take a bite of something every 10 minutes.

I could not eat even once a day let alone every 10 minutes.
One of my favorite inventions for monitoring weight is my talking scale. You can order one on Amazon for about $40. You step on the scale and it tells you your weight without having to look at anything. I have low vision so it really helps. After a couple of days, you can tell your docs how much you are losing per day. Can you ask your docs when they think the time for a feeding tube will come? If they don't have a reasonable answer, then you might want to look for a second opinion.

One of the first things that The G.I. doctor did upon diagnosis of my husbands 8 cm tumor in his lower esophagus was put in a PEG tube. The first three weeks of chemo as well as the few weeks prior to starting chemo, my husband felt like perhaps he jumped the gun too soon on the PEG tube. Then, as chemo and radiation started into the third and fourth week, he couldn’t drink the protein drinks anymore. He couldn’t swallow any more information had Increased too much. That was approximately mid June. He has been feeding himself with Jevity through the PEG tube ever since. Even though he did bolus feedings, as well as his medicine for nausea and pain through the PEG tube, he has found it much more advantageous to have the continuous pump. He gets 6 to 7 boxes of Jevity in per day. Which holds his calories up and his weight up. Your dad might want to consider this so that even if he doesn’t have an appetite, he’s being fed and nourished, and his weight will maintain.
Praying for the best solution for him. Take care now.
Patti

Is he taking something for the acid reflux? Protonix twice a day allows my husband to eat. Stage 4 and has not lost any weight! Appetite has not been impacted by the disease, chemo or immunotherapy.

Yes, he also take protonix.

I was diagnosed with esophageal cancer in December 2022. Before radiation the radiologist had me meet with a dietitian and went over what I should eat during radiation.Eat normally as long as I was comfortable. After the radiation burned my esophagus. I was to eat normally until solid food was painful I then consumed shakes made with heavy cream, protein powder and fruit. I was able to maintain my weight throughout my treatment.

Hope you can share a recipe. More people should have nutrition consultation proactively

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

1 cup cream 1cup 1/2 & 1/2. One or more cup fruit of, choice. 1/4-1/2 cups vanilla protein powder. add some ice cubes and slenderize until smooth.Drink several times a day to help maintain weight.