Anorexia & nausea 3 months after esophagectomy

Posted by caregivernle @caregivernle, Jul 1, 2023

I am a remote support caregiver for my best friend. I live in FL and he lives in. NYC. He is 58 and was diagnosed w/squamous esophageal cancer in his upper esophagus, without nodal spread in Jan 2023, and received an esophagectomy in March 2023 at NYU. He had a terrible side effect requiring a tracheostomy because his vocal cords would not close. But this has resolved and he got the trach out a month ago. However he has extreme anorexia and nausea. Even the idea of eating makes him feel nauseated. He's already been hospitalized once because he wasn't eating enough. He's on the verge of going back in for the same reason and fears this and fears needing a feeding tube. Doctors prescribed a medication for him to improve his appetite but it's not working, and he's feeling defeated and fatalistic that he'll ever be able to eat again without feeling sick to his stomach. He's agreed to let me try to help him solve this problem because he's not one for joining support groups...he's a little stubborn that way.

I was thinking that perhaps a special medical cannabis formula might be an option. He does get the munchies, but he hates feeling stoned, and he'd rather not smoke it, obviously. he says edibles don't give him any control over dosage and he still feels too stoned. I have no way of knowing how to find the right resource with the right expertise. Also, if there are any other options for him that have worked for others, it would be great to know. Thank you for any help and advice you can give.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

@caregivernle

I am possibly using the word "anorexia" as shorthand for just having no appetite at all. No hunger at all. No motivation to eat or to want to eat. On top of that, he has constant nausea whether he eats or not. And even if he drinks just a little Boost or Ensure, he feels extremely sick, and this is true every time he eats anything at all. I apologize if I'm using the term anorexia incorrectly and maybe I can and should find a different term that doesn't include the implications about deliberately intending weight loss, etc., which he isn't doing. And thanks for asking for a clarification. I didn't realize it meant more than just "not wanting to eat" and so I'm wrong there. [EDIT: I just Googled "medical term for no appetite" and saw this: "The medical term for a loss of appetite is anorexia." So I guess it also means just not wanting to eat.]

I posted here hoping to see if there was anyone else with direct experience with this and had a suggestion about what could work. I can't poke or prod his "team" at NYU unfortunately. But I can make suggestions to my friend to carry in to his meetings with doctors or to make special appointments to address these concerns. His brother has recommended a feeding tube and there are a few folks here who have supported this idea. So if I can call him and let him know it might make a difference and give him examples of people who it has helped and how, it might motivate him to actually let them do it.

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I have been working with a hepatobiliary dietician after my pancreatic surgery and this has been very helpful. I joined this discussion group because my sister has esophageal cancer, undergoing initial phase of treatment. Perhaps there is a specialty dietician at NYU for esophageal cancer patients that might be helpful.

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@mrgvw

Alright... I'll assume my help is not needed... all good with me. But I've typed a thousand novels already... just easier to cover so much ground by talking... and I've talked with hundreds now, by phone, by Zoom, by FB video messenger. Just easier to convey a thousand times more info and questions back and forth. But your choice.

I'll end by saying that yes... with the vagus nerves severed... his insides and digestive process are lost... and it's going to be some time before his body rewires itself to get things going back in the right direction. I'll assume he was stage 1 since he went straight to surgery... that is nice. And if true, the odds of him seeing his EC again are very small... and not like us stage 3's and 4's. I'm in the statistical group that only 20% of us will make it to 5 years post-op. But at 3 years now, my odds are improving.

And yes... the first year post-op we all tend to eat a bit robotically... things are not the same as before cancer. But one day eating will once again become pleasurable... i promise. Just gonna be another year or so. We eat smaller amounts and more often. We eat to survive for now and force our bodies to make the necessary changes. So he won't feel hunger like he used to... but that will change as the months and years roll by. I couldn't swallow peas in my broth at 6 months post-op... but my throat (at the anastomosis), was crazy tight. After 4 stretches over 4 months... I got back to fairly normal. And I can now sit and eat a McDonald's sausage Mcmuffin and the hash browns and drink most of the orange juice... all in one 15 minute sitting. Crazy I know, when I think back to not being able to swallow peas, even if I chewed them!

So... 4 months post-op is still crazy early on. I just kept shoveling food in... and let my body slowly figure things out. Because I wasn't changing! So my tummy hurt a lot, for a long time. And my ass exploded a lot and it seemed like softer poops and diarrhea for like forever. But things slowly changed. So you don't get depressed... you hang in there... and wait for it. It is a tough journey.

Guess we're done now... CAUSE I HATE TYPING!

Be well.

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I am sooo sorry you hate typing because your message was so good and so important. Thank you so very much! It is not really my choice whether to talk offline from here, it's his. And what is great about a written message is that I can copy and paste it and send it to him. He won't come here, and he won't talk with anyone in a support group. It's just his nature. He's kind of like a curmudgeonly yet lovable Larry David type guy and so you can imagine Larry David doing that...just not happening...lol! Yes he was stage one and was fortunate for that. There were some cells in the lymphatic system adjacent to the esophagus so I don't know if they re-graded him beyond a 1 for that. And I hadn't even thought about vagus nerves being affected in the surgery, that does make sense regarding the digestive problems. He won't be happy to hear he has to endure this for a year or more, though. He was readmitted to the hospital on Sunday due to the anorexia and I'm awaiting news about how he's doing. I hope they give him a feeding tube because otherwise he'd just be back again in a month in the same boat. And I will definitely relay to him your info when he is stabilized and back home, hopefully in just a few days. Again, thank you SO much for your generous knowledge and I wish you the very best in conquering this disease. There are miraculous new discoveries every day so it's very possible for that combined with your positive nature that you will beat the odds. Have a wonderful day!

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@gardenlady1116

I have been working with a hepatobiliary dietician after my pancreatic surgery and this has been very helpful. I joined this discussion group because my sister has esophageal cancer, undergoing initial phase of treatment. Perhaps there is a specialty dietician at NYU for esophageal cancer patients that might be helpful.

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He has seen that person, but they weren't very helpful for this exact problem. However he's back in the hospital now and I assume he'll see all members of his team, including the dietician. I'm hoping for the best.

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@caregivernle

I am sooo sorry you hate typing because your message was so good and so important. Thank you so very much! It is not really my choice whether to talk offline from here, it's his. And what is great about a written message is that I can copy and paste it and send it to him. He won't come here, and he won't talk with anyone in a support group. It's just his nature. He's kind of like a curmudgeonly yet lovable Larry David type guy and so you can imagine Larry David doing that...just not happening...lol! Yes he was stage one and was fortunate for that. There were some cells in the lymphatic system adjacent to the esophagus so I don't know if they re-graded him beyond a 1 for that. And I hadn't even thought about vagus nerves being affected in the surgery, that does make sense regarding the digestive problems. He won't be happy to hear he has to endure this for a year or more, though. He was readmitted to the hospital on Sunday due to the anorexia and I'm awaiting news about how he's doing. I hope they give him a feeding tube because otherwise he'd just be back again in a month in the same boat. And I will definitely relay to him your info when he is stabilized and back home, hopefully in just a few days. Again, thank you SO much for your generous knowledge and I wish you the very best in conquering this disease. There are miraculous new discoveries every day so it's very possible for that combined with your positive nature that you will beat the odds. Have a wonderful day!

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You've heard of tough love? You don't ask... you tell. Believe me, in the hundreds I've talked to, I've come across many like him. But this ain't a sprained ankle... it's a tough journey ahead, whether stage 1 or stage 4.

But, as they say... you can lead a horse to water...

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I just wanted to mention that the tube feeding can help you manage your nutrition during the time you have difficulty eating. I had a j-tube for a couple months after my esophagectomy. It wasn’t something I’d like to do again, but it certainly helped. I was fortunate to have my husband help with the tube set up & feedings until I felt confident enough to do it myself. I resisted taking meds for nausea & other GI issues because I thought I could do without, but now I see Zofran as my go-to drug of choice. It reliably manages my nausea within 30 minutes, which makes me feel so much better! I’m one year & 3 months past the surgery & am doing much better - diarrhea is much less frequent, still some constipation, nausea almost daily - but I have learned to use the medicines to keep things under control, and have learned thru trial & error that 6 small meals work better than large meals.

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