Anorexia & nausea 3 months after esophagectomy
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.
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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.
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!
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.
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...
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.