Eating and Esophageal Cancer: Anorexia 18 months after Ivor Lewis

Posted by manz @manz, May 13, 2023

I’m a cancer survivor for 18 months now. I had my j tube removed 3 months after surgery and maintained my weight for a year no problem. Now my weight has dropped another 15 lbs. and can’t gain it back.
I’m able to eat but I have an issue that feels like my esophagus closes up ( it doesn’t) and right after it’s nausea or vomiting. I’ve been diagnosed with anorexia because I can’t get the nutrition I need. It seems to happen when I’m in a stressful situation or a negative thought and most of the time it happens when I’m not eating. Has anyone else gone through this, is it possible that my brain is causing this? At a loss here and tired of losing the food- weight loss game!

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Wow, @manz. I'm so sorry that your inability to keep food down has led to the diagnosis of anorexia. I'm tagging fellow members like @sjw6358 @edward40 @cbnova @atafitness @socalkelly to share their experiences.

Manz, you mention that you are especially prone to nausea and vomiting when you are stressed or have negative thoughts, not necessarily when you are eating.

Have you thought of working with an oncology social worker or therapy on mindfulness or cognitive behavior tactics to help?

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@colleenyoung

Wow, @manz. I'm so sorry that your inability to keep food down has led to the diagnosis of anorexia. I'm tagging fellow members like @sjw6358 @edward40 @cbnova @atafitness @socalkelly to share their experiences.

Manz, you mention that you are especially prone to nausea and vomiting when you are stressed or have negative thoughts, not necessarily when you are eating.

Have you thought of working with an oncology social worker or therapy on mindfulness or cognitive behavior tactics to help?

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A guide to meditation-netflix

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So sorry to hear. Perhaps combining Zofran with your food would help with the nausea/vomiting. My husband had chemo/radiation and as a result had lots of scar tissue in his remaining esophagus (had esophagectomy that removed most of his esophagus). After several scopes and “stretching” the gastroenterologist put a stent in his esophagus. Took a bit to get used to, but once he did, it’s made all the difference in his eating.
Be sure to sit-up while eating and try a short distance walk post eating. Might help settle the food. Good luck!

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@colleenyoung

Wow, @manz. I'm so sorry that your inability to keep food down has led to the diagnosis of anorexia. I'm tagging fellow members like @sjw6358 @edward40 @cbnova @atafitness @socalkelly to share their experiences.

Manz, you mention that you are especially prone to nausea and vomiting when you are stressed or have negative thoughts, not necessarily when you are eating.

Have you thought of working with an oncology social worker or therapy on mindfulness or cognitive behavior tactics to help?

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I’m interested in the oncology social worker and seeing if my medical system has one?

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@manz

I’m interested in the oncology social worker and seeing if my medical system has one?

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@manz, did you find out about an oncology social worker at your medical system?

Here's more information:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

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Hi. I am 2.5 years cancer free. When I entered the hospital for surgery I was 135 lbs. I now weigh 89. I just gained 3. No matter what I eat I can't seem to gain. I have to be careful what I eat because I will aspirate at night if something irritates my stomach. I'm caught between a rock and a hard place. Nobody has suggested anything which could help, so if someone else is/had the same issue I would welcome their suggestion. Just be positive and try to have some fun. Take care.

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I definitely understand your problem and know how it feels to not get an answer, reason or diagnosis. After lot of reading and personal research I’m starting to believe my issue may be psychological in nature. I’m seeing a new primary on the 12th. Hopefully a new set of eyes and ears. Frustrated with my cancer team to say the least. Hoping you feel better and find the answers to your issues. Do you do tube feedings not something I don’t want to do again but I’m pretty lost for other options

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Finally signs of change. Couldn’t get anything from Mayo and nothing except guessing from my oncology team and can’t get in to see a psychologist. Hadn’t given up but continued weight loss down to 115. Now the good news had the feed tube put back in and the feed tube has given me assurance I’m getting the nutrition, hydration and calories I was not getting. I have a new primary Nurse Practitioner and she listened to me. Wow what a contrast. Anyway we adjusted my anti depressant and added olanzapine for nausea. In 42 days with tube feeding while I sleep and the olanzapine has made me hungry, thirsty and sleep better. I eat and snack orally during the day. Results higher energy level no major anxiety and 19 lbs weight gain. As well I’m able to try and eat foods I haven’t ate in 2 years since my cancer diagnosis and feeling great.
I read way-too many negative posts about feed tubes. Having mine put back in was life saving. I’ve got my life back and hoping this upward spiral lasts.
Don’t never give up, I was about too. My prayers were answered through a new set of eyes and a listening ear of a Nurse Practitioner. Probably won’t be on this sight much longer. Hope my case helps someone else and praying for all on this support sight. God Bless you all!!

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@manz

Finally signs of change. Couldn’t get anything from Mayo and nothing except guessing from my oncology team and can’t get in to see a psychologist. Hadn’t given up but continued weight loss down to 115. Now the good news had the feed tube put back in and the feed tube has given me assurance I’m getting the nutrition, hydration and calories I was not getting. I have a new primary Nurse Practitioner and she listened to me. Wow what a contrast. Anyway we adjusted my anti depressant and added olanzapine for nausea. In 42 days with tube feeding while I sleep and the olanzapine has made me hungry, thirsty and sleep better. I eat and snack orally during the day. Results higher energy level no major anxiety and 19 lbs weight gain. As well I’m able to try and eat foods I haven’t ate in 2 years since my cancer diagnosis and feeling great.
I read way-too many negative posts about feed tubes. Having mine put back in was life saving. I’ve got my life back and hoping this upward spiral lasts.
Don’t never give up, I was about too. My prayers were answered through a new set of eyes and a listening ear of a Nurse Practitioner. Probably won’t be on this sight much longer. Hope my case helps someone else and praying for all on this support sight. God Bless you all!!

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This is great news, @manz. I’m grateful you returned to share your update and success with a feeding tube.

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