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Carcinoids found in my mom

Answered on August 19, 2014
Created June 29, 2011 at 8:29 PM

My mother had a carcinoid removed from her bowel a few weeks ago. Since then they have found more in her body (don't have a lot of detail, parents in Florida) via MRI and doctor told her that at this point they are not cancerous, but will do a monthly "shot" of something (didn't have name for it) as treatment to try to get rid of them. I will be going to Florida next week for 10 days and during that time i'm hoping to help with her nutrition, obviously find out more FROM the doctor (not parental version) and try to get her eating optimaly. Are there supplements recommended? Things to eat, not eat, etc. that I can at least help her with? She's 76, at this point weighs 96 pounds, (6 pounds UP from leaving the hospital), has no appetite but is trying and seems willing to listen to me. If anyone knows ANYthing about this please input. Thank you kindly in advance for whatever bits of wisdom you care to impart...i'm feeling a bit lost, worried, shattered...

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on July 27, 2011
at 11:41 PM

Octreotide is used for GH excess or ACTH excess in pituitary adenomas that are not treated surgically. Your mom may notice weight gain and achy joints when she starts. Does she flush badly on her skin? That is a sure sign of the serotonin effect as is the dumping syndrome from the gut.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on July 27, 2011
at 11:38 PM

Yes.....that is octreoitde.....sounds like a serotonin issue. Those are tough. Tell her to watch any exogenous estrogen or insulin because hi levels of serotonin supercharged the effects of both those hormones to really cause disease. Many times people with carcinoids burn out because of how serotonin burns their thyroid and adrenals up due to estrogenic and insulinogenic cellular responses.

A65499f2f8c65602881550fe309cd48c

(3501)

on June 30, 2011
at 05:47 PM

Thank you desertsnail...I'm not sure if they've even checked her for any type of gluten intolerence as of yet. (probably not). I know she LOVES bread (german, go figure) and is loathe to give it up but like I said, she's very willing to change some eating habits if it will help her. She and my dad, while older, have been very active and healthy in their lifestyle...going to the "Y" daily, walking daily, kayaking, traveling...she wants to "live" for the rest of her life, whether it's longer or shorter...That's why i'm trying to help her with her food. So it will be a help, not a hindrance.

A65499f2f8c65602881550fe309cd48c

(3501)

on June 30, 2011
at 05:44 PM

Thank you kindly for addressing this. What I got from her this morning is that she will be getting a Sandostatin injection next week, then another 2 weeks after and then monthly for an undetermined amount of time. She couldn't remember the name of the type of carcinoid so I don't have enough information to tell you. Does the sandostatin tell you anything?

696079a860ef54810406ae25e4650863

(1623)

on June 30, 2011
at 07:00 AM

Unless she's underweight due to malabsorption and is addicted to the foods that are causing it- i've run into similar issues being celiac, so that could be something to watch for...

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on June 29, 2011
at 10:00 PM

Carcinoids all secrete different hormones.....what kind of carcinoid. It matters. That also will determine what they put her on. If it was ACTH it will be octretide for example.

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3 Answers

1
77877f762c40637911396daa19b53094

(78467)

on June 29, 2011
at 09:27 PM

We have similar situations. I asked what my 95 lb father should eat to gain weight and it appears protein powder (there are some good ones) mixed with heavy cream. Also bananas. And sweet potatoes smothered in butter. Dad appears to be able to digest these well where as meat has been tough for him to eat.

Also, we put my dad on medical marijuana and eats it in lemon bars they sell at the club. They have been instrumental in increasing his appetite.

My mom had early colon cancer and couldn't eat hard foods after removing part of the intestine. Is your mom in the same condition?

0
8496289baf18c2d3e210740614dc9082

on May 10, 2012
at 03:47 PM

If it's a serotonin-secreting carcinoid (by far the most common, and treatment with octreotide suggests it is), she'll likely become niacin deficient (serotonin and niacin are made from the same tryptophan precursor), which could lead to pellagra. Pellagra is classically described as dermatitis, diarrhea, dementia, and death if untreated, but more specifically: red rash and sensitivity to sunlight, often with a swollen red tongue, hair loss, and swelling of extremities; insomnia, weakness, and confusion; hypersensitivity to light, sound, smell, and sudden movement; stumbling, hyperactive reflexes, and aggression.

Consuming foods rich in niacin (B3) and avoiding leucine (excess has been implicated in carcinoid syndrome) might help. I'm unsure about tryptophan ... it makes sense that avoiding it while consuming niacin would inhibit the creation of serotonin, but I don't know how this works out in practice. Dr. Kruse, what's your take on tryptophan intake in carcinoid? Helpful or harmful?

-1
425aa4bfb79556ed50ea693c3edd7e13

(609)

on June 29, 2011
at 09:06 PM

She's 76. At this point, your mom no doubt knows what she likes and what she doesn't and knows what works for her.

It sounds like calories is what she needs (95 lbs!) and not a whole lot else. Tell her to eat what she likes and enjoy it; no matter what she does she's at the point where the end is far closer than the beginning. A weird regiment of food management is the last thing on the list of needs.

A65499f2f8c65602881550fe309cd48c

(3501)

on June 30, 2011
at 05:47 PM

Thank you desertsnail...I'm not sure if they've even checked her for any type of gluten intolerence as of yet. (probably not). I know she LOVES bread (german, go figure) and is loathe to give it up but like I said, she's very willing to change some eating habits if it will help her. She and my dad, while older, have been very active and healthy in their lifestyle...going to the "Y" daily, walking daily, kayaking, traveling...she wants to "live" for the rest of her life, whether it's longer or shorter...That's why i'm trying to help her with her food. So it will be a help, not a hindrance.

696079a860ef54810406ae25e4650863

(1623)

on June 30, 2011
at 07:00 AM

Unless she's underweight due to malabsorption and is addicted to the foods that are causing it- i've run into similar issues being celiac, so that could be something to watch for...

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