Questions about carcinoid treatment and diet

Hi @mwalum, welcome to the NETs group.
You can write as many characters as you want in a comment below my message here. The 70 character limit is only for the title, which I changed to "Questions about carcinoid treatment and diet" in anticipation of your questions. Let me know if you prefer a different title.

I look forward to getting to know more about you and the complexities of your situation involving carcinoid treatment and diet.

Thank you Colleen. I’m a newbie and appreciate your patience.
After almost a year of struggle searching for a diagnosis, a carcinoid tumor was located in my small intestine and surgically removed in June, 2021. Although the surgeon believed she “got it all” my symptoms continued unabated. My oncologist now feels I have another tumor(s) and/or residual carcinoid material somewhere in my body. I was started on monthly Lanreotide injections two months ago which reduced my symptoms although I have random flare ups of nausea, flushing and fatigue.
I’m wondering if my flare ups are due to my diet. I’ve read quite a bit about foods not to eat with NETs and it’s a very long list. Unfortunately the online diet advice sometimes conflicts from one website to another. My situation is complicated by the fact that I have longstanding Celiac Disease also so already am on a restrictive diet. I have consulted with nutritionists who basically recommended high calorie foods but often they recommended foods that also appear on the Carcinoid “do not eat” lists.
So I’m wondering how important complying with the Carcinoid do not eat lists really is. If I comply with the do not eat lists and my gluten free diet there is really vey little I can safely eat. I have continually lost weight over the past year (120 down to 98) and can’t seem to gain weight no matter how hard I force myself to eat.
I will appreciate any advice and reports of experience from others who may have similar diet concerns.
Thank you

Hello @mwalum and welcome to Mayo Clinic Connect's NETs discussion group. I can empathize with you because I have had three surgeries for NETs in the duodenal bulb. My appetite is not what it used to be and I manage to keep my weight around 112, but when it falls below that I do get concerned. I can see that Celiac Disease also complicates the eating process and it makes it hard to get enough calories from carbs. I try to follow a Fodmap diet which is somewhat similar to the diet for Celiac Disease.

The Carcinoid Cancer Foundation has produced many interactive videos as well as Q & A sessions that discuss diet. Here is a link to those discussions, https://www.carcinoid.org/?s=diet.

I would also like to invite you to Mayo Clinic's NETs online support group which meets virtually on the first Thursday of each month, via Zoom. It originates from the Jacksonville Mayo Clinic Campus and is facilitated by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh. This group has guest speakers every other month and then on the in-between months, there is a group session where you can ask questions of others who are dealing with NETs. You might find this a good place to get your questions answered and get some help. The week before the meetings there is usually a meeting notice/invitation posted on Connect where you can register for the meeting and you will then be sent the Zoom link.

I have not had carcinoid syndrome so I have never taken Laneotride injections. I am glad to hear that they have helped with some of your symptoms.

You say that you have met with nutritionists. Are these registered dieticians at a hospital?

Are you familiar with Boost Breeze? It is a nutritional drink that can be purchased online. It is a clear drink and comes in different fruit flavors. One member has used it and she said that the peach flavor is the best for her. It is considered gluten-free but it does contain milk.

You also said that your oncologist suspects that there may be another NET. Has a Gallium scan been done to look for other NETs?

Hello @mwalum and welcome to Mayo Clinic Connect's NETs discussion group. I can empathize with you because I have had three surgeries for NETs in the duodenal bulb. My appetite is not what it used to be and I manage to keep my weight around 112, but when it falls below that I do get concerned. I can see that Celiac Disease also complicates the eating process and it makes it hard to get enough calories from carbs. I try to follow a Fodmap diet which is somewhat similar to the diet for Celiac Disease.

The Carcinoid Cancer Foundation has produced many interactive videos as well as Q & A sessions that discuss diet. Here is a link to those discussions, https://www.carcinoid.org/?s=diet.

I would also like to invite you to Mayo Clinic's NETs online support group which meets virtually on the first Thursday of each month, via Zoom. It originates from the Jacksonville Mayo Clinic Campus and is facilitated by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh. This group has guest speakers every other month and then on the in-between months, there is a group session where you can ask questions of others who are dealing with NETs. You might find this a good place to get your questions answered and get some help. The week before the meetings there is usually a meeting notice/invitation posted on Connect where you can register for the meeting and you will then be sent the Zoom link.

I have not had carcinoid syndrome so I have never taken Laneotride injections. I am glad to hear that they have helped with some of your symptoms.

You say that you have met with nutritionists. Are these registered dieticians at a hospital?

Are you familiar with Boost Breeze? It is a nutritional drink that can be purchased online. It is a clear drink and comes in different fruit flavors. One member has used it and she said that the peach flavor is the best for her. It is considered gluten-free but it does contain milk.

You also said that your oncologist suspects that there may be another NET. Has a Gallium scan been done to look for other NETs?