Neck and face red flushing

In my experience... is a symptom for a NET.
I have (had) it in stomach.

Might I ask what you mean by had it in stomach? They find NET in my stomach during biopsies each year and they remove them. Been benign. But I have that facial flushing a lot. Nobody knows why.

Hello @elkeann and welcome to the NETs discussion on Mayo Connect. Facial flushing is often a symptom of carcinoid syndrome. While I have not experienced it personally, a number of members of Connect have mentioned this symptom including @newbienet, @liz925 @browndog @sophiarose @carcinoid23462 @gaylejean, who have also experienced flushing with NETs, and I hope they will share their experiences with you.
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Monthly injections of Laneotride or Octrotide are often used to control the symptoms. Has this been suggested to you? If not, you might ask your doctor about the benefits of this treatment.

You do not mention the location of your NETs. NETs are generally found in the digestive tract or the lungs. Have you had surgery or other treatment?

I had 3 NET tumors in stomach (mayor curve). The treatment was resection and after that octreotide shots, 18 doses, 1 per 4 weeks. With this treatment solved all the symptoms and inactivated the tumors, in my case.

Before the treatment two symptoms were: Red flushing cheeks and diarrhea… and a lot more.

Remember, everybody has different reactions with the NETs and with the treatment. Please be patient and trust in your oncologist.

Btw: Gastric NET, clase 2, active, with carcinoide symptoms…. that was my diagnostic 4 years ago.

The symptoms are common although some, such as myself can be a symptomatic. It is a sign that the tumor/tumors are active. The tumors release a hormone called serotonin which in excess causes the symptoms.
There are certain dietary things that set off the symptoms as well. Ask the dietitian for a list of what to avoid. Best of luck.

Hello @lupitaromero and welcome to the NETs discussion on Mayo Connect. I'm so glad that you have joined this discussion group and have been sharing information based on your experiences. I also, have had three NETs in the upper digestive tract (duodenal bulb), however, I've had no carcinoid syndrome symptoms.

If you are comfortable sharing more, when was your first NET discovered? Were you having any digestive issues at that time that led to the diagnosis?

Can you provide list of dietary foods to avoid? Also a list of medications that could increase seratonin? Thanks.

Good night Teresa
I’m very glad to share my experience with NET’s, hoping it could be useful to other people.

At the beginning, the gastroenterologist thought it was gastritis and menopause (stomach pain, diarrhea, sweating, “red cheeks”, I don’t remember the others symptoms because I confused the doctors), so he sent me an endoscopy. During the process, they found 3 “anormal tumors”, he took the biopsy and 3 weeks later the results were “NET”.

At México, there’s an hospital called INCAN, the doctor decided to send the biopsy to clasifícate the NET. The result in this investigation center was Gastric NET, clase 2, 20%, active, with carcinoid symptoms.
All of this happens between November 2018 through January 2019.
With the exactly classification, I started the treatment (Sandostatin LAR30), one shot every 4 weeks.

The first 6 months were a complete messed (severe diarrhea, cold-flu, nausea, vomiting, fever, very tired, headache, sleeping all day), just one day after each shot.

Cause Covid, the treatment take 2 years (the hospitals were full with Covid patients).

I had 3 PET CT during those years, one year each 6 months and, since 2023 yearly.

The last results (at November 2022) was: No evidence of activity 🥰😃

This is all very new to me. I was just diagnosed in December 2022. I have had 1 injection of the Octeriotide. My facial flushing seems to be getting worse. Or maybe it is that I am just noticing more often. I go for my Dotatate scan on February 1st to see where all my NET is located. So far it is just on my liver, which came back from my 2 biopsies, and Octeriotide Scan.

I found this page on another NET group I am in. I hope it helps.