1. < Neuroendocrine Tumors (NETs)

I am one year out with my diagnosis just finished 4th round of PRRT

Posted by nevinrbaskin @nevinrbaskin, Jan 10 7:54am

It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of my small bowel and hernia surgery finally on the mends. Just finished 4th round of PRRT. I am feeling nauseous daily and fatigued. I try and live in the moment as I can get lots of anxiety from the uncertainty surrounding my health. I found this thread and reading some messages sent me off the edge emotionally. I am fine. It’s just hard to get used to the emotional roller coaster.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

ericnjeffrey | @ericnjeffrey | Jan 19 5:06pm
In reply to @ericnjeffrey "I am sorry you have had such a hard year. I have a question. After your..." + (show)
@ericnjeffrey

I am sorry you have had such a hard year. I have a question. After your resection did you have any mestastitis? Or was the resection for just the one tumor? What grade was your tumor? The reason I am asking is your symtpoms sound like you had carcinoid/functional NET tumor. And your symptoms continued after the tumor was removed?

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I didn’t have symptoms until I had a colonoscopy in November. I had bloating and felt full easily. I lost 12 pounds. 5 weeks after the colonoscopy I had a colon resection. I only had one tumor. Grade 1. No mets. The bloating is better. My appetite is better. I haven’t had any additional weight loss.

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1 reply
mimighosh | @mimighosh | Jan 19 5:32pm

Hi
My husband has a similar situation. He was diagnosed last March with a grade 1, stage 4 NET with primary in the small intestine. There is a tumor in the mesentery and one in the pericardium. He has not had any surgery yet and has been stable on once a month Lanreotide injection. I was wondering if your doctor suggested PRRT right from the start, or whether you have tried Lanreotide or Ocreotide?

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1 reply
nevinrbaskin | @nevinrbaskin | Jan 19 6:28pm
In reply to @ericnjeffrey "I didn’t have symptoms until I had a colonoscopy in November. I had bloating and felt..." + (show)
@ericnjeffrey

I didn’t have symptoms until I had a colonoscopy in November. I had bloating and felt full easily. I lost 12 pounds. 5 weeks after the colonoscopy I had a colon resection. I only had one tumor. Grade 1. No mets. The bloating is better. My appetite is better. I haven’t had any additional weight loss.

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That’s great you’re doing better, I had a lot of symptoms bloating, severe fatigue and stomach pain for a few years passed off as gastritis but was actually my small intestines had two tumors that they removed with two feet of my small intestines which helped with some of that.. still get a lot of gurgling when I lay down and have to eat small portions and adhere to a healthy low fat diet staying away from food with high amines

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2 replies
nevinrbaskin | @nevinrbaskin | Jan 19 6:36pm
In reply to @mimighosh "Hi My husband has a similar situation. He was diagnosed last March with a grade 1,..." + (show)
@mimighosh

Hi
My husband has a similar situation. He was diagnosed last March with a grade 1, stage 4 NET with primary in the small intestine. There is a tumor in the mesentery and one in the pericardium. He has not had any surgery yet and has been stable on once a month Lanreotide injection. I was wondering if your doctor suggested PRRT right from the start, or whether you have tried Lanreotide or Ocreotide?

Jump to this post

I went to 2 local oncologists, 1 at Penn Medicine and 1 at Dana Farber. The 1 local oncologist suggested PRRT, but the tumor board said no. I started on Octreotide and the Landreotide starting in Jan 2024. I saw Dr Wolin, leading Dr in NET research and treatment at Mt Sinai. Dr Wolin recommended PRRT sooner than later to shrink the tumor in the mesentery which was pressing on the mesentery vein and artery.

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ericnjeffrey | @ericnjeffrey | Jan 19 8:42pm
In reply to @nevinrbaskin "That’s great you’re doing better, I had a lot of symptoms bloating, severe fatigue and stomach..." + (show)
@nevinrbaskin

That’s great you’re doing better, I had a lot of symptoms bloating, severe fatigue and stomach pain for a few years passed off as gastritis but was actually my small intestines had two tumors that they removed with two feet of my small intestines which helped with some of that.. still get a lot of gurgling when I lay down and have to eat small portions and adhere to a healthy low fat diet staying away from food with high amines

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What grade were your 2 tumors originally?

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1 reply
ericnjeffrey | @ericnjeffrey | Jan 19 8:44pm
In reply to @nevinrbaskin "That’s great you’re doing better, I had a lot of symptoms bloating, severe fatigue and stomach..." + (show)
@nevinrbaskin

That’s great you’re doing better, I had a lot of symptoms bloating, severe fatigue and stomach pain for a few years passed off as gastritis but was actually my small intestines had two tumors that they removed with two feet of my small intestines which helped with some of that.. still get a lot of gurgling when I lay down and have to eat small portions and adhere to a healthy low fat diet staying away from food with high amines

Jump to this post

How long ago was part of your small intestine removed?

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2 replies
nevinrbaskin | @nevinrbaskin | Jan 19 9:20pm
In reply to @ericnjeffrey "What grade were your 2 tumors originally?" + (show)
@ericnjeffrey

What grade were your 2 tumors originally?

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Grade 1 stage 4

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nevinrbaskin | @nevinrbaskin | Jan 19 9:20pm
In reply to @ericnjeffrey "How long ago was part of your small intestine removed?" + (show)
@ericnjeffrey

How long ago was part of your small intestine removed?

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12/24

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ericnjeffrey | @ericnjeffrey | Jan 20 5:53am
In reply to @ericnjeffrey "How long ago was part of your small intestine removed?" + (show)
@ericnjeffrey

How long ago was part of your small intestine removed?

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3 weeks

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