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Feb 15, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

Pretty much constant nausea; extreme, debilitating fatigue; right sided abdominal pain. First two went away after my first shot. Thry came back this month so I am going to ask them to up the dose, which they started pretty low…

Feb 14, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

The specialist I saw at Iowa, Dr Dillon, is in the same clinic as the Drs. O’Dorisio — this is the team that found pancreastatin levels to be a better prognosticator than the other things people check for (Chromagranin A, HIAA, etc.) — here’s an article free online that describes their research into this particular marker–

They write: “Higher pancreastatin levels are significantly associated with worse PFS and OS in SBNETs and PNETs. This effect is independent of age, primary tumor site, and presence of nodal or metastatic disease. Pancreastatin provides valuable prognostic information and identifies surgical patients at high risk of recurrence who could benefit most from novel therapies.”

So I guess you could say I was getting this advice from the experts 🙂

Feb 14, 2017 · My Husband was newly diagnosed with Carcinoid Cancer in Neuroendocrine Tumors (NETs)

My experience is rather like your husband’s only many less tumors found during surgery. I have never had carcinoid syndrome and am not having it now (small bowel resection and diagnosis were in Dec 2015). My local oncologist also did not see a need to do anything after the surgery and I had a normal CT scan so that seemed reasonable, but the symptoms I had before the surgery and subsequent diagnosis never went away!! So I requested a referral to a NET specialist out of state, met with him, he recommended ga-68 scan and that showed diffuse uptake but no tumors. He also recommended a pancreastatin test. It was >350. Based on those two findings NET guy said I should try Sandostatin. If it works, he said, We will know. Symptoms mostly went away overnight and pancreastatin levels plummeted back down again. So… I am the poster child for “symptoms count…” and I would definitely get a pancreastatin check…

Feb 1, 2017 · The role of Tumor Marker Labs in Neuroendocrine Tumors (NETs)

I can relate to a little of this, Jenchaney — I am a multifocal SiNET patient and the staging was close to yours when they found 5 tumors in my small intestine in Dec. 2015. Unlike you I have never had any signs of carcinoid syndrome and unlike you my lymph nodes were clear. However, after those 5 tumors were removed my symptoms (extreme fatigue like yours and constant nausea) persisted just as if nothing had been done at all. The local oncologist actually referred me back to the GI specialists AGAIN post-NET diagnosis because she was so convinced there was another diagnosis in the works.

I asked for a referral to a NET specialist (there is none in my very small health provider network) and that NET specialist was equally puzzled but suggested a Gallium-68 scan based on my symptoms. That scan showed diffuse uptake in the pancreas and duodenum but no focalization, meaning no evident tumors OR tumors too small to see. I *also* had skyrocketing pancreastatin levels — 350-something — which was the only unusual lab value of the bunch. Chromagranin-A normal, HIAA normal. Just the pancreastatin. To further confuse things, the NET specialist said himself that high blood sugar could result in high pancreastatin levels, and I have been borderline blood sugar for a little while — not diabetic but in the “pre” range which is controversial. So the NET specialist himself was not sure the pancreastatin levels actually meant anything.

FWIW, the NET specialist recommended putting me on Octreotide to see if my symptoms responded to it. ‘If they do,’ he said, ‘We’ll know something.” The day after my first shot (Sandostatin LAR, not short-acting because I had allergic responses to the short-acting) … 2/3 of my symptoms resolved AND when my pancreastatin levels were checked the following month, they had plummeted down to 51 from 350-something. So very clearly, the pancreastatin levels did in fact speak to the NET, not blood sugar levels; also very clearly, there is something going on in there, but something way too small to see.

I offer this as a reason to get a Ga-68 scan. Nobody but the surgeon’s ever seen my tumors. But they were making me really, really sick! Do you know if you are a multifocal case? From the medical literature I’m devouring, it seems that 25% of small intestine NETters have multiple tumors; I do not know anything about large intestine NETters.

Jan 20, 2017 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

Yes, every 28 days. I cannot even feel the injection. It was only after I had the Ga68 scan in October that anybody reluctantly admitted I might still have tumors present. The specialist at Iowa said to try the Octreotide–and if it dealt with my symptoms, that gave us our answer!

Jan 20, 2017 · Welcome to the NETs Group! Come say hi. in Neuroendocrine Tumors (NETs)

Nice to see another group! I started on long-acting Octreotide at the end of November and am doing really has been a miracle drug for me–fatigue and nausea completely gone. I never did the self-injection because my first two tries of that produced a mild allergic reaction–which the hospital pharmacist has seen more with the short-acting than the long.

Nov 10, 2016 · Treatments for Carcinoids in Neuroendocrine Tumors (NETs)

Actually, Teresa, the flushing and diarrhea are not symptoms of carcinoid, they are symptoms of carcinoid SYNDROME which only between 10-15 percent of patients with carcinoid cancer have. That is one reason that the diagnosis can be initially missed. … if we all wait for flushing, it might be too late.

Nov 9, 2016 · Treatments for Carcinoids in Neuroendocrine Tumors (NETs)

Hi, Hopeful–yes, you have that right, my tumors were never caught by colonoscopy, upper endoscopy, CT scans, or small bowel follow-through. Largest was just under 2 cm and that was probably the one that caused the small bowel obstruction. My symptoms began immediately after the obstruction resolved and have been consistent to this day almost 2 years later. I have nausea constantly which can be relieved only by eating –does not have to be much, a cracker will do it. I have a burning ache in my lower right abdomen which cannot be explained. Finally, incapacitating fatigue at irregular intervals. I participated in the Gallium-68 clinical trial at the University of Iowa this fall and that scan showed diffuse uptake around the pancreas but no sign of a tumor. The Iowa physician and my own oncologist say they cannot rule out tumors as the cause of my symptoms, particularly since I am one of the 25% of carcinoid patients with tumors that are multifocal. The reason they want to try me on Octreotide is to see if it relieves my symptoms. If it does that will be proof that the carcinoid is the cause (all other causes having been ruled out).