1. < Neuroendocrine Tumors (NETs)

Recurrence with Metastasis

Posted by suestroinski @suestroinski, Jan 21, 2023

Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid symptoms. I was given the all clear in January 2021. In September 2022 I went in with carcinoid symptoms again, cga and gastrin were checked and crazy high. After a CT, MRI, PET and surgical biopsy, I have been dx with spread to my stomach. There are new and growing nodules in my lungs that did not light up in the PET. I'm waiting for a treatment plan, and getting lanreotide for carcinoid symptoms. I'm feeling pretty anxious right now. Glad to have found this group, not many others understand this disease.

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 5, 2023

Welcome @suestroinski, I'm tagging a few other members like @elm60 @sturns @cu2 @trivia @sandy23 @caitrina @dbamos1945 @patrick031621 @mkmn @pjsheridan2022 @immmm @gulzar @links and @kim1965, who know first-hand about recurrent and metastatic NETs.

Have you found out more about next steps and treatment plan?

REPLY
suestroinski | @suestroinski | Feb 5, 2023

My current med care team is at the U of M. They have recommended a 3 month wait and recheck.

I am coming back to Mayo for a second opinion for both the diagnosis and treatment plan.

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1 reply
caitrina | @caitrina | Feb 5, 2023

@suestroinski My current treatment is radiation, LU-177. It is given every 8 weeks and I get an injection of Sandostatin every 4 weeks. The injection is given 4 hrs after the radiation and then I get another injection 4 weeks later at my local provider. When I first began the radiation I was scared to death, but I have not had any issues with it. Nothing major. Feel a tiny nauseous afterward but nothing that keeps me down and is soon forgotten. This plan of treatment is new for me. I’ve had 2 treatments of this so far. Nothing else has been brought up at this point.

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mkmn | @mkmn | Feb 5, 2023

I have had four rounds of Lutathera. I continue to be on an injection of Lanreotide 1x a month, with no issues. I have been taken off the daily injections of octreotide and feel much better.
No other plan in place at this time.

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pjsheridan2022 | @pjsheridan2022 | Feb 5, 2023
In reply to @suestroinski "My current med care team is at the U of M. They have recommended a 3..." + (show)
@suestroinski

My current med care team is at the U of M. They have recommended a 3 month wait and recheck.

I am coming back to Mayo for a second opinion for both the diagnosis and treatment plan.

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My experience is similar to Caitlin’s, I’ve had 3 treatments at Mayo with the 4th in March. Mainly flu like symptoms for 3-5 days. Won’t really know if there is a plan going forward until I’m done with the Luthera and have updated scans which I think I was told would be June.
Monthly lanreotide, had some fatigue when I started in March 22 but my body seems to have adjusted to the shots.

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