1. < Neuroendocrine Tumors (NETs)
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I have a neuroendocrine tumour in the small bowel and liver lesions

Posted by zalda @zalda, Feb 25, 2024

I have been waiting for surgery to remove a neuro endocrine tumour(NET) in the small bowel and lesions in the liver.

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

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vinnie694 | @vinnie694 | Oct 20 8:08am
In reply to @ricki8 "@fraaseo I am also Stage 2, Grade 4 small intestine metastasized to my liver with multiple..." + (show)
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@fraaseo
I am also Stage 2, Grade 4 small intestine metastasized to my liver with multiple tumors, all sizes. NETs discovered 2.5 years ago.
I am on Everolimus (as a support for my 4 week -2 shot (180) mg. of Lanreotide and it is working well for me. I was told it would be a bridge until I can start the Clinical Trial of Alpha PRRT. The Beta PRRT caused my tumors to quickly grow.

I hope you continue to feel good and monitoring is so important as we all express differently - Zebras.

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@ricki8 thank you so much for your response, still learning how to live between tests. But getting better… Hope everything goes well for you on the Alpha PRRT treatments..

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ricki8 | @ricki8 | Oct 20 9:51am

Hi Vinnie
Testing is very important and the tests have improved so much from years ago. Less radiation, with contrast dyes etc. It's good that you are adjusting until cured! At least we have more choices now. Laughter is still always good medicine.
Thanks for the good wishes re: Alpha PRRT! And the best to you as well!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 27 3:53pm
In reply to @rschweer "@tgsenn70 Greetings! I went through the PRRT in early 2024. It involved 4 sessions over 8..." + (show)
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@tgsenn70

Greetings! I went through the PRRT in early 2024. It involved 4 sessions over 8 months. The first session began at 7:30 AM and I was released at 3:00 PM, so it took all day for the infusion. The remaining 3 sessions were the same. I was told that I could not ride in the same vehicle with anyone so I drove solo to and from the treatment center. Definitely take along a good book or something to occupy your time, including food for lunch. I was told I could not sleep in the same bed as my spouse, nor could I use the same bathroom. This lasted for 5-7 days but I went 8 days to prevent exposure. I couldn’t be within 6 feet of anyone for this time as well. The results were successful for at least a while, up to now anyway. I was a bit tired for a day or two with each infusion. I have been receiving Lanreotide injections monthly for about two years. Initially, I received Octreotide injections monthly. It will be 6 years in January since I was diagnosed. I am 67 and very active so I’m very positive that I’ll be around for a while longer. Early on in treatment I was advised that being overweight was a risk factor, so I purposefully lost 46 pounds and feel better for doing so. I wish you the very best in this journey…. Ron

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@rschweer
I wanted to be sure you saw the information regarding a virtual NETs support group meeting next week. This meeting originates at Mayo Clinic in Florida. Here is information regarding the speaker and how to register.
https://connect.mayoclinic.org/comment/1424759/

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michellehcapouch | @michellehcapouch | Oct 28 10:09am
In reply to @dbamos1945 "@vinnie694 & @Ins83: DIDDO Ins83! I think Vinnie and my NET small bowel cancer is very..." + (show)
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@vinnie694 & @Ins83: DIDDO Ins83! I think Vinnie and my NET small bowel cancer is very similar (dx 10/21 well differentiated, grade 1, KI67 -1%, stage 4 w/liver metastases. After dx I did ok w/stability on Lanreotide 28day inj. - until MRI revealed 40% tumor progression!
I chose Beta PRRT Lutathera treatment (6/24-12/24) @ CoHope Duarte & had drastic resolution of most tumors & stability of all. Scans reveal primary tumor smaller than at dx! Doing my 3mo MRI’s and shows continued tumor resolution so far. Tomorrow 10/13/25 is MRI day so will have update soon. Feel good & restoring my ‘ol life! Reality keeps me vigilant ‘cuz I know those lil devils are napping. Hope is alive to keep them in my rear view mirror! dbamos1945

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@dbamos1945
Thanks for sharing. Great to hear PRRT was working for you it is likley my next step on lanreotide every three weeks is not effective enough in keeping little buggers at bay.

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