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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound, then a cat scan and finally a biopsy which confirmed the pots on my liver were cancerous. My PCP was very assertive to get the ultrasound as the original diagnosis to my symptoms was that my body was absorbing iron (also had a ferretin count 3x target). So I donated blood a few times but she was worried the increased iron could impact my organs and scheduled the ultra sound. My next steps:
1. Have a PET scan to find the source of the liver cancer (neck to toes)
2. Have an echocardiogram to see if the cancer has thickened the walls of my aorta (while not a common occurrence, it does happen)
3. Start the monthly injections (PRRT)
I'm feeling positive and hopeful and just started reading these posts. The support here is wonderful and I have a lot to learn. Any insight from people who have already gone through this process is more than welcome. We are scheduling to have #1 and #2 completed by the end of this month. Thanks

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Replies to "new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound,..."

First of all, I'm sorry about your challenges, but it sounded like you have a positive attitude which is so essential.
But a statement you made caught my attention. PRRT (which I have had) is not a monthly injection. It's a targeted, infusion treatment done every 8 weeks following a specialized PET CT (Lu-177 Lutathera) which identifies exactly where the tumors are. Sounds like your doctor wants to start you on monthly injections of Octreotide (Sandostatin) which are given every 28 days. It's frequently the first line of treatment. It should help the diarrhea, flushing, etc.
Hoping for the best outcome for you.

Hello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your post that you are new to the NETs diagnosis. I'm glad that you found this forum.

I would like to invite other members (@sophiarose @mkmn @cu2 @pjsheridan2022 @jay1225 @spartan @sturns @trivia @kim1965 @dbamos1945) who also have liver NETs to share their experiences with you.

You mentioned that you are having monthly injections. Are these monthly injections being used to treat the symptoms of carcinoid syndrome, such as diarrhea, etc.?

You also mentioned that you will also be having PRRT. Is there a schedule for when this treatment will start?