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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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Nice to see another group! I started on long-acting Octreotide at the end of November and am doing really well.it 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.

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Replies to "Nice to see another group! I started on long-acting Octreotide at the end of November and..."

@wordnoid So good to hear from you! I’m glad that your new treatment is providing such good results for you. Is this the monthly injection that others have discussed? As I recall, that is an every 28 day injection. Tell us more about it. Teresa

How can you possibly self-inject into the gluteal muscle? I would never begin to try.

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