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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver
Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)Comment receiving replies
Hang in there @ahilker! I had similar situation, no primary site discovered during surgery, pNET debulked, but with liver metastases. What kind of infusion do you have?
Right now I am on monthly injections with Lanreotide to slow the growths. I generally tolerate them well, only 3-4 days after injections are bad. I take Zofran for nausea, and on these days eat crackers with swiss cheese. Try different foods to see which you can tolerate and eat often small portions! Stay hydrated, too! I drink half a glass of tart cherry juice ( no sugar added) a day. Some days it feels good, some days I can hardly take it.. Follow the signs your body gives you! Prayers!🙏💜💜
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Thank you @pavlina60. I started my first lanreotide infusion in October. I had 1 set of new scans in February where the oncologist stated that there was no change (tumors have not shrunk but they have not spread either). My next set of scans will be performed next month, fingers crossed for better results. I just hate that I used to be full of energy and loved getting out of bed and doing all the day to day necessities. But since the gallbladder surgery in February, I no longer have any energy, I'm cold all the time despite nothing being wrong with my thyroid, I get more frequent headaches and the list goes on. I started thinking the symptoms were made up and I'm just feeling sorry for myself (which 15-20% is probably really feeling sorry for myself). Thank you again and sending good vibes your way as well!