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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: 2 hours ago | Replies (76)Comment receiving replies
The same thing happened to me: I’ve been on these shots for 13 months already but my cancer is still advancing. I was initially diagnosed with stage 4 pNET in July of 2023. I had a Whipple in October of 2023 and, as of 24 April 2025, I’m waiting to get PRRT but, the way things are going, I seriously doubt I’ll ever live that long. But, lucky for me, in Canada MAiD (medical assistance in dying) is the gold standard of “treatment”.
Replies to "The same thing happened to me: I’ve been on these shots for 13 months already but..."
Sorry to hear this, one question was you neuroendocrine tumor "well differentiated or poor differentiated"? I really hope you can start the PRRT soon, will pray for you.
I am wondering where your tumors are Liver?
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I started Lanreotide February 2023, didn’t stop the hot flashes (carcinoid syndrome). Dr switched me to ocreotide in May 2023, it stopped the flashes and I had no growth and no new tumors for a few months. There were a few that were still growing slowly but still active. We talked about what would be the next phase of treatment, PRRT, (Lutathera). Next decision was when, I was told there was no rush in deciding.. I had my first treatment in December 2024, and after my 2nd treatment they were no new tumors no growth, and were actually shrinking.. My last treatment is next month.. Don’t give up hope there are many different treatments out there..