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I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Oct 28 10:09am | Replies (44)Comment receiving replies
@vinnie694
Curious how your condition is now and what treatments and testing you’ve had since
Best wishes
Replies to "@vinnie694 Curious how your condition is now and what treatments and testing you’ve had since Best..."
Hello @lns83 and welcome to the NETs support group on Mayo Clinic Connect. I see that @vinnie694 and @dbamos1945 have already responded to your post and have shared their personal experiences with you.
I would enjoy getting to know you. As this is your first post, I would invite you to share a bit about your journey with NETs. Is this a new diagnosis for you? What treatments have been suggested?
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@lns83 Currently still on Ocreotide (2 shots every 28 days) ( I also have carcinoid syndrome which Lanreotide didn't help).. After a period of time with no new tumors and no growth, a few started to grow, not substantially but growth just the same. My Doctor at Mayo said I should start looking into the next possible treatment which was PRRT Lutathera.. I am a pretty decisive, after researching the treatment, I decided not to wait, After 4 treatments, I was blessed with positive results, No new tumors, some of the smaller ones were not visible, and the Larger ones were decreasing.. But like @dbamos1945 stated in her response, I know the lil devils are napping! But overall I feel good..