Lanreotide eventually becomes less effective, why?

@jlsgt I like how you answered things better than how I asked. Kudos to you. I can relate with everything that you typed other than the donut under my bottom. I have been able to avoid that so far. I also enjoy taking my dog on walks and hikes. I live in Arizona, so we can stroll through the desert or hike through the mountains up north. We are in our monsoon or rainy season. I really enjoyed getting drenched and playing in the rain yesterday. Jumping in the puddles was so much fun. I also enjoy listening to music and dancing on the furniture, cause I can now, like no one is watching... well accept my wife who joins in. I really enjoy remembering how much fun fun is and trying to have it as much as possible. Like you, I don't take anything for granted anymore. I've been reminded how precious life is.

Turkey, good for you. I think we have both grown to appreciate an extension of quality time in this life.

An Amazon driver, maybe 21 years old, told me the other day that he wanted to have a nice house on some land and a nice truck to drive. I said those things are nice, but are you healthy? He said "Yes sir". I told him "Well, you're already rich and you don't even know it!" 🙂

Do not know if this is pertinent to your situation but For those people for whom Lanreotide was not sufficient for symptom relief such as diarrhea NETRF reported today :
: Telotristat (sold under the brand name Xermelo) is an oral prescription medication used alongside somatostatin analog (SSA) therapy to treat severe, refractory diarrhea caused by carcinoid syndrome in adults. It works by blocking tryptophan hydroxylase, the enzyme responsible for the body's overproduction of serotonin in neuroendocrine tumors.

Explanation can be found at : https://netrf.org/events/know-your-nets-2026-virtual-conference/
Should be on You Tube soon

New to the group.
Distal panceatectomy in 2017. NETs and cells to liver came back after 5 years. From Octreotide to lanreotide ( now continuing) and I just completed course of PRRT nuclear medicine infusions.

@brucegs Hi and welcome to Mayo Connect. Sorry to hear that your NETs have returned. Have they shown up anywhere else other than your liver? How is the course of PRRT treating you?

@tomrennie Thanks. Yes,there was regrowth at the pancreas site and cell in a lymph node ( which in my reading of last week's MRI report seems to.have diminished.) I'll know more with tomorrow- PET scan and next week's follow up surgeon and oncologist visits.

@brucegs Good luck with your scan. Hopefully you get good news from the surgeon. Please keep us posted ok?

@dadcue
Mike, Your explanation and words "Nobody ever knows" rings true for my situation. I am convinced, however , that doing my own research and presenting my concerns has been taken into consideration by the real NET Specialists.. I surmise that your research and the steps you are taking add to the forward movement in getting closer to knowing.

@maeve115

I'm hanging on to how I currently feel which is pretty good. Honestly, I would rather not know about NETs and I wish I didn't know. There is useful information here which helped me feel better about talking with the NET specialist who said Lanreotide might work until I decide to have surgery. I'm struggling with the idea of having surgery.

@dadcue
Oh Mike.. I suspect all of us would rather not know about NET's and wish we didn't need to do so. You are in good company with that feeling/reaction. It is also an understandable reaction to struggle with the idea of having surgery.. Weighing the rewards with the risks is the challenge we face. Surprisingly, I found Palliative Care to be helpful in the decision process. In our area, Palliative Care is available to all cancer patients no matter what stage they are in.
I hope you can find that competent and compassionate person/team to help you decide and accompany you in whatever path you take.