Lanreotide eventually becomes less effective, why?

I think you hit the nail on the head with the workaround.

That being said, I have been taking octreotide injections for 3.5 years for my lung NETs and DIPNECH and it is still working to manage my respiratory symptoms. Tumor growth was already slow so hard to tell but it seems to be helping there as well. I’m very happy with it!!!

I also take Kisqali for recurrent breast cancer and the clinical trials show the median effective time with no cancer progression is 2 years. Then cancer finds its workaround on this med too. I’ve been on it for 3.5 years and the scans are still clear for BC. Sooo I’m hoping that I will be in the 99th percentile (not 50th) on how long these drugs are effective. Someone has to be the last one these drugs are still effective for, right? So why not you and me? 😊

Hello, I've been on lanreotide for almost a yr. The last couple of months, it feels as though it stopped working. Symptoms are back, raging. My tumor is very small and and docs are afraid to operate in Fear of not finding it in the small bowel.
What are my options? I feel discouraged because it feels that there are no further options.

@carver1164

I'm on a medication that is called a biologic that is synthesized to trick receptors into thinking it is a natural protein that my body produces. I haven't had any anti-drug antibodies produced yet but supposedly that can happen. Maybe this can happen with Lanreotide too.

My situation is different. My doctors want to go in there and cut some things out. I'm afraid to let them do that because I would need to stop the biologic I take that helps me not to have pain. I have read that the biologic I'm on is sometimes used to control a cytokine storm that sometimes happens when neuroendocrine tumors are treated.
https://www.cancercenter.com/community/blog/2023/11/cytokine-release-syndrome
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I'm very new to neuroendocrine tumors. I am familiar with immunotherapy because I need to keep my immune system controlled so it doesn't go bonkers. I took Prednisone forever which caused hormone imbalances. Now they say my hormone imbalances are caused by my neuroendocrine cancer.

I'm wondering if prednisone caused my neuroendocrine cancer because it is a synthetic hormone.

It is discouraging when Lanreotide is no longer effective or as effective. Sometimes a boost helps going from 28 days for the shot to 21 days or adding personal Ochtreatide shots to the mix. Sometimes moving forward to other treatments like Lanreotide helps some people. Second opinions with a NET specialist who has a solid tumor board team really assist in the next assistance step.
Feeling for all of us in this process, as we continue to find ways to deal with symptoms and progression and to care for each other when we face such limitations.

@carver1164 How frequently do you get scans/tests to monitor your tumor?

@dadcue To date, there is no medical evidence showing that prednisone causes neuroendocrine cancer. Neuroendocrine cancer develops from hormone producing cells. It can be functioning like mine, so the tumors can create excessive amounts of hormones. Do you know if your neuroendocrine tumor is functioning?

@tomrennie every 6 months. Due at the end of the month

@carver1164 If you are feeling symptoms again, I think that the scans/tests couldn't be coming at a better time. What symptoms have returned?

@tomrennie

My CgA, serotonin, insulin, pancreastatin and gastrin levels are all elevated but I can't say I feel that bad. None of these levels are super high but I'm told my levels aren't good.

They say my "neuroendocrine cells" are producing too many hormones. I only have a couple of actual "tumors" with a primary one in my small intestine. I don't know what is functional or where the hormones are coming from. They said that having elevated pancreastatin, insulin and gastrin levels doesn't mean there are cancerous cells in my pancreas and stomach.

I know there are visible "localized" metastatic lesions and one "distant" metastatic lesion. I was told there might be microscopic lesions in my liver and pancreas that can't be seen.
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I didn't mean to imply that Prednisone caused cancer. I'm worried that the immunosuppression from prednisone weakened my immune system making it less effective at finding and destroying early cancer cells. Chronic systemic inflammation probably didn't help the situation. Maybe Prednisone "contributed" but nobody ever knows.

@dadcue Sorry for misunderstanding, but I think of symptoms as things like vomiting and diarrhea. So you are feeling ok? Functional means that the NETs are producing hormones which usually cause symptoms. Nonfunctional means that the NETs are not producing hormones which means no symptoms. Has anything been biopsied? You are right. Some things may contribute, but we may never know. I do know that you have a lot going on. You can only eat this elephant one bite at a time. Don't be too hard on yourself.