I have 3 nueroendocrine tumors in my left lung

I have Neuroendocrine tumors (small intestine metastases to liver). My treatment for the last year is a shot of 120mg Lanreotide every 28 days in my Oncoligists office. Few side effects resulting in stable tumor growth. I am open to help answer your concerns.

Do you have neuropathy in addition to neuroendocrine tumors? Did you have the neuropathy before starting Lanreotide? If so, there could be a genetic connection, specifically a mutated SDHB gene. I have mutant SDHB, neuropathy and had a neuroendocrine tumor as a child.

Margaret10:
Yes, I have had neuropathy (beginning in feet, graduated up legs and also now beginning in fingers) for 20 years drs say because I have Type2 Diabetes. My NET was diagnosed 10/2022 and I began Somatuline Depot 11/2022 and injected every 28 days; changed to Lanreotide 11/2023 until present. I don’t know NET and Neuropathy are connected. I have not had genetic testing. I hope that your NET treatment has stabilized your tumors and that your Neuropathy is not causing you pain. Best to you.

At 67 I was given my diagnosis of stage 3 lung Nets that has metastasized to my lymph nodes. While the chemotherapy and radiation made me extremely tired and nauseous with headaches, but it wasn’t that bad. Today’s low dose radiation is much more tolerant than that of resent past.
The positive side was treatment was reduced size of my tumors by 50%. And tumors have showed no progression in growth after 18 months.
The negative side was it took the 18 months to get back to a feeling of normal.
I now get monthly injections of lanreotide. A couple of things to note from my experience is that the injections can affect the sugar levels in your blood and I have read that it also can cause hair to thin out. Just know that everyone is different and so are the after affects.
I often contemplate would I opt for treatment again. My answer is always yes. The tumors are still in my body and I face my future with the cancer as my new normal. Everyday is a blessing. I’m sure you will make the right decisions for yourself. There is no right or wrong answer, just be blessed in knowing you have choices.

Thanks for your comments. Being 8 years your senior and knowing your decisions help me feel better about mine, I'm passing on prayers for you.