Any one with Neuroendocrine tumors getting the shot once a month?

I was under the impression the shot was suppose to keep them from growing and i would think not get new ones but u have new ones? What did they say about why your getting new ones? Where? Could I ask your age? I am 37 with tumors in my liver. Not taking shot yet. Thank you good luck.

I was under the impression the shot was suppose to keep them from growing and i would think not get new ones but u have new ones? What did they say about why your getting new ones? Where? Could I ask your age? I am 37 with tumors in my liver. Not taking shot yet. Thank you good luck.

I was under the impression the shot was suppose to keep them from growing and i would think not get new ones but u have new ones? What did they say about why your getting new ones? Where? Could I ask your age? I am 37 with tumors in my liver. Not taking shot yet. Thank you good luck.

@amygirl: If you have a NET diagnosis and biopsy has revealed K67 stain “Stage & Grade”, then you would benefit from a treatment consultation from a NET Oncologist Expert to determine your best treatment route. NET cancer has drastically different growth rates, usually slower growth and we aim for stable growth patterns. It is not like any other types of cancer.
At your young age you must educate yourself on this type of cancer and understand that you need to be proactive with controlling tumor growth and cancer metastases to give you best prognosis (I am 80 but have found ways to enjoy a good quality of life).
There are many successful reports from NET treatments. The first is usually the Lanreotide 28 day shot that offers symptom control and relief. This is an effective tool as well as regular blood tests and scans to help your Oncologist with additional treatments when necessary.
I encourage you to join virtual NET support groups that will prove to be allies offering answers to your questions, recommendations from patients, and new researched treatments available. Expert Oncologist’s lectures are available on a zillion related topics that will expose you to the “lingo” that docs and patients will use. The HOPE is contagious and YOU are not alone on this road of Neuroendocrine Cancer. My best thoughts are with you! dbamos1945

I was 39 when the first tumor was discovered in between my small and large intestine. Surgery removed it. 10 years later a couple showed up in my breast. Since then in the past 16 years all was pretty quiet then I developed a tumor in my back, my leg, and now activity is showing something in a couple of bones. It is hard to find a neuroendocrine specialist. But do find one as they are more aware of this type of cancer. I am now 66 and still feel good. And still learning. You have this.❤️ Just make sure you keep informed and if you can, go to Mayo if you ever want a second opinion. They are amazing!

I hope you will post updates, @rkklinger, about your husband's journey with NETs. If you have any questions or would like to share, please use Connect as a place to get support.

I'm not sure where to start this update on my husband's stage 4 NETS 31 year story that I have previously shared. We just returned from Mayo where Ron had scans, etc. His last scans were in October 2025 so it has been 7 months due to our being in AZ during the winter. The scans show several increases in size and number since the October scan. This is basically the first multiple increase since he started on Lanriotide in January 2023 when he was rediagnosed (original 1 tumor removed in 1995 - In 2023 tumors have spread throughout his skull and body). The Mayo NETS team is suggesting PRRT beginning in June 2026. The recommendation is to start PRRT now while he is in relatively good health. He is not sure if he should start now or give it 3-6 months to see what happens. We would appreciate thoughts about PRRT risks and successes. Thank you!

I'm not sure where to start this update on my husband's stage 4 NETS 31 year story that I have previously shared. We just returned from Mayo where Ron had scans, etc. His last scans were in October 2025 so it has been 7 months due to our being in AZ during the winter. The scans show several increases in size and number since the October scan. This is basically the first multiple increase since he started on Lanriotide in January 2023 when he was rediagnosed (original 1 tumor removed in 1995 - In 2023 tumors have spread throughout his skull and body). The Mayo NETS team is suggesting PRRT beginning in June 2026. The recommendation is to start PRRT now while he is in relatively good health. He is not sure if he should start now or give it 3-6 months to see what happens. We would appreciate thoughts about PRRT risks and successes. Thank you!

I'm not sure where to start this update on my husband's stage 4 NETS 31 year story that I have previously shared. We just returned from Mayo where Ron had scans, etc. His last scans were in October 2025 so it has been 7 months due to our being in AZ during the winter. The scans show several increases in size and number since the October scan. This is basically the first multiple increase since he started on Lanriotide in January 2023 when he was rediagnosed (original 1 tumor removed in 1995 - In 2023 tumors have spread throughout his skull and body). The Mayo NETS team is suggesting PRRT beginning in June 2026. The recommendation is to start PRRT now while he is in relatively good health. He is not sure if he should start now or give it 3-6 months to see what happens. We would appreciate thoughts about PRRT risks and successes. Thank you!