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

@cordelia73 - my tumors have been stable, no new growth for the last 2 yrs. There are other " tools" if that happens- chemotherapy or PRRT / Lutathera for receptor responsive NETs. People live upward of 10 yrs with this disease. It is considered now more like a chronic disease. Please, please be positive! There will be bad days, but there are good days as well! Keep the faith!

Have you tumors grown during this time or spread to other parts of the body?

Thanks for your answer. That's exactly what Im afraid of, this being a death sentence. Did you tumors shrink or go to "sleep"? My husband is positive and eager to start, Im the one that has been having trouble dealing with everything and wanting to know life expectancy with this type of cancer, Ive never heard of it before. I hope you are fine and getting better every day. Thanks for answering.

I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on Feb.1, 2023. Been on Lanreotide every 4 weeks, have CT scans for monitoring (first every 3 mo, then every 4 mo, now twice a year). My tumor was between the spleen and the pancreas, so surgeon removed the spleen along with more of the pancreas, and gallbladder too (long term Somatouline/Lanreotide injections damage the gallbladder).
My side effects are thinning hair (I take biotin for it), elevated blood glucose. Reach out if I can be of help!
Keep the faith! This diagnosis is NOT a death sentence!💜🦓

What is gpnet?

Thank you, glad to hear you have been fine for 11 years, my husband will start this week with the injections and we really hope that they work. Thanks for sharing

When my cancer was found, and they removed the tumor in my ileum, this is what was on my report:

Well differentiated
Grade 1 - slow growing
Non-functioning - does NOT secrete hormones
Low volume = small tumors
Ki-67 index: about 1%
Stage 4 - tumors had spread to liver, lymph nodes, and mesentery.

If you don't mid me asking, What was your grade and stage 11 years ago? My husband has just been diagnosed with grade 1/2 stage 4 with liver metastases and Im very scared. He will get the shot every month from now on and hope for no growth.

Thank u for sharing 🙂

Feel better? How were u feeling? Where is yours located? Thank u