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

I never heard of it until you mentioned it. Are you taking it?

Yes

What is it supposed to do? How long have you been taking it? Is it working?

Try going gluten free. My son resolved his diarrha that way.

I take cabometyx (40 mg tablets) and it gives a metallic taste to food. Not sure what can be done, if anything.

Hello @rkklinger and welcome to Mayo Connect. I really appreciate your post. Your husband's level of activity is encouraging to us all! It does show how NETs is a chronic disease and one that can be lived with for many years. To those in our group who are newly diagnosed this can be good news. You also demonstrate the importance of maintaining regular follow-up appointments.

Do the tumors in the skull cause him much discomfort?

No. He doesn't seem to have any pain from the tumors. He experiences pain in his left side back after eating at times. He has to lay on that side and take Gas=X. It usually subsides within 20 minutes especially if he is able to lay down.

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 have been getting the shots for 4 years. I can't say for sure if I have had any side effects. I am always tired, blood sugar has raised a bit and so has my blood pressure. Are these from the shot? I think so but cannot with 100% certainty, blame it on the shot. It has stabilized my tumors mostly, but since being on it, I also have had tumors show up elsewhere. I was told that if I wasn't taking it, I would be having a lot of symptoms! 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.