Life expectancy with NETs and lifetyle as it progresses

My problem at first was low sugar levels, as the tumors on my liver got bigger it was getting impossible to control. Try mixing cornstarch in with whatever you’re eating. Not a cure but kept the numbers from spiking. I mixed it in with chocolate pudding.
Tumors shrank after chemo and sugars are under control now.
Good luck

Cobraman: Hi! I received diagnosis of small intestine (duodenum) NET tumor that had metastasized to liver October 2022. I began Samotuline Depot injections (Lanreotide) the next month which continue every 28 days. Six months later I have had minimal symptoms. However this month a couple days after shot - sores have appeared in increasing numbers on my face (nose, lips) that are painful. Nothing seems to help. Have you or others experienced this after treatment shot?
I too wonder about what my future will be living with this diagnosis hanging over my head. I know it is best for us to have positive outlook; however, daily I wonder how much quality life I have left to live. The unknown is scary.

I was diagnosed in 2012 as a typical mid-gut, Ileum primary, liver mets and lymphnode mets and was given a 5 year prognosis. That was almost 11 years ago. The first five years was watch and see for tumor growth and control the syndrome through Sandostatin injections monthly and learning the five e's ( eating, exercise, emotions, ethanol and epinephrine). During the fifth year our forever home was uprooted by iminent domain for a new school. It blew the top off the emotion part of the five e's and caused rapid tumor growth. The result was bowel resection, Y-90 imbolization to the liver and later microwave ablation in 2018. Now adays as long as I watch what and how much I eat, dont over exert, stay calm, avoid booze and epi pens i can do most anything I want. Oh yes and pray daily!

Learned new material from your email - thanks. Never heard of the 5 e's. No bowel resection yet although came close a couple of years ago. Exercise is bad? Alcohol is bad? What about eating - eat less? Emotions play a role? Wow new stuff to me doctor never mentioned.

Not experiencing any sores. Try to manage worrying. I read where many patients live for many years. Symptoms seem to vary all overthe place. Personally I am symptom free for the time being.

There is a lot of things that you will learn from advocacy groups like NCAN and CCF, not your doctor. Ronny Allen has a very good blog full of information. We are all different though in what and how much may trigger the syndrome and growth.

Hello my name is Jannis Robeson and I am a 70 years old female.I do not drink or smoke and I am not over weight.
My nets has not gone to any other part of my body in the past two years. I have CARCINOID ENDOCRINE TUMORS I took lost half my colon close to my elium. I also suffer with Hashimoto, Neuropathy, Fibromyalgia High Blood Pressure and severe depression because of a brain mass.. I just started started having bouts of diarrhea and,weakness.
Is their a health drink I may consume? I ingest fifty mg. Of protein daily with my ACAI, GINGER,

@jannis
This is one of the drinks that my wife had coming out of surgery that was suggested by our cancer team to help with healing. I would ask your doctor before adding anything new, just to make sure. I have attached a link, but you should be able to find also in either a grocery or pharmacy. Link: https://www.healthykin.com//p-6574-ensure-high-protein-therapeutic-nutrition-shake.aspx?gclid=EAIaIQobChMI_ryh-JSj_wIVk8fjBx0jTgAJEAQYByABEgJ3hfD_BwE
Good luck and let us know if we can help you with any other information. You got this!