Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll be able to glean some helpful information and support here.
I had my first surgery in March 2018 to remove 10” of my small intestine, and my second surgery in July 2019 to remove 11” of my colon/large intestine. After that my weight dropped from 117 to 104. Now at 20-30 I would have thought that was great, at 70 I just looked old! My oncologist said, “Eat protein!”. It was a challenge for awhile trying to determine what I could eat. I found a very helpful website: https://netrf.org. (Neuroendocrine Tumor Research Foundation) .Under “Search” you can just type in “Diet” and you’ll get several helpful articles. Over the years I’ve gotten to where I eat whatever I want, while learning what to avoid (in my case it’s spicy and creamy, heavy foods. But never had to give up dark chocolate!) I have found that taking Beano and Lactaid (if needed) before eating frequently helps. And not eating very large meals.
I’ve been on Octreotide injections since April 2018 (aside from 6 months on Lanriotide but had to stop due to side effects). I’ve found many (if not most) doctors are not all that familiar with possible side effects. A very helpful website is https://www.drugs.com. I try not to worry that I’m going to have those side effects, but educate myself to be able to identify any possible side effects as being related to a certain med.
One last thought: this is a chronic illness and one that we can manage. Please check in any time you need to.