First Lanreotide Injection: Any tips about diet and side effects?

Thank you for sharing your experiences. That is what I was hoping for when I signed up on this site. What has your experience been with chocolate, especially dark chocolate. It is one of the no-no’s I have read about and one of the favorite things I will miss most, but have been afraid to try out.

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been Stage IV for a decade now, with metastasis to my liver, lymph nodes, and more recently very small nodules on my lung and scapula.
I was started on Octreotide, which I took for many years. My oncologist then switched me to Lanreotide. After being on that for a year, I started experiencing very painful joint pain and swelling throughout the month. I'm not sure if it was the Lanreotide or something else, but I convinced my doctor to let me go back to Octreotide. That was on February, and I do feel like the pain has gotten better.
Everyone has different symptoms and side effects so don't hesitate to let your doctor know what's going on.
As far as diet, I have always eaten whatever I want, and usually have no problems. The only thing I know I'll "pay for" is something with lots of sugar, like donuts, cinnamon rolls, etc.
Best wishes on your new journey, and always remember that NETs is NOT a death sentence! Educate and advocate!

Did you initially have surgery, and if not, why not? Did doctors not recommend it or was it not possible? What grade are you? Thanks.

That is great. Unfortunately, my brother has not been that lucky.

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.

I am beyond appreciative for the internet resources and you are so right about not much from the oncologists in the way of information regarding side effects or diets. I feel so blessed to have stumbled on this group while scouring the internet for myself! Hugs!!
P.S. Have you had issues with avocados? One site I found says not to eat, it some say it is a healthy fat.

Nana120, glad you found this info helpful.
Hate to say but I'm not an Avacado person so can't answer your question. I will tell you that it's just a real trial and error figuring out what you can/can't eat. I had the double whammy of losing so much of my intestines. I did attend an online conference through LACNETS recently (excellent) and the general consensus is basically you can eat whatever you want as long as it agrees with you and you try to eat healthy. I do take 2 prebiotics (one in the morning and one at night), and recently started a pro/prebiotic combo.
I'm sure you'll get some helpful information from others here, and good for you for reaching out.