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

He was diagnosed in December 2019, had surgery in March 2020, I think the first six month scan was fine but the next one showed growth, he is on Octreotide monthly injections, had Lutathera treatment, which did not help, was on clinical trial, which had severe side effects. Was on chemo, but had some issues with that. He has lost a ton of weight and is skin and bones. He has had issues with walking and joint pain. He is not able to work. Prior to diagnosis, he was extremely healthy and active, in very good shape. Now he looks like he's going downhill fast. Meanwhile, when I look at any sites, most people are like you - fine after decades sometimes. I have gone to support groups and with the exception of one person, who was undergoing chemo, everyone looks fine, they are all working full-time and seem to have normal lives. Yes, they have had various treatments, but I have never seen anyone who looks like my brother. Now it could be that people who are very sick do not go to those meetings. My brother does not and I don't even know if he would be able to sit in one of those meetings if he tried. He had some kind of breakdown in April - we don't know what caused it - drugs, anxiety, etc. - but since then, he has not gone back to normal. He cannot focus or concentrate at all. Can't watch TV, text, email, and can barely talk on the phone. It's very upsetting. I don't know if in his case, it just advanced quickly. It had already metastasized to the liver at diagnosis, but was Grade 2. They suggested surgery as he was in such good shape. He had no symptoms until he had the surgery - no diarrhea (he has small intestine primary) until after the surgery. He had some pain in his side and the liver lesions were picked up on a CT scan. But it seems that from surgery on, he's been going downhill. I think everyone else I have heard of has had good results with PRRT (lutathera) but he did not.

Correction to my previous post: I take two probiotics. (not prebiotics) And one that's a pre/pro combo.

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.

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.

Hello
Diet information can be found at https://netrf.org/.

I have stage 3 lung NETs and have been on Lanreotide injections for 6 months.

I find it has helped my symptoms but is not without side effects. I’ve also experienced side effects on the withdrawal when preparing for my PET scans.

Good news is the lanreotide infections are working so it’s worth the minor inconveniences.

Be Blessed
CEB

How so Allison?

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

I had surgery in 2007 when they found the tumor. They removed it, along with most of my small intestine. I had follow ups and scans every 3 months after that for the first year. I was under the impression that the surgery had removed all the cancer, only to find out later that it was other places.
I now scan every 6 months, and went thru PRRT treatments in 2021, when the cancer started getting really active. PRRT has stopped the tumor growth and I've had no new lesions or nodules since!!!
I honestly don't know anything about the grade...

Was surgery ever brought up as option? What grade are you? Thanks.

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.