NETs with Liver metastasis: starting lanreotide injections

I had intestine resection to remove discover nets in my intestines. Removal of ovaries to remove metastasis there. Liver metastasis have been treated with lanreotide for years and it has slowed down growth of NETS. I am a lanreotide fan I think going on year 4 of injections.

@michellehcapouch
Have you had any side effects from it?

Hello @grandfather2, and welcome to the NETs support group on Mayo Clinic Connect. It sounds like this neuroendocrine tumor is a new diagnosis for you. How long ago was your surgery?

I see that @michellehcapouch has already posted to you about her good experience with these injections. As you are considering this type of treatment, I would invite you to a discussion group where others share their experiences with these injections. Here is a link to one of those groups:
https://connect.mayoclinic.org/discussion/any-one-with-neuroendocrine-tumors-getting-the-shot-once-a-month/
Here you will meet @vinnie694, @lindabees, @californiazebra, and others. I suggest you post any questions or concerns about the monthly injections in this discussion group.

Here is a link to another NETs discussion group where you can read and post about liver metastasis:
https://connect.mayoclinic.org/discussion/neuroendocrine-carcinoma/
https://connect.mayoclinic.org/discussion/grade-3-poorly-differentiated-duodenal-net-metastasized-to-liver/
How are you feeling since your surgery? Any problems with digestion?

@hopeful33250 I had what I thought was a bad stomach bug, turned out to be a net tumor blocking my small intestine. With lymph node involvement.They removed the tumor. I then had a dotatate pet scan which showed 2 small tumors in my liver and my small intestine lymph node.
I'm currently being treated for stage 3 marginal zone lymphoma and 6 years ago i had stage 3 melanoma that was removed at Sloane Kettering. Luckily so far they're has been no recurrence although they will be doing a biopsy on my lymph nodes that tested positive. The tumors in my liver are still too small to biopsy

@anonymous524849
I hope you will continue to post as you have more testing and treatment. Have any other treatments been suggested yet, or is your doctor waiting for the biopsy results?

My husband also has NET in small intestine and liver. Can someone tell me what symptoms come along with this diagnosis? Is vomiting common? What else can we expect? Any information is appreciated.

@anonymous524849 I have but I feel still worth it. I eat dairy before bed day of injection tummy gets a bit upset overnight. I have thrown up occasionally but not each time. The biggest side effect for me is diabetes so I take meds and stopped eating sugars because I can’t seem to process glucose in lanreotide. Still worth it. I also get scar tissue and minor soreness At the injection site. I use red light therapy to help reduce swelling break up scar tissue. Still worth it.

Hope that helps
Michelle

@tgsenn70 I had weight loss & vomiting off & on with occasional abdominal pain that would double me over. Was anemic & had 3 months of infusions. Had every test imaginable until they finally scanned me & found I had a small bowel blockage, pathology confirmed nets.

Thank you @michellehcapouch. It does help.

@fraaseo thank you.