Neuroendocrine Tumors (NETs) Support Group

I was surprised this morning by an unexpected call from my surgical oncologist. I saw him mid-January and after another MRI (I had one in...

Has anyone left their Lanreotide out of the fridge overnight? What to do in case of an appliance breakdown.

Has anyone got a calcified mass from the injection? My first injection was given in the wrong place The orthopedic doctor says it is possible...

Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2,...

4 yrs ago routine prostate MRI showed nets in my Ilium of small intestine, surgery 2022 to remove 2 feet of small intestine and about...

Anyone have problems with elevated blood pressure while on Lanreotide?

I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat...

My partner is grade 2, stage 4 PNET diagnosed Jan 28 2025 and post start of lanreotide (3 months) showed growth still. Starting PRRT shortly....

Lanreotide Manufacturers Approved products are manufactured by Ipsen and Cipla - does anyone have experiences when the the two products are used in ones' NET...

After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....

Hello, brand new member here. Hoping to tap into the group's wisdom! In January I was diagnosed with a GI-NET (terminal ileal, well-differentiated, grade 2,...

So, I'm writing this on behalf of my mom. She was first diagnosed with pancreatic neuroendocrine cancer in Sept/2019, because of the extent of the...

As I promised I would after 3 months of lanreotide injections I’m reporting the results of my oncologist’s CT scan with contrast to determine whether...

Had what I thought was a bad stomach bug, turned out to be a neoindicrine tumor blocking my small intestine with lymph node involvement. Had...

Has anyone had positive results from Lanreotide injections? Tumors in remission or shrinking?

I'm about to take my 15th shot of the drug. It's my understanding that Lanreotide and maybe all Nets drug therapies only work for so...

last scan showed huge mass in mediastinum, biopsy showed sarcoid-like reactivity to malignancy but no one has put eyes on it, coming to Mayo in...

NET monthly Samotuline Depot injections seem to cause increasing sores on face and around exterior lips. Help!

My partner was diagnosed w a stage 4 grade 2 pancreas origin NET. She has started lanreotide & is having diarrhea and then very bad...

I have had a full whipple in March 2019. In March 2023 I was diagnosed with neuroendocrine liver metastases (NELM), Grade 2. Since June 23...