Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Posted by stevestenberg31 @stevestenberg31, Apr 20, 2023

I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About a week to 10days after i get extreme gut pains and bloating. I have had to vomit on 3 occasions now. Is from the NETs or the treatment? Does anyone else experience this? Do certain foods cause this reaction?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@kathleenandbob

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013. Found by accident when being worked up for abdomenal pains and diarrhea. CT showed liver tumors. Not until 2014 during surgery to remove tumors did the surgeon visual the primary at ileocecal area. Hemi-colectomy removed primary.

I have taken Octreotide in the first few years and then Lanreotide depot monthly. My diarrhea is manageable. Tincture of Opium (to stop spasms and pain and diarrhea when eating) and Oxycontin twice a day to constipate me...has been my quality of life saviors. After a few years of this routine, I can plan time away from my bathroom.

On diagnosis 5 years was expected longevity. My doc said he had a patient living with this 10 years!
I am now 10 years out and my scans and labs are still ok with no detectable new growth. As hard and painful as this disease can be....I am still here.

I do have days that I cannot explain to myself why I feel so awful...but then a good day. I have found my symptoms debilitating at times, but I am still here (72). It is my belief that our uniqueness makes trying to answer all the questions we may have. If I have to continue this miasma of symptoms....I will....I struggle with depression about all this, but when I see my grandchild and family....I am thankful. My advice....continue to treat yourself and be thankful for each day.
KPM

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What an inspiration your words carry to me. I’ve been trying for over a yr to find out what’s wrong with me.
Waiting on new CAT scan and blood tests. My symptoms are pretty much the same as yours when you were diagnosed…KK

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