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Anyone else get bloating and abdominal pain from NETS or Lanreotide?
Neuroendocrine Tumors (NETs) | Last Active: Sep 22 1:50pm | Replies (97)Comment receiving replies
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
Replies to "This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013...."
@kathleenandbob:
Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but my small intestine primary NET w/liver met- recent MRI shows shrinkage. I am a positive thinker; however, my questionable mortality is always with me. It is so rewarding to read your post and I realize I’ve just got to keep Keepin on. Wishing you good days ahead. Bette
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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Hello @kathleenandbob and welcome to our NETs discussion group. I am glad that you shared how you are able to find silver linings as you deal with this disease. That is important in dealing with any chronic illness like NETs and carcinoid syndrome.
I had my first surgery for NETs in 2003 (my third surgery was in 2016), so that makes me a 20-year survivor. Like you, some days are better than others, but I too am grateful.
If you are comfortable sharing more, when you had surgery (Hemi-colectomy) for the primary NET, how long were you hospitalized? What changes have you made to your eating habits?