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

Neuroendocrine Tumors (NETs) | Last Active: Feb 26 7:54pm | Replies (77)
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@sophiarose

Hi
I had an exceptional NET specialist who started me Lanreotide after 3 injections the side effects were diarrhea to the point of having to wear a diaper bloating nausea sweating major fatigue and brain fog
I had no symptoms before I started
I had to stop
Went to another oncologist and got Octreotide which for the first 2 months were ok
But then slowly started to effect me
My 5th injection gave me an infection at the injection site and after that was all down hill
It never gave me diarrhea but gave me severe carcinoid symptoms to where the 9th injection I thought I was having a stroke
I stopped
I am going back to my original NET team because they are exceptional and my liver is now compromised from either the treatments or the liver embolization I had in January to take the tumor load off the right side of my liver
I haven’t had any injections in 6 weeks and I am feeling wonderful
I have metastatic liver NET carcinoid of unknown origin
There are people that have taken the injections for many years without side effects
You won’t know if you don’t try
Good luck

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Replies to "Hi I had an exceptional NET specialist who started me Lanreotide after 3 injections the side..."
jhilbish | @jhilbish | May 2, 2023

Thank you for sharing. my husband has P-NET. and was getting Sandostatin shots monthly, they gave him Lanreotide and he got sick, but I said that could be lack of enough food, etc. and it was his first shot . She said they are basically the same? He also had 3 liver embolizations which I would like to hear more about yours? I am interested to hear about your treatment and what are you doing next? God Bless and keep fighting! I'm a 3x survivor so I'll sit on the sidelines! Thank you be well
Joni

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