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Anyone else get bloating and abdominal pain from NETS or Lanreotide?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (98)Comment receiving replies
After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so I’m staying off the lanreotide unless things change because for me the side affects were worse than what the cancer symptoms are. I do want to express though what works for me may not work for others so please listen to your oncologist. I also want to express that if you have the opportunity please seek help from Mayo Clinic if you possibly can. They have the best most advanced knowledge on neuroendocrine tumors. If you’re getting treatment elsewhere please at least give yourself the benefit of having Mayo give you a 2nd opinion. This is your life, make it last. God bless each of you and I pray for you all 🤗🙏♥️♥️♥️
Replies to "After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so..."
Dear spinhead,
I hope that you are doing well. I learned a lot from your post. I’m just diagnosed with pNET and very scared. I’m from Canada and don’t have insurance in US. I wonder if you know if I can do all the tests and treatments in Canada but have 2nd opinion from Mayo. Thanks
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I have the same situation but have persevered with the Lanreotide injections monthly for 6 yrs now. I do find my life far more difficult to manage with the side affects. What to eat without upsetting my metabolism etc etc. I have practically given up going out to dinner now which is something I used to enjoy, also going away, find it too much of a worry!
Can I ask what side affects you found the worst, I am just told by my Oncologist that it’s something you have to work out for yourself as every one is different.I had no problems before the Lanreotide.
Many thanks.