Anyone else get bloating and abdominal pain from NETS or Lanreotide?
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.
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 🤗🙏♥️♥️♥️
That is a great attitude, @spinhead !
Absolutely will post after the gallium scan. If what I experience will help even one person than I feel blessed the the good Lord has afforded me the privilege of doing so.
Thanks for the update, @spinhead. I hope that you will post again after your Gallium Scan on the 11th and I hope that gives you an understanding of what help the Lanreotide injection(s) provided for you.
I look forward to hearing from you again. Will you continue to post with your concerns and questions?
Same thing my Mayo oncologist said.
Well I’m going to Mayo on the 11th for my 6 month gallium scan. I’ve been off lanreotide for 6 months exactly since my last scan so I guess I’ll see. If I have to get back on it to keep the slow the cancer down then I guess I have a decision to make. The thing is I’m 71 October 18th so I have to ask myself do I want to live longer with the horrible side effects of the injections or do I want to at least have somewhat of a life but shorter? My faith sustains me and reminds me there “so much more after this” 🙏♥️🤗
Follow up; had to stop the vitamin b complex! It sent me into orbit; bad heart palpitations, anxiety and dizziness. Once I stopped it all got better. It must interfere with hormones???
I’ve never heard any of my doctors say if I don’t take the injection I will pass away!
Interesting. The main symptom I have is the constant diarrhea however when I was taking lanreotide I had constant diarrhea too so I didn’t see the advantage of the shot. I was tired on the shot and tired of the shot. I just started a with vitamin B complex and seem to be getting a bit of energy. Wishing your husband the best and wishing you both Gods healing hands 🙏
Our oncologist said it would not have any affect on the current tumors, but it works at stopping the release of hormones which which was causing the carinoid syndrome. My husband is only on his fifth shot but he seems to feel a lot better right after getting them, and towards the end of the month he seems more worn down.