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

That’s what I thought. But according to the Mayo oncologist he said “not so”. He said it was there to help with the symptoms. So frustrating. Thank you for replying though. I’ll do a lot more research!

That’s what I thought. But according to the Mayo oncologist he said “not so”. He said it was there to help with the symptoms. So frustrating. Thank you for replying though. I’ll do a lot more research!

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.

Hi,

My husband experiences the same symptoms after his Octreotide injection. Bad diaree, fatigue, fevers, vomiting, shivers, and overall weakness. This can last from 5 to 10 days.
When we discussed this with the oncologist, she mentioned that if he is not getting this, he will surely pass away as this injection assist to stop cancer growth and body pains. He has carcinoid tumor cancer (4th stage).
He will go tomorrow for his 7th injection.

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 🙏

Hello @spinhead,

There are several members of the group who have had a reduction in NETs (either a reduction in the number of the NETs or in the size) because of the Lanreotide injections. Perhaps each person's NETs respond differently to the treatment.

As @stevestenberg31 mentioned, perhaps another opinion would be helpful to you right now. It might help clear the confusion you are experiencing.

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.

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” 🙏♥️🤗

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?

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.