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

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.

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 🙏

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.

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.

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!

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!

What happens if you don’t take either one? I was under the impression that either shot was just to treat carcinoid symptoms but doesn’t treat the cancer???

@sarahfloranne, Sorry to hear you’ve had this side effect to the Lanreotide - which unfortunately is a common side effect of both Lanreotide and Octreotide. I had my first injection of 20 mg of Octreotide in April 2018 a month after having a small intestine resection due to a blockage caused by a carcinoid tumor. I thought I was going to die from the pain and bloating from the gas. It will likely pass as your body adjusts to the medication. In the meantime there are a few things you can do to help it. Liquid Mylanta works pretty well. Walking and a warm heating pad (or hot water bottle). Peppermint or Stomach Ease tea is good.
I did stay on the Octreotide for a couple of years before switching to Lanreotide but was unable to stay on it for more than six months due to the side effects. So if you continue to have problems on the Lanreotide, you might talk to your doctor about Octreotide. Remember there are options in dealing with this disease.
Good luck.