1. < Neuroendocrine Tumors (NETs)

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

Posted by stevestenberg31 @stevestenberg31, Apr 20, 2023

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.

zebraflower | @zebraflower | Jun 8, 2023
In reply to @pavlina60 "I had 3 Lanreotide injections, due for CT scan in June. I noticed my hair falling..." + (show)
@pavlina60

I had 3 Lanreotide injections, due for CT scan in June.
I noticed my hair falling out and every 2-3 days have trouble falling asleep.. Just bought Melatonin and will try it tonight. Also Vit.B12.
Anyone else has similar issues?

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I have been taking Lanreotide for two years. My hair started falling out and I had fatigue. Turned out to be thyroid. This is related to a medicine I take to reduce the diarrhea caused by both NETs and lanreotide shots. The cholestyramine is great for this, but it absorbs all other medicines. I was taking other meds an hour and a half before the cholestyramine, but now I take synthroid in the morning and nothing else for several hours.

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badi | @badi | Jun 9, 2023
In reply to @hopeful33250 "@hollywood817 I appreciate all of your updates as you go through various treatments. Regarding the cough,..." + (show)
@hopeful33250

@hollywood817

I appreciate all of your updates as you go through various treatments. Regarding the cough, is it an all day cough or just when you are lying down?

I'm thinking that you might want to start a new discussion group about the cough. There may be others who have experienced that and may be able to offer suggestions.

If you decide to start a new discussion group, the title "How to Deal with Coughing due to Liver Mets" might be a good title to attract some attention to the topic.

If you would like some help with starting a new discussion, you can find it here: https://connect.mayoclinic.org/help-center/#how-to-use-mayo-clinic-connect
Just click on, "How to Start a New Discussion"

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Hi

Hubby is experienced a lot of swelling. Is that normal after the injection?

It is only his legs, but he also has some cellulitis. He is battling to wear the pressure socks.

Any remedies that will help? We try to elevate the legs but it is not assisting us. He is still going to the toilet.
Any advice will be appreciated, as he is drinking water tablets but it is not helping.

Thank you

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1 reply
hollywood817 | @hollywood817 | Jun 9, 2023
In reply to @sarahfloranne "I have a neuroendocrine pancreatic tumor. I have had two treatments with Lanreotide. I have so..." + (show)
@sarahfloranne

I have a neuroendocrine pancreatic tumor. I have had two treatments with Lanreotide. I have so much gas & bloating now. It is painful & embarrassing. It lessens some before each treatment, but is always there. Did you have that reaction?

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I had bloating with the first 2 lanreotide injections. Took gasX. Haven’t had any bloating with last 3 injections. Not much you can do to avoid them. Hopefully they’ll dissipate over time. All the best, Tom

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hollywood817 | @hollywood817 | Jun 9, 2023
In reply to @badi "Hi Hubby is experienced a lot of swelling. Is that normal after the injection? It is..." + (show)
@badi

Hi

Hubby is experienced a lot of swelling. Is that normal after the injection?

It is only his legs, but he also has some cellulitis. He is battling to wear the pressure socks.

Any remedies that will help? We try to elevate the legs but it is not assisting us. He is still going to the toilet.
Any advice will be appreciated, as he is drinking water tablets but it is not helping.

Thank you

Jump to this post

Tell him to wear the socks! They will help! - Tom

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phyllisden | @phyllisden | Jun 10, 2023
In reply to @sarahfloranne "I have a neuroendocrine pancreatic tumor. I have had two treatments with Lanreotide. I have so..." + (show)
@sarahfloranne

I have a neuroendocrine pancreatic tumor. I have had two treatments with Lanreotide. I have so much gas & bloating now. It is painful & embarrassing. It lessens some before each treatment, but is always there. Did you have that reaction?

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@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.

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1 reply
spinhead | @spinhead | Sep 20, 2023

I quit talking the lanreotide shots after a year because I felt it gave me more issues than the cancer. I asked my oncologist at Mayo and he said if the side effects of lanreotide were worse than the cancer symptoms why take them. Also I specifically asked him if lanreotide shrinks the tumor and he said no. And the oncologist I have here in Las Vegas doesn’t seem to know anything about nets other than looking through the internet like I do. He can’t even tell me “why” I should take the shots 🤷‍♀️

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spinhead | @spinhead | Sep 20, 2023
In reply to @phyllisden "@sarahfloranne, Sorry to hear you’ve had this side effect to the Lanreotide - which unfortunately is..." + (show)
@phyllisden

@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.

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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???

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1 reply
stevestenberg31 | @stevestenberg31 | Sep 20, 2023
In reply to @spinhead "What happens if you don’t take either one? I was under the impression that either shot..." + (show)
@spinhead

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???

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Lanreotide is supposed to stop the NETs from growing.

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spinhead | @spinhead | Sep 20, 2023

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!

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3 replies
stevestenberg31 | @stevestenberg31 | Sep 20, 2023
In reply to @spinhead "That’s what I thought. But according to the Mayo oncologist he said “not so”. He said..." + (show)
@spinhead

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!

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Hmm, id get a 2nd opinion.

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