1. < Neuroendocrine Tumors (NETs)
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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.

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hollywood817 | @hollywood817 | Nov 19, 2023

I’ve received 12 lanreotide injections (every 21 days) and had diarrhea and fatigue after the first one but no symptoms with the others. I’d ask my doctor. Continued success with your journey. Stay positive! They are coming out with new drugs daily to help us!

REPLY
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Teresa, Volunteer Mentor | @hopeful33250 | Nov 18, 2023
In reply to @suelehmann "I have the same situation but have persevered with the Lanreotide injections monthly for 6 yrs..." + (show)
Profile picture for suelehmann @suelehmann

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.

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Hello @suelehmann and welcome to the NETs support group on Mayo Connect. You mentioned that you have been taken Lanreotide injections for six years. If you could share a bit more about your NETs experience, I'm wondering where your NETs are located? Have you had surgery in addition to the Lanreotide injections?

I'm assuming that your problems with Lanreotide injections might have something to do with having diarrhea? Has your doctor offered you any other treatment that might help? As you have a problem eating, I'm wondering if you have you lost a lot of weight.

Please remember that it is always your right to get a second opinion, if you don't feel that your treatment is going well, and the side effects are too difficult for you. Are you currently seeing a NET specialist or a general oncologist?

REPLY
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suelehmann | @suelehmann | Nov 14, 2023
In reply to @spinhead "After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so..." + (show)
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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 🤗🙏♥️♥️♥️

Jump to this post

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.

REPLY
1 reply
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Colleen Young, Connect Director | @colleenyoung | Nov 12, 2023
In reply to @ginnyos "My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines..." + (show)
Profile picture for ginnyos @ginnyos

My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines and the adjoining area. He underwent bypass surgery of a tumor the size of a lemon and was doing fairly well. He started Lanreotide treatment and after 4 injections with no side effects he under went Lutathera treatment. Three days after the treatment he became septic. They were unable to find the area but suspected the Lutathera had worked so well it "melted" a tumor that exposed his instesines. They put in three drains and attempted to "divert" the area.
They decided to halt the Lutathera as the treatment was to dangerous for my spouse. They continued the Lanreotide. After another 2 shots he developed issues with his gall bladder; a side effect of Lanreotide. He became setic again. He recovered and continued with the Lanreotide shots. After that next shot he got a nasty case of Vertigo from which he has not totally recovered. After the next Lanreotide shot - after drinking a cup of chicken soup and going to bed he began to regurgiate the soup and coughing. In the morning his Blood pressure was down as wash his oxygen level. We went to the ER and they diagnosed aspirational pneumonia. The oncologist thought it was a conincidece. He just had a shot again and the same thing happened. This time we got him up out of bed and sat up until 2am. He was better in the morning and hasn't had an issue since.
Has anyone had any sort of similar side effects. The oncologist still thinks it's coincidental. But my spouse who is on TPN is now reluctant to eat any solid food for fear he will aspirate again.
Any suggestions from anyone would be appreciated.
Hang in there,
Ginny

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Hi Ginny, I’d like to add my welcome to @hopeful33250’s.

Just checking in. How are YOU doing? This is a lot to manage and I’m sure it is really hard to see your husband suffer. How is he doing? Is he still on TPN and at the hospital?

REPLY
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Teresa, Volunteer Mentor | @hopeful33250 | Nov 6, 2023
In reply to @ginnyos "My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines..." + (show)
Profile picture for ginnyos @ginnyos

My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines and the adjoining area. He underwent bypass surgery of a tumor the size of a lemon and was doing fairly well. He started Lanreotide treatment and after 4 injections with no side effects he under went Lutathera treatment. Three days after the treatment he became septic. They were unable to find the area but suspected the Lutathera had worked so well it "melted" a tumor that exposed his instesines. They put in three drains and attempted to "divert" the area.
They decided to halt the Lutathera as the treatment was to dangerous for my spouse. They continued the Lanreotide. After another 2 shots he developed issues with his gall bladder; a side effect of Lanreotide. He became setic again. He recovered and continued with the Lanreotide shots. After that next shot he got a nasty case of Vertigo from which he has not totally recovered. After the next Lanreotide shot - after drinking a cup of chicken soup and going to bed he began to regurgiate the soup and coughing. In the morning his Blood pressure was down as wash his oxygen level. We went to the ER and they diagnosed aspirational pneumonia. The oncologist thought it was a conincidece. He just had a shot again and the same thing happened. This time we got him up out of bed and sat up until 2am. He was better in the morning and hasn't had an issue since.
Has anyone had any sort of similar side effects. The oncologist still thinks it's coincidental. But my spouse who is on TPN is now reluctant to eat any solid food for fear he will aspirate again.
Any suggestions from anyone would be appreciated.
Hang in there,
Ginny

Jump to this post

Hello @ginnyos and welcome to the NETs support group on Mayo Connect. I can certainly understand your concerns. Your husband is having a difficult time with NETs treatments and becoming septic is certainly a serious condition.

First of all, I would suggest that your husband have a consultation with a NET specialist. This can be a virtual consultation or an in-person consultation. Assuming that these reactions to the treatments are just "coincidental" should be reviewed by an expert.

There are NET specialists throughout the country. Mayo Clinic has NET specialists at all three of their locations. Here is a link to help schedule an appointment at Mayo, http://mayocl.in/1mtmR63. If for any reason he cannot be seen by a Mayo physician, here is a list of NET specialists world-wide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor//

I'm wondering what type of symptoms led to the NET diagnosis. Also, how long ago was your husband's surgery?

REPLY
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ginnyos | @ginnyos | Nov 5, 2023

My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines and the adjoining area. He underwent bypass surgery of a tumor the size of a lemon and was doing fairly well. He started Lanreotide treatment and after 4 injections with no side effects he under went Lutathera treatment. Three days after the treatment he became septic. They were unable to find the area but suspected the Lutathera had worked so well it "melted" a tumor that exposed his instesines. They put in three drains and attempted to "divert" the area.
They decided to halt the Lutathera as the treatment was to dangerous for my spouse. They continued the Lanreotide. After another 2 shots he developed issues with his gall bladder; a side effect of Lanreotide. He became setic again. He recovered and continued with the Lanreotide shots. After that next shot he got a nasty case of Vertigo from which he has not totally recovered. After the next Lanreotide shot - after drinking a cup of chicken soup and going to bed he began to regurgiate the soup and coughing. In the morning his Blood pressure was down as wash his oxygen level. We went to the ER and they diagnosed aspirational pneumonia. The oncologist thought it was a conincidece. He just had a shot again and the same thing happened. This time we got him up out of bed and sat up until 2am. He was better in the morning and hasn't had an issue since.
Has anyone had any sort of similar side effects. The oncologist still thinks it's coincidental. But my spouse who is on TPN is now reluctant to eat any solid food for fear he will aspirate again.
Any suggestions from anyone would be appreciated.
Hang in there,
Ginny

REPLY
2 replies
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spinhead | @spinhead | Oct 16, 2023
In reply to @hopeful33250 "Thanks for the update, @spinhead. I hope that you will post again after your Gallium Scan..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

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?

Jump to this post

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 🤗🙏♥️♥️♥️

REPLY
2 replies
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 2, 2023
In reply to @spinhead "Absolutely will post after the gallium scan. If what I experience will help even one person..." + (show)
Profile picture for spinhead @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.

Jump to this post

That is a great attitude, @spinhead !

REPLY
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spinhead | @spinhead | Oct 2, 2023
In reply to @hopeful33250 "Thanks for the update, @spinhead. I hope that you will post again after your Gallium Scan..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

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?

Jump to this post

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.

REPLY
1 reply
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Teresa, Volunteer Mentor | @hopeful33250 | Oct 2, 2023
In reply to @spinhead "Well I’m going to Mayo on the 11th for my 6 month gallium scan. I’ve been..." + (show)
Profile picture for spinhead @spinhead

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” 🙏♥️🤗

Jump to this post

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?

REPLY
2 replies
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