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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Teresa, Volunteer Mentor | @hopeful33250 | Sep 20 7:47am
In reply to @rkklinger "Thank you for the link on eating. It was interesting. The surgery in 1995 was for..." + (show)
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Thank you for the link on eating. It was interesting. The surgery in 1995 was for 1 tumor between the ilium and the bowel. 7 of the 11 lymph nodes removed were malignant. His 5HIAA was checked for 12 years and he decided not to check in yearly after that. He has lived a very normal life with no issues until a few years ago when he couldn't taste food. That started a couple of years before he had Covid so it wasn't related. With the amount of tumors throughout his body and skull, the cancer has obviously been metastizing for several years. We are meeting monthly with a Nutrition Oncologist at Mayo. Unfortunately, I haven't found any definite consistency with any certain foods. The pain just seems to pop up at different times during the month after injection. We go in for scans, etc on October 6. This is the first time since rediagnosis that he has gone 6 months so we are a little anxious. I really appreciate all of the information I'm seeing on Connect.

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@rkklinger

I'm glad to hear that you are meeting with a Nutrition Oncologist at Mayo, which must be helpful. Was it suggested that he eat small, more frequent meals? I would love to hear any suggestions mentioned by the Nutrition Oncologist.

I am glad that you found Connect and that the information here has helped you. I can understand you feeling anxious about the October 6 scan. We all have scan-anxiety.

I look forward to hearing from you as you have questions or need a listening ear.

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vickihorseman | @vickihorseman | Sep 21 6:44am
In reply to @hopeful33250 "Hello @vickihorseman I'm sorry to hear of all of the "knots" you've experienced as a result..." + (show)
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Hello @vickihorseman

I'm sorry to hear of all of the "knots" you've experienced as a result of the injections. While you wait for a reply to your post. I was wondering, how long ago you began the injections? Have scans shown any decreases in the number or size of your tumors or have you had any symptom relief?

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Hi there Teresa,
It’s been a little over a year that I’ve been on the shots. My first scan was after 6 months on meds and no tumor growth was detected. I have a bunch in my liver. Two that are in specific lobes and a bunch of little hanging out everywhere.

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vickihorseman | @vickihorseman | Sep 21 6:49am
In reply to @hopeful33250 "Hello @vickihorseman I'm sorry to hear of all of the "knots" you've experienced as a result..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @vickihorseman

I'm sorry to hear of all of the "knots" you've experienced as a result of the injections. While you wait for a reply to your post. I was wondering, how long ago you began the injections? Have scans shown any decreases in the number or size of your tumors or have you had any symptom relief?

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Little over a year and definitely helps. The tumors are the same but did not grow.

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fraaseo | @fraaseo | Sep 21 10:50am
In reply to @rkklinger "My husband has NETS stage 4 with tumors throughout his skull and body. One tumor was..." + (show)
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My husband has NETS stage 4 with tumors throughout his skull and body. One tumor was removed in 1995. At that time there was nothing they could do. He was rediagnosed 28 years later 12/30/23. He is now on Lanriotide every 28 days. He experiences pain in his back near the right side about an hour after eating once in awhile. In July he only had 1 episode but had several in a row the beginning of August. He has been advised to take GasX when it happens and also needs to lie down on his right side to relieve the pain. Most times, it lasts 15-20 minutes but had an episode lasting an hour last week. He is 81 so it is often hard to tell if a symptom is due to age or cancer. Thankfully he doesn't experience the diarhea that so many of you on Connect experience. He golfs daily, does 120 pushups and rides a bike 30 minutes daily. We are thankful for each day and do our best to make the best of this difficult cancer.

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Just a thought, does your husband still have his gallbladder? The shots are known to cause gallbladder issues.

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ricki8 | @ricki8 | Sep 21 12:27pm
In reply to @hopeful33250 "@rkklinger I'm glad to hear that you are meeting with a Nutrition Oncologist at Mayo, which..." + (show)
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@rkklinger

I'm glad to hear that you are meeting with a Nutrition Oncologist at Mayo, which must be helpful. Was it suggested that he eat small, more frequent meals? I would love to hear any suggestions mentioned by the Nutrition Oncologist.

I am glad that you found Connect and that the information here has helped you. I can understand you feeling anxious about the October 6 scan. We all have scan-anxiety.

I look forward to hearing from you as you have questions or need a listening ear.

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I agree with rkklinger that eating small and more frequent meals is better in this circumstance. I also found that when starting most treatments, it could take a bit before symptoms show, and likewise when stopping (the effect can continue for a while). This has been my experience, and likely we are all different. The right diet also makes it easier on our systems.

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rkklinger | @rkklinger | Sep 21 3:46pm
In reply to @fraaseo "Just a thought, does your husband still have his gallbladder? The shots are known to cause..." + (show)
Profile picture for fraaseo @fraaseo

Just a thought, does your husband still have his gallbladder? The shots are known to cause gallbladder issues.

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He does have his gallbladder. Thank you for that information. We will talk to the Dr about that.

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Teresa, Volunteer Mentor | @hopeful33250 | Sep 22 1:50pm
In reply to @rkklinger "He does have his gallbladder. Thank you for that information. We will talk to the Dr..." + (show)
Profile picture for rkklinger @rkklinger

He does have his gallbladder. Thank you for that information. We will talk to the Dr about that.

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@rkklinger
That was good information given by @fraaseo. I have had three surgeries for NETs, and during the second surgery, the surgeon removed the gallbladder; he said it was "in the way" of the surgical area. I now realize that was a good thing, as having a gallbladder might interfere with any treatment that I may need down the road.

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