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.

gig666 | @gig666 | Feb 25 8:39am
In reply to @hopeful33250 "Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that..." + (show)
@hopeful33250

Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. NETs/carcinoids is still considered a rare cancer diagnosis and it is important to find a place where you can meet others who are traveling on this same path.
On Connect, we have several NETs discussion groups for people with lung carcinoids. I would encourage you to read about their experiences and to ask questions in these discussions. Here ais a link to one of those discussions:

--Anyone Had Surgery to Remove Typical Carcinoids of the Lung
https://connect.mayoclinic.org/discussion/typical-carcinoids/
Here you will meet @californiazebra and @pattirushing. If you click on "Reply" under one of their posts, you can then ask them questions and discuss your own situation more fully.

One of the most important things when dealing with NETs is to have at least one consultation with a NET specialist. These are oncologists who have special training with NETs. They are your very best resource. They can help you develop the best treatment plan.

Mayo Clinic has three locations where NET specialists are available. If you would like an in-person or virtual consultation, here is a link to appointment information: http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is list of NET specialists worldwide. The U.S. specialists are listed first, by state:
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Have you had any symptoms of coughing, wheezing, etc.?

Jump to this post

Yes to all, flushing also, extreme bouts Diarrhea with mucous. Itching of skin, all problems had since 6/23.
The cough l blamed on my civic 4 times, wheezing l have blamed on GERD. Last night my chest was very tight. My Oncologist for a blood issue, said my lungs show thickning, hard to get a normal deep breath.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25 8:45am
In reply to @gig666 "Yes to all, flushing also, extreme bouts Diarrhea with mucous. Itching of skin, all problems had..." + (show)
@gig666

Yes to all, flushing also, extreme bouts Diarrhea with mucous. Itching of skin, all problems had since 6/23.
The cough l blamed on my civic 4 times, wheezing l have blamed on GERD. Last night my chest was very tight. My Oncologist for a blood issue, said my lungs show thickning, hard to get a normal deep breath.

Jump to this post

Remember to read the posts from the discussion group in my previous post, @gig666. You will find a lot of helpful members who have lung carcinoids and who can help you with your questions and concerns.

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bhampton1962 | @bhampton1962 | Feb 25 9:00am

I take Octreotide injection SQ three times per day. It has a similar side effect profile and I took Lanreotide in 2018/2019. I do better with the GI side effects if I eat low carb and less sugar. The GI side effects seem to have lessened the longer I take the meds. Hope you find relief!

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gig666 | @gig666 | Feb 25 1:46pm

Is there a pet scan That cat scan the body to see if there are any other NETS. hiding or Metastasized somewhere else, liver. I Understood that the carcinoid hormones come out and get filtered through the liver, can spread cancer. Having all the symptoms of NETS.
Having a slow growing intracranial menginoma, removed 2017, MRI discovered empty Stella succa, also a venous abnormality blockage. Mild focal seizures do happen.
My QUESTION.. THERE IS A HORMONAL GLAND IN THE BRAIN LEFT SIDE, ON MY TUMOR SIDE. I WAS TOLD IT DOES PRODUCE HORMONES, SEEING I HAD A HYSTERECTOMY 40 YEARS AGO. WHAT'S THE CHANCE THIS GLAND IS SECRETING HORMONES THAT ARE FEEDING THESE NODULES I HAVE HAD 10 years monitored, and two years ago cat scan show a growth in lower lobes right and now left lung?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25 2:48pm
In reply to @gig666 "Is there a pet scan That cat scan the body to see if there are any..." + (show)
@gig666

Is there a pet scan That cat scan the body to see if there are any other NETS. hiding or Metastasized somewhere else, liver. I Understood that the carcinoid hormones come out and get filtered through the liver, can spread cancer. Having all the symptoms of NETS.
Having a slow growing intracranial menginoma, removed 2017, MRI discovered empty Stella succa, also a venous abnormality blockage. Mild focal seizures do happen.
My QUESTION.. THERE IS A HORMONAL GLAND IN THE BRAIN LEFT SIDE, ON MY TUMOR SIDE. I WAS TOLD IT DOES PRODUCE HORMONES, SEEING I HAD A HYSTERECTOMY 40 YEARS AGO. WHAT'S THE CHANCE THIS GLAND IS SECRETING HORMONES THAT ARE FEEDING THESE NODULES I HAVE HAD 10 years monitored, and two years ago cat scan show a growth in lower lobes right and now left lung?

Jump to this post

Hello @gig666

Many of the detailed questions you have asked can only be answered by your medical team. You did ask, however, about a scan that can detect other NETs in the body. Here is some information about a scan that can be used for just that purpose. It is the 68GA Dotatate PET. Here is a link to some information about this scan,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
You might inquire as to a nearby facility that has this scan available. Major hospital and/or research centers will often have this equipment.

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lyons1234 | @lyons1234 | Feb 26 7:54pm

Hello stevesrenberg31,
I have been taking octreotide for 8mo. It feels like it works intermittently as I still have many days with carcinoid symptoms. ( flushing after meals, slight bronchial constriction, and bad diarrea)
I had my last PRRT treatment
last month. Now I have extreme bloating and (bad gas)
Stomach feels inflamed. Hopefully onocoligist can figure it out.
Thanks for your input!

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