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

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!

Thank yoy

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,

You might inquire as to a nearby facility that has this scan available. Major hospital and/or research centers will often have this equipment.

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?

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!

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.

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.

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.?

Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid, tumor in base of both lungs. They say early stage! I do not believe as l have had NETS. that lead ME to diagnose this! flushing, abdominal fullness, eating almost nothing, gained weight. So far not showed up anywhere else, but my lungs. The report says best block for Ancillary Stud? Positive synaptophysin, Chromogranin, TTF-1 (weak) pink cut to keratin. I see a oncologist at UMASS for over 2 years, due to a iron deficiency, had 9 iron infusions, the iron went to 50 but my RBC is super high, she has no idea why. Now this Neuro endocrine tumors " very small, l have had the nodules for 7 years, followed yearly Cat scans. Sept.2023 had MRI of my colon and it showed changes in lung nodules. G.I. track was full of Polyps (9) and diverticulitis inflammation in my large sigmoid. I need guidance, they say roll the dice l am 73! Mass. General Cancer Center l want second opinion, the pulmonary specialist, l see Weds. I see a NPT. Not doctor. Help!!! Surgery they said lower lobes R.L is dangerous complications etc.

@kathleenandbob:
Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but my small intestine primary NET w/liver met- recent MRI shows shrinkage. I am a positive thinker; however, my questionable mortality is always with me. It is so rewarding to read your post and I realize I’ve just got to keep Keepin on. Wishing you good days ahead. Bette