Anyone else get bloating and abdominal pain from NETS or Lanreotide?
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.
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.
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.
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!
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?
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.
Thank yoy
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!