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.

karenfouquet | @karenfouquet | Jun 8 1:42pm
In reply to @kathleenandbob "This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013...." + (show)
@kathleenandbob

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013. Found by accident when being worked up for abdomenal pains and diarrhea. CT showed liver tumors. Not until 2014 during surgery to remove tumors did the surgeon visual the primary at ileocecal area. Hemi-colectomy removed primary.

I have taken Octreotide in the first few years and then Lanreotide depot monthly. My diarrhea is manageable. Tincture of Opium (to stop spasms and pain and diarrhea when eating) and Oxycontin twice a day to constipate me...has been my quality of life saviors. After a few years of this routine, I can plan time away from my bathroom.

On diagnosis 5 years was expected longevity. My doc said he had a patient living with this 10 years!
I am now 10 years out and my scans and labs are still ok with no detectable new growth. As hard and painful as this disease can be....I am still here.

I do have days that I cannot explain to myself why I feel so awful...but then a good day. I have found my symptoms debilitating at times, but I am still here (72). It is my belief that our uniqueness makes trying to answer all the questions we may have. If I have to continue this miasma of symptoms....I will....I struggle with depression about all this, but when I see my grandchild and family....I am thankful. My advice....continue to treat yourself and be thankful for each day.
KPM

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What an inspiration your words carry to me. I’ve been trying for over a yr to find out what’s wrong with me.
Waiting on new CAT scan and blood tests. My symptoms are pretty much the same as yours when you were diagnosed…KK

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amygirl | @amygirl | Jun 2 11:47am
In reply to @onesillyrn "My 88 year old loved one has had a gallbladder full of stones before starting lanreotide..." + (show)
@onesillyrn

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide monthly injections for metastatic lung carcinoids. I questioned the oncologist because the warning mention not to give if you have gallstones. He pressed on that it was fine. Repeat this pattern every month because she had worsening abdominal pain., a palpable hardened Right upper quadrant with intense sweating. Finally the oncologist ( if you can call him that) said " oh the cancer must be worse... time for either chemo ( which she is too frail for) or hospice. Oh ... but since you are here... how about 1 more injection of lanreotide." Thankfully my loved one turned down the shot.( That he already said was not helping ) We are now a few weeks from that appointment.. her urine is increased... the hardened spot is gone... and the abdominal pain too! Not impressed with lanreotide by this experience.

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Please press about having gall bladder removed. I went to ER for another reason but found out I had a severely infected inflamed gallblader and stones blocking the bile duct (mirizzi) also inflammed liver duct to not drain I needed to stay in hospital to clear infection a tube and gall bladder bag for 3 mths before safe to do surgery.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 1 7:31am
In reply to @onesillyrn "My 88 year old loved one has had a gallbladder full of stones before starting lanreotide..." + (show)
@onesillyrn

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide monthly injections for metastatic lung carcinoids. I questioned the oncologist because the warning mention not to give if you have gallstones. He pressed on that it was fine. Repeat this pattern every month because she had worsening abdominal pain., a palpable hardened Right upper quadrant with intense sweating. Finally the oncologist ( if you can call him that) said " oh the cancer must be worse... time for either chemo ( which she is too frail for) or hospice. Oh ... but since you are here... how about 1 more injection of lanreotide." Thankfully my loved one turned down the shot.( That he already said was not helping ) We are now a few weeks from that appointment.. her urine is increased... the hardened spot is gone... and the abdominal pain too! Not impressed with lanreotide by this experience.

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Hello @onesillyrn and welcome to the NETs support group on Mayo Connect. From what you have posted, it might be a good idea for your loved one to have a consultation with a NET specialist. These are doctors who are specially trained to treat NETs. Mayo Clinic has NET specialists at all three locations. Here is a link with appointment information, (http://mayocl.in/1mtmR63). If an appointment is not possible at Mayo Clinc, here is a list of NET specialists throughout the country, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

How long ago was your loved one diagnosed with lung carcinoids? What other treatments has she/he had?

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onesillyrn | @onesillyrn | Jun 1 1:38am

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide monthly injections for metastatic lung carcinoids. I questioned the oncologist because the warning mention not to give if you have gallstones. He pressed on that it was fine. Repeat this pattern every month because she had worsening abdominal pain., a palpable hardened Right upper quadrant with intense sweating. Finally the oncologist ( if you can call him that) said " oh the cancer must be worse... time for either chemo ( which she is too frail for) or hospice. Oh ... but since you are here... how about 1 more injection of lanreotide." Thankfully my loved one turned down the shot.( That he already said was not helping ) We are now a few weeks from that appointment.. her urine is increased... the hardened spot is gone... and the abdominal pain too! Not impressed with lanreotide by this experience.

REPLY
2 replies
lyons1234 | @lyons1234 | Feb 26, 2024

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25, 2024
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?

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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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gig666 | @gig666 | Feb 25, 2024

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?

REPLY
1 reply
bhampton1962 | @bhampton1962 | Feb 25, 2024

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25, 2024
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.

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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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