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

Posted by stevestenberg31 @stevestenberg31, Apr 20 1:08pm

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.

Dear stevestenberg31,
I have NET in pancreas( debulked) with liver metastases. Had 2 Lan injections with similar symptoms/side effects, but only on the day of inj and maybe 1-2 days after. Sharp pain( cramps), nausea, vomiting. Then all is well until next time.
But my ChG A went from 182 after surgery to 56 at the second injection!
take zofran (ondansetron) right before inj. Crackers and swiss cheese saved me.
Keep fighting! And may God help us all!

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I’m so glad you posted this.

I receive octreotide injections with my PRRT treatments. I had my third round of PRRT and third octreotide injection early this month. I believe that lanreotide and octreotide are similar—and I, too, started having abdominal pain and cramping (that actually felt like menstrual cramps) earlier this week. I also have noticed some queasiness if I’ve gone too long without eating or if I’ve eaten the wrong thing—generally anything too heavy or greasy, in particular.
I’m glad I’m not the only one.

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Hi
I had an exceptional NET specialist who started me Lanreotide after 3 injections the side effects were diarrhea to the point of having to wear a diaper bloating nausea sweating major fatigue and brain fog
I had no symptoms before I started
I had to stop
Went to another oncologist and got Octreotide which for the first 2 months were ok
But then slowly started to effect me
My 5th injection gave me an infection at the injection site and after that was all down hill
It never gave me diarrhea but gave me severe carcinoid symptoms to where the 9th injection I thought I was having a stroke
I stopped
I am going back to my original NET team because they are exceptional and my liver is now compromised from either the treatments or the liver embolization I had in January to take the tumor load off the right side of my liver
I haven’t had any injections in 6 weeks and I am feeling wonderful
I have metastatic liver NET carcinoid of unknown origin
There are people that have taken the injections for many years without side effects
You won’t know if you don’t try
Good luck

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GM
Also stay connected to this site
I was so in the dark and reacting in circles in the beginning
Go on line to the support group meeting ask questions
Everyone and everything to hear brings you closer to not feeling helpless

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I agree with Sophia… ask questions here. We are all in the same boat but have different paddles. I know so much more from asking.

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I had Sandostatina shot every 4 weeks (18 doses).
Around 4th I had several stomach pain, vomiting, fever…. it happens just twice.
The other 16 doses had the "common" symptoms

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Hi,

My husband experiences the same symptoms after his Octreotide injection. Bad diaree, fatigue, fevers, vomiting, shivers, and overall weakness. This can last from 5 to 10 days.
When we discussed this with the oncologist, she mentioned that if he is not getting this, he will surely pass away as this injection assist to stop cancer growth and body pains. He has carcinoid tumor cancer (4th stage).
He will go tomorrow for his 7th injection.

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I will have my 4th injection next week. My symptoms include the tumor pains, chills, wetting flatulence, dizziness and fatigue. I am unsure if it’s the radiation, chemotherapy, cancer, or the lanreotide. My team is monitoring as I progress through the treatments. My hope is that my body acclimates to the medications and that the medications are working to to keep the cancer in check.

Blessings to all
CEB

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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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@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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Hello @kathleenandbob and welcome to our NETs discussion group. I am glad that you shared how you are able to find silver linings as you deal with this disease. That is important in dealing with any chronic illness like NETs and carcinoid syndrome.

I had my first surgery for NETs in 2003 (my third surgery was in 2016), so that makes me a 20-year survivor. Like you, some days are better than others, but I too am grateful.

If you are comfortable sharing more, when you had surgery (Hemi-colectomy) for the primary NET, how long were you hospitalized? What changes have you made to your eating habits?

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