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

Hello @chella51 and welcome to the NETs discussion on Mayo Connect. You say, "...so this a new and somewhat scary journey for me." Please know that we all felt that way when we were handed the diagnosis of NETs. I'm very glad that you have found help in reading about the journeys of others. That is what helped me when I first joined in 2016.

I look forward to getting to know you. If you are comfortable doing so, would you share a bit about your NETs diagnosis? For example, how long ago were you diagnosed; were you having symptoms or was it an incidental finding?

I’m having similar problems and am no sure whether it’s the lanreotide or the 15” removed fm my small intestine. Is seem to ricochet between diarrhea and constipation with intermittent nausea. I appreciate any tips others have used. I do recommend the Relief Band for nausea relief. I used to use it for motion sickness but it helps a lot with current situation. It is FDA approved for nausea from migraines, chemo and other sources. It delivers a small electric “ tingle” to the nerves which helps a lot. It doesn’t help with stomach pain though

Hello @mbg20,

I can understand your frustration with diarrhea and constipation with intermittent nausea. It is difficult to deal with these symptoms.

What type of eating plan do you follow?

I really never got a formal eating plan so am trying to invent one. I eat more frequent, smaller meals, avoid fatty food and generally aim for lowFODMAP foods. Am slowly introducing more fiber and food types. And I eat yogurt once or twice a day. I sure would like to consult with a dietician but it seems like a challenge to find one. The docs at Johns Hopkins are really competent but seem uninterested in dietary issues other than saying I should drink Ensure which I have trouble gagging down. So I’m a bit discouraged.

@mbg20

If it were me, I would ask the doctor (through a phone call or by email in the patient portal) for a referral to a registered dietician. I'm sure that John Hopkins has many registered dieticians on staff. Sometimes, you need to specifically request a referral in order to get what you need.

It is important for all of us to be proactive in managing our health needs. Will you let me know how that works out for you?

I agree. Im 55yrs old. I was 185lbs when i started my once a month Lanreotide injection 2/15/23. 3wks ago i had emergency surgery removing part of my SI and the primary NET in my SI b/c of a blockage. I was down to 167lbs 7days ago. I met with a dietitian that specializes in oncology. Im now 172lbs and eating more calories and things i didnt know i could eat a week ago. I feel better eating more variety including lowfat meat like chicken and turkey (not red meat). I was only eating fish and vegan, and soft low sugar foods as i was overly worried about if i could process with NETs in my liver as well. Good luck.🙏

Yes the bloating in my case was from lanreotide and Ocreotide
My stomach is perfectly flat now that I stopped the injections
The side effects from both injections were to much for me to handle
The bloating was the least of the issues
Good luck to you

Where is your NET? Could that be partially blocking your GI system? I had a partial, then full blockage resulting in emergency operation to remove my SINET and gallbladder. Now im thinking it was not a side effect of the Lanreotide for me

I have an unknown primary
They think in my small intestines but it isn’t showing on any MRIs or the 2 PET scans
In 2019 I had a liver resection and my gallbladder removed
I was cancer free for 2 1/2 yrs until I was diagnosed with metastasis on my liver
I was feeling great until I started the injections
I did them for 1 year the tumors were still growing and nee ones were appearing
The shots weren’t working the side effects were terrible so I stopped in March and I am finally starting to feel better
I am sure for me it was the injections

I started a journal of what I ate that didn’t agree with me
Also eat very small portions of food several times a day
That should help it helped me
It took me 2 years after they took out my gallbladder to get back to normal eating