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

I have a reoccurrence of NETs. One by small intestine and another in the liver.

I’m on chemo, capacitabine and temo. I started the temo on Monday night. A day late because my platelets were low.

I ve had stomach pain when taking the temo. Today I have awful pain from what feels like indigestion. I’ve tried walking which helps some. But the pain is still there. I don’t know if it’s from the cancer or temo. Plus, I have celiac disease. The pan is like, but worse, than when I’ve inadvertently eaten gluten.

Anyone else have this problem?

@larrym62 , it's been a few days since returning home, so I wanted to check in. How are you doing?

Hello @larrym62, and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your journey with NETs and how the hospital dissolved the blockage, eliminating the need for surgery. I was not familiar with this type of treatment.

As this is your first post, please share, as you are comfortable doing so, a little about your journey with NETs. For example, how long ago were you diagnosed? I see that you have had Lanreotide injections. Have you had any other treatments? I look forward to hearing from you again.

@larrym62 Wow, sounds very painful. Why didn’t they just do surgery?

Yes, I was admitted into hospital emergency room from bloating, abdominal pain, and vomiting, and unable to pass a stool 12-11-25 at 12:30 am. After being admitted into hospital and given a room 8 hours later running a couple of days of testing, x-rays and CT scan ending up having a bad blockage in my intestines witch had to be desolve by pumping a special type of contrast down a tube into my stomach and intestines and about 7 hours later and a lot of pain, thank God for morphine blockage started to break up and over next 5 hours was able to clear blockage and start feeling better but still recovering and real tender, I live with this slite bloating and pain every day sometimes worse than others all do to the Neuroendocrine Tumor cancer that I have witch is stage 4, it infects the digestive tract and stomach and intestines, do not really have any side effects from my Lanreotide injection, finally got home from hospital last night about 8:30 pm, I hope this helped answer your question a little bit, God Bless stay strong

Hello @cgamaha,

I see that @colleenyoung and @dbamos1945 have already responded to your first post. I want to join them in welcoming you to the NETs support group on Mayo Connect.

As this is your first post, please share, as you are comfortable doing so, a little about your journey with NETs. For example, how long ago were you diagnosed? What treatments, other than Octreotide, have you had (such as surgeries, etc)?

Lanreotide has been part of my NET journey for 3+ years and I agree that some abdominal upset, Gas and bloating is part of it - I have relieved most of this discomfort by taking a Gas-ex or similar supplement with dinner (more than one or at lunch as well, you decide how your body will react).
I have to be gentle with my mental expectations of cancer treatment side-effects because the BIG picture is longevity for me, not always being the most comfortable.
So far so good… enjoy every day!
dbamos1945

@cgamaha, welcome. Keeping a food journal and taking note of the foods that cause bloating or discomfort is a good idea. What are the top 3 foods you avoid?

Yes, however I take Octreotide instead of the LAN. I’ve done a food journal and found out I’m not able to tolerate some foods but I still get abdominal and back pain.

@rkklinger
That was good information given by @fraaseo. I have had three surgeries for NETs, and during the second surgery, the surgeon removed the gallbladder; he said it was "in the way" of the surgical area. I now realize that was a good thing, as having a gallbladder might interfere with any treatment that I may need down the road.