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

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

My partner diagnosed with CRC 6 mths ago. Had surgery but METs to multiple bone lesions. 5 mths on lanteotide. Painful stools and nausea this month more than previous. Next treatment is in a few days. Will notify Dr prior to injection. Grateful to be part of this discussion l am constantly getting valued information and hope

Dear spinhead,
I hope that you are doing well. I learned a lot from your post. I’m just diagnosed with pNET and very scared. I’m from Canada and don’t have insurance in US. I wonder if you know if I can do all the tests and treatments in Canada but have 2nd opinion from Mayo. Thanks

I honestly have no idea but you should reach out to Mayo and see if they could take you. There’s no better care than Mayo. I live in Las Vegas and was under the care of an oncologist here who basically just put me on lanreotide shots. “Standard procedure” mainly because he didn’t know much about neuroendocrine cancer! I’m going on my 4th year after having the tumor on my liver removed. I go to mayo every six months for my scans. So far so good, nothings changed but I hold my breath before every scan. I chose to get off the shots because they wreaked havoc on my system. So for me when the treatment didn’t “cure” my cancer & make my quality of life worse I chose to stop it. I do hope you reach out to Mayo and I wish you God speed. Stay in touch if you like. ♥️

Hello @awu99 and welcome to the NETs group on Mayo Connect. I see that you have recently been diagnosed with a pNET. It is great that you are looking for information and a second opinion. If you would like to inquire about a second opinion from Mayo Clinic, I suggest you visit Mayo's appointment center. Here is the link: https://connect.mayoclinic.org/message-center/conversation/13728/.

If you open this link and scroll down, you will see specific information for international patients.

Here is a link to some other pNET discussion groups: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=pNET&index=discussions
As you read the posts in these groups, you will learn about others' experiences with pNET.

As this is a new diagnosis for you, I'm wondering how you are feeling. What symptoms led to the diagnosis of pNET? What treatment(s) have been suggested by your medical team?

How long have you been off the shots? How are your scans? I have so many knows from the shots and hate to think that is my future. Running out of space to get shot as its is all knotty,
Anyway would love to know more about your experience with no shots

Hello @vickihorseman

I'm sorry to hear of all of the "knots" you've experienced as a result of the injections. While you wait for a reply to your post. I was wondering, how long ago you began the injections? Have scans shown any decreases in the number or size of your tumors or have you had any symptom relief?

My husband has NETS stage 4 with tumors throughout his skull and body. One tumor was removed in 1995. At that time there was nothing they could do. He was rediagnosed 28 years later 12/30/23. He is now on Lanriotide every 28 days. He experiences pain in his back near the right side about an hour after eating once in awhile. In July he only had 1 episode but had several in a row the beginning of August. He has been advised to take GasX when it happens and also needs to lie down on his right side to relieve the pain. Most times, it lasts 15-20 minutes but had an episode lasting an hour last week. He is 81 so it is often hard to tell if a symptom is due to age or cancer. Thankfully he doesn't experience the diarhea that so many of you on Connect experience. He golfs daily, does 120 pushups and rides a bike 30 minutes daily. We are thankful for each day and do our best to make the best of this difficult cancer.

Hello @rkklinger,

I so admire the attitude you and your husband have in the face of this long-term chronic condition he has experienced. I see that he has discomfort after meals. I want to suggest looking at another discussion on Connect, which might be helpful. Here is the title and the link:

--How Do I Eat After Digestive Tract Surgery
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
Often, minor changes in the quality or quantity of food can make a difference in symptoms. There are members who have posted in this group who have a similar diagnosis to your husband's, and their suggestions might be helpful.

You say that he had surgery in 1995. was the surgery in the upper digestive tract? I look forward to hearing from you again.

Thank you for the link on eating. It was interesting. The surgery in 1995 was for 1 tumor between the ilium and the bowel. 7 of the 11 lymph nodes removed were malignant. His 5HIAA was checked for 12 years and he decided not to check in yearly after that. He has lived a very normal life with no issues until a few years ago when he couldn't taste food. That started a couple of years before he had Covid so it wasn't related. With the amount of tumors throughout his body and skull, the cancer has obviously been metastizing for several years. We are meeting monthly with a Nutrition Oncologist at Mayo. Unfortunately, I haven't found any definite consistency with any certain foods. The pain just seems to pop up at different times during the month after injection. We go in for scans, etc on October 6. This is the first time since rediagnosis that he has gone 6 months so we are a little anxious. I really appreciate all of the information I'm seeing on Connect.