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

After getting my gallium scan they found no changes, no spreading. Basically nothing has changed so I’m staying off the lanreotide unless things change because for me the side affects were worse than what the cancer symptoms are. I do want to express though what works for me may not work for others so please listen to your oncologist. I also want to express that if you have the opportunity please seek help from Mayo Clinic if you possibly can. They have the best most advanced knowledge on neuroendocrine tumors. If you’re getting treatment elsewhere please at least give yourself the benefit of having Mayo give you a 2nd opinion. This is your life, make it last. God bless each of you and I pray for you all 🤗🙏♥️♥️♥️

My spouse was diagnosed with GEP-NET and "heavy load" of tumors on the the small intestines and the adjoining area. He underwent bypass surgery of a tumor the size of a lemon and was doing fairly well. He started Lanreotide treatment and after 4 injections with no side effects he under went Lutathera treatment. Three days after the treatment he became septic. They were unable to find the area but suspected the Lutathera had worked so well it "melted" a tumor that exposed his instesines. They put in three drains and attempted to "divert" the area.
They decided to halt the Lutathera as the treatment was to dangerous for my spouse. They continued the Lanreotide. After another 2 shots he developed issues with his gall bladder; a side effect of Lanreotide. He became setic again. He recovered and continued with the Lanreotide shots. After that next shot he got a nasty case of Vertigo from which he has not totally recovered. After the next Lanreotide shot - after drinking a cup of chicken soup and going to bed he began to regurgiate the soup and coughing. In the morning his Blood pressure was down as wash his oxygen level. We went to the ER and they diagnosed aspirational pneumonia. The oncologist thought it was a conincidece. He just had a shot again and the same thing happened. This time we got him up out of bed and sat up until 2am. He was better in the morning and hasn't had an issue since.
Has anyone had any sort of similar side effects. The oncologist still thinks it's coincidental. But my spouse who is on TPN is now reluctant to eat any solid food for fear he will aspirate again.
Any suggestions from anyone would be appreciated.
Hang in there,
Ginny

Hello @ginnyos and welcome to the NETs support group on Mayo Connect. I can certainly understand your concerns. Your husband is having a difficult time with NETs treatments and becoming septic is certainly a serious condition.

First of all, I would suggest that your husband have a consultation with a NET specialist. This can be a virtual consultation or an in-person consultation. Assuming that these reactions to the treatments are just "coincidental" should be reviewed by an expert.

There are NET specialists throughout the country. Mayo Clinic has NET specialists at all three of their locations. Here is a link to help schedule an appointment at Mayo, http://mayocl.in/1mtmR63. If for any reason he cannot be seen by a Mayo physician, here is a list of NET specialists world-wide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor//

I'm wondering what type of symptoms led to the NET diagnosis. Also, how long ago was your husband's surgery?

Hi Ginny, I’d like to add my welcome to @hopeful33250’s.

Just checking in. How are YOU doing? This is a lot to manage and I’m sure it is really hard to see your husband suffer. How is he doing? Is he still on TPN and at the hospital?

I have the same situation but have persevered with the Lanreotide injections monthly for 6 yrs now. I do find my life far more difficult to manage with the side affects. What to eat without upsetting my metabolism etc etc. I have practically given up going out to dinner now which is something I used to enjoy, also going away, find it too much of a worry!
Can I ask what side affects you found the worst, I am just told by my Oncologist that it’s something you have to work out for yourself as every one is different.I had no problems before the Lanreotide.
Many thanks.

Hello @suelehmann and welcome to the NETs support group on Mayo Connect. You mentioned that you have been taken Lanreotide injections for six years. If you could share a bit more about your NETs experience, I'm wondering where your NETs are located? Have you had surgery in addition to the Lanreotide injections?

I'm assuming that your problems with Lanreotide injections might have something to do with having diarrhea? Has your doctor offered you any other treatment that might help? As you have a problem eating, I'm wondering if you have you lost a lot of weight.

Please remember that it is always your right to get a second opinion, if you don't feel that your treatment is going well, and the side effects are too difficult for you. Are you currently seeing a NET specialist or a general oncologist?

I’ve received 12 lanreotide injections (every 21 days) and had diarrhea and fatigue after the first one but no symptoms with the others. I’d ask my doctor. Continued success with your journey. Stay positive! They are coming out with new drugs daily to help us!

@kathleenandbob:
Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but my small intestine primary NET w/liver met- recent MRI shows shrinkage. I am a positive thinker; however, my questionable mortality is always with me. It is so rewarding to read your post and I realize I’ve just got to keep Keepin on. Wishing you good days ahead. Bette

Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid, tumor in base of both lungs. They say early stage! I do not believe as l have had NETS. that lead ME to diagnose this! flushing, abdominal fullness, eating almost nothing, gained weight. So far not showed up anywhere else, but my lungs. The report says best block for Ancillary Stud? Positive synaptophysin, Chromogranin, TTF-1 (weak) pink cut to keratin. I see a oncologist at UMASS for over 2 years, due to a iron deficiency, had 9 iron infusions, the iron went to 50 but my RBC is super high, she has no idea why. Now this Neuro endocrine tumors " very small, l have had the nodules for 7 years, followed yearly Cat scans. Sept.2023 had MRI of my colon and it showed changes in lung nodules. G.I. track was full of Polyps (9) and diverticulitis inflammation in my large sigmoid. I need guidance, they say roll the dice l am 73! Mass. General Cancer Center l want second opinion, the pulmonary specialist, l see Weds. I see a NPT. Not doctor. Help!!! Surgery they said lower lobes R.L is dangerous complications etc.

Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. NETs/carcinoids is still considered a rare cancer diagnosis and it is important to find a place where you can meet others who are traveling on this same path.
On Connect, we have several NETs discussion groups for people with lung carcinoids. I would encourage you to read about their experiences and to ask questions in these discussions. Here ais a link to one of those discussions:

--Anyone Had Surgery to Remove Typical Carcinoids of the Lung
https://connect.mayoclinic.org/discussion/typical-carcinoids/

Here you will meet @californiazebra and @pattirushing. If you click on "Reply" under one of their posts, you can then ask them questions and discuss your own situation more fully.

One of the most important things when dealing with NETs is to have at least one consultation with a NET specialist. These are oncologists who have special training with NETs. They are your very best resource. They can help you develop the best treatment plan.

Mayo Clinic has three locations where NET specialists are available. If you would like an in-person or virtual consultation, here is a link to appointment information: http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is list of NET specialists worldwide. The U.S. specialists are listed first, by state:
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Have you had any symptoms of coughing, wheezing, etc.?