NETs: Anyone has Liver debulking for liver metastasis?

I was diagnosed in 1993 by a doctor who performed a colonoscopy after heavy rectal bleeding. He had just read an article on neuroendocrine tumors of the small intestine and referred me to an oncologist who had been a student of Dr. Charles Mortel at Mayo. Mortel had studied these tumors for over 25 years and was the world expert at the time. I had a right colectomy [approx 10 inches], removed the primary tumor by the cecum, an atrophied appendix and several abdominal lymph nodes, then transferred to Mayo. In 2003, I had the left lobe of my liver removed [Mayo], the right lobe resected [w/later ablation to clean up some areas] and an atrophied gallbladder removed. In 2014, I had a bile duct stent inserted after extreme itching and pale feces. In 2018, I had my first series of Lutathera [primarily to address liver mets] with the second series completed earlier this year [2022]. Blood counts were affected but eventually returned to almost low normal levels. I started Octreotide late 2014 and later moved to Lanreotide, Zometa and pancreatic enzymes to facilitate improved digestion. Bone mets appeared approximately 2+ years ago. Received a radio isotope treatment for a Cervical lesion. Largely asymptomatic considering everything and normally have stable numbers.

Wow! To all in this discussion. My husband is due to have his first liver debulking in March. He's in octreotide and other than some minor diarrhea has had no other symptoms. Although he recently is having some wobblyness, not vertigo when walking. Went to ENT found out he had 30% nerve damage in his ear. He's currently going through PT to help with the wobblyness. His curve Oncologist doesn't seem to think the octreotide could be a reason. His family Dr says if the PT doesn't work he'll look again at his current meds for blood pressure, cholesterol etc..... however he's adjusted what he thought would make a difference but it didn't help. Had anyone else had any hearing issues or wobblyness while being on octreotide or with just having NETS in general? Also, I can't see who to address this to but the person who had the METS in the bone, could I ask where yours originated from and how long it took to get to the bone? I'll keep y'all in my thoughts and prayers as I know this has to be very difficult.

Hello @sandy23,

The person who recently mentioned bone METs is @jenntx10. I hope that she will answer some of your questions about her situation.

I can't say that I've heard of hearing issues or wobbliness being caused by octreotide or NETs in general, however everyone does deal with meds and disorders differently. By "wobbliness" do you mean dizziness or gait/balance problems?

Hi Teresa,
I'll have to go back and reread the partb about the bone.
As far as his wobblyness, we were told the same, shouldn't be related to the shot. We knew it was a long shot but in my research it did state that hearing loss can happen in very rare cases. His family Dr is involved in his case and had sent him to PT. It's not vertigo, he's already adjusted his meds so he said let's try the PT. Since he has nerve damage the dr feels the wobblyness may be bc there's some dirt of crystals or whatever in the ear that may be off. In sure the terminology is incorrect. In PT they've established where the unbalance is coming from so now they are working on that. And yes it's his gait.... hopefully the PT will help. If not, his family Dr will look at his meds again but he really feels it's the inner ear. He may need to just learn to deal with it. His hearing loss is permanent, so last thought would be a hearing aid. However, that's doubtful since he won't go for it. So, well see how things go. Thank you for your info.

Hello @jenntx10,

I appreciate you providing additional information about your NETs journey. You have certainly been proactive in finding good specialists and following up with the latest treatments.

You indicate that you are "largely asymptomatic." That is good news. Are the meds and pancreatic enzymes helping you?

Hi, I too have NETs that were discovered in my ileum after being in the ER many times sometimes 2-3 times a day and then admitted with a GI tube. This went on for about 4 yrs until a surgeon came in and said we r doing exploratory. They did so and the tumor they found was in stage 3. It was successfully removed and all was fine for about a year or 2 and then it was found in my liver. It is somewhat scattered but I begin treatment next week using Lutera. I think that’s the name! Anyone else experience this drug?

Hello @caitrina and welcome to Mayo Connect. I am so glad that you found this forum. We have many members who have experience with NETs and can share their stories with you.

I would like to introduce you to Connect member, @kathryncd, who has also had NETs in the ileum. I hope that she will join you in discussing her journey with NETs.

You mentioned that you will be having treatment with Lutathera, also known as PRRT. Here is some information from Mayo Clinic's website about this nuclear medicine treatment that targets NETs.

--Nuclear Medicine Therapy
https://www.mayoclinic.org/departments-centers/nuclear-medicine-therapy/sections/about-nuclear-medicine-therapy/gnc-20489020
Another Connect member, @kjstein, has had PRRT and I hope that she will join to share her experience. Here is a link to her post about PRRT,
https://connect.mayoclinic.org/comment/713543/
What type of symptoms are your experiencing now, @caitrina, and when do you expect to start PRRT treatment?

Thank you for responding and the friendly welcome! Btw, I meant NG tube in my intro. My treatment begins this Wednesday. Needless to say I’m very nervous. My symptoms at this time include some pain on my left side under or around my rib area. Not sure this is caused by the cancer, but it really isn’t severe. It’s enough to let me know it exists. I am also back to flushing which I absolutely hate! However I think I’ve somewhat learned how to handle it and just move right along with my day. Loose stools, urgent ones at that. I think my biggest complaint is being a bit short tempered and insecure about anything and everything, I’ve had quite a bit of hair loss, thankfully I had so much hair it doesn’t show unless people have known me. It was about to my waist and very thick and I began cutting it until it reached my shoulders. I can feel the thin-ness of it now. So at this point this is what I’m going through. Simple stuff, right? Also since being taken off afinitor I am now able to eat again and hoping this new treatment will not make my food taste like metal.