How does Alcohol use affect Liver NET?

Hi there,
I'll quote a doctor, any doctor... lol "everything in moderation". My hubs has stage 4 NETS. If you read up on NETS alcohol is something they recommend you drink little of or not drink at all. My hubs drinks wine and occasional, sometimes more than others rum or Jack. He doesn't have any side affects from drinking alcohol but he will only have 2 glasses of wine or 2 mixed drinks at a time. Sometimes 2 to 3x a week then maybe nothing for months. He's not a heavy drinker. However, what works for one may not have the same affect on someone else. You may have side affects. If you do, don't drink as much...if they continue you may have to stop. The best thing to do is discuss it with your Dr, be honest and tell the Dr to be honest with you. Then you decide what your going to do. Also, knowledge is power. Read up on NETS. I found that it was helpful knowing as much as I could to be prepared and to help my hubs when or if he had side affects from the tumors or anything else like alcohol. Oh, and his metastastisized to his liver. His Dr never said to not drink. Just to drink in moderation and if he has side affects to stop drinking. Very simple. Lol Good luck to you and keep us posted on how alcohol in whatever quantity you choose affects you.

I too have an occasional glass of wine or 2 when out for dinner with friends.. My nets metastasized to the liver also. What Sandy 23 is pretty much exactly what I’ve been told and read about.. With me because In also have carcinoid syndrome, the use of any alcohol, even 1 glass of wine triggers some hot flashes

This was very helpful. People keep saying to read up on NETS. There is so much info out there. Can you recommend a few good places to start? Thanks.

I think foods high in "amines" can trigger carcinoid syndrome or similar effects. I have a beer or or 2 on occasion with no adverse effects. However, red wine triggers face flushing so I steer clear. I too have NET liver matasis. And my oncologist says a few beers here and there are ok.

If you Google neoendrocrine carcinoid tumors and read the neoendrocrine tumors q and a plus right under is the Mayo clinic info. Also, wherever yours originated as that to a Google search...ie; neoendrocrine carcinoid tumors originating in...... my hubs was small intestine. That will pinpoint some symtoms and treatment options due to it starting in your origin. I know you'll be looking at prognosis as well. Realize this cancer is generally slow growing and with treatment, even at stage 4 it is very much treatable for many years. If you'll look at the newest treatment which is Lutethera, that is what my hubs went through and finished up Dec of 2023 with good results. This site is a good place for questions, and comparisons. It truly does make you feel as if you're not doing this by yourself. Folks here have NETS that originated in many different areas, different stages and some with different treatments. All is good to know. I hope the above will help you as you navigate through all of this. Again good luck to you.

Thank you again. Mine did originate in my small intestine.

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but discovered 2 tumors instead.) Second surgery in 2011 to remove mesentery tumor & nearby lymph nodes. Advent of DOTATE PET-CT revealed tumors in multiple organs (liver, lungs, pancreas, etc). Been on lanreotide then octreotide since 2018. Like Sandy23's husband, I may have a couple of beers or a couple of glasses of wine on occasion and then nothing for a few weeks or more. I don't notice any particular increase in flushing or other symptoms as long as I keep things in moderation. Back in the early days of my diagnosis, I was a more frequent and heavier drinker (still, nothing too extreme) and did notice some increased flushing. I also experienced some PVCs (premature ventricular contractions) which we suspected but never really proved were possibly associated with more alcohol consumption. As others have said, moderation and individual tolerance ... if you want to be able to enjoy an occasional adult beverage but are worried about possible additional side effects due to NETs, you're likely going to have to figure out your tolerances with some experimentation.

Hello @lagunagrl
You are asking a good question regarding a good place to find NETs information. It is important that you not read everything that is on the internet, especially if it is an AI post. However, any website from a reputable source is a good starting place to educate yourself.

Mayo Clinic's website is great, also the Carcinoid Cancer Foundation has helpful information as well as videos of webinars, the American Cancer Foundation is also reliable. Any of the major, well-known hospital systems have good information as well as university medical schools that are research oriented.

Another very valuable resource is Mayo Clinic's support group. This is a Zoom meeting on the first Thursday of each month from 5:30 to 7 p.m. There is usually a speaker who will present information about NETs and there will also be a question/answer time when your concerns will be addressed. Watch for the notifications about these monthly meetings.

I hope you find helpful information, @lagunagrl. When I began my journey with NETs in 2003, there was not a lot of information nor support groups like there are now. So, keep reading and posting on Connect. You will learn a lot from the many members who have lived with this cancer for many years.

Hello @lagunagrl,

On Thrusday, September 4, there will be a virtual NETs support group meeting sponsored by Mayo Clinic. This month, one of Mayo Clinic's NET specialists, Dr. Jason Starr will be presenting, and this would be a good place to get some NET information, have questions answered and meet others who also have NETs. You will need to register in advance in order to get the Zoom link. Here is a link to meeting and registration information,
https://connect.mayoclinic.org/comment/1380725/
I hope you can attend.