Just diagnosed: Metastatic NETs. Treatment?

Good morning to (hello it’s me) I was diagnosed Dec. 2022.. started in small intestine and metastasized to the liver. Currently going to Mayo in Jacksonville Fl. Surgery was also not an option. Started Lanreotide in February, I’ve had 3 shots so far. Side effects of the shots for me were minimal, diarrhea the first day after, and depending on what I eat stomach cramping and gas..I have a MRI scheduled in June to see if the Lanreotide was effective in slowing the spread/growth of the tumors.. may you have a blessed day.
There is a Virtual Neuroendocrine support group meeting every first Thursday of the month , along with this chat room I have found it helpful

Wow! You are truly a determined person and a good example for me. I have often thought of changing my diet but never followed through. I think you have given me the final push toward that step after hearing how well you have done for 20+ years. Thanks for the inspiration, and keep up the good work! I also have NETs in the heart cavity, cecum, lymph nodes, liver and heart cavity and felt doomed. You have given me hope. Thank you for that!

Hello sorry to hear about your diagnosis but glad you found this forum.
I was diagnosed with NETs last August with tumor on my lung and mediastinum non operable. I did chemo and radiation it reduced the tumors by 50 percent. On Monday I will get my 3rd lanreotide injection.. sometimes you will hear them referred to as somatostatins in the group. I will do PET scans quarterly to monitor the progress.

What I have found is that the diagnosis is much like a death notice and you experience some of the same emotions at first. Denial, bargaining, depression, acceptance, Just know afterwards we focus on staying healthy and managing the affects of the treatments.

Ronny Allan has a couple of great sites to visit. He is a long term NET survivor that has gathered all the information you will be seeking. Check him out for sure.

NETRF.org is another great resource for this cancer. They will send you a small book that help you understand the options available.

My advice is to stay as healthy as you can. Eat small helpings, get good exercise as treatments allow, and build a good support team around you. Trust in the experts actively listen, reassess what’s important and keep your focus.
NETs is a marathon not a sprint.

Blessings to you and your loved ones. From my home to yours.

CEB

Welcome @helloitsme, so glad you reached out to this group. I’m also glad to hear you’re headed to Mayo in Phoenix. It was my “home away from home” every eight weeks from April to October 2021, and I just can’t say enough good about it. I went specifically for PRRT treatment for unresectable tumors in my stomach and some small ones scattered about my body. I’d had ten inches of my small intestine removed in 2018 and eleven inches removed from my large intestine in 2019. These were tumors that never showed up on CTs, but then caused blockages. Although I’ve been on Octreotide shots every 28 days since April 2018, they were mainly designed to control the symptoms (especially the diarrhea and flushing). So it was time to seek further treatment.
I would fly down from Albuquerque on Tuesday morning, visit with the docs and/ or nurse practitioner in the afternoon, spend a good chunk of the day Wednesday receiving the treatment, go out to dinner that night with my sons, go back Thursday morning for my Octreotide shot, then fly home. We always stayed at the Hampton Inn near the hospital as it was reasonable with special hospital rates, they offer breakfast, and they have a shuttle to the hospital.
But I’m wondering if you looked into MD Anderson right there in Austin. They, too, offer treatment for Neuroendocrine tumors. I’m not certain if they have PRRT.
I continue to have issues with diarrhea (thank you Imodium) but I view it like any other chronic illness - you control it and live your life. When you can, start an exercise routine as it will help mentally and physically. You’ll also figure out what you can eat without setting your stomach off, and eat nutritionally. Remember, these are slow growing tumors.
Good luck to you and please continue to reach out and keep us updated.

@helloitsme, Something you said in your initial post just struck a chord with me, and that was about your local oncologist. When I was diagnosed in March 2018 with carcinoid cancer of the small intestine, I had a great oncologist. Unfortunately he retired 10 months later, so in 2019 I started seeing his replacement. We got along fine for about 3 years but over the last several months he's become more short, confrontational, dismissive, etc. He's older, is not a NET specialist, and frankly seems burned out. He did not want to answer questions, have educated discussions, or do much more than see me every three months and order my Octreotide injections.
So! I decided to move on and referred myself to another cancer center attached to a university. I met my new doc Tuesday - night and day! He's probably in his 40's, personable, knowledgeable, thorough, and very interested in what my thoughts are. He's provided more information and ordered more labs than I've had in 5 years. He said about 30% of his practice are neuroendocrine patients, he attends NETS national conferences, etc. So my point is, don't be afraid to be assertive about what you need, especially when it comes to your local oncologist.
I, too, went to Mayo (2021) in Phoenix. Dr. Rule was my radiation oncologist and he was great.
After the initial shock of getting this diagnosis, I think most people think, ok, here we go. I'm going to deal with this challenge and just view it as a chronic condition - you manage it.
Best of luck to you. So glad you made the decision to go to Mayo and sounds like you're going to have a great oncologist to work with.

I just had my what has become a yearly as opposed to every three to six month scan of my lungs and body cavity with a CAT scan and MRI. I am starting my 21st year with NETs and things are remarkably stable with no growth or spread from my liver, mesentery and heart. I take a monthly injection of Octreotide.
I am a strong advocate of dietary restrictions. That means low calorie intake, essentially a plant based diet with a modicum of fish or chicken (as an example only a third of a can of salmon each day), almost total elimination of sugar from my diet such as in candy, ice cream and so many products too numerous to mention. Before I buy any product I look for its sugar content which eliminates the majority of packaged foods and almost every beverage that is out their like fruit juices and soft drinks. I rarely eat out, not knowing what is in the food.
Cancer needs food to grow and much more than normal cells. Logic tells you not to feed it. My cancers which are in inoperable places for the most part, remain, but have been seemingly dormant for years. I am now almost 77 years old. I cannot prove the efficacy of my approach but I believe in it. Of course it takes a lot of discipline and sacrifice of things we used to enjoy in eating but I function very well walking three miles a day with large dogs. The reality is that we need so much less food and calories than most of us get and besides keeping one's weight down is healthier. I don't mean to preach and actually abhor it but once again I do believe in reaching out to those I know are suffering while I seem to be skating relatively through this health crisis.

Your story is amazing, and I am so happy for you! I love hearing stories like yours that really give me hope and calm my nerves a bit. I have heard that Dr Sonbol is a wonderful guy. And yes, I believe that I will have to ask him to dumb it down for me, too. This medical speak is spinning my head! :-D. Good luck and continued good health to you. Keep up the good fight!