Living with Neuroendocrine NETS, any advice?

I have Stage Four as well. I feel genuinely hopeful with all the groundbreaking research and advancing clinical trials.

Good luck to you!!!!

I discovered by a self orderded MRI in Mar. of 2023 that I had Nets. I have Grade 2 - Stage 4 mets to the liver.

I wish the NETS were predictable for everyone, but unfortunately, we must discover how we respond to different treatments. I have an Oncology team (which I think is important) and working my way through masses of testings and many treatments. PRRT did not work for me. Histotripsy did somewhat. I am now on 2 treatments - Lanreotide which helps to control some symptoms and gives me others (lethargy) and Lenvima (Lenatinib) which does somewhat the same but hopefully with some shrinkage. I was a frequent traveller and had a very active life, now my bed is my favorite place. All that has changed and adapting is a work in progress.

Everyday I read about progress in the field of Cancer with the latest out of Russia of an injection (much like a Covid MRna shot. Moderna is working on this as well.

A good mindset is critical. Hugs to all who are dealing with this (not so rare) disease. Hang in. Do what makes you happy - Photo below - 'This is me after the groundbreaking Histotripsy'.

@vinnie694: Vinnie, your post is so hopeful yet realistic! Thank you for sharing your feelings - it helps all of us to know others are in our emotional shoes!
I am so glad to learn your Lutathera (PRRT) infusions are going well. I will be happy to report my Lutathera 4 series treatment results soon.
Best of health to you Vinnie! Bette

Definitely identify with the private moments of emotions. My wife is a natural born worrier.. She worries to the point where it effects her health.. Just talking about it she will breakdown.. Started this journey Dec. 2022, started with Lanreotide, then switched to ocreotide, which eliminated my hot flashes. Last week started Lutathera treatments . Thankful all my symptoms are minimal, occasionally stomach cramps or nausea. I am grateful that all my organs are fully functional and I can appear to have a normal life.. It has increased my faith which I is also a positive.. I definitely look at life and what people get mad or angry about differently.. I remember the saying “ Don’t sweat the small stuff” and it’s all small stuff in comparison..

@gg66: Agree with all above, unfortunately, NETS stinks! HOWEVER, if we were given a choice between most “Cancer” and NETS, wouldn’t we choose our current plight? We at least have treatments that work better, and most importantly to me- we can have hope of living longer due to slow growth probability. Yes, our NETS cells do metastasize to other organs and areas of our bodies and we must come to accept this fact after diagnosis. With all of the treatment options we are given, we must learn and evaluate the Risk vs. % of tumor resolution offered by research vs. Side-effects with treatment = Quality of Life & Length of projected Time Added. It’s a crap shoot! After much prayer, peer experience knowledge, Dr advice, etc… we make our decision which treatment to “TRY” and know there is no guarantee we will be among the privileged to have “tumor stability” (and sheer luck to have tumor shrinkage and immense luck to see tumor elimination on PET scans)!
Cancer stinks! NET patients in general choose to learn to FIGHT this disease and HOPE for a long life.
Upon confirmed diagnosis and 2nd Opinions, the only real choice we have is to give up and let cancer win, or fight every tumor progression with the best tool treatments offered. At least that is how I see it…. Bette

I’ve had excellent care! Been palliative care since diagnosis. I go to University of Michigan Medical center I live 30 miles away. GI care was a real challenge I’ve had about 10 endoscopy’s with dilations. I take a lot of proton pump inhibitors and sulcrafate daily

PRRT came first because I was in a trial. I'm lucky the CAPTEM is working. Thank you!

It really, really, really, really sux. Welcome to your new "normal". For me, I had to acknowledge that, but I sure as heck wasn't going to accept it. I was diagnosed with a PNET that spread primarily to my liver and some other places in 8/22. I had lost over 100lbs and had been progressively getting sicker for years. My Mayo team only presented CAPTEM as a solution. I had to deal with ascites and cachexia first, I still don't know how to pronounce them, prior to starting chemo. A few weeks later, I started my first cycle on 9/1/22. I learned a new version of sick. I know your side effects, and a few others, quite well. I had to change my mindset to survive and hopefully thrive at life again. I focused on the following:

1. Separate myself from the disease. It isn't personal. Study it. Learn about it. Pretend someone else has it. It was easier for me to be objective with my cancer and my treatment, all of the good and bad, if it wasn't about me. It was about someone else. I wanted to become that person's best cheerleader, but I couldn't do that without learning about NETs. I ultimately became my own best cheerleader and advocate.

2. Make each second the best that I can. If I can string some good seconds together, I might be able to make a few good minutes possible. Next, try to string a few minutes together. Then, shoot for a few hours with the idea that hours become days. Days become weeks. Weeks become months and so on and so on. The idea of making good seconds really helped me focus on the moment.

3. Find a way to cope. Emotionally, it is ok to be a mess. Cancer is terrifying. The first few times I cried, my wife asked me what was wrong. I told her I was scared. She asked what she could do to help. I responded that I didn't know. That was an honest answer. I then cried alone a lot. I didn't want to her, or other loved ones who want to "fix" me, to worry. Crying really helped. It allowed me to get out all of the negative energy, so I could let the positive energy in.

4. Help others. No matter how bad I have it, someone always has it worse. Go read to kids in the cancer ward of a hospital. That impact will be profound. I was diagnosed at 56. I got to live 56 years before learning that I had cancer. For some of theses kids, cancer is all they know. ALL THEY KNOW!!! Imagine their pain and fear. I am supposed to be an adult, and I can't handle it. How can they be so strong and calm, when I am a terrified blubbering mess? I found great strength in that. If they can do it, so can I. I made the choice to be like them.

Acknowledge my plight, but I am not going to accept it. Make each second the best that I can even if it sux. Be human. Laugh, cry, and feel every emotion in between. It is ok. And be thankful for what you have. Others have it worse.

After 13 cycles of CAPTEM, my tumors shrunk. My pancreas and liver now functioned. I have been on continuous maintenance capecitabine since. My PET scans on 11/27/24 came back with no growth. Everything is still stable. I feel very lucky, but I worked very hard for that luck. But, I also have had lots and lots of help. I wouldn't be alive without it. Thank you to everyone that has helped me save my life.

I have not heard where PRRTwas your first course of treatment, then CAP/TEM. Of course we are not doctors, our case was similar but different order of treatment. Started with Lanreoride, CAP/TEM, surgery, then 2 treatments of PRRT. This knocked down the tumors to only in liver. Considering your question the side effects your experiencing are similar to what she experienced. Check for threads in this forum that help in the side effects your having. You got this!

You've definitely had a tougher time! Did you ever talk to palliative care folks to help with some of the side effects? You had such GI issues you probably had to stay focused on that! You're right, find the joy!