Living with Neuroendocrine NETS, any advice?

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!

Dealing with Nets! Wow we are all different I learned as much as I could about my disease Grade 2 functioning gastrinoma pnets metatasic to the liver pancreatic primary presentation was perforated esophagus followed by emergency surgery 18 days in the hospital came home with a feeding tube I had quite a few complications and back and forth to emergency room for another 20 days in the following couple months before I had a real diagnosis. First treatment was lanreotide it controlled my diarrhea it did nothing to shrink the 20-30 liver tumors. I then had captem for 7 months it did nothing except make me tired and like you said chemo brain. Sky high gastrin was still about 1800. Then I had high dose radiation on liver y-90 it wasn’t fun but tolerable until second treatment caused radiation stomach ulcer and I lost one kidney I had 2 rare side effects! Back on a feeding tube for 3 months. It took a year to recover. Guess what? Treatment worked I have been stable or better for 1-1/2 years. Not sure you ever heard live, laugh and love! Do it every day be grateful someone always has it worse. Reach out to anyone that makes a positive in your life. I push myself everyday! This forum helps. Join the support group if it suits you. This is a journey that can have some very dark days don’t get stuck there! Sorry if I rambled!

Hello @gg66 I found sharing very helpful when I was first diagnosed 4 years ago. I still rely on the NET community for support. No one understand this disease like people who live with it daily and their caregivers.

I too am looking for some feedback on how others deal with NET. I've had PRRT with very few side effects, but it didn't suppress my tumors very long. Next, lanreotide with few symptoms but my tumors grew. Now on CAPTEM and having lots of side effects. I'm just wondering what others do to get back to a normal life. I feel like this disease is ruling my life. I have a great NET specialist. The CAPTEM is shrinking my tumors. Thats great. Im just so tired. Skin issues. Mouth sores. But the brain fog is the worst. Appreciate advice. Thank you.

I'm glad to hear that you will be seeing an oncologist for a follow-up, @ladonnagissel. When you say that some symptoms have returned, would you like to share what type of symptoms you are experiencing?

Hi I am hearing Nets is different in most. I had surgery in august to remove tumor and half pancreas. I am doing ok up and down with stomach issues. Hope to see new oncologist in a few weeks and get Ct in Feb for followup.
Some symptoms have returned. Just keep good thoughts and look for information. Wish you all the best

@gg66: Hello and glad you are reaching out for advice and information about this world of NETS! This rare form of cancer is even weirder because we all experience it uniquely… our community refers to us as “Zebras” -no two alike! Fortunately we gather together to share our experiences with each other and that allows not only a sounding board, but insight into what roads our individual journey might take. As patients we need to muster determination and persistence as we learn about our disease and best ways to advocate for treatments that may offer us more TIME here. Although we do not have medical training, I am here to help you, as are countless other NET patients to share and listen to your concerns.
Wishing you best health, Bette

Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.

With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?

Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.

I look forward to hearing from you!