Living with Neuroendocrine NETS, any advice?

@hollywood817: Thank you for sharing the info on your clinical study. I am just a patient like you, but here is my read: This Alpha-particle targeted treatment is one of the “hottest” treatments for NETs. Many patients are watching and awaiting results and FDA approval. It hopes to “ZAP” NET tumors to a larger degree than the Beta PRRT that I just had. It is touted to work similarly but has stronger effects on NET cancer cells and for a longer duration. Alpha-particle PRRT could be a game changer… giving us an avenue to “re-set the cancer clock” and give us time to die of old age! I applaud you for being a pioneer of medical progress! I don’t think you will have untoward side effects (with the Beta PRRT Lu177 Lutathera 4 treatments I only dealt with some fatigue) - your positivity will pull you through! Bette

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.

@tomrennie
Thank you for sharing. What stage Pnets to tbe liver or grade did you have? It gives me some hope! My husband is KI67 25% so considered stage 3 nets. He is soon going to start Captem and I don't know the next steps yet. I hope he tolerates it well because he is sensitive to most medications.
Thank you.
Pnets to most lesions to the liver.

@tomrennie
How big were your tumors? On liver?
TYou

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being 8x6cm. There were traces of the cancer throughout my body mostly in my bones. I started captem. It took a few cycles but everything started shrinking. After 13 cycles, my pancreas and liver were working again, so I was switched to a lower dose of maintenance capecitabine. After 1.5 years of just capecitabine, everything is still stable. Keep the faith. There is hope.

Yes, they remove the gallbladder because if you get on Lanreotidd treatment ( as I am) it damages (forms gallstones) the gallbladder, so they remove it at the same time.
I had the same - open surgery, also with hysterectomy as it was unrelated to NET, but discovered during my first DG PET scan. And I am still around - on March 10 will be " celebrating' my 2nd Lan treatment anniversary :). We zebras are a strong bunch!💜🦓

Hi pavlina60
I just contacted my Oncologist and she said the bloodwork would show if we might have a weakness to have gallstones. I would not assign Lanreotide as the main culprit. There are other tests as well.

You are correct, Somatuline or Lanreotide can produce gall stones among other side effects. How long were you taking this drug before your gall bladder acted up? I am just short of 2 years. Something that might help with symptoms..........maybe some contributors.........
the “no-nos” added by lanreotide are spicy foods, tomatoes, fatty meats, cruciferous vegetables, sugar/sweets. No uncooked veggies, all should be well cooked.

Apparently, 1 person every 90 minutes in the U.K. is diagnosed with NETs, which might help promote research.