What does the future look like for a stage 4 NET patient?

I'm personally searching for a "medical captain" that oversees, understands and provides guidance regarding how the medicine, active life style, nutrition work together with the goal being a plan that results in improved quality of life. (For instance what activities are best and how to monitor.ie strength training, cycling? walking (endurance or High intensity, frequency? Best Nutrition? Management of other health issues...I now have high sugar levels-perhaps the sandostatin? which now I take metformin. Not a fan of the pills and always seeking alternatives. Thank you you for listening. Greatly appreciated

@vinnie694
My husband goes to the Rochester Mayo and Phoenix Mayo in the winter.

@jameshoch Finding that person would be nice. In my experience, that kind of coaching comes from a multidisciplinary team at comprehensive cancer center. You are your captain after engaging the resources available on your team. Study, learn, and develop a plan with them. There isn't a cookie cutter solution. What works for me might not work for you. Our bodies can react differently to the same cancer, in the same places, the same size, with the same treatment. It is great to have a plan, but initially, it might need some tweaking. You, and your multidisciplinary team, will make adjustments as your treatment progresses. Your thoughts?

@tomrennie I’m curious about how your bones were diagnosed. My net was small bowel and ovary both removed metastasized to liver. I have bone pain that Mayo has been using low dose radiation on it helps the pain go away but just crops up somewhere else. My right shoulder elbow feet and lower legs have been worst. I keep doing physical therapy but recovery for me seems long I can be soar for 4 to 5 days after 45min of activity. Thankful that low dose radiation has kept me active. I havnt come across anyone with bone nets and I’m worried I have them. Appreciate anything you open to sharing.

Sorry you have this outcome after your lobetomy @jameshoch

My lower right lobe was removed in Feb 2023 from an atypical carcinoid net, and I am very concerned about metastatic net as I am seeing my oncologist this week and blood work showed high chromatin A. I have flushing and headaches and sweating...etc. But I also have hyperadrenergic POTS and MCAS that go with my genetic hypermobile Ehlers-Danlos Syndrome, so that could be the reason for symptoms instead of a net. We shall see.

Also, congratulations on your accomplishments through your architecture firm. I lived near Fort Wayne for 12 years. Great community! I am now near Lafayette.

Keep up the hard work, everyone, of being sick yet living life to your fullest! 🤩

@michellehcapouch The bone lesions show up on my Gallium-68 pet scans mostly in my pelvic bones. They have shown up for the 3.5 years that I have been getting the scans. I can't connect any specific pain to the bone metastasis. My feet and hands hurt from neuropathy, my shoulders hurt from arthritis, my back and legs hurt from previous back surgery, I have cancer that has spread, I live on chemo, I am in my 60s, and I hike a lot. Stuff just hurts. I've come to the conclusion that my body is just going to hurt sometimes. I can contribute to it by being active, which makes me mentally and emotionally feel better, or just let it hurt anyway from the cancer, treatment, and other age related issues, and be miserable about it. If the radiation is helping, good for you. I do little things like wear compression socks and gloves, have leg and foot massage sleeves, apply arnicare gel to sore areas, and stretch a lot to help me manage the pain. Have you tried anything like that?

I was diagnosed accidentally in November last year with stage 4 NET's after having a CT scan for a possible hernia. I have no symptoms, but do have lesions on my liver, pancreas and prostate. A liver biopsy confirmed the NET's. I've now had two Sandostatin injections and have blood work done every 90 days. Still no symptoms. The second round of blood work found Chromogranin-A and Serotonin sharply decreased. So far, the only real effect on my lifestyle is the cost of treatment. We have a Humana advantage plan, and the hospital is letting us make payments as the copays mount up. We contacted Ameripharma and they are now supplying the Sandostatin to the hospital for about a fifth of what the hospital billed for the first treatment. In effect, life goes on!