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What does the future look like for a stage 4 NET patient?
Neuroendocrine Tumors (NETs) | Last Active: 11 hours ago | Replies (17)Comment receiving replies
@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.
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@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?