Connect
← Return to Diagnosed with Stage 4 pNET: What should I know?
Discussion
Diagnosed with Stage 4 pNET: What should I know?
Neuroendocrine Tumors (NETs) | Last Active: Sep 21, 2023 | Replies (36)Comment receiving replies
A couple of immediate suggestions, as we have all fought this battle for NET's. There is a different path for each case, but most of the successes have occurred when a NET Specialist Multi-Disciplanary Team is involved in your case. My wife's case involved Stage 4 also, with mass on pancreas, and also too numerous tumors on liver to count. Also 9 months of CAP/TEM, Lanreotide injections, and 80 % reduction in tumors in both locations, she was able to have surgery 3/1, and for now she is in good shape to try to keep this as only a mtn. function going forward. So the short story is NET can be beaten or at least managed, but starting with a NET Specialist is key to everything in his recovery. We wish you the best and let us know if we can help in any way.
Replies to "A couple of immediate suggestions, as we have all fought this battle for NET's. There is..."
I'm on CAP/TEM since March 2023. I'm experiencing the hand/foot side effects. Did she experience this? What is doing for pain & to rest because I can't sleep, any suggestions
Kim1965,
I was very interesting to read about your wife’s case. Sounds very similar to mine but she achieved a reduction in her tumors far in excess of what my oncologist told me to expect. I have a 3 cm. pNET on the tail of my pancreas and metastases to my liver too numerous to count. My Ki-67 score was 9 which puts me in grade 2. Can you tell me your wife’s Ku-67 score?
I received my diagnosis and treatment plan at Mayo clinic in Rochester MN. I’m getting lanreotide injections at University of Michigan cancer center so I don’t have to travel to Rochester. I’m scheduled for my fourth injection in one week.
Can you please tell me what is “CAP/TEM.” Is this something in addition to the lanreotide? My MAYO oncologist told me not to expect any major reduction in tumors such as your wife’s 80% reduction. He told me it was only reasonable to hope that it would slow the progression of my NETs. Also, can you please tell me what you meant by the term “a mtn. function”?
Thanks very much.
Connect
Thank you so much for your input. We are working with a team at Cancer Specialists of N.E. Florida. My biggest concern is that they did NOT catch it when the tumor was confined to his pancreas. He had the major part of his pancreas removed with the exception of the head AND his spleen in 2014. Unfortunately, they did not test for PNET at that time. It was ruled a benign tumor at that time. He developed a tumor in his transverse colon which was discovered in June 2022 after I urged him to get a colonoscopy due to rapid weight loss. I had my suspicions at that time which were confirmed during a surgical procedure to remove the mass. A very astute and observant surgeon noticed spots on his abdominal wall and a funny shape to the outside of his liver that he was afraid to biopsy due to the length of time that the surgery had already taken and my husbands advanced age. He was afraid that it might cause bleeding that they couldnt control. Fast forward to present day and he now has been diagnosed with severe calcification in the arteries of his heart in 3 spots on top of the cancer. I am afraid that he wont try any other treatments and avenues, He is constantly tired and his sugar levels are all over the map. Not sure where to go from here except prayer.