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Why do I get so tired so easy?
Neuroendocrine Tumors (NETs) | Last Active: May 13 6:31am | Replies (20)Comment receiving replies
@nannybb Are you seeing a NETS oncologist? My husband's first tumor was found and operated on in 1995. 28 years later he was rediagnosed Stage 4 and the NETS tumors fill his skull and body. We learned then that the majority of oncologists are not very familar with NETS. We work with Mayo Rochester and have had excellent care. He has been on Lanriotide since Janaury 2023 and has been stable until his scans this past week. He will start the PRRT treatment on June 1. We're very hopeful that the tumors will decrease or stabilize. We are very confident in the NETS oncology team that we work with. Good luck to you!
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@rkklingerOh my. That is quite a shock. I'm so sorry. No. I am trying to get in to an oncologist at OSHU here in Portland, Oregon. I had switched after the surgeon who originally operated did nothing for the pain I was having from his doing my lung surgery with a robot. Being on this forum has really been wonderful. I was directed to my present surgeon through someone's suggestion in here. Dr. Pommier is now my doctor, and he is a leading specialist in this type of cancer. He knew on the first visit why I was in such pain. He also knew about DIPNECH and diagnosed me with it, putting me on the daily shots per my request, as opposed to the monthly. He wants me to now start taking the IM version.
May I ask, where did your husband's cancer first present, and how was it found? Also how did the doctors find it this time? I read he has been on the shots, were they monitoring him with CAT scans every year?Thank you for your wise advice. Eager to hear more about your husband's case. Prayers to you both ! 💕