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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
@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 ! 💕
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@nannybb Ron's first tumor was between the illeum and bowel. He had several colonoscopys due to polyps. Our dr saw a shadow and refered us to a surgeon. No one suspected cancer. They took out 1/3 of his colon. The surgeon cried when she told us. At that time there was no medication or treatment. We were just sent home. He had scans every 3 months and then 6 months and then yearly for 10-12 years with no indication of tumors. So he decided to stop checking December 31, 2022 he was spitting up a clear liquid for several hours so we went to the ER. The dr ordered a CAT scan and informed us that the cancer was back. That led to several biopsies and scans. He started on Lanriotide in January 2023 and has been stable until the scans last week. We had put off the 5-6 month scan because we winter in AZ. He can get his Lanriotide at Mayo Scottsdale so it works for us to go there. He is 82 years old and has been very active physically through the past 3 years. Unfortunately in November he developed AFib with a crisis response, had a pacemaker put in early March and his lung was nicked and ended up 20% collapsed. We were so hopeful for a stable report last Tuesday. We remind ourselves that he has lived with this cancer for 31 years and had a very normal life. Our prayer is that the PRRT will stabilize him again and he can go back to doing his 100 pushups a day!! We truly trust our doctors at Mayo. We believe cancer is a family affair and work together as much as we can. Hope this information helps!! Prayers for you and your family as well.