07/27/2025
Update. I was diagnosed with stage 4 Neuroendocrine Tumor Cancer in 2019. For the last 9 months I thought my body was slowly shutting down and I was dying. I underwent 2 resections last September but leaving my liver full of cancer. Since the surgery my health kept getting worse, more and more every day. My oncologist and family doctor kept performing tests and this month my oncologist performed a test to detect my count of serotonin. Production of too much serotonin for NET cancer patients causes Carcinoid Syndrom, which like my cancer, Carcinoid Syndrom is very rare. I am producing 3 times too much serotonin and suffering the numerous fun side effects, there are so many, one feels like they are dying. I get out of my house one a week. Again, keep asking your doctors for more testing until you find out what is wrong! You know your body better than anyone else!
Carcinoid Syndrom can be treated with a pill! I am waiting for the specialty pharmacy to mail my pills.
Now I know I'm not slowly dying, just suffering numerous life altering side effects from Carcinoid Syndrom in addition to the side effects of cancer treatment and the cancer. Wow! I can't believe this happened to me! Looking forward to receiving my RX so I can get on with my life.
Picture of me and my mom Karen Gustaveson.
Update 1/26. Xermelo did not work for me. Made me deathly sick and threw me into a cacinoid crisis. I went to ER (Altaview Hospital in Sandy, Utah) in October. ER doc gave me a script for heartburn and sent me home to die. Treated me terribly like nothing was wrong.
Went home and waited until 8 am. While waiting I tried to sip water. I just made me throw up every time. My body was shutting down. At 8 am doctors office told me to go back to the hospital and they would send orders to treat me. I checked in., was told ERs are for sick people. I was treated like a drug addict trying to get drugs. They took me to a room and ignored me for an hour. I kept asking if someone had read new doctors orders. NOTHING! Panicked and experienceing carcinoid syndrom called my doctors office again. Within 10 minutes I had an IV and the docs were discussing my matter. They admitted me to the hospital for 3 days! Yes you imbasols, I was sick and needed treatment. I complained to Altaview formally and recieved a letter stating they are sorry that I feel I was not properly cared for. If you value your life, drive past Altaview in Sandy. Utah, and go to IMC in Murray or U of U, SLC
