Hi Lenora, I am the leader of The Wisconsin Neuroendocrine Cancer Connection, a group of 163 and growing people who have Neuroendocrine Cancer and live in Wisconsin. My wife was DX with NETs in April 2015 and has been seen at Mayo Rochester by Dr. Halfdanarson who is a NETs specialist. She is a midgut, stage 4, mets to the liver with a less than 2% mitotic rate. She has been receiving Octreotide injections monthly for a few years now. This followed surgeries at Mayo in Oct 2015 and Dec 2016. She is also on Everolimus daily (a pill) and Xermelo 2 times daily (pill). The Everolimus is to control growth of the liver tumors and the Xermelo is to reduce circulating serotonin which is believed to be effecting her tricuspid valve resulting in Carcinoid Heart Disease (CHD). If I may ask what you 5HIAA results were? It is important to have an echo of the heart every year or two to check for CHD. Also, monitoring systems or having a simple blood test first (Pro BNP) is recommended. Please feel free to ask questions. I'm happy to speak by phone as well. Another resource I recommend is NCAN.org - it is the largest patient directed resource for NETs globally.

Hi Colleen, Thanks for your response to my post. Thus far my response to the Octreotide has been mostly positive. I self-administered the short acting form for three wks right after the liver biopsy on 9/21/21 confirmed carcinoid cancer. It allowed me to eat without all the food drama- -nausea, vomiting, retching, gnawing epigastric pain and diarrhea. Now, I go for monthly shots and received the 3rd one on 12/29/21. The shots have caused painful local reactions resulting in lumps at the site. Ice packs immediately after have been helpful. For the past two wks I have experienced troublesome constipation. The plan for managing this includes: more veggies, stool softeners, prunes, senna teas, lots of water. Needed Miralax and Fleets oil enema to resolve most recent issue. Other than this, I tolerate it very well. Perhaps this info may help someone else.
Lenora