cackie

Hi I have small intestinal neuroendocrine carcinoid cancer as well. It was found in 2010. and since then I've had 3 surgeries. I am doing very well right now my best year yet very fortunate. Since this is a rare cancer everyone must at least have one consult with a neuroendocrine specialist. There are few scattered around in the country. I'm in the clinical trial right now with the government and I also fly to my oncologist once a year. His name is dr. Edward wolin how does Mount Sinai in New York. He handles my care and an oncologist close to home follows his orders. Haha because of egos I have to change my oncologist until I found one that would follow another doctor's orders.
When I was first diagnosed the word Gleevec came up. That's a real no no. Sandostatin AKA octreotide, lanreotide and other treatments are available to us.
Zebra Jen

Hi Cackie:
I am a two time survivor, "praise God." I've been on Sandostatin 20 mg once a month for only 3 years after my liver resection in 2010. My hair is thinning, but my dr. says he doesn't think it from the shot. He seem to think it's one of the other medications I am on. I do not agree. I notice the thinning of my hair right when I started taking the shot. As for the loose stool I take Questran twice a day to bulk my bm's. I can say it helps sometimes, then it is those embarrassing moments when reinforcement can be of assistant. I hope I have been some help to you. God has blessed us all...keep in touch!

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter