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    zebrajennie wrote on Chrisl's wall

    I am small intestinal carcinoid cancer. I am the second one in my family with this cancer. I am wondering what kind of chemotherapy you are taking? J

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    zebrajennie wrote on cackie's wall

    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

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    • riverratttt47w's Avatar
      riverratttt47w

      I went through over year taking those shots every month and didn't help. I was told back in 2012 and been XXX of a ride. How is everything now if don't mind asking, my first oncologist wanted to do a Whipple surgery and I couldn't do that and wasn't any promises it would even help so second opinion said same but never. I did have surgery from through my throat to go down and remove the carcinoid tumors but have been going through XXX. Been to 4 oncology docs so far and one gave me 28 rounds of radiation and now I have half of a dead pancreas as well as lots of other issues...hope you feel better

      11 months ago
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