neuroendrocrine tumors

Bethbb
Bethbb Member Posts: 1
edited June 2022 in Liver Cancer #1
Recently diagnosed with neuroendocrine tumors in liver and pancreas. Treatment has begun with Sandostatin LAR injections. Is anyone experiencing similar diagnosis and or treatment?
Beth Beck
[email protected]

Comments

  • northa914
    northa914 Member Posts: 100
    edited June 2022 #2
    Diagnosed with pancreatic neuroendocrine carcinoid tumor

    Hi Beth,

    I was diagnosed - or should I say re-diagnosed - with this type of cancer about three weeks ago.  My original diagnosis was for stage IV cholangiocarcinoma in June 2010, with mets to my liver and bones.  The original pathologist and the second opinion (done by City of Hope, guess premier cancer hospitals make mistakes too) confirmed cholangio.  To make a long story short, NET cells were found in my lymph nodes in May 2012.  However, my doctors continued to treat me for cholangio as it was believed I had two rare cancers.  I had an octreotide scan in November last year and finally was able to see a neuroendocrine carcinoid/carcinoma specialist (Dr. Edward Wolin with the Samuel Oschin Cancer Center at Cedars Sinai) in January of this year who confirmed I have had PNET (of the carcinoid type) all along, that it's slow growing, and I have a much better chance of surviving for 10 - 20 or more years.  My oncologist and liver specialist did say I was odd as most stage IV cholangio patients don't do as well as I did - in other words, I should have gone into the light long ago.  I started Sandostatin LAR immediately, having my first shot on January 24th (ouch!)  Hopefully you are being treated by a specialist, as this is such a rare disease that many oncologists aren't aware of new and better treatments out there.  I can give you the skinny on Dr. Wolin and some info regarding his treatment plan for me.  Take care!

     

    Andrea

     

     

  • Gaskins
    Gaskins Member Posts: 8 Member

    Hi,

    I was diagnosed with liver cancer. The only thing that truly bothered me was the severe diarrhea I was constantly and consistently in the bathroom. The shot stopped it. I have normative movements and no side effects. I feel fornuate.

    Karen

  • Gaskins
    Gaskins Member Posts: 8 Member

    Hi Andrea,

    I have liver cancer. I'm taking the same chemotherapy with no side effects. Thank God for my oncologist.

    Karen