Carcinoid Cancer

The following is part of a message I posted for another person who has carcinoid cancer: 

I was originally diagnosed with stage IV cholangiocarcinoma in June 2010, and rediagnosed with Stage IV PNET (pancreatic neuroendocrine tumor) in January 2013.  During an attempted resection for the CC in my liver (performed in May 2012), lymphnode metastasis was discovered with NET.  My oncologists decided to proceed as if I had two rare forms of cancer, and put me through nine rounds of FOLFIRINOX from August through December 2012.  My sister insisted that I have an Octreoscan in October 2012, which showed that all of my tumors had the octrotide receptors.  The PNET was confirmed by Dr. Edward Wolin with Cedars Sinai in Los Angeles.   I have two tumor markers that my oncologists monitor: CA 19-9 for the pancreatic lesion as that is the site of origin, and Chromogranin A for the NET.  I'm currently receiving Sandostatin LAR, and will begin Everolimus at the end of this month.  I know there are different forms of NET that require different treatments.  Mine is based on the fact that I have well-differentiated, slow growing tumors.  If your doctor hasn't already directed you to this website, carcinoid.org has some good info.  I looked up your doctor, and she is listed on the site as being a specialist in neuroendocrine carcinoma, which is what you need for this rare cancer. 

I hope this helps.  I had an Octroscan done in October last year to confirm that all of my lesions have the recpetors indicating neuroendocrine carcinoid tumor/cancer where Sandostatin/Sandostatin LAR would be effective.  My surgeon and liver specialist with Norris-USC and my specialist at Cedars Sinai have all confirmed that what I have puts me in a better position for treatment and that my survivability rate is much better than that for the cancer I was originally diagnosed with.  The Sandostatin LAR injections and the side efeects are a cake walk compared to cyto-toxic chemo. 

Andrea