Any Positive Carcinoid Stories?

I was diagnosed with pancreatic neuroendocrine carcinoid (PNET) tumor in January 2013.  Though I was originally diagnosed with cholangiocarcinoma in June 2010, it was discovered that I had neuroendocrine tumor in May 2012, and 8 months after that it was confirmed that PNET what I had all along.  I've been stage IV since June 2010 (mets to liver and bones), with subsequent spread to the lymph nodes due to the delay in the correct diagnosis.  Currently I'm on Sandostatin LAR, Xgeva (a bone strengthener for bone mets), and 10 mg Afinitor (administered once per day orally).  So far the combination is at least stabilizing the disease; we won't know about shrinkage until I have a PET scan which will possibly occur in three months.  It's best if your husband can go see a specialist with this type of cancer.  If you have insurance, they may authorize you to consult with one for a second opinion.  There is a website, carcinoid.org, that lists specialists by state.  I see Dr. Edward Wolin at Cedars Sinai in Los Angeles.  He works in conjunction with my primary oncologist in Anaheim; together they decide what course of treatment I should take. My Blue Shield HMO allowed me to get a second opinion with Dr. Wolin after my rediagnosis since he is a specialist; I later changed to Blue Shield PPO so I would be able to see him on a regular basis.  Fortunately I don't suffer a lot if side effects from either the disease or the therapies.  My problems are from the previous therapies administered while chasing the wrong beast.  My particular type of tumor is well differentiated and moderately growing; I'm assuming your husband’s is either the same or slow growing.  I was told the same thing about carcinoid being better than most other types of cancer due to its slow growth, a bit hard to grasp when you’re told you have the “C” word.  But if he has the well-differentiated, slow-growing type, he has a good chance of at least controlling the disease with the proper therapies.

Another possibility to look into is targeted liver therapies (ie transareterial chemoembolization, theraspheres, cyberknife resection).  Even at stage IV, my specialist at Norris Cancer Center (Keck-USC) performed four TACE procedures that brought my liver from over 50% to under 25% cancerous tissue.  He did so due to my age (50 at the time) and the fact that I was still in good physical health other than the cancer.

I hope this helps.  You and your husband will be in my thoughts and prayers!

Andrea

ssfbeagle said:

Thank you for responding.

Thank you for responding.  His carcinoid is low grade, well differentiated per his liver biopsy.  I will mention your suggestions to the oncologist on Tuesday.  I keep wondering how long he has had it.  He will be 60

in December and otherwise in excellent health.  I love him so much and cannot bear the thought of losing him!

 

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Per Dr. Wolin, I could live another 10, 20, or 30 years and potentially die with and not from the disease.  His idea is to get me as close to remission as possible (I'll never be disease-free), then continue to control it from there.  The most important item on your To Do List is to find the carcinoid specialist that's closest to where you live.  Even if it requires an extended trip, it's worth the time and money to know what options are available.  Your husband is young, and the fact that he's otherwise in excellent health puts him in a better position to at least control the disease.  Everyone responds differently to the various therapies, and since this is such a rare disease it's imperative that you don't have an oncologist that isn't familiar with the proper and most current treatments and procedures.  My sister is the one who did most of the research both for the cholangiocarcinoma and now with the PNET.  Without her I wouldn't have found Dr. Daniels at Norris-USC or Dr. Wolin at Cedars Sinai.  I had to ask my current primary oncologist (I had to change oncologists mid-stream, it's a long story, we nicknamed him Dr. Death) for an octreoscan (specific for neuroendocrine cancer) and for a referral to see Dr. Wolin.  The same went for Dr. Death with the TACE procedures; his response when I asked was "Yeah, we'll get you a referral.  Your lesions don't fall into criteria for any type of surgery or special procedures, but it can't hurt to ask for an opinion".  The four TACEs are what saved me from an earlier expiration.  I even had an attempted liver resection that Dr. Daniels wasn't able to proceed with when cancer was found in my lymph nodes.  I still have a lot of options in our bag of tricks (other chemotherapy drugs, PRRT, liver resection).  Right now were hoping that the Afinitor and Sandostatin LAR will shrink the disease and get rid of it in my lymph nodes.  At that point we'll look into another liver resection to cut out as much disease as possible, then continue managing it.

Gosh, I sure am long-winded!  Keep your chin up.  I have faith that your husband will be one of those that lives a long life with you.  We all will pass someday, he'll be one of those that passes with the disease and not from it!