Serratonin Levels

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Serratonin Levels

by Danette1963 on Wed Sep 30, 2015 01:17 PM

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My husband was diagnosed with Carcinoid Cancer after taking him to the ER for severe stomach pains on 7-15-15 .  My husband is stage 4 because the cancer grew from colon to the liver so surgery is not an option.  Currently, he is only taking a hormone shot once a month but I fear this is not enough.  His second blood draw since ER has come back out of whack.  My biggest concern is his serratonin level was at 3700 which it should be between 90 and 195.  I realize they could adjust his hormone shot but my main question...is this near the end for him? Even though we were told surgery was not an option...is it really? I feel like his current doctor is being very evasive and sugar coating.  Example: is there a special diet he should be on and her response is..He can eat and drink anything he wants to. Should he quit work?...her response is He can do anything he wants, if he wants to quit he certainly can do so but if he wants to work that is entirely up to him.  What about chemo? her response was chemo has shown to be little to no effect on this type of cancer.  I should also mention that we are scheduled for a second opinion in about 2 weeks.  I think what I really want to know without sounding negative is, how much time does he have?? What are signs to look for if you are at the end stage of Carcinoid Cancer? We were told he has had this cancer for a very long time now.

RE: Serratonin Levels

by akdixon5 on Thu Oct 01, 2015 02:24 AM

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I'm sorry to hear your husband is so sick. Your doctor is right on most things. Food choices, working, slow growing, chemo. His serotonin level means the hormone feeding this cancer is causing the cancer to grow. If the doctor checked his chromagrantin A level and it is also high, he needs more aggressive stance in treating such as surgery and high level sandostatin. I've been referred to New Orleans for a second opinion and I believe your husband should see Dr Woltering as well ASAP. It's not over unless you give up and do nothing or continue with nonaggressive doctors.

RE: Serratonin Levels

by Danette1963 on Mon Oct 05, 2015 11:13 AM

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Thank you akdixon5 for your reply.  I am forwarding your reply to my husband.  Interesting, when he was first diagnosed and began his research he did mention to me New Orleans and said he wants to see them.  We are only waiting for his next Cat Scan to compare growth before venturing to New Orleans. 

RE: Serratonin Levels

by avilan7 on Mon Oct 12, 2015 02:39 PM

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Hello, I am new to this board, but wanted to share my story, as it is similar to your husbands.  My local doctors were not going to treat my carcinoid tumor as aggressively as I wanted, and I looked elsewhere after the first meeting.  I am certainly glad I was proactive!! The second team I worked with was at the University Wisconsin- Madison.  The surgeon removed two primary tumors in my small intestine and 13 lymph nodes- one was cancerous.   The oncologist at UW-madison made a referral to Dr. O'Dorisso at the University of Iowa.  He speciallizes in NET and is running a trial for a new treatment. The only other place you could get this treatment, called PRRT, is in Houston or Switzerland, and the both charge $$$$.  

My serotin levels are also high, 2000 range.  Its very hard to keep the mania in check!  And I have given up worrying about grammatical errors.   I hope this helps and encourages you to seek elsewhere ... travel to other places ... push your insurance and fight the good fight!

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