carcinoid syndrome

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carcinoid syndrome

by qedward on Fri Jun 13, 2014 01:28 AM

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I have been diagnosed with carcinoid syndrome.  I have all the symptoms, flushing, nausea, direrra, etc. but they have not been able to find any tumors after many extensive tests.  Is there anyone out there that may have the same problem and could you let me know any other way to find out what is going on.  I am so fatigued I can hardly make it each day.  I am on octreotide injections now but they don't seem to help.

RE: carcinoid syndrome

by ellieh on Sun Aug 24, 2014 12:50 PM

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On Jun 13, 2014 1:28 AM qedward wrote:

I have been diagnosed with carcinoid syndrome.  I have all the symptoms, flushing, nausea, direrra, etc. but they have not been able to find any tumors after many extensive tests.  Is there anyone out there that may have the same problem and could you let me know any other way to find out what is going on.  I am so fatigued I can hardly make it each day.  I am on octreotide injections now but they don't seem to help.

You need to go to http://listserv.acor.org/scripts/wa-ACOR.exe?A0=CARCINOID.  It's a wonderful resource for carcinoid syndrome and there is a large archive which no doubt will help you.  Good luck.

RE: carcinoid syndrome

by scoutdog66 on Wed Mar 22, 2017 03:59 PM

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On Aug 24, 2014 12:50 PM ellieh wrote:

On Jun 13, 2014 1:28 AM qedward wrote:

I have been diagnosed with carcinoid syndrome.  I have all the symptoms, flushing, nausea, direrra, etc. but they have not been able to find any tumors after many extensive tests.  Is there anyone out there that may have the same problem and could you let me know any other way to find out what is going on.  I am so fatigued I can hardly make it each day.  I am on octreotide injections now but they don't seem to help.

You need to go to http://listserv.acor.org/scripts/wa-ACOR.exe?A0=CARCINOID. "" target="_blank" rel="nofollow">http://listserv.acor.org/scripts/wa-ACOR.exe?A0=CARCINOID. " target="_blank" rel="nofollow">http://listserv.acor.org/scripts/wa-ACOR.exe?A0=CARCINOID.  It's a wonderful resource for carcinoid syndrome and there is a large archive which no doubt will help you.  Good luck.

I have had Carcinoid syndrome  Diagnoseed by Dr. Larry Kvols at the Moffitt Cancer center in Tampa Fl. way back in May 10th 2000 with an intestinal block by 2 Carcinoid tumors that got removed but the symptoms like yours continued until today March 2017. So all I know is back then in 2000 they did xrays and all kinds of Ct w/ contrast ,You name it and those 2 tumors that blocked my small bowel were 3.5 cm each and never were discovered by any tests until they almost killed me. So we now have Gallium 68 and PET scans that are much better. Treat the symptoms and try to rest more but not too much cuz you have got to move. I drink a lot of Apple Juice and I am still alive. Pain but alive . Good luck It's a lifetime diagnosis and a better Cancer if there is such a thing than Many of themWhen I feel really bad, I know it's nothing compared to what Many people with Cancer go through.

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