Carcinoid Syndrome Support Group

Carcinoid syndrome refers to the array of symptoms that occur secondary to carcinoid tumors. Carcinoid tumors are discrete, yellow, well-circumscribed tumors that can occur anywhere along the gastrointestinal tract (GI). They most commonly affect the appendix, ileum, and rectum. These tumors are unique in that they are endocrine in nature.

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  • vickytic

    Carcinoid since 2006

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    I've have Carcinoid cancer since 2006.Lot's of cat scans and procedures! Hate it.....but I know if could be worse!Hope to hear back from someone!Thanks, Vickie
  • vickytic

    Wow!

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    18 Members.......that's it?
  • Zebransa

    Where is everybody?

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    Nothing happening here since 2013?Is there anyone left with carcinoid????
  • amynmesa

    Smiths medical cadd-ms 3 infusion pump

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    hello everyone ! My name is Amy . I actually do not have carcinoid disease, rather I have idiopathic pulmonary hypertension. It too is a progressive and terminal disease. One of the three medications I take is called remodulin sub q. I knew a very kind woman once who had carcinoid disease and she had come to me because one of the medications given to patients with this disease was easily...
  • poorlygir4l

    Scan

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    Im due to have the urine test and scan soon. Im scared carcinoid will be found. Ive started to get headaches ,feel fatigue ,achy and a bit of a temperature. I don,t know if Im getting symptoms of this or not. My asthma plays up too. Im worried as a trace of hormone was found in my blood. I don,t know if Im getting the symptoms or not of this. I don,t get flushing. Thanks.
  • deleted_user

    Need help understanding this

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    Hi. My husband had a carcinoid tumor removed from his lung in March 2008. The surgeon said he got it all. Charlie continued to have symptoms of stomach upset, flushing, etc. The oncologist did body scans and other tests and no additional tumors were observed. However, the urine test (unfortunately, I've forgotten the name but it starts with an H) came back elevated. Charlie started on...
  • deleted_user

    HELP-NEED ANSWERS ASAP PLEASE

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    I have been physically sick for several years although I am only 24 years of age. I have had scan after scan, test after test, and they have not given me any answers until recently. Starting before Thanksgiving I developed a cough, congestion, and wheezing. I was given antibiotics 3 times between November and January and it never fully went a way. I went to the doc on a Friday with the same...
  • deleted_user

    Carcinoid or nothing ???? please help :(

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    Hello, im new to this forum but glad im found it as im hoping someone can shed some light as to what is going on with me...............Iam a 36 year old mum of 3 and about 3 years ago i lost 2 stone in 1 month and the problems started. had vague lower abdominal pain and facial flushing, had colonoscopy and laporoscopy all normal, few months later pain accross my back right side pins and needles...
  • poorlygir4l

    Anyone with gastrittis?

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    I also wondered if anyone has gastritis with this? I had never heard of a carcinoid before I had to have a test for it. Im still panicking in case I have one. I have severe,unexplained gastritis. My gastro also told me that I have fibroids in my uterus. I don,t know what is going on with my body. Every day is a constant struggle with my health. I don,t know how you cope with it. I guess...
  • poorlygir4l

    Possible carcinoid

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    Hi Im just going to be tested for a carcinoid. I have to have a 24 hour urine test where I save it all in a day and put it in a special bottle which I then return to the hospital. Has anyone else had this test? I think there was a hormone in my blood. I then need a scan and if I have it then I have to have it removed. I saw the gastro about my gastritis and he is doing this, Can anyone tell...
  • deleted_user

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  • deleted_user

    osteoscan or petscan?

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    I was just diagnosed with carcinoid tumid last week. I know that a petscan is good for finding cancerous regions throughout body but I read that a osteoscan was a must. Anyone have experience with these scans?
  • deleted_user

    5hiaa

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    I everyone I have had to severe acute pancreatitis attacks in the last year which had me hospitalized for a month each. They were both following surgeries the first gall bladder the second appendix/exploratory. When I eat I get pain and sometimes my face goes really red and hot. Also have had it go really red when not eating. My most recent visit to a dermatologist he wanted me to do a 5hiaa...
  • deleted_user

    platelet serotonin

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    Hi Everyone!Well after years of not feeling well (chest discomfort, bowel problems, dizziness, palpatations, nausea etc) and extensive investigations by cardiology that have come up with nothing other than a rapid heat rate my GP has ordered a blood test for platelet serotonin to exclude carcinoid syndrome.The guidelines for preparation were vague such as avoid avocado, banana and nuts but I have...
  • deleted_user

    True or False ??

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    Can anyone tell me whether it is true that you cannot have facial flushing, wheezing and diarrhea as symptoms of carcinoid unless it has metastasised to the liver........So if you have these symptoms it cannot be due to carcinoid because the liver tests are normal ...............Thankyou :)