Patient Comments: Carcinoid Syndrome - Experience

Question:Describe your experience with carcinoid syndrome

Comment from: Jan, 65-74 Female (Patient) Published: May 03

I have had carcinoid syndrome symptoms (I call them attacks) since 2004 or 2005. Additionally, I will experience extremely red hands and a tingling, a scratchy tongue (not swollen that I can tell because I can swallow), right under my ear lobe (sometimes right, sometimes left) will swell, lightheaded, then the diarrhea will start. This will last 30 minutes to three to four hours then it's gone. Oh, and it always starts with a meal. I will have only taken one to two bites when I can feel my face heating up. It sounds in so many ways like an allergic reaction to something, but I don't think it's anything I am eating because there is a time lapse from the last regular meal. I have briefly discussed it with my doctor, but I dismissed going for further tests. However, since my last "attack" lasted three and one-half days, I think it's time. Also I went a whole year without having an "attack" and I generally don't have any more than six or seven a year.

Comment from: Boomer, 55-64 Female (Patient) Published: October 05

Carcinoid tumor attached to appendix and colon diagnosed and removed in 2008. With no oncology follow up, symptoms now 3 years later, 2011, flushing, abdominal pain, depression am wondering if carcinoid has returned. Working full time in medical research as phlebotomist find it challenging and tiring. I admire the radiologist I read about. It is very hard to work and have this.

Comment from: Lutz, 45-54 Female (Patient) Published: November 30

When I lay on my left side I feel like there is a lump right below ribcage. It's swollen and tender. I have flush symptoms and I have a bad coughing spell only once a day. I was having cramps in uterus area with some loose stools. Strange symptoms. I hope someone can help.

Comment from: Janey, 45-54 Female (Patient) Published: May 03

I had a carcinoid tumor removed from my rectum in November, 2010, and another in September, 2011, and am having a third removed this week in May, 2012. I have the carcinoid syndrome, with all the symptoms listed, but this time I am so wiped-out. I am extremely tired. I am also, getting pretty tired of these "little surgeries." Will it ever end?

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Carcinoid Syndrome - Signs and Symptoms Question: What were the signs and symptoms associated with your carcinoid tumor or syndrome?

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