Patient Comments: Carcinoid Syndrome - Life Change

What changes have you had to make to your routine since being diagnosed with carcinoid syndrome?

Comment from: Kim, 45-54 Female (Patient) Published: March 28

I'm a radiation therapist. I treat cancer patients with high doses of ionizing radiation. I have carcinoid syndrome. My symptoms include diarrhea, abdominal pain, bloating, gas, GERD, flushing, increase sensitivity to airborne allergens and insect bites (wheezing/shortness of breath), sporadic increases in blood pressure, and depression.

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Comment from: Nana, 55-64 Female (Patient) Published: July 19

In 2009 I had a carcninoid tumor which had mastetised into two tumors in my small intestines. The only symptoms I had were caused by the blockage. a year later I had a tiny tumor removed from my liver by ablation. I also have the carcinoid syndrome. My main symptoms are tiredness and light headedness. I have been treated with monthly 20 mg Sandostatin injections since the initial surgery. In 2011 I had to have my gallbladder removed due to gallstones. Diarrhea has been an issue since then. I have been able to manage that reasonably well with Cholestyramine. I feel pretty good most of the time - by the grace of God!

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Comment from: dsjok, 65-74 Female (Patient) Published: September 07

I had the left lower lobe of my lung removed for a 2.3cm typical carcinoid tumor. Have shotgun scattered small undiagnosed nodules in my right lung. My Mom died from carcinoid in 2004. One brother had intestinal carcinoid with metastisis to mesentary removed. Another brother has possible carcinoid in small intestines. Some carcinoids are family related. We are participating in a study of families with carcinoid at the National Cancer Institute in Bethesda, MD with Dr. Stephen Wank. If you have carcinoid, please see an Oncologist and do not play the waiting game. These may grow slowly, but they do spread and eventually will kill you if you don't get treatment The life you save may be your own or your loved one's. Don't delay!

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Comment from: Cancer Vixen, 45-54 Female (Patient) Published: September 07

In June of 2011 I came home one day with diarrhea. For months I had very loose stools. I saw my doctor and she suggested OTC drugs for diarrhea. In February of 2012 the doctors did scopes and tests and found several carcinoid tumors in my liver. I swole up with fluid and gained 20 lbs in a week. I had trouble breathing and had to sleep sitting up in bed. My legs and feet swole up so much I couldn't put on socks or shoes and my face was almost unrecognizable. There was a "metallic" taste in my mouth all the time and food tasted awful! I've been self injecting Sandostatin twice a day and taking Furosemide pills. I have no side affects or pain now. I'm hoping the Sandostatin helps shrink the tumors.

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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.

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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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