Patient Comments: Carcinoid Syndrome - Experience

Question:Describe your experience with carcinoid syndrome

Comment from: sam, 55-64 Female (Patient) Published: May 20

This article was extremely helpful. Currently, I am being tested for 5-H1AA for carcinoid tumors because of elevated CgA (chromogranin) levels. I have never been so scared in my life. Reading the article at least helped me to prepare myself. However, there is a part of me that just does not want to think about or know any of this information. I have had a constant headache from all of it. Yet, information is still the best policy. You cannot make informed choices if you lack the proper information and resources to do so. Thank you for the article. Very useful.

Comment from: Hope04, 55-64 Female (Patient) Published: May 09

In August of 2011 I begin to have trouble with walking and weakness in my legs. I would have trouble getting up from a sitting position .My balance was off also. Then I would have trouble with my speech in pronouncing some of my words. I did not mind getting older, just not all at one time. I knew I should see a doctor. She referred a brain and spine doctor. She ordered MRI on lower, mid and upper neck looking for cause of gate in walking. The film of neck showed a small mass behind throat. I was sent to see throat doctor. He saw a small knot on the back of my tongue, went to outpatient for surgery while doctor was in surgery he took a look at my sinus and a small biopsy. The knot on back of tongue was fine .The sinus had carcinoma in Situ. Stage 1. I had another surgery for the tumor. I've just finished 30 radiation treatments. I still have trouble with my balance in walking. The cancer doctor says it may get better maybe not. My speech has improved some either way I feel blessed the tumor was found. They say people die with sinus cancer and never know they have. Have your throat and sinus checked. I never knew about sinus cancer, but I do now.

Comment from: Merica, 55-64 Female (Patient) Published: March 30

I have had the symptoms of carcinoid syndrome (flushing, nausea, diarrhea, sweats, etc.) but have not yet talked to my doctor about it as it's been diagnosed before as gastroenteritis, IBS, etc. I've had times of remission lasting between four and 130-some days. I've kept a journal for years so I can go back and see its track record. Should have bought Imodium stock I suppose. I'd like to get all my symptoms into one basket at last. Plan to discuss with my doc at next visit.

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.

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!

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!

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

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