Malignant Carcinoid Syndome

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Malignant Carcinoid Syndrome

 

 

Malignant carcinoid syndrome is more common in individuals who have had carcinoid tumors for many years. Approximately 60% of people with carcinoid tumors ultimately develop carcinoid syndrome

 

The ”Flushing zebra” is symbolic of what many of us who have malignant carcinoid syndrome go through and feel like many days of our lives.  To understand this, you first must understand the symptoms of carcinoid syndrome.

 

People with carcinoid syndrome often experience the following symptoms. Sometimes people with carcinoid syndrome do not show any of these symptoms.  Or, these symptoms may be similar to symptoms of other medical conditions.  If you are concerned about a symptom on this list, please talk to your doctor.

 

Be aware that stress, strenuous exercise, and drinking alcohol may worsen these symptoms.

 

Note: Those symptoms listed below that have an active “button” may be selected to obtain more detailed information

 

Flushing

Diarrhea

Asthma/Dyspnea

Low blood pressure

Fatigue

Wheezing

Myopathy (Muscle Weakness)

Arthritis

Arthralgias (Joint Pain)

Secondary Diabetes

High blood pressure

Neurosis and psychosis

Palpitations

Asthenia (Weakness)

Changes in Mental State

Abdominal Cramping

Dizziness

Carcinoid Heart Disease

Sweating

Carcinoid Crisis

Increased Body and Facial Hair

Shortness of Breath

 Fast Heartbeat

Heart murmur

Myalgias (diffuse muscle pain)

Weight Gain or Loss

 

 

 

Flushing

Flushing is a phenomenon of transient vasodilation causing reddening of the face, head, neck, and the upper chest and epigastric areas.

Flushing is the most frequent symptom of malignant carcinoid syndrome and may be brief (e.g., 2-5 minutes) or may last for several hours. Flushing may be accompanied by tachycardia (Abnormally fast heart rates), while the blood pressure usually falls or does not change.

Malignant carcinoid syndrome is not a cause of sustained hypertension, but a rise in blood pressure during flushing can occur. In addition to cutaneous vasodilatation, some patients also develop telangiectasia (visibly dilated blood vessels on the skin or mucosal surface), primarily on the face and neck, which is most marked in the malar area.

I personally have experienced hundreds of flushing episodes over a thirty year period. Many times the flushing has been accompanied by massive sweating. This could occur while I was asleep or awake and I could also “pass out”.

On one occasion, about ten years ago, I was negotiating a deal for some computer equipment at my local CompUSA. The salesman suddenly looked strangely at me and asked me if I was OK. The next thing I knew, I was being “worked on” by a rescue squad which had been summoned with a 911 call.

 

 

Diarrhea

Debilitating diarrhea is common with malignant carcinoid syndrome and may have a secretory component. As many as 20 episodes of diarrhea per day are possible and cause marked

debilitation due to fluid, electrolyte, and protein depletion. The diarrhea persists with fasting, fails to disappear when the patient is fed intravenously, and usually is accompanied by flushing; however, diarrhea occurs alone in approximately 15% of patients. Abdominal borborygmi and cramping or pain may be present. When severe, malabsorption may occur and may even cause death.

During the years from late 1985 well into the mid-90s, I had as many as 40 diarrhea episodes a day. I was doing work all over the metropolitan Washington DC area and so could not be further than ten minutes from a “known toilet - be it in a private home, apartment, grocery store, service station or whatever.

 

 

Asthma/Dyspnea

Bronchospasms, which cause asthmalike attacks, generally are most pronounced during flushing attacks. Bronchospasms are a less

common sign of malignant carcinoid syndrome but may be severe.

When I made an emergency return to the United States from Saudi Arabia (in late 1985), I had been coughing for three solid months and had begun coughing up bloody sputum. I could not get a full breath and continued my coughing spasms for another year in spite of the treatments provided me by a Pulmonologist. Tests indicated that I was getting only about 50% of the normal oxygen.

 

 

Carcinoid Heart Disease

Carcinoid heart disease is reported in approximately 50-60% of all patients with malignant carcinoid syndrome and is severe in approximately 25%. Carcinoid heart disease occurs primarily on the right side of the heart but may involve the left

side to a minimal degree. Fibrous deposits adhering to the surface of the valvular endocardium may occur as part of this condition. Thickening of the endocardium of the cardiac chambers and papillary muscles and thickening and deformation of the valve cusps and chordae tendineae can lead to heart failure, influencing valvular function and causing regurgitation, stenosis, or combined functional lesions. The tricuspid valve is affected most commonly.

 

 

 

Carcinoid Crisis

 

 

Carcinoid crisis occurs when all of the symptoms of carcinoid syndrome occur at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome. Carcinoid crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. A carcinoid crisis may be prevented and successfully treated with octreotide, a therapy that can help to raise low blood pressure and control the production of hormones.

 

 

 

 

 

This page was last updated February 7 2015

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