Be Aware of The 5 E's. They Can Trigger
a Carcinoid Crisis
Tachycardia: rapid heart beat
Severe Dyspnea: shortness of breath
Peripheral Cyanosis: lack of oxygen in the blood causing a bluish discoloration of the skin
Sometimes Hemodynamic Instability: circulatory shock or advanced heart failure
Prolonged severe flushing
Hypotension: Low Blood Pressure
Epinephrine: (Adrenaline) It is extremely dangerous for carcinoid patients to receive this hormone as it can precipitate a carcinoid crisis. Epinephrine is in novacaine, (REMEMBER THE DENTIST) and also used as a numbing substance for various medical applications. There are "caines" available without epinephrine (like mepivacaine and marcaine). Make sure your dentist and others know that you cannot tolerate it. If you have a medical ID bracelet or necklace, NO EPI should be prominently displayed. Although if the situation is life-threatening, many EMTs will ignore the warning. Beware of chemicals or medicines that end in "INE". Morphine is an exception. (Thank you Dr. Woltering).
Ethanol: (Alcohol): Hardly any carcinoid patients can tolerate wine or beer because they contain amines. They trigger flushing, hot flashes, etc. On the other hand, many people can still drink "hard liquor" - rum, vodka, gin, bourbon, etc. Some people cannot tolerate any of these. We each have our own tolerance level.
Exercise: Moderation is the key and work up a tolerance if you are just beginning a regime. Lots of carcinoid and NET patients are regulars at gyms, and walk, run, ski, swim, and practice Yoga.
Eating: Large meals are difficult for most of us, especially those who have had mid and hindgut surgeries. There is an excellent section on diets on the Carcinoid Cancer Foundation website. There is a list of "forbidden fruits" which does not mean you have to avoid them entirely. Some can indulge in those foods and some cannot. For instance, chocolate/caffeine is on the forbidden list. It is a matter of trial and error. Most of us cannot eat an entire "regular" meal.
Some of you will find you are better off with smaller meals more frequetly or eating small bits throughout the day.
Emotions: STRESS! It is difficult to avoid all stress. Such practices as meditation, yoga, massage can be very helpful.
We all seek to find our way through these life changes without too much compromise in quality of life.
Carcinoid Crisis is an immediate onset of a debilitating and life-threatening condition associated with carcinoid syndrome. May occur spontaneously or caused by anesthesia, chemotherapy, infection, stress, tumor manipulation or embolization procedures.