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My Husband was newly diagnosed with Carcinoid Cancer
Neuroendocrine Tumors (NETs) | Last Active: Aug 14, 2017 | Replies (25)Comment receiving replies
@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually these symptoms that prompted me to get MANY tests that ultimately found my first tumor in my Ilium colon. I was having SEVERE watery diarrhea. I had always had IBS my entire life, but this was different. All blood and fecal tests and scans negative, so demanded the colonoscopy where they luckily found the little guy hiding. Carcinoid syndrome is different for everyone. Right now, I'm not having so much of the watery diarrhea, but am having severe flushing episodes where my chest and face/ears turn red and I have dry heat (no sweating). Foods and emotions mainly trigger it for me, and I had a very bad scare at dental office few weeks ago where they gave me novacaine with Epinephrine in it. It sent my blood pressure through the roof, very red flushing and literally thought I was having a heart attack. This is known as Carcinoid Crisis, which I was NOT aware of until speaking with my doctor last week. Turns out Epinephrine is VERY bad for Carcinoid patients as it has contraindications to usual patients. Say NO EPI when docs ask what drugs you are allergic to!
Replies to "@hopeful33250 , @heidilynn4 , sure happy to explain my experience with Carcinoid Syndrome. It was actually..."
Because of the possibility of carcinoid crisis due to epinephrine, I decided to wear a medical bracelet. It's a six line bracelet that reads
MY NAME
CARCINOID SYNDRONE
NO EPINEPHRINE
OCTREOTIDE DRIP
I asked my oncologist if this would suffice and he asked, if possible, to add: CALL . So his name and number are on the 5th and 6th lines of the bracelet.
I first learned of the availability of the bracelets from the Carcinoid Cancer Foundation/Zebra Medical Bracelet, but at the time of my interest they had none. I googled med bracelets until I found one I liked and order from them.
Thanks! @tresjur I appreciate your entering the discussion. The medical bracelet is a great idea.
I asked my oncologist about the NO EPI and if it should be on my medical record. He said if it was a matter of life and death you would WANT to get epi. Then they would just administer the octreotide afterwards.
@gaylejean That is an interesting approach, thanks for sharing your doctor's opinion. It might still be wise to have a medic alert bracelet with information about the need for the Octreotride if EPI is administered. Has anyone else discussed this with their doctor? @amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson If so, share any information that you feel would be helpful. Teresa
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@jenchaney727 Great information, thanks for the explanation as to what carcinoid syndrome is in your situation. Also, good to know about EPI, I did not know about that. Teresa