Carcinoid Syndrome

Carcinoid Syndrome Resources

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Mayo Clinic
Web MD
Carcinoid Cancer Foundation

 The 5 E’s of Carcinoid & Neuroendocrine Cancers

There are several activities that can cause a flare up of Carcinoid Syndrome symptoms and in the worst case: Carcinoid Crisis:
  1. Eating (some foods & drinks)
  2. Exercise, trauma, anesthesia or injury
  3. Emotions (especially stress)
  4. Epinephrine (found in many medicines) 
  5. Ethanol (alcohol, liquor) 

Symptoms I Can Recall: 

I did leave off of a few — some things are better left unread. The following symptoms occur spontaneously, last for hour(s) and then resolve. It would always be a few symptoms, up to six occurring at once; a few hours later the same symptoms would occur or it would be a different mix.  Dr. R asked my to keep a symptom diary — I let him know I had a full time job, but would keep track in two hour blocks.  Ultimately, it was the symptom diary (and my flushing in front of him) that led him to refer me to the Carcinoid specialist at University of Iowa Hospital and Clinics, but ultimately NOT a diagnosis of Carcinoid Syndrome.  (see updates)

flushing (#1 symptom of Carcinoid)
fatigue
ocular migraines
nasal congestion
runny nose
bronchospasm – weird wheezing
heart palpitations
swelling of ankles and hands
nausea
heavy lungs
abdominal pain
diarrhea
oral blisters
dizziness
fainting
rashes
itching
ringing in ears
hive
burning eyes
excessive tearing

How it’s Manifested (see updates)

     Carcinoid Syndrome is a rare cancer of the neuroendocrine cells that has a constellations of symptoms that result in the ‘syndrome’.  Carcinoid tumors affect 1 in 100,000 people, only 10% of those with tumors develop Carcinoid Syndrome. I’ve been dealing with this for 17 years (average diagnosis is 9 years) but have been extremely miserable and symptomatic since September 2011.  God has been good in this journey — there are about five top doctors in the US who work with Carcinoid, one is at the University of Iowa Hospitals and Clinics and he makes visits to the Pella clinic. God brought the doctor to ME! Many people travel across the US and wait for months for an appointment.  The day of my visit, Dr. S told me that was the very day they were going to start the list of people to get to use the Gallium 68 PET scan that had been recently approved by the FDA and I was getting moved to the top of the list. He’s been working for years to get the scan to the US — how’s that for God’s timing.

     Most people have Carcinoid Syndrome because tumors haven’t been found and removed or it has spread to their liver.  Nearly everyone in the US has had an octreoscan which is accurate only 85% of the time, takes several days to complete and isn’t able to detect small tumors. Many people have to live with the symptoms because the tumors can’t be found.  I’m in line for the Gallium 68 PET (only available in Europe until now) which takes 40 min and detects tumors down to 5mm. No tumors = no Carcinoid Syndrome!  
     I give myself Octreotide injections that last for 4-5 hours at a time, and I can definitely tell when it’s time for more.  This has allowed me to feel normal, a feeling I had truly forgotten and am not sure if I even remember.  Sleeping through the night without waking up with wheezing, itching, etc has been blissful.  Once I have the scan, I’ll be able to have an injection that lasts for about 3-4 weeks.

UPDATES:

06/2012 – The Gallium 68 PET did not detect any Carcinoid tumors.  I have appointments with other specialists to figure out what is going on. Still on daily Octreotide injections.

11/2012 – Diagnosed with Hashimoto’s Disease. Still on daily Octreotide injections.
01/2013 – Diagnosed with increased stomach emptying with liquids
06/2013 – Extensive testing at Mayo Clinic, but no diagnosis
01/2014 – Diagnosed with Hyperinsulinemia, daily checking of blood sugar
11/2014 – CT scan: no indication of tumors or lesions
03/2015 – Extensive testing = no hyperinsulinemia; impaired gastric accommodation


There are so many amazing things God has done for me through this–don’t be afraid to ask me about God’s goodness.  God has impressed on me that I won’t die from this and there is a cure.

One comment

  1. Hi Lisa,
    Is your insurance company paying for the octreotide injections or is it out of pocket? I pray that you soon find a definitive answer for your illness and are completely healed.

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