My Medical Timeline…
1999- 2003: Sporadic episodes of abdominal pain and inconsistent bowel movements. Flushing, or redness in the skin, begins to occur at various times lasting 3-5 minutes each episode
Summer 2004: (Age 24) Abdominal pain becomes more frequent and severe. Flushing in skin is now occurring at least daily, usually after each meal and during times of high stress or anxiety. Visited E/R or urgent care centers on various occasions when pain was at its worst. Usually prescribed an antacid of some sort. Was once diagnosed with Gastritis and prescribed Pepcid.
June & July 2004: Finally committed to a primary care physician. X-Rays and Ultrasound performed of the abdominal area. At that time, the liver was “of normal size and configuration” All abdominal organs were “unremarkable”. Diagnosed with Iron Deficiency Anemia. Her report has the notation: “flushing; possible carcinoid?” She was onto something and referred me to a gastroenterologist.
August & September 2004: Met with gastroenterologist several times for tests and consultations. Endoscopy and colonoscopy performed, both come back negative. Gastroenterologist does not test for carcinoid or any other possibilities. Officially diagnosed with irritable bowel syndrome.
October 2004 – March 2006: Pain initially lessens, probably due to improved diet and increased exercise. During times when pain did present itself again, would normally visit an urgent care center just to be sent home with a new pain medication or antacid.
April 2006: Began seeing new primary care physician in Greenfield Indiana. Lost 15lbs in three weeks, abdominal pain was so severe that eating was undesirable or vomiting occurred afterwards.
May 2006: Abdominal ultrasound performed on 5/19, showed numerous masses throughout liver. CT scan performed 5/22, confirmed multiple hepatic masses throughout the left and right lobes of the liver. The largest measuring roughly 5cm. Liver biopsy performed 5/25. Official diagnosis of neuroendocrine carcinoma (carcinoid tumors) received on May 31 (three days after turning 26 years old)
June 2006: First week was spent doing tests and scans to confirm diagnosis and locate primary tumor. By June 9, all tests were performed including an enteroclysis, which located the primary tumor in the small intestine (this was beginning to cause a small bowel obstruction).
June 2006 – April 2007: Chemo – ugh.
Received 8 rounds of chemo drug Streptozocyn, and received 4 rounds of the drug Adriamyocin. The Streptozocyn was delivered 5 days straight (2 hours each day) and was repeated every 6 weeks. The Adriamycin was only one day (for about 1 hour) repeated every 3 weeks. I was finished with it by October. The Strepto went through April of the next year.
August 1 – August 12 2006: My first real hospital stay. Admitted to Hancock Regional Hospital during my second round of Streptrozocyn for a small bowel obstruction. The primary tumor in my small intestine was winning the battle. On Friday August 4, my surgeon Dr. Cam Gabrielsen performed an emergency small bowel resection removing 40 cm of small intestine and taking out the little bastard. Happy Re-Birthday to me! This seems to be the turning point in my recovery. The recovery in the hospital took longer than expected, but I’ve bounced back mightily ever since then.
Spring 2007: Continued receiving Streptozocyn chemo. Finished near the end of April. CT scans showed no further progression but tumors still exist and the largest increased in size. No traces of carcinoid anywhere but in the liver. Local oncologist suggests liver transplant.
May – June 2007: Consulted with Dr. Al Benson and Dr. Riad Salem at Northwestern Memorial Hospital in Chicago. New radioembolization using Y-90 Theraspheres procedure is recommended.
July & August 2007: Two Therasphere radiation treatments performed by Dr. Salem as part of a clinical trial. Initial scans and follow up tests indicate some improvement in condition. Scans show signs of death in several tumors, the largest has decreased slightly in size. The 5HIAA test results continue to go down (slowly, but surely. For now that’s good!)
Fall 2007: A time for waiting and watching. Pretty uneventful period. During October I had two separate weeks of severe pain in my right abdominal area (where the dreaded liver is). Never quite determined what it was – perhaps just a tumor acting up? Pain went away with prescription medicine and has not returned since.
January 2008: Returned to Northwestern for follow-up tests and scan to see how the Therasphere treatments took. Results were good – the disease can now be described as stable. Many tumors have died or shrank in size. No progression of disease in liver or elsewhere in the body.
March & April 2008: Two Dr appts during this time. One with Dr. Helft at IU Medical center, and one with Dr. Salem at Northwestern Memorial. Dr. Helft, after review of a recent PET scan, suggests that we might be a candidate for liver resection surgery. Dr. Salem, after review of MRI, states the opposite. Now waiting in limbo for more information and possible third opinion from another Dr. Both scans still show no progression of disease (that makes 10 months of progression-free disease).
Summer & Fall 2008: Well, we’ve passed the 12 month mark of progression-free disease. The carcinoid has remained stable and all symptoms are very minimal and well controlled. We’ve met with a liver surgeon to discuss a possible liver resection, but have decided that while the disease is stable I am comfortable with continuing just the Sandostatin shot. At the first sign of any progression, we will revisit the possibility of surgery.
December 26 2008: Follow-up MRI is performed of abdomen and chest. Happy to report that all tumors have stayed exactly the same size since our last set of scans. There is no progression of the disease. Bloodwork is also collected to test liver function – all comes back good.