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Jan 23, 2020 Latest post:
Feb 11, 2020
Welcome to Lorinda’s CaringBridge site. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Here is my journey with Neuroendocrine Cancer.
In August 2014, I began having severe stomach pain and ultimately had to go to the emergency room at Medical Center in Dallas. After 4 days of scans and tests, they could not determine what was causing the painful intestinal blockage so it was necessary to perform a laparoscopic surgery (presumably to remove excess scar tissue developed from prior minor surgeries). Instead of finding and removing scar tissue, the surgery resulted in the discovery of a Neuroendocrine “mother” tumor in the ileum (a typical initial growth area). The surgeon at Medical Center was not a specialist but had seen this diagnosis before and referred me to MD Anderson in Houston where they determined that the cancer had metastasized to lymph nodes and the liver (where this cancer likes to go). MD Anderson was reluctant to approach this condition aggressively through surgery due to fear of the development of more severe scar tissue. Chemo treatments have not been successful due to the typical slow rate of tumor growth. I was told that typically this cancer is very slow growing and lots of people lived a long time with the condition but there were sometimes sever symptoms that would require changes in diet, lifestyle etc.
After a little research online, I found a very special group of people in a Dallas support group that have been diagnosed with neuroendocrine cancer as well. Attending these meetings resulted in a plethora of very valuable information about our condition and the Drs that treat it. Through these meetings, we learned of a group of well-known doctors in New Orleans (Kenner actually) at Ochsner that specialize in Neuroendocrine cancer. This group of doctors in New Orleans have historically had better statistical results by treating this cancer aggressively so it was determined that surgery was appropriate to “debulk” the tumors and then treat with several specialty drugs going forward. So, in July 2015, I had my first surgery at Ochsner that discovered and removed several tumors in my abdominal area in addition to ablating tumors on my liver. I recovered from the initial surgery and was back to eating somewhat normally but by the summer of 2016, the scar tissue on my intestines (the fear of MD Anderson in Houston) had developed to the point of causing a severe blockage again. In November 2016, I had another surgery at Ochsner to clear the scar tissue and once again recovered from the surgery but by May 2017, the scar tissue was severely restricting my intestinal area once again and I was not a candidate for more surgery. At this point, I was put on TPN (feeding through a PICC line in a vein in my arm) but could still eat small amounts of food normally but not enough to sustain life.
By this time, doctors in Dallas at Baylor hospital had begun practicing and treating this cancer. A radiation treatment called Peptide Receptor Radionuclide Therapy (“PRRT”) was still in the trial phase in the U.S. (has been performed in Europe for several years) was worth a try to stop the cancer from growing so in December 2017 through February 2018, I did 3 of the 4 recommended treatments at a trial clinic in Houston. Before the 4th treatment, I became septic and ended up in Baylor hospital again where they determined that fistulas had developed between my intestines and bladder (presumably there were tumors attached to these areas and the radiation destroyed the tumors but also destroyed the good tissue between these two areas which is a very rare but bad outcome from the PRRT treatment). Despite not eating much of anything, I was continuing to vomit 2-3 times a day. To alleviate this condition, they installed a tube in my stomach that protruded out the side of my abdomen and this was indeed successful in eliminating my continuous vomiting. Although I could not digest anything, I could still eat soft foods that would be drained from the stomach through the tube. I continued to live like this on TPN (through the PICC line and a port in my chest) and a stomach drain until a December 2019 scan revealed the tumors were growing again. The doctors and I were considering additional PRRT treatments to stop the tumor growth since I was doing (in their minds) very well even with all the complications. On Christmas Day I became extremely ill and ended up in Baylor again on NY Eve (December 31, 2019). Scans and tests revealed 2 different infections and abscesses due to a perforated bowel and after discussing all of this with my oncologist, I have decided to put all of this in God’s hands and enter hospice treatments at home. There is a small chance that this bowel perforation could heal but it’s not likely. I have had a good life and been fortunate to be married to Ja (my husband and life partner for almost 38 years and caregiver for the last 5 ½ years). We have been fortunate to have had several adventures to overseas outposts and a bunch of wonderful family members and friends.