My name is Kari Jones and I am a Carcinoid Cancer survivor (or as I like to call myself: a cancer sur-thriver). I currently reside in Zurich, Switzerland. I recently moved here from Chicago, Illinois and I was diagnosed while living near Indianapolis, Indiana back in 2006.
I was diagnosed in May of 2006, just 3 days after turning 26 years old. If you have never heard of Carcinoid Cancer (or Neuroendocrine Tumors), then you are not alone. Carcinoid Cancer and related Neuroendocrine Tumors are small, slow growing tumors found mostly in the gastrointestinal system. Since most of them grow very slowly, compared to other cancer, it usually takes many years before they become sizable or cause symptoms. Because of this, many carcinoid patients are often misdiagnosed first, and on average wait 9 years before getting an accurate diagnosis. This was the case with me, as my symptoms began to present 8 years before I got my correct diagnosis.
When I was finally diagnosed, the primary tumor in my small intestine had metastasized to my liver, where several tumors developed. At the time, I was diagnosed as stage 4, and my first oncologist admitted to me that he didn’t think I would make it through that first summer. He didn’t know me very well at the time. He also didn’t realize what a fight I’d put up.
Since being diagnosed, I have endured 10 months of intensive chemotheraphy (2006), a small bowel resection (2006), which removed the primary tumor and nearly 1.5 feet of small intestine, and Y-90 Therasphere radiation treatments (2007) directly to my liver in a process called radio-embolization. This has not put the disease in remission, but it has certainly stalled the progression of the disease. In January 2012, I had a liver cyto-reduction surgery (tumor debulking) by Dr. Philip Boudraux at the New Orleans LSU clinic. They were able to remove 90% of the tumors, and my CgA, 5HIAA, and other markers improved dramatically. In the meantime, I will continue to get monthly injections of Sandostatin (a drug somewhat specific to Carcinoid) to also help control my symptoms and perhaps prevent any further tumor growth. While living in Chicago, I was followed by Dr. Al Benson and Dr. Riad Salem.
My personal mission is to live life to the fullest while living with cancer.
I continue to find hope by reaching out to other Carcinoid and Nueroendocrine Cancer patients and by getting involved in the fight against cancer. I hope that by sharing my story, I will be able to inspire others into action, as well as give hope and support to those that are out there struggling with this disease.
In July 2008, I established the first Carcinoid and Neuroendocrine Tumor support group in the state of Indiana. If you are in the Central Indiana area and would like to join us, please visit The Indiana Carcinoid Awareness Network at www.indycarcinoid.org
Feel free to email me at: Follow me on Twitter and Instagram at:
[email protected] @a_swisstory
I welcome all correspondence. I try to respond to emails once a week, so please be patient. All my best to you!