My name is Kari Jones and I am a Carcinoid Cancer survivor. I currently reside in Chicago, Illinois. I was diagnosed in May of 2006, just 3 days after turning 26 years old. If you have never heard of Carcinoid Cancer, 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 these grow very slowly, compared to other cancers, 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. About Me
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 doctor 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, a small bowel resection (removing the primary tumor and nearly 1.5 feet of small intestine) and Therasphere radiation treatments directly to my liver in a process called radioembolization. This has not put the disease in remission, but it has certainly stalled the progression of the disease. In the meantime, I will continue to get monthly injections of Sandostatin (a drug specific to Carcinoid) to also help control my symptoms and perhaps prevent any further tumor growth. A liver surgery to reduce the tumor load is scheduled for Jan 26, 2011. I continue to find hope by reaching out to other carcinoid patients and 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 support group for Indiana. If you are in the Central Indiana area and would like to join us please visit our website at www.indycarcinoid.org http://www.indycarcinoid.orgshapeimage_3_link_0
Visit Indiana’s only Carcinoid Support Group www.indycarcinoid.org Learn more about my disease: The Carcinoid Cancer Foundation The Caring for Carcinoid Foundation The American Cancer Society The Carcinoid Cancer Awareness Network See my survivor story on http://caringforcarcinoid.org/survivorstories/karijones.asp Read my Zebra Ball speeches Click here for link to ’07 speech Click here for link to ’08 speech http://www.indycarcinoid.orghttp://www.carcinoid.orghttp://www.caringforcarcinoid.org/http://www.cancer.orghttp://www.carcinoidawareness.orghttp://caringforcarcinoid.org/survivorstories/karijones.asphttp://www.cancer.orgMy%20Blog/AC8B6F93-DC24-41FE-B086-9C68310A06A6.htmlMy%20Blog/F3B98E3A-7FE1-45D8-BE5A-A4E581BF04B5.htmlshapeimage_5_link_0shapeimage_5_link_1shapeimage_5_link_2shapeimage_5_link_3shapeimage_5_link_4shapeimage_5_link_5shapeimage_5_link_6shapeimage_5_link_7shapeimage_5_link_8
I welcome all correspondence. I usually respond to emails once a week, so please be patient. All my best to you!
                                                 ---Kari
Feb 2007
February 2008
In honor of NET Cancer Awareness day on Nov 10, I created a video to share with others.
 
See my “Carcinoid and NET Cancer Awareness” Video here