February 24, 2013, a visit to the UW Health Emergency Room (ER) with symptoms typical of pneumonia (cough with phlegm, fever, chills and difficulty breathing), I left the ER diagnosed with CAP (community acquired pneumonia) and an abdominal mass.
The abdominal mass was suspected to be cancerous, subsequently a referral to oncology. My oncologist ordered a biopsy which came back showing neuroendocrine tumor (NET). NET cells are spread throughout the human body, but are mainly found in the small intestine, pancreas, and lung bronchioles, and are often low grade and slow growing. My tumor was about the size of a golf ball and was estimated to have been growing in my pancreas for over a decade.
My partner, Keisha had to make dozens of emotional and time-consuming phone calls, text and emails to let family and friends know of this discovery. This exhausting experience led to finding CaringBridge, a powerful connection platform for you to support and encouragement me on this journey with NET. CaringBridge is a 501(c)(3) nonprofit organization, founded in 2002 to provide support when it’s needed most. In times of need, the greatest source of strength, comfort and courage is the love of family and friends. Most of you have asked how you can help, I have links to organizations that provide care for me and are working hard researching cures for this chronic disease. PLEASE DONATE!
- February 2013 - ER visit with symptoms of pneumonia
- February 2013 - Diagnosed Neuroendocrine Tumor with a primary in the pancreas (PNET)
- July 2013 - Distal Pancreatectomy
- March 2014 - Diagnosed Hurthle Cell Carcinoma
- April 2014 - Thyroidectomy
- October 2014 - Thyroidectomy
- June 2017 - PNET Recurrence
- May 2018 - 1st Peptide Receptor Radionuclide Therapy (PRRT)
- July 2018 - 2nd Peptide Receptor Radionuclide Therapy (PRRT)
- September 2018 - 3rd Peptide Receptor Radionuclide Therapy (PRRT)
- November 2018 - 4th Peptide Receptor Radionuclide Therapy (PRRT)
I am a husband, and father to 9 year old daughter. I was in remission from March 2014 to June 2017. Because there is no cure for NET, my surgeon had educated me, average time of progression for recurrence was 50% chance in 5 years. This is the nature of this beast.
To cope with the psychological stress of my PNET, activities of daily living (ADL) must be deliberately stress free. I manage my stress by walking and weight lifting workouts at the YMCA. When not in treatment, I spend my days in a variety of roles, however I am most proud of the time I spend at my daughter’s school as playground supervisor.
June 1, 2017 recurrence of PNET. During my biannual PET/CT scan, imaging showed a recurrence, I consulted with my oncologist, surgeon and I agreed upon total pancreatectomy. My spleen, gallbladder, bile duct had been removed in the 2013 distal pancreatectomy. Total pancreatectomy meant removal of entire pancreas, portions of my small intestine and stomach. After many sleepless nights and consultation with dear family, friends and my medical team, we engaged (pre-op).
Keisha kept at her research and read about the Holden Comprehensive Cancer Center at University of Iowa (UI) ... SECOND OPINION!
UI is out of network and my pre-authorization by insurance company had been denied. We appealed and the pre-authorization was approve. We literally had the approval faxed to UI enroute the 4 hours drive to Iowa.
The Neuroendocrine Cancer program at UI was established in 1999. Thomas O’Dorisio is professor of internal medicine and co-director of the Neuroendocrine Clinic. During our consultation, he used a flowchart showing management and treatment options of care. What really brightened me up was his lock analogy. The "lock" is a type of receptor on neuroendocrine tumors. The locks have keys, or hormones, that can bind to the receptors and slow the growth of the tumors. Dr. O’Dorisio said, I only need 10 percent of theses tumor cells with receptors to have an effect from the hormone and slow down the tumor growing, I had more than 10%. He said I was a good patient for Peptide Receptor Radionuclide Therapy (PRRT).
Miracle within grasp ...
The U.S. Food and Drug Administration approve on January 26, 2018, Lutetium 177 DOTA-TATE (Lu-177) for the treatment of somatostatin-receptor-positive gastroenteropancreatic neuroendocrine tumors (GEP-NET’s) including foregut, midgut and hindgut tumors in adults. Lu-177 is used for PRRT and my care provider UW Health started PRRT in April 2018.
PRRT is not a cure for NET. The aim of this therapy is to slow or stop progression of NET growth and decrease symptoms associated with the hormones released by the NET. Essentially PRRT buys me TIME.
MY GOAL IN SHARING MY STORY
I think of what we can do TOGETHER! In my gallery, I share pictures of myself and some relatives who have died or are in remission from cancer. It is amazing how fast research is producing drugs/treatments to slow the growth of cancer cells and in some cases CURE.
“F U N D research 4 the patient of T O M O R R O W” is my appeal to you.
On my journey, in 2013, Lu-177 was not available in the US. The gold standard in the US was to surgically remove the tumor and live life with resulting variables that impacted ADL.
HOW YOU CAN HELP: I encourage you to peruse my journal and donate directly to courses you believe in. Thank you for reading and sharing my story. Peace be yours!