My take on carcinoid syndrome — Keep fighting.
My name is Geri McDowell, and I’m a proud resident of Lexington, Kentucky. After years of abdominal discomfort I was diagnosed with small intestine neuroendocrine tumors in 2003. Surgery kept the disease in check, but five years later it reoccurred, this time along with the classic symptoms of carcinoid syndrome—abdominal pain and diarrhea.
I was lucky enough to have found a fantastic oncologist at the Markey Cancer Center at the University of Kentucky, Dr. Lowell Anthony, who recommended Sandostatin injections.
These shots worked well for a time, but three years ago, a new, darker chapter began, as my heart began showing the unmistakable signs of late stage carcinoid heart disease. I am an avid golfer, but swelling in my legs meant getting around the golf course was difficult. My fatigue was unrelenting, and despite constant oxygen, a pacemaker, a stent and surgery, my prognosis was dire.
With my options rapidly shrinking, Dr. Anthony enrolled me in a clinical trial of telotristat ethyl. By the grace of God, it helped. Slowly, my serotonin levels returned to the normal range. No more oxygen, a lot more pep.
Clinical trials sound complicated and scary. But they are really important for medical progress and patients with NETs should not hesitate to enroll in a trial if one’s physician recommends it. I am told that forty percent of cancer clinical trials do not achieve minimum enrollment. If we are to find better treatments for NETs and carcinoid syndrome, we have to get that number much, much higher.
No one can predict the future. But right now, I can do pretty much whatever I want, thanks to my trust in my doctor to do the right thing by getting me into a clinical trial. I am pretty much back to the “old Geri,” entertaining my children and grandchildren and enjoying a few more rounds of golf.