Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 12
Robert Ramirez, DO, FACP: We’re pleased to welcome one of my long-term patients, Ms Francisca Bellard, who’s here to tell her story.
Francisca Bellard: Dr. Ramirez, thank you for having me. I probably should start back in 2005, when I first noticed some of the symptoms that I was having. I was having stomach pain, abdominal pain. I honestly felt like I was getting food poisoning all the time. At that point in time, I went out to eat, came home that night, used the bathroom, and noticed there was blood in the toilet. Immediately, I went to the emergency department, and they told me that I had a bacterial infection and that they were going to put me on an antibiotic. If that didn’t work, I should come back on Monday. So I went back on Monday. They said, “Well, we’re really not sure. We’re going to do some more scans. We think you have diverticulitis.”
For a period of about 9 years, I was treated for diverticulitis, which constricted my diet and exercise. One thing I probably should mention is that I was probably around 300 or 400 pounds at the time. Around 2014, I relocated to San Diego, California. I had been there about a month, and I noticed that I was feeling very exhausted. I was winded, and at the latest point in October, I couldn’t even get out of bed. I felt short of breath. I even noticed when I looked in the mirror that I looked jaundiced, I looked yellow. My eyes looked yellow, my skin looked yellow. The final straw was when I went to the bathroom. I’m not a doctor, but I know if you get black tar stools, that is dangerous.
At that point in time, instead of going to urgent care, I went to the emergency department. They told me I had earned a night in the hospital and did a few scans on me. They took blood and urine. I even think they did an ultrasound. They did everything on me. In my mind, I had only been sick for 2 weeks. When a team of doctors came in about 4 or 5 hours later, one of them told me, “Ms Bellard, I’m sorry to tell you, but you have cancer.” In my mind, I had only been sick for 2 weeks, so I thanked the doctors and said, “Thank you for catching it early. Now I can get treatment. I can have a great life.” The doctors turned and looked at me and said, “No, Ms. Bellard, you do not understand. Your bilirubin level, which is normally at 1 mg/dL, is at 26 mg/dL. You start hallucinating around 10 or 12 mg/dL, and you’re at stage 4. Our estimated time right now for you is 2 weeks. We urge you to get your paperwork in order, get a power of attorney, a living will, and whatever you need settled because we don’t see you going any further. We will get your bilirubin down, so if you do want to travel home to be with your family, you’ll be able to do that.” So I called my family, and they came.
I stayed there for about a week and then drove nonstop from San Diego back to Louisiana. At that point in time, I was seeing an oncologist because I had to be released from care in San Diego to a doctor in Baton Rouge. That doctor did not really know what to do with me. He knew I had pancreatic cancer, and he knew I had stage 4 disease, so his idea of treatment was, “We’re going to put you on chemotherapy. We’re going to put you on IV [intravenous] chemotherapy, and we’re going to put it in in a couple of days. You look really well.” But as I found out over the years, with neuroendocrine cancer, you look good. It’s what they call the “look-good” cancer.
He sent me home to enjoy gumbo and potato salad and the LSU [Louisiana State University]—Alabama game day. Later on that evening, I was taken to the hospital because I was running a 105.6° temperature. I was going septic. They brought out the sheet and iced me down, and I spent the next 3 months of my life in the hospital getting chemotherapy and getting all kinds of treatment to get my bilirubin number down. But in the end, I went through 3 rounds of IV chemotherapy, and I went into neutropenia. At the point in time when I was diagnosed, I was 200 pounds. By the time a year had passed—again, a year had passed after they told me 2 weeks; every day I woke up, I was excited—I was down to 112 pounds. I could not see out of my left eye.
At that point in time, I felt that I was slowly dying and that I needed to do something else. That is when they told me I had neuroendocrine pancreatic cancer and that there were no specialists for this. There were no doctors; there were no surgeons. My largest hope that I could have was to go to a clinical trial that they knew was in Kentucky, and they couldn’t give me a 100% chance.
Transcript Edited for Clarity