Improving Quality of Life for Patients With Carcinoid Syndrome - Episode 13
Francisca Bellard: I did some research on my own with the help of my family and friends and we found your clinic in Kenner, which is crazy because it’s 30 minutes away from my home. I drove there and the first thing that you told me—and I will remember this until the day I die—was, “You’ve tried chemotherapy. We’ll try oral chemotherapy. But I’m looking at your chart and they’ve done everything to you. The only other option is a transplant. I don’t know if you’ll get picked, but it’s like winning the lottery. And if they do this transplant, it’s not like you go into remission. It’s like you never had cancer. But there are only 2 hospitals in the whole United States that do it. One’s in Indiana and one’s in Miami. We have to send your paperwork off to see if they approve you, and in that meantime, we’ve got to get you to gain weight. We’ve got to make sure you stay alive until that process, and then you have to wait for an organ. So, it’s a shot in the dark, but I’m willing to do it if you are.”
We proceeded to do that, and I went septic 12 more times over that course of time. You looked at me one day and said, “We’ve got to do something for you because you’re just losing weight. We don’t know why you don’t gain any weight.” Come to find out, I had a stent that was placed inside me that had made a food shelf inside my intestines, and I was not getting any of the nutrients that I needed. So, you suggested TPN [total parenteral nutrition]. TPN was probably one of the godsends that I had. It provided 2000 calories for me, and I immediately started gaining weight. It wasn’t through a feeding tube. It came in through IV, and I was on TPN for 2 years. It carried me on and allowed me to exercise and move around my house, whereas I couldn’t before. I was only able to lay in bed. But in the meantime, the oral chemotherapy that we tried didn’t work. We tried the octreotide scan, we tried a couple other scans, but none of them showed my cancer. This was a problem with previous doctors as well. For whatever reason, my cancer didn’t show up. As far as everyone else was concerned, I had innumerous amounts of tumors. My body was riddled with it, but it hadn’t made it to my bones or my lungs. We knew it was in my pancreas and we knew it was in my liver because we could see that.
In the end, you finally suggested that I get the Gallium-68 scan because that was one of the requirements for one of the hospitals to accept me. We went ahead and we got that scan done, which had just gotten FDA approval. And I was sitting with Dr. Philip Boudreaux when, for the first time in a year, I saw my cancer. It was mind blowing. You think of this thing that’s been eating away at your body and come to find out it’s just these 3 enlarged masses in your liver and this 1 whole big thing in your pancreas. It’s not like this army in your stomach that’s eating you alive day by day. It’s amazing. I broke down and started crying, and he asked me why. I said it was the first time I’d ever seen my cancer. A little while after that, after we sent off all the information and did every scan that we could, I found out that I was accepted by the Miami Transplant Institute to get an organ transplant.
Robert Ramirez, DO, FACP: You pointed out something interesting. We had an octreotide scan on you.
Francisca Bellard: Yes, we did.
Robert Ramirez, DO, FACP: Which showed nothing.
Francisca Bellard: Nothing, nothing.
Robert Ramirez, DO, FACP: Your tumors did not have somatostatin receptors.
Francisca Bellard: Correct.
Robert Ramirez, DO, FACP: And therefore, they did not light up on the octreotide scan.
Francisca Bellard: That is correct.
Robert Ramirez, DO, FACP: But along comes the Gallium-68 scan, and wow, what a difference.
Francisca Bellard: It was. It not only showed me the tumors, but it was in full color. It actually showed that my spleen was 3 times the size of a regular human. I understood what some of the cause of the cramping was: My spleen was pushing all of my insides to one side, and so I was having these intestinal cramps and stomach cramps because that spleen was just taking up most of my abdominal cavity.
Robert Ramirez, DO, FACP: Yes. The Gallium-68 scan has really made a big difference.
Francisca Bellard: It has made a tremendous difference.
Robert Ramirez, DO, FACP: By the time you had found us, you had gone through quite a bit already.
Francisca Bellard: I had.
Robert Ramirez, DO, FACP: When was the first time you heard the word “neuroendocrine”?
Francisca Bellard: The first time I ever heard the word “neuroendocrine” was around December 2014 or right at the beginning of January 2015. The doctors in California had told me that they thought it might be neuroendocrine, but they really weren’t sure. Every time they went to do a biopsy, all they had were clean cells. They were never able to actually tap in and get any of those cells, even though they were innumerous. Again, when I was in Baton Rouge and they did the scans and biopsies there, they were never able to find it. But they felt given the growth pattern, how long it looked, and how slow it was growing, that it must be neuroendocrine. One of the things that happened during that time is I found out through a family member that ovarian cancer and breast cancer ran in my family. Now, I wasn’t susceptible to those things, but those were all part of neuroendocrine because they’re hormone based.
At that point in time, I actually had a partial hysterectomy. They took 1 of my ovaries, on my left side, and fallopian tubes at that point in time. Under your suggestion, they used a type of birth control that had the lowest amounts of progesterone possible. What that actually did was freeze my cancer. It made it go into a stasis where it didn’t grow. So, by the time I got to the transplant, it wasn’t growing anymore. I had 8 months where I was sitting there with no treatment, no chemotherapy, and no oral chemotherapy. But those suggestions that you gave got me to that point of transplant.
Transcript Edited for Clarity