Shubham Pant, MD: Larry, tell me a little bit—we talked about this before—about your triggers. Wine was a trigger and you said some cheeses. How did you go about eliminating your triggers? Did you go, “Oh, this cheese, not good; this cheese, good”?
Larry Pleasant: Process of elimination. I’d try something and if it triggered a flushing episode, I wouldn’t try it again. And that’s basically the way it worked.
Shubham Pant, MD: So, what all are your triggers? You said some wine, some cheese.
Larry Pleasant: Wine; alcohol in general. In fact, I’m very sensitive apparently to that as a trigger.
Shubham Pant, MD: You’re not shooting tequila…
Larry Pleasant: No tequila, no vodka in the bottle. I don’t even use mouthwash with alcohol.
Shubham Pant, MD: That’s interesting.
Larry Pleasant: Because I try to stay completely away from it. The most difficult part for me is the spicy food. I’ve noticed that I flush often after I eat spicy food, and I love spicy food.
Shubham Pant, MD: Or used to love spicy food, I guess.
Larry Pleasant: I do. So, that has been the part that has been very difficult to manage.
Shubham Pant, MD: Maryann, what about you?
Maryann Wahmann: Mine is usually stress.
Larry Pleasant: Yes.
Maryann Wahmann: Stress-related things—exercised-induced, emotional. I do not drink wine or alcohol. I will have a beer occasionally, that doesn’t seem to bother me as much. I do occasionally use the rescue shot if I want to have a glass of wine or champagne; at my children’s wedding, I did. But otherwise, I really don’t drink alcohol. Cheeses, I don’t really have that much of a problem. Sometimes I do from tomatoes, so I try to stay away from tomato sauces and things like that.
Shubham Pant, MD: Very interesting. You did the same thing, a process of elimination?
Maryann Wahmann: Yes, process of elimination. And you know what, with this disease, you never know exactly what’s going to set it off, each person is so different. One thing I do have to stay away from is turkey.
Shubham Pant, MD: Turkey?
Maryann Wahmann: I cannot eat turkey.
Shubham Pant, MD: So, no Thanksgiving, huh? What do you have on Thanksgiving?
Maryann Wahmann: We have pot roast. So, two years in a row, before my diagnosis, I ended up in the ER with severe abdominal pain and diarrhea and flushing and everything else. And we never put two and two together. And they said, “Oh you must have passed a kidney stone,” and I’m like, “I only pass a kidney stone on Thanksgiving? Kind of weird but OK.” And then later on, I found out that the turkey with the tryptophan turns into serotonin, which set me off. And so, I do not eat turkey unless I have a rescue shot.
Shubham Pant, MD: So, what do you think, Dr. Morse? Does your team work with patients like Larry, like Maryann about self-management of symptoms? Because I think that seems to be a really important link in this disease.
Michael A. Morse, MD: Yes, absolutely. It’s important that people be their own advocates, as we’ve been discussing, and part of that is understanding the cancer, understanding how it affects them and what the triggers are, and what they can do for themselves. And, in fact, we rely on that because I can’t pretend to know what some of these symptoms are going to be. It’s actually fairly common for people to downplay them—I think we all do that. And certainly, when we go to see our healthcare professionals, we don’t want to bother people with our issues. Say everything is OK, that last treatment you tried worked great, many people probably don’t bring up the severity of their symptoms, and so we just assume everything is OK.
So, if somebody doesn’t bring up certain things, usually I go through my mind a list of side effects and symptoms that we want to discuss with people. And it’s also important that people’s other physicians know a little bit about their disease. You can self-educate and you can educate the other healthcare providers. For example, we talked about carcinoid crisis before. It’s absolutely critical if somebody is going to have surgery and has carcinoid syndrome that the surgeons and the anesthesiologists know that.
Most of the time, if you have a major operation and people have taken a detailed health history, they will probably find that out. But what if you go to the dentist and they haven’t necessarily taken a health history, or you haven’t even bothered to mention certain things when you go? So, it’s important to have that so people aren’t given treatments or have stimuli that might bring on a carcinoid crisis.
Shubham Pant, MD: Maryann, I know you talk to a lot of patients and everything. Do you think patients are reluctant to talk to their doctors about their symptoms or not tell them everything because they’re like…?
Maryann Wahmann: I do, I do. I always try to encourage them to open up and tell everything to the doctor. I think that they really should keep a diary of what’s going on, because when you get into that room, the doctor walks in and he only has that three or four minutes. Even with the nurses, they’re afraid to open up and say what’s going on. So, I always tell them to take a diary, keep track of how many times you go to the bathroom. Because I think what they think about is what happened in the last 48 hours, not what happened during the whole month. And so, that’s really critical. Like I said, if I had maybe mentioned earlier to my doctor about the fevers being in the afternoon…
Shubham Pant, MD: You mean flushing?
Maryann Wahmann: It was actually flushing. But after several years of having fevers, you don’t take your temperature anymore. You go into the closet and you take a Tylenol. And so, maybe if I had said something to him, it would have been picked up a lot earlier. So, I was encouraged then. And the other thing I always encourage patients to do is also to be mindful of your body. If you feel something’s not right, make sure you mention it to your doctor because a lot of the time they’ll assume that it’s something to do with carcinoid when it might not have anything to do with it.
Shubham Pant, MD: It might not have anything to do with carcinoid.
Maryann Wahmann: And they might see something else going on. I’ve had patients where they assume that everything was their carcinoid, and then later on they find out that they had a secondary cancer and it actually was colon cancer. So it’s very important that you tell them everything. Is there any change in your diarrhea? Are you having flushing? Or, are you having heart palpitations? Are you making sure that you go for your echocardiogram? We’ve had patients where they’ve had 2 heart valve replacements before they were diagnosed with the carcinoid. So, it’s very important that you tell the doctors ahead of time and also be an advocate when you’re going for surgery. Make sure everybody knows the history and that they properly medicate you.
Shubham Pant, MD: Larry, do you keep a diary?
Larry Pleasant: I try, but I’m not very good at it. I tried doing that early on and I settled into a routine where I just try, frankly, to remember the symptoms that I encounter. Now if I encounter something unusual, then I’ll make sure that I make a note of it.
Shubham Pant, MD: And by this time, Dr. Morse probably knows what to ask, in a way.
Larry Pleasant: Yes, he does.
Michael A. Morse, MD: Well, what is helpful though about having a diary, or at least somebody who can put things together, is individual events are very difficult to put together in a story and to know really how somebody is doing. And a diary or just somebody who can say, “This is what has happened over the month,” allows me to understand better the course of the disease and so I know when we do need to intervene and when we don’t need to really make any changes.
Shubham Pant, MD: So, what you’re looking for is a pattern, essentially, of things that may keep on happening.
Michael A. Morse, MD: I think that’s the way humans think; when we can group things, when we can find patterns, we can understand them better.
Transcript Edited for Clarity