The Value of Somatostatin Analogs in NETs

Sylvia Lubrano describes her experience with somatostatin analogs, particularly regarding her switch from octreotide long acting to lanreotide.
 
PUBLISHED May 14, 2018


Transcript: 

Robert Ramirez, DO, FACP: You had your surgery, you got placed on long-acting octreotide [Sandostatin], and then what happened?

Sylvia Lubrano: This is before lanreotide came out, and they were giving me octreotide every 28 days. The symptoms got closer together, or not closer together but worse: diarrhea especially. Flushing had stopped. They put me on every 14 days still receiving octreotide, and that did well for a while. I did the short-acting shots, but I had heard about lanreotide, so I was looking forward to that. That’s what I’m on right now, and I’m doing quite well.

Robert Ramirez, DO, FACP: That’s great. You got started on octreotide long acting, or Sandostatin.

Sylvia Lubrano: Right.

Robert Ramirez, DO, FACP: They talked to you a little bit about how this works, how this binds to the somatostatin receptors on your tumor and not only helps some of the symptoms that are associated with this but also helps control the tumor growth.

Sylvia Lubrano: Right. It’s awesome.

Robert Ramirez, DO, FACP: At the time you got started, in the United States we only had 1 available agent, which was Sandostatin. You described this as the butt dart.

Sylvia Lubrano: Right.

Robert Ramirez, DO, FACP: It is a big needle, and it’s a big needle because it needs to go into the muscle. Years later, they switched you over to lanreotide. These 2 agents seem to work very similarly, but the trials tell us that lanreotide is also very effective in controlling the tumor progression as well as controlling the symptoms. Now, the 2 haven’t been compared head-to-head, so is one better than the other? We don’t know. But certainly, the side effects tend to be very similar. When things started to progress, Dr. Woltering had suggested switching you over to lanreotide.

Sylvia Lubrano: Right.

Robert Ramirez, DO, FACP: Tell me what you had heard about lanreotide and what your experience was after your first injection. What are the differences from a patient perspective?

Sylvia Lubrano: I didn’t have the beanbag effect. I don’t know if that comes over time, or maybe it was the different injection for whatever reason. I don’t know. But that was easier, and my symptoms had gotten even better using lanreotide than with Sandostatin. I was waiting for it to be FDA approved because I had heard about it, and I stay on top. I try to just stay educated. That means everything. That’s vital.

Robert Ramirez, DO, FACP: Absolutely. The trials tell us that lanreotide is also very effective in helping control the tumor progression as well as control the symptoms. Now, the 2 haven’t been compared head-to-head, so is one better than the other? We don’t know. But certainly, the side effects tend to be very similar. With the needle, you didn’t get the beanbag effect.

Sylvia Lubrano: Right.

Robert Ramirez, DO, FACP: It’s because the needle seems to be a little bit smaller, and it also doesn’t need to go all the way into the muscle. This goes into the subcutaneous tissue. It can go into the muscle if need be, but it doesn’t have to.

Sylvia Lubrano: I’m glad.

Robert Ramirez, DO, FACP: At some point along your journey, Dr. Woltering and Dr. Boudreaux said, “We think you should try some pancreatic enzymes.” What was going on at the time? Tell me what happened after you started on these.

Sylvia Lubrano: What was happening was a lot of diarrhea. As Dr. Woltering mentioned to me, it smells like dead moose. It runs everyone out of the house. Don’t come around. But it helped tremendously. Initially I took Zenpep [pancrelipase], and I had to take 4 pills at a time with my meals because I wasn’t digesting fats. It was running every day, all day looking for a bathroom. So once I got Zenpep, it helped tremendously. I carry them everywhere I go. I go out to eat, I have them. I go home, I have them. They sit on my table, they’re there. I don’t eat anything without them: maybe bread but not many things. After Zenpep, I switched to the one I take now, which is Creon [pancrelipase], and that’s a lot better. Instead of taking 4 capsules for every meal, I only take 2. I take a lot of other medications for lupus, fibromyalgia, and other things too. So fewer pills are better for me.

Robert Ramirez, DO, FACP: How important do you think your diet is in some of your symptom control?

Sylvia Lubrano: It is important. I have noticed that they help a lot with the fats. What I’m starting to notice now is that if I eat a little more than I did before—which was probably too much, but that’s OK—the amount of food is starting to make a difference again. I eat more small meals, and the pancreatic enzymes still help me that way, even doing that.

Robert Ramirez, DO, FACP: We monitor for this disease to come back, and if it does, we’ve got a plan for you.

Sylvia Lubrano: I know you do. Thank you. I appreciate that. I know that y’all take good care of me. You have so far, and you will keep doing the same. I look forward to coming in there every time because I know I’m in the right place.

Robert Ramirez, DO, FACP: Well, thanks so much for sharing your story.

Sylvia Lubrano: You’re welcome. Thank you.

Transcript Edited for Clarity 

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