A "Tomorrow's Cure" podcast episode from Mayo Clinic explores cholangiocarcinoma, a rare and difficult-to-treat bile duct cancer. Host Lindsey Seavert speaks with Rory L. Smoot, M.D., a Mayo Clinic surgical oncologist, and Melinda Bachini, a long-term survivor and patient advocate. They discuss symptoms, diagnosis, treatment challenges, clinical trials and the value of second opinions. The episode highlights promising research and the growing momentum toward personalized treatments.
That's the other exciting thing, you know, I learned about this lipid nanoparticle because I was at a talk and I saw Doctor Patel give it and said, you know what, I think we could properly use that to do this, and that's the exciting thing is that now we've demonstrated you could do this for cholangiocarcinoma, and somebody's going to look at that and say, you know what, I think that might work for colon cancer or for lung cancer, and they may, they may try it as well.cholangiocarcinoma may not be a word you are familiar with until it becomes part of the story of someone you know, or even your own. It's a bile duct cancer, and it's one of the hardest cancers to treat because it's often found late. This cancer can vary dramatically from one patient to the next, and standard therapies don't work well enough for many people. But what if the future means not just finding a new drug, but finding a smarter way to deliver treatment directly to the cancer cell itself? That's what we're talking about in this episode of Tomorrow's Cure for Mayo Clinic, a podcast that brings the future of medicine to the present. I'm Lindsay Sievert. It's great to have you with us. Joining me today are Doctor Rory Smoot, a surgical oncologist at Mayo Clinic, and Melinda Bacchini, Chief Patient Officer at the Chiangiocarcinoma Foundation. And a long term survivor who knows firsthand what it means to live at the edge of what medicine can do today. We're talking about a cancer I've never heard about, and I know for the families affected, and Melinda, you've been affected, the stakes are really enormous. For listeners, even just hearing the word cholangiocarcinoma, it is a mouthful. It's an intimidating word, and Dr. Smoot, it's really an intimidating. Cancer. Can you tell us more about it? It's a cancer that starts in the bile ducts, but the bile ducts run from inside the liver all the way down through the pancreas to the intestine, and so it can occur anywhere along that track. It has different treatment implications based on that. It is still considered a rare cancer, although the incidence is increasing both in the United States and across the world. It is difficult because it could be silent for a long period of time before we find it. And it can occur in areas of the liver that make it very hard to remove, even if it's not very big. So, those are some of the challenges that we have. Not the least also to mention that it doesn't really respond to most traditional treatments. We have some newer therapies, but even the response rates to those newer therapies is, is, is very low. Did I hear you say that incidences are increasing or it's, it's a cancer that is on the rise? Yeah, we understand it a little bit better, and there are some tumors that used to be called CUP, cancer of unknown primary, but cholangiocarcinomas are tumors that started in the liver, because most tumors when we see them in the liver actually have spread from somewhere else. So the assumption in the past was always this came from somewhere and we just couldn't find where it was coming from. But over time we've realized that most of these are actually Primary tumors that started in the liver, in the little bile tubes in the liver. So, that's part of it, and we're getting better classification of the tumors, but there is also an increasing incidence, and we don't know why. There's a few risk factors for this tumor, but the vast majority of patients don't have an identifiable risk factor. What symptoms do you see when they come to you, especially because it is at this late stage when it's usually discovered? Yeah, for most people, they've had some vague abdominal discomfort. That's not an uncommon finding. They might get checked up for that, but the real tip-off for most people is they become jaundiced. They have yellowing of the, the skin, they get dark urine, they get yellowing of the eyes as a sign of essentially the bile is getting backed up. It's not draining from the liver. That's the most common. Presenting symptom is that, and then we look into the cause and and find the tumor often. You've invited someone very special to be part of our conversation today, someone who has an incredible story of survivorship over this type of cancer, and I'd be honored if you could introduce Melinda to us. Yeah, we'd be very happy to. So Melinda Bikini is the chief patient officer, I think I'm getting that right, for the cholangiocarcinoma Foundation. It was started actually, the founder's brother passed away of cholangiocarcinoma. They've really done an amazing job of informing people about this. Providing support to families, caregivers, and we have a very unique conference every year. It's one of the few conferences I've ever been to where the scientists and doctors come and they're there with the patients, and there's integrated sessions and everybody's kind of there pushing for the next treatments, the next hope for the patients. So, that's, that's Melinda. Well, Melinda, if you're going to be a poster child for a type of cancer, this is exactly where you want to be sitting in the seat talking to us today. Yes, exactly. I am so grateful for the research that has got me here today. I was reading about your story. I did look up an article you're featured in The New York Times from more than a decade ago, and reading about your story, you're a mother of 6, you're working as an EMT paramedic, and you found yourself in this world going from paramedic to patient, and I'm just wondering if you could bring us back to your journey and when did your symptoms appear and how, how did you receive this diagnosis? Mine presented with a lot of right shoulder pain. And some upper epigastric pain, and just a lot of fatigue. But as I said, I was a paramedic, and I carried a pack and a monitor on my shoulder, and I thought that's what it was hurting from, and I worked 24 hour shifts as a paramedic, so I thought I should be tired, and then we didn't always eat at good times of the day, and I just thought it was just normal indigestion. But I happened to be at a conference one time, a critical care nursing course, and I really had a sudden onset of a really extreme pain in my upper epigastric area, and all the doctors and nurses there said, oh, you probably have gallstones. My mom had them and my sister had them, and I met the criteria for, for gallstones. So fortunately, my primary care doc sent me right in for an ultrasound, and they found a large mass on my liver, a 13 by 9 centimeter mass, and I was originally diagnosed with cancer of unknown primary until I got my confirmation of cholangiocarcinoma. Smoot says there are 3 different types of cholangiocarcinoma defined by anatomy. They are intrahepetic, distal, and parahilar. Jaundice can be a common symptom, but not always. So after you discover one of these 3 types of cholangiocarcinoma, what typically at this point now are a patient's options so we can understand where we're headed in this conversation today. It really breaks down to Where is the cancer that we can see? The problem for most patients with cancer is, it is already likely micrometastatic for most types of cancer by the time we meet them. So even though we can't see it, it is likely elsewhere, but when we make treatment decisions, it really says on the scans, do we see it anywhere else? Has it already obviously metastasized and is growing anywhere else? If it's not, and you have localized disease, then we hope to be able to do an operation, because unfortunately, this is still one of the few cancers that the only chance for cure is an operation. There are other treatments like chemotherapy, immunotherapy, targeted therapy, and radiation. But those are what we call palliative types of treatments. They're meant to try to hold the tumor at bay for as long as possible. When we talk about surgeries, there's resection or the type of surgery we do where we take out part of the liver, maybe part or all of the bile duct and rebuild it. And then there's also liver transplantation. This is one of the cancers that you can do transplantation for certain types. We can do it for the perihilar and for some intrapatics. But the criteria are very strict for that. One of the things that we talked to about people is this is a rare enough cancer that there are certain things that people need to know. You can't biopsy one of these with a needle if you're going to be a transplant candidate. So, unfortunately, we do occasionally see patients who Their home providers are doing with all best intent, trying to get a diagnosis, but they've removed that treatment option because they jumped to something, you know, from a diagnostic standpoint that removes that possibility. So, it is a complex enough situation and certainly with a rare tumor, you need to be at a place like this that has, you know, a very significant multidisciplinary approaches. Certainly we see a lot of patients here at Mayo Clinic. We see about 1500 patients with cholangiocarcinoma, as rare as that is, at one of our three main sites each year. 16 years ago, there was only one option to treat cholangiocarcinoma, which was palliative care treatment. Coming from Montana, Melinda went to Mayo Clinic for a second opinion. She had surgery to remove 2/3 of her liver. The cancer still spread. This time to her lungs. And a year and a half into her diagnosis, Melinda was out of options until she heard about a new clinical trial at the National Cancer Institute. At the National Cancer Institute and was able to enroll in that trial. And I was the first person to have a response with adoptive cell therapy using till tumor infiltrating lymphocytes. Still in clinical trial and still being tested, and they're still working to find a way to make it work for more people, but very grateful that I happened to stumble upon that clinical trial and was able to make those phone calls to get out there and take a chance on it. I remember when I read it, I looked at my husband and I said, I think we should try this, you know, it has the initial chemotherapy for a week to wipe out your immune system, and I knew I could get through anything for a week. And then it was your immune system, you know, hopefully finding and attacking the cancer, and I'm just so glad we did, and, and that it got me to where I am today. Oh, that's amazing. Thank you for sharing that. Melinda was lucky enough to find the only experimental therapy available at that time, but Doctor Smoot has been working with his team at Mayo Clinic's lab to find that next therapy. And to his surprise, the next advancement in treating cholangiocarcinoma was under their nose all along, as close as Mayo Clinic's cafeteria. One of my collaborators, an investigator down in Mayo Clinic, Jacksonville, Dr. Patel, had been playing around with this platform for a long period of time. They literally go down to the cafeteria and grab some. Some skim milk that they buy out of the cafeteria, you spin these little tiny particles out of the, out of the milk after you do a few other things. It is interesting because there is probably something to the, the actual milk itself. It does seem to release the particles more efficiently and probably in a more active way that that that gene therapy in a way that is more efficient even. And the lipid, the synthetic lipid nanoparticles. The aptamer is really part of the, the magic of it because we needed to be able to selectively deliver this to the cancer cells. Aptamers are short synthetic, single stranded DNA or RNA molecules that fold into unique 3D shapes to bind specific targets like proteins, cells, or toxins with high affinity. Often called chemical antibodies, they act as highly specific molecular keys. We started with 600 trillion combinations of these DNA aptamers. You can think about them like a key, looking for a lock. 600 trillion is a number that humans cannot comprehend, but it represents less than 0.000% of the combinations that could occur. But we start with 600 trillion of them and essentially just pass them over the cancer cells and say what sticks. And then we pass them over normal and say what sticks, and so we go back and forth and back and forth. We want things that stick to the cancer cells and don't stick to normal, and we do that. Several times and essentially we got down to 10 candidates and we took our best candidate, and we can hook it onto this milk particle and we can load what's called small interfering RNAs, which is the gene therapy into, into that milk particle, and we prove it in cancer cells, and then we, we have some models where we have cancer growing in, in animal models and we could deliver it and, and show that we could, we could treat the cancer that way, so. We're now starting the conversations with the FDA about next steps because people have not made drugs out of milk before, but as I, as I tell people as a surgeon, I put animal products into people all the time. There's pig valves, and there's various meshes, and there's things that are derived from animals. There's a process to do it, and we're, we're starting those conversations to do it because it does seem to be working and And, and the amazing thing is now we have a platform, so we're thinking about new and even more active targets that we can put into, you know, to knock out even more important genes in these, in these cancers. So you're talking about how expensive those synthetics are, and then here's the milk from the cafeteria in the hospital. What do you make of that? You know, what, what kind of potential does that hold, milk being widely available for other treatments? Yeah, it's, it's, it's quite interesting as a platform, right? And we, and so my lab works on this cancer. We also work on liver regeneration, where we're trying to help the liver grow and it goes through either stress or injury or an operation. And we're thinking about applications that way where we try to use this platform to deliver things. And so I think there's, there's likely many more uses for it, and those are the types of exciting things that we're diving into right now. It's just, as Melinda will tell you what she's been through, you know, that's several years ago, and those trials are still ongoing even. And so these processes always are necessarily long. We have to, there's a lot of due diligence that goes along with trying to sort these things out, but they do take a lot of, a lot of time and effort. Funding is a, is an issue as well. Melinda, I'd love just to give you a chance to react. I'm sure you're aware of this treatment, but hearing Doctor Smoot tell the story about how this this discovery, what do you think, milk derived nanoparticles? I think it sounds amazing. I've been a patient advocate with the male spores, so I've got to watch this concept grow, and one of the most exciting things I get to do is, like you said, go to these conferences and And go to the posters, super excited. I just wish it moved faster and that we could find a way to make it faster so we could get it to the patients sooner. Because as you said, the, the clinical trial you underwent is still in approvals. It is, it's still in clinical trial. I mean, there's one FDA approval for for melanoma, but not for solid epithelial cancers. I'd, I'd love to see that move faster too, but everything takes time, science takes time, and that's the hardest thing as a patient is you just want it to go faster because you want something to happen personally for you so that you can access the treatment and the opportunities. Yeah, because as you know, as a patient advocate, not everybody has the time on their side or the access. Doctor Smith, I wonder if you could just help us understand it a little bit more. I think I have a good grasp, but if you could just help break it down, I'm understanding the milk as sort of this delivery vehicle, like a milk delivery. There's no lactose in it, but there are some proteins and things like that, which may be part of the magic of, of how it's delivering things in a, in a functional. way. So, we have that, quite honestly, we're working on synthetic lipid nanoparticles too, and we have some very exciting leads there on new formulations that may be beneficial because synthetics are easier to manufacture now, and there's a more straightforward regulatory framework around them. So, we're kind of hitting on all cylinders here, and we have a lot of, you know, irons in the fire trying to, to move things forward as fast as we can. What does that mean? You said there was an FDA impact meeting. So an interact, so an FDA interact meeting, that's the first stage to try to get a drug essentially brought forward. So, that's a stage where you can basically say, here's what we have, here's a discovery, here's what we think, and you're allowed to ask them questions. How would we need to manufacture this? What would you want to see at the next stage for approval? So, it gives you a framework and guidance on, is this a concept that They see could have potential. What are the steps we're gonna need to take to get what's called an investigational new drug designation, an IND, which allows you to do the clinical trial. So, we did the interact meeting. Now there's something called a pre-IND meeting. So we're setting up for that. Right now, you're testing this in tumor models in the lab, but not in the, in the person. You have to have that IND. You have to basically FDA pre-approval. It's not an approval for the medication, but it's approval to use it as an experimental drug. So you have to have that before you could do a clinical trial. And how long could it take until you get to patient one? Yeah, the problem in this day and age, the likelihood is probably somewhere in the 3 to 5 year range. So that's still Melinda, you know, too long in your eyes or anyone who's facing this journey, way too long. And that's, you know, some of the things that we think about, and that's why there's been a lot of interest more recently in things like repurposing FDA approved drugs, right? So if you can Find a drug that's already approved for another indication. Can you use it for a cancer like this? There's lots of efforts along those lines. This type of approach has a lot of potential, but it just has a lot of, a lot of steps to try to get to where we want to be with it. Melinda, you've taken your story to the White House. We're talking about the FDA impact meeting as a patient advocate. You know, those two things can be true. There can be so much promise in something like this new treatment with milk derived nanoparticles, but also so much frustration that it could take years to even get to, you know, the point where a patient tests this. So, so what, what do you wrestle with and how do you advocate for patients? Yeah, well, fortunately we get the opportunity to advocate with FDA quite often and, you know, help represent researchers like Doctor Smoot and And back them up with patient approval or, you know, patient sign-on, patient feedback, patient comments, you know, letting them know that the need is there. There are some accelerated pathways through the FDA that sometimes are helpful for rare cancers like cholangiocarcinoma. I still think there's a lot of red tape that you still have to, have to jump through, but there are some pathways that can accelerate that process. But we do whatever we can when we can to lend our voice to try to speed up the The process, make it as safe for patients as possible, and, you know, when it's first in human, I think that's when it, it takes the longest to to get it going and, and then after that, it maybe goes a little faster, I don't know. At least it feels like it only because I think then, you know, patients have access to try the new treatment. You're a testament to this, and I've witnessed this myself in in stories that I've reported on through my career, that patients like you do hold the power to to move the needle in medicine to support Mayo Clinic and Doctor Smoot's research. Patients do have a voice in this. Yeah, I didn't know that I believed that until after my diagnosis. I, you know, I, I wasn't sure about it, but I remember when my insurance wouldn't cover that standard of care cost for me to participate in a clinical trial. When I was first diagnosed, I went to the capital in Montana with some other patients, and we told our story about getting health insurance to cover those costs, and there was a law passed, and that was the first time I realized if you share your story, you can make a difference. And now I make sure to tell patients all the time to. Reach out to their legislators, let them know about cholangiocarcinoma, just to bring the awareness of the name because most people have never heard of it before when they're diagnosed. I remember going, cholangio what? I never heard of it before, and, you know, I had no idea what it was. And that is true for most patients. So you definitely have a voice and many people want to use it. You know, use this experience for a greater purpose. And I know when I entered into the trial, I really didn't think it was gonna help me at the time, and, you know, I was pretty advanced, but I wanted to be able to participate to help those who came after me, and I think many patients feel that way. They want to help advance the science as quickly as possible. It would be great if they could personally benefit, but I also think that the other motive is to help those that come after us. Doctor Samoot, I asked Melinda to reflect. Done this from the patient side, but I'm just curious from, from your perspective, how important are patients to your process in moving this research forward as well. It's why we do what we do, right? It is devastating for us as healthcare providers to try so hard for patients and to go through very risky operations with people and to get people through it and then find out that the cancer has come back or be in the situation where we can't even offer an operation and, and, and unfortunately, we see this in You know, it happens in elderly people, but it also happens in very young people, and Melinda's case, young people with families, it's, it's devastating. So, stories like Melinda's are why we do what we do, because you can see that it's possible, and the fact that it worked for her means that that there is a base truth. It is possible, we just don't know the exact combination yet for everybody to get there, but it is totally possible. So, on the research side of things, we can't do what we do without patients because I don't know what that tumor actually is like or how it behaves if I don't have access to it, and patients are graciously donate their, their tissue, their time, they enter the clinical trials, and unfortunately, we know that most clinical trials are gonna fail. And phase one trials, while they're very exciting because they're experimental, are really designed to say, what is the maximum dose you can give to a human being without causing such severe side effects that you have to stop. There's a lot of doctors that have not heard of this. So if they've heard of it, they, they've never treated a patient with it. So, one of the things that we do talk about patients in this is that you need to get a second opinion. You need to be seen at the center because even patients that may be treatable, sometimes, unfortunately, are told, you know, this is, this is not treatable. There's not, there's not things that, that can be done. Do either of you have any numbers how rare this cancer is? The thing that we often will talk about is it depends on exactly how you put it together, what the buckets are that you put it together, but, you know, it's somewhere probably in the range of 6000 to 10,000 cases across the United States per year. But we just saw at the last meeting, in fact, at the last planarcarcinoma Foundation meeting, is that it may actually be up to twice that. And I think if I remember the numbers correctly that were presented, I think it was up to around 20,000 per, per year, which is actually Quite a bit more than we had thought. Still a rare cancer, but we definitely think the numbers are higher than what we've seen. That's because you said it's increasing, but maybe it's, it's being diagnosed correctly more now. I think all those factors go into it. I think the right diagnostic codes, better, better diagnosis, and Doctor Smith had mentioned that cancer of unknown primary. I want to say the number was like 20% of those end up being cholangiocarcinoma. All of that, I think is being researched and and just looking at the, the different diagnostic codes between the extrahepatic and intrahepatic, and now all the numbers are coming together and we're finding that it's a lot more than what we, we had thought. You are, are proof of how life-changing a clinical trial can be, and you, you really sought that out, but I'm sure it can be really overwhelming for people to figure out, and then on top of that, you're navigating a diagnosis, and then you're supposed to try to find the right treatment. So, so where does someone with this diagnosis begin? Yeah, searching for clinical trials is not the easiest thing in the world to do, that's for sure. Most people don't even know where to go. My team and I at the cholangiocarcinoma Foundation, we spend the majority of our day helping patients navigate clinical trials and finding different options, you know, we want to find trials that are Close to where they live, so they don't have to travel. Unfortunately, most patients do have to travel to access trials, you know, like at Mayo or MD Anderson or wherever they go to find a trial, but it is difficult. I know that I can go on clinicaltrials.gov and I will search in probably 3 or 4 different ways using different key terms of cholangiocarcinoma, bile duct cancer, biliary tract cancer, or searching a specific mutation under solid tumors, just so you don't miss any options or opportunities, which then you could get a whole list of 100 different options, which is Again, overwhelming. And I think it's hard for the doctors too, right? It's hard for them to know every single clinical trial that's available. They're very aware of what's going on at their institution, but there's so many things going on at other institutions, it's just hard to know and, and take that time to find it. So, what we do at the foundation is, we help them search, we try to get them a, a great list that they can take into their provider and ask questions and get information. And then we also do educational webinars about clinical trials. So when Doctor Smoot's trial is ready to go and they're ready to recruit patients, I would invite him on to talk about the trials so patients and caregivers can hear about it, and then they would have the information that they need to access it. In my perfect world, yeah, that would be something that would be done right there in the doctor's office so the patients didn't have to worry about it, but unfortunately, it does take time. Again, I think that's where AI can be very handy and helpful in finding those clinical trial searches. I've seen a lot of different clinical trial finders, companies that are popping up now using AI to search based on, you know, maybe the medical information that a patient would input into those and go to get a better curated list than they would doing it on their own. So, it's getting better, but it's still, it's still overwhelming. It used to be we didn't have any options, and now there's more options, and now it's like, which one do you choose without being disqualified for maybe 3 more down the road. And so it's just, it's, it's a lot of juggling, not an easy process, but there are people there to help patients find. Opportunities and trials. If people need assistance in that process or a navigator to contact your foundation, could you let them know where to find your foundation? Absolutely, yes, you can find us at cholangiocarcinoma.org or Cure CCA.org. There's an advocacy team who, patient advocates who will work one on one with the patients and the caregivers to help them search for clinical trials, but they also, we also provide so many resources, support resources, virtual support groups, mentorship programs. We match them with one on one mentors, a lot of educational resources, we help with finding second opinions in different areas because it is important to see an expert in this disease area so that you do have access to those clinical trials and make sure they have their biomarker testing done. Those are the things that we really focus on at the foundation. If we're having another conversation in a decade, and everything went just as you had hoped, where could we possibly be with this treatment? In my perfect world, what I, what I would want if we had the ability to kind of move things at a safe but fast pace, it would be truly personalized care. There's a couple of things. One, the aptamer may actually be different for individual tumors. And You can imagine a situation where I'm going to the operating room that day with a patient. So 2 hours beforehand, they show up and we give them a little injection, and it's got maybe 100 different possible aptamers in there. And then I take their tumor out, and we take it and we sequence it, and we say, which one of, which one of the ones we put in stuck to this tumor? What's the best one for this patient? OK, so now we've got the best. Outside marker. And then we say, OK, what are the most active 2 or 3 pathways in this cancer right now? And that's what we load the gene therapies against. And then if we see it come back for patients, when it comes back, it often has changed. What was working, took care of those cells, they changed, then you look at it again, and most of the time for patients, there's not, there's not another option, right? Cause it's changed so much, but we just say, OK, now, what are the top 2 or 3 pathways that are in this tumor now as it is, and then we would reload and go. That would be my dream in terms of how we do this, and that's my hope of where we could get. So really personalized, precise to the type of tumor or cancer that person has. Yeah, and then theoretically, I mean, the aptamer is the is the magic in this, and we've found one in 600 trillion that worked well for cholangiocarcinoma, but there's no reason that you couldn't find one for lung cancer and one for melanoma and one for, you know, all of those things are possible, so. That's the other exciting thing, you know, I learned about this lipid nanoparticle because I was at a talk and I saw Doctor Patel give it and said, you know what, I think we could probably use that to do this, and that's the exciting thing is that now we've demonstrated you could do this for cholangiocarcinoma, and somebody's gonna look at that and say, you know what, I think that might work for colon cancer or for lung cancer, and they may, they may try it as well. I know that your research probably took some time. Was there this wild moment where you figured out that this was working and it was milk? Yeah, so we have two fully published papers now, and the first paper was a little bit different aptamer, and we found new aptamers that are working even better, but with the first paper, I saw the first set of animal experiments. I saw we saw tumor treatment effects and I didn't quite know what to make of it. In fact, I had a second team member repeat the experiments because it was just, I was, I was so unsure of that. I've told Doctor Patel and others who have worked on this project, and it's always felt a little bit like it was too good to be true, and I'm just waiting for the shoe to drop, but every experiment we do, we can show that that that this really is a, is a, is a way that we can do it. Now, we need to optimize it. There's ways to try to make it better and more efficient and things like that, but It's been exhilarating to see it, and it just kind of gets inspiring for me as a as a researcher to see something like this work and then just know the possibilities. Your lab is also using AI systems to help accelerate this process. Could you expand on that? It allows us to move things that were taking months and quite frankly, even a year or two to do, we're now doing in a, in a weekend. My, my Memorial Day weekend was very busy with AI work on this cancer. So, that's also exhilarating because you can see the, the, the speed that you're, you're able to kind of move and, and find new answers and new things to try. And a lot of it is this, it's it's pointing to new potential targets, new avenues for research and trying to chase those down. Melinda, we're living in this world of, of many dimensions, right? There's AI and gene therapy and, and moving faster than we've ever dreamed of condensing information into a Memorial Day weekend, and then there's the Timeline that cancer has its own timeline, and there's the, the timeline of the government and, and approval. So how do you, how do you balance that in your patient advocacy where there's, you move at the speed of reality many times, but there's also so much promise. How are both true and how do you walk that line for yourself and other patients? Well, they're definitely both true, but I've seen the progress that's been made since my diagnosis of, like I said, one standard of care at the time. And now we have, I think, 8 specific FDA approvals for cholangiocarcinoma on different targeted therapies and a new standard of care. I see it going in the right direction. I would love to see it go faster. I would love to see a, a home run. Doctor Smith's excitement makes me excited. And as patients, we're so grateful for all the researchers who, who are working on this. We had just come back from Salt Lake City, our big annual conference for cholangiocarcinoma. And for patients and caregivers to be sitting in the same room with the research and doctors who are working on this is so hopeful to see a room full of people who are working on better treatment options, and hopefully, ultimately a cure for us somewhere down the road. I hope AI makes it faster. I would, I would love, you know, to use that for, for good, and, you know, and, and I think this is good, and this, this is one way to, to benefit from it. So if we can find a way to make it faster, but it's both definitely true at the same time. And we just have to, I tell patients every day, take each treatment for as long as you can until the next best one is, is there, and they're coming, and, and I can see that with the clinical trials that are available now, and we at least have options now, you know, by having these clinical trials available, and, and just, we just need possibility. We don't need a guarantee, we just need to know that there are possibilities out there. And it's just amazing to know that you're living proof of this novel treatment 16 years later. Yes, I just wish they'd find a way to make it work for everyone, and I agree with Doctor Smoot. I think it's gonna be a personalized treatment for everyone cause we are all so uniquely different, even though we have the same cancer, it's all different and we all respond differently, and so I'm excited. I'm excited for the future, and I'm hoping that we can find a way to make it, make it come faster. You've been given this gift, and you're an incredible patient advocate, and I just wonder what life is like for you today. Oh my goodness, I, I, I again, just have to pinch myself almost every day. I'm so grateful. When I was first diagnosed, I was 41, and my youngest was 7, and my oldest was 20, and I just, the oldest was just going into boot camp for the navy, and I just, oh, I just wanted to give that youngest 15 more years and And I just remember hitting that 5 year mark and going, all right, God, can we renegotiate? I want to be a grandma, and I will be a grandma 6 times over in September. Number 6 is coming in September, and so I am so unbelievably blessed, and in that matter, and then also just the fact that every day I get to help patients and caregivers navigate this diagnosis. Never in a million years would I have pictured myself in this position. But to be able to tell them that I'm here 16 years later after a stage 4 cholangiocarcinoma diagnosis, again, gives them the hope, and I can audibly hear in their voices, you know, what, you made it, you, you know, and again, I don't want to give them false hope. I, you know, emphasize that this is a very serious diagnosis, but that possibility, because there's absolutely nothing special about me, and if I can be here 16 years later, there's a possibility for someone else too, and that's all they need. And so that has been my gift. I get way more, I think, out of it than I give, but it's, it's been a blessing to be able to use this for good. A mother of 6, a grandmother of 6, that's incredible. Well, Tomorrow's Cure is a podcast based on hope and the promise of the future in medicine, so I would love to ask each of you, you know, landing on hope, what hope would you give patients out there that have cholangiocarcinoma at this juncture? Yeah, I mean, every day I, I just remind them that the, the research is being done. There's so much more research being done now than ever before. There's more clinical trials to choose from. If I were to get on clinicaltrials.gov, in fact, I did today, and there's 72 trials for cholangiocarcinoma or biliary tract cancer that that pops up, which is amazing, and it's, you know, there's not always going to be an answer for everyone. But the hope is that is that there are more options than ever before. We're seeing more and more long term survivors, you know, 5+ years, which is incredible. Yeah, there's, there's just more opportunity, and I just want to provide that hope to them, and then just Being grateful to the researchers who are doing this, because choosing to research cholangiocarcinoma is, is not easy. It's not one of those cancers that I don't think anyone just jumps into. I feel like once you're involved in this community though, you never want to get out cause it's a pretty special community. So, lots of hope in the research that's being done in this community. Is that true, Doctor Smoot? Once you're, once you're in the cholangiocarcinoma community, you're, you're in, you're in, and it's just 20 years now, Melinda, it was 20 years, right, this year, it's the 20 year anniversary, and I remember we were talking, there's a group of us, in fact, there's a group, several of us that that actually study this cancer here at Mayo, and we were all at the meeting and we were walking to dinner and we were talking about over time, and they were talking about the meeting used to happen in this tiny little classroom up at the university in Salt Lake City. And we were joking that at that point in time, if you studied cholangiocarcinoma, you were more rare than the tumor itself, you know, it, because just nobody, nobody actually was working on it. And now there are people at most major institutions. There's several 100 researchers from across the world that are working on this, and that would be my, and that would be the thing, and that's the thing I do tell patients, similar to what Melinda, I think, said is that our goal is for a cure. That's why we're going to do this operation. But even if we can't get to a cure because we can't for most patients, our second goal is to try to push this down the road as far as we can because there are new things coming so quickly. The pace now of biomedical research is absolutely breathtaking. I went through 23 major analyses in 3 hours on Monday, you know, over the holiday weekend, which is just impossible even a year ago. It's only gonna continue to get faster and that, and that's really the hope. What hope would you give patients? I wanted Melinda to be here because she is the hope, right? It is possible. There are cancers that we cure now, even in stage 4. There's certain types of rectal cancers that will respond so dramatically to immunotherapy, they're cured. We've seen patients with melanoma that have stage 4 disease. We see amazing things happen for patients all the time. We just don't know how to make it happen for all the patients all the time. But we will get there because it's possible we'll get there. Thank you both so much. This really Did offer a lot of hope and illuminated a path forward and excitement for the possible treatments of the future. So thank you both for lending your time and your, and your heart and hope today. Really, really appreciate it. Thank you. Thank you. Tomorrow's Cure is a production of Mayo Clinic with production help from the podglomerate. Be sure to follow Tomorrow's Cure wherever you get your podcasts. And if you liked today's episode, please like and subscribe. I'm Lindsay Sievert. Thank you so much for being with us.
