NSC Lung Cancer Side Effects as Decision Drivers - Mark Botros, Nancee Prosati, Dave Bjork

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[00:00:18]Hello friends, welcome to the research evangelist podcast educational series.

[00:00:22]Uh this podcast series uh in partnership with Longevity Foundation is supported by an unrestricted educational grant from Fiser Oncology. And this is a three-part series dedicated to shared or like to say informed decision-making in non-smmell cell lung cancer. And I'm your host Dave Bjork, a lung cancer survivor and patient advocate. And today we're continuing our series on shared informed uh decision-making in non-smmell cell lung cancer. And in this episode, we're talking about something that can dramatically shape the patient experience, but is often treated like a secondary conversation, and that is side effects. And for many patients, treatment decisions are not only about effectiveness, they're also about daily life. And so today we're exploring how side effects influence treatment decisions and why quality of life matters so much in shared decision-making and how patients and clinici clinicians can have honest conversations about treatment trade-offs. And joining me today, uh, I'm very excited, a pharmacist from Indiana University, Mark Batros, and a patient from Colorado living with non-smmell cell lung cancer, Nancy Pens, who has firsthand experience navigating uh, treatment related side effects. So, thank you very much both of you for being here today.

[00:01:38]>> Thank you for having us, Steve.

[00:01:39]>> Thanks for having us, Dave.

[00:01:41]>> Awesome. Well, I'd like to start by talking about why side effects are such an important part of shared decisionmaking and and Mark, maybe I'll start with you and and can you tell us like how should side effects be part of treatment conversations from the very beginning?

[00:01:56]>> Yeah, that's a that's a great question and it's something that we we uh look at differently in oncology is that side effects cannot be sort of like a disclaimer at the end of the conversation. They are part of the actual treatment decision. So all these side effects have to be weighed with uh equally to the effectiveness of the treatment. So uh you know we try to make sure that patients not only understand what the drug will uh how does it work or what it does you know towards uh the tumor and the cancer but it how it may affect your day-to-day life. So can patients still eat? Can they still work normally? Can they travel? Can they stay independent? Those things matter very much to everyone to to patients starting treatment. Uh I think patients really appreciate honesty early on and the details in terms of uh when when they're starting treatment. Um most people don't expect treatments to be easy. Um but they do want realistic expectations. Um so when we when when we involve side effects in the conversation from the very beginning, uh patients and their caregivers are more prepared. um and more engaged. They're ultimately more confident in the decisions that they make. And this really is in my opinion the the one of the core uh building stones of building an informed uh uh decision- making and informed and shared uh decision- making. Um so it really should be throughout not just at the beginning but really throughout the whole treatment. um we sometimes see some rare side effects that uh that show up and it's it's really important to go back to those and uh and uh discuss those throughout the treatment but it really starts at the beginning of treatment.

[00:03:44]>> Yeah. And and how do you help patients understand that balance uh between treatment effectiveness and quality of life?

[00:03:52]And that's a that's a great question because um you know it's the the side effects are rarely rarely you know sort of black and white.

[00:04:04]Sometimes uh a therapy may offer you know better cancer control but at the cost of significant fatigue, neuropathy, nausea, weight loss or weight gain or just frequent clinic visits. Um so the conversation really has to be what matters most to this to to the particular patient to the to the individual. Um some will say I want the most aggressive treatment possible.

[00:04:31]Others may want to um prioritize feeling well enough to spend time with family or um just out of the hospital really. Uh both are completely reasonable uh perspectives. So, it's always kind of an ongoing conversation. Uh, and similar to the to what we've talked about before, I mean, it's it's the it's not set in stone at the beginning of treatment. It can change throughout the treatment. And our job, my job is is really to translate the medical data into real life implications so that patients can uh make the the the the decisions that align with their goals and their priorities. And at our clinic, we spend a good amount of time evaluating those priorities uh which really helps shape our discussion uh uh throughout treatment.

[00:05:24]>> Yeah. And you know, I' I've I've been involved with a lot of uh reviewing of protocols and clinical trials and and talking about the the side effect tolerance, you know, is one of the things that's really important to me.

[00:05:40]And so Mark, why why is why is side effect tolerance so different from one patient to another?

[00:05:46]>> That's a great question. We asked ourselves that question most days. Um side effects are not experienced in vacuum. That's the that's the main thing here. The exact same toxicity uh can affect two patients in completely different ways. uh mild neuropathy may you know seem minor uh medically but for someone who works more with their hands or it can completely uh you know change their quality of life. Fatigue may be manageable for one patient but devastating for for another patient uh maybe who's caring for a spouse or still working uh full-time.

[00:06:26]There's also the psychological component that goes with this. Um, some patients are willing to tolerate uh most almost anything if there's a chance for more time. Um, and and and that's that's that's a perspective there. Others uh may place a um higher value on maintaining their current quality of life. And that's why truly personalized care is not just about biomarkers and genetics. Uh it's also about understanding the person sitting in front of you. From the clinical p pharmac pharmac pharmac pharmac pharmac pharmac pharmac pharmac pharmac pharmacist perspective as well. We look at some clinical factors that may influence how well a patient may uh tolerate certain treatment. We look at baseline organ function, kidney and liver function performance status. How how is the patient at baseline nutritional status? Uh maybe prior toxicities from uh from other treatments. uh existing side effects that are shared with the treatment. So existing neuropathy or or cardiac history and and potential drug interactions. A lot of times those are overlooked just because we're still learning about some of those drugs and um you know drug interactions can increase or decrease the levels of the drugs in the body and and and that can affect uh tolerability and side effects.

[00:07:52]Um, so two patients may have the same exact regimen, but their ability to safely tolerate it can be very different based on multiple underlying factors.

[00:08:07]>> Yeah. And and I love that in our in the first episode in this series, we I spoke with Dr. Eric Singh and he talked about the partnership between the patient and the clinicians. And I think that's really important. So, I'd love to bring our patient uh guest uh into this conversation. So, uh Nancy, um how much does side effects influence your treatment decisions?

[00:08:31]>> You know, that is such an interesting question because I am in a little bit of a unique situation in that when I was very first diagnosed, there was only one drug um that was available for my specific disease and there was only one dosage because it was one pill. So there weren't really options as far as would I have picked a different therapy, would I have done something different based on the side effects. However, going forward that was different. You know, I had other options um when I had progression.

[00:09:00]Um but I would say at that point when I did progress, the side effects had a huge impact on my decisions. You know, for me at least as of now, it's easy for me to say this, my focus is on quality of life more than anything. Um, I think there's there and I think everybody, as Mark said, is different in, you know, what their preferences are about extending their life as long as they can versus quality of life. And sometimes you don't have to always trade that off.

[00:09:27]I I was talking recently actually to Dr. Kamage who we discussed earlier and he was saying, you know, really focus as much as you can with your practitioner, your oncologist on having the very best quality of life that you you can ask for that. you can ask for the very best quality of life possible and then you have to figure out how that looks and if that's possible and and you know what the possibilities are with the medications and therapies available to you. So I've been pretty good with the side effects but what I do know um to Mark's point is every patient is different. I didn't know that before I was a cancer patient of all of us taking the same medication.

[00:10:04]It's wildly different to the point of being completely debilitating when someone is bedridden with the same dose of medication that I was still walking long distances or other people were still running and doing, you know, working full-time. And I I don't think you know that until you make the choice and and even even with the things the other associated things like your other health issues um and nutrition and etc. It's just a weird thing how body chemistry is. And and what I would say is it's really important to be really honest with your oncologist about those things. Like I wasn't I was very much like I'm fine. I don't want to complain.

[00:10:41]And that wasn't always to my own to my own best um and I've learned since then.

[00:10:47]But you know I think you have to really have those conversations and and talk about options um to improve the side effects.

[00:10:54]>> Yeah. It's interesting. I think I think we you know we talk about you know clinicians being honest with patients but it's also birectional. It's patients being honest with their clinicians too right about what they're >> exper Yeah. We my husband would be like you need to tell him your legs hurt you know and and I don't think I'm alone in that. I think the advice is, you know, let your care, if you have a care partner and you feel comfortable with it, let them contribute to the conversation too because they might see things like even cognitive effects. If some of the medications have, which I know that they do, have cognitive side effects, they may even observe something you don't observe. And and they can contribute and and really try to focus on helping you continuously improve both the the effectiveness of the medication and the longevity of your life, but also your quality of life.

[00:11:47]So Nancy, were were there side effects that in your experience that became more impactful to your daily life than you expected?

[00:11:59]>> Yeah. You know, when I started taking the the medication that I'm on now, which is lectin, it was relatively new.

[00:12:06]It wasn't even available when I was first diagnosed. And so all the current side effects weren't listed the way that they are now. And so I didn't even expect some. Um, for me, I had really have had really terrible neuropathy and that was surprising because I thought, well, people get that with chemotherapy, IV chemo, they get it when you have diabetes and other other things. I didn't expect it to be as bad as it as it has been for me. Um, and yeah. Yeah.

[00:12:32]So, that was really mine. I know other people who have had other fatigue, terrible fatigue. Um, but that one was surprising for me. It impacted me because I'm a really active person. and I like to walk and although that makes it feel better, it also makes it harder to get going, you know, and and so yeah, I do think, you know, that's a minor one compared to one that a lot of people have, but it was it became major for me.

[00:12:56]>> You touched on it, Nancy, uh earlier about the role of the caregiver and m I would just love to hear your perspective on on that. you know, for Nancy, for your caregivers, um, you know, what role did they play in helping you with some of these decisions that you made?

[00:13:17]>> Um, I my my husband has been with the primary I mean, I have adult sons who are awesome and I I honestly kind of try to shield I know they're adults, but I sort of shield them from most of this stuff. Um, but my husband has has been there and he has been really vocal like you got to say something or you got to talk to him um or or talk to the nurse.

[00:13:41]you know who has been really helpful to me and I don't know if every every office is the same but there's a f there is always a fellow at UC health where I go and they're typically you know obviously newer and younger and they seem very anxious to solve these problems and I've had the really great I mean my oncologist is amazing but the fellows have been so helpful at coming up with creative solutions um and talking about different things that you can do and and and Paul my husband was always there to say yeah let's do that.

[00:14:11]Let's try that. And he would encourage it when we got home, you know, make sure you try the things they suggested, acupuncture, you know, other things. Um, the other thing, and I think Mark, you were touching on it when you talked about fatigue, is I think people underestimate the mental toll that this can take, just, you know, whether people are prone or inclined toward depression or other mental, you know, just the the fatigue of dealing with all this. I think that's also where um your both your practitioner but also your care partner to your question day can really help and say hey I see that you don't seem like you're okay right now you know let's go for a walk or let's talk to the doctor about it and for me in the end we resulted in a lowering my dose um and that did help and I know that to Mark's earlier point about preferences about concern about you know how long will that effect impact how long the medication work, you know, I just sort of weighed that and and listened to the expert and I did lower it and it's been better, you know. So, I think those those are interesting and and my and Paul, my my care partner, was a huge help in that.

[00:15:21]>> Yeah. And you know, one of the things that I think about is um you know, you you've talked about it, Nancy, about how you know we say, well, how are you feeling? I'm fine. I'm fine.

[00:15:33]Right? You don't want to bother people.

[00:15:35]You don't want to Right.

[00:15:36]>> So, >> Oh, yeah. I'm the worst at that.

[00:15:39]>> Yeah, I am too. But >> I could see that.

[00:15:41]>> So, did did you personally ever hesitate to res uh report side effects because you might be worried their treatment might change or stop or and maybe not just for you in particular, but other patients I think if you can talk >> I think that happens all the time. Yeah.

[00:15:58]>> All the time. I think they're worried especially depending where you are on the therapy path. like if there's not another TKI to try, they're thinking, "Oh no, if I express too much discomfort or too many problems, they're going to take me off TKI altogether and and I'm going to progress or they're going to put me on IV chemo right away when I'm when I'm not ready or go from one TKI that has a certain kind of side effect profile to a different TKI which has a profile maybe you're more concerned about." So, I did not have that issue myself. Um, but that is really really well known and and I think a lot of people struggle with that and and instead of I think it's either have the conversation with the pharmacist or your own oncologist or go to a specialist in your own specific kind of cancer you know there are different specialists for each different kind of thoracic cancer to say what are my options and for me like I said dose reduction was an option um or go to see a paleotative doctor like I I sometimes I think people don't aren't aware of all the different things they can do before they have to, you know, stop using a specific medication.

[00:17:07]>> You know, that's a really that's such an important such an important point, Nancy, because I've recently, you know, come to understand more about like dose reduction and and how it can be done and and not affect the efficacy of the medicine. And so, Mike, I'm going to bring you into this, Mark, because I think a major part of decision-m uh is helping patients feel empowered to speak up, you know, so h how how can patients feel more comfortable asking for supportive care or dose adjustments or treatment changes when necessary?

[00:17:41]>> Yeah, that's a great question. Um I mean a big part of it is creating that environment that space where patients can share this and understand that reporting side effects is not equivalent to failing treatment. Um I often don't like and this is a scientific term it's dose reduction. I like to use the word dose adjustment. I feel like that term >> that's a good point >> can can can really help kind of you know convey the picture that just because we are lowering the dose doesn't mean that we failed treatment and that the medication is no longer working.

[00:18:17]Um in in fact it's it's key for effective treatment to stay on treatment for for a longer period of time. So this this allows for that. Uh one thing I I try to do is is is ask you know uh very practical questions. uh the general ones, you know, I like to ask instead of just how are you feeling? Uh are you are you still able to um you know, perform your daily functions and all of this stuff. So that's that's uh that's key. But it's um sometimes we even you know um bring in some of the data that um that uh that there's there's evidence for for the efficacy of lower lower doses and that that these doses are FDA approved um uh you know for for a reason because they were studied they showed effectiveness and and and that's key. So it I think there are some strategies here but you know often creating that space in the beginning to allow for um for patients to share these uh can help uh during treatment later in treatment as well.

[00:19:27]>> Yeah. And Mark I I was so happy to have you come on the show with me because I have a fondness for pharmacists. My father-in-law was a pharmacist and the active role that you play in, you know, communicating with patients is really really unique and I didn't ever understand the the role that that pharmacists can play. So when a when a patient asks like how is this treatment going to affect my day-to-day life like how do you guide that conversation?

[00:20:00]And and that's that's a very you know common question. we we really have to start with what is day-to-day life uh for you um you know what is because we have to have some realistic expectations going into treatment so I I try to let that guide our discussion so um you know it's what are your priorities and uh is it important to is exercise a big part of your of your life is travel care for family members I think those things are important to kind of guide our discussion. Um and then we talk about some of the side effects and how how it can impact that. Um you know what if it's a lot of times fatigue is a big part of it. So we talk about which you know which day um which time in the cycle if it's IV you know infusion is that uh it's going to be uh the worst fatigue. Uh sometimes into treatment where where is the fatigue going to be the worst? what time and a lot of times it's it's it varies from one patient to the next. Um but um sens essentially there's a sort of a general trend there too. Um but u it's important to prioritize those based on the patients day-to-day life and priorities. Um and and a lot of patients continue normal activities during treatment uh uh and and some need some adjustments. So that's completely uh fine to bring that up and to explain that in the beginning.

[00:21:31]Um and uh it just depends on the regimen. It depends on baseline health.

[00:21:36]Uh so my my my role as a pharmacist is to sort of ask some of those uh go through these logistics, how it can impact quality of life, um you know, supportive medications, managing nausea, managing fatigue proactively, uh infection precautions, the medication schedules, uh you know, all all these things. and then and and that sort of adds to the continuity of shared decision making because this will probably change throughout treatment. Um maybe later in treatment priorities are different. Your day-to-day life is different. So we might have to readjust and look and and we we have a lot of treatment options nowadays. Uh we're we're so blessed to have those. uh so we we have room to consider other treatments but it but the impact on daily life is a essential component of uh shared decision-m uh throughout >> well well I think the common the theme I'm hearing you know from both of you is really important and a lot of the oncologists I know a lot of oncologists because I've had many on my podcast talk about seeing the whole patient and not just the time that they're with you as a clinician, but they have lives, you know, that they live. And so, making sure that you understand and and are empathetic to each patient's uh life and and what's important to them, I think, is really important. So, um Nancy, you know, was there anything that helped you feel comfortable speaking openly about uh with your care team about side effects?

[00:23:16]You know, I I think for me it was my specific oncologist because he was very warm, asked a lot of questions, had a lot of humor, which is sort of how I like to communicate.

[00:23:31]So I, you know, that's not fair for me to say because not everybody has that, right? Not everybody has that same experience or that same opportunity. So I think if you don't have that, you know, maybe you can start to be more comfortable if you include your partner or if you write a list before you go in so you're not, you know, going in and trying to just think off the top of your head or frankly if you go get a second opinion or go to a paleotative care specialist. I think there are just a lot of different options um to start to be more comfortable, excuse me, if your specific oncologist doesn't feel like that place for you. And and that isn't even a judgment on the oncologist.

[00:24:08]Everybody's different and everybody's different about who they're comfortable with, you know, as well. But for me, I think it was my specific experience. I was very lucky.

[00:24:16]>> Yeah. Yeah. And and I love the fact that you and I know your oncologist actually um Dr. Camage he's he's brilliant and um I know that he has that approach of seeing the entire patient and and not just the time that he's you know that you're in in a face to face with him. Uh, was there was there anything that you and I know you had a good you had a good uh relationship with your oncologist, but what looking back were there was there anything that you wish clinicians had asked you earlier about side effects or daily life?

[00:24:57]Yeah, I mean I think it would have been nice and I think that they do that more now just in general at to what Mark said is ask about what are your priorities like what is important to you to still be able to do and um I think where they didn't used to ask that when I first switched medications was they weren't as aware of all disappeared I have sun on my face I'm hoping you could fix some of the stuff they um I think that what happened is they've become more aware of the side effects So they have started to be better able to address your day-to-day life. So I do wish that people in general, not my oncologist, but practitioners in general did what Mark said and say, you know what, where are your priorities? Is it to be able to play with your children? Is it to be able to continue your job? And I think those are different because the side effects, you know, if you have a sit at your desk jaw that some side effects won't impact you as much as if you're a teacher at a preschool, you know, and so um I think I I do think that would have helped me and others. Not really it wouldn't have necessarily changed my path, but I think it would have changed the way I thought about side effects and and managing them and and the conversation. I also think and I'd be interested in Marx's point of view. I I think there's a cumulative effects of these TKIs at least over time. Like I I don't know if we knew that because they were brand new when I started, but now I'm like, okay, several years later, you're seeing other things. And of course, some are going to be related to age and having cancer for a while, but there I think more of them are related to being on that type of medication for years, you know, which which I don't, you know, I think will be an interesting study somewhere down the line. like what are the effects that now that we live so much longer than we used to, what are these medications doing to our quality of life over time?

[00:26:44]>> Yeah, that's a really good point. Mark, you want to chime in on that?

[00:26:48]>> Yeah, that's that that is as we learn more and as there are more studies out there, we're learning that that is exactly true. I mean, there's a cumulative effect of the same drug.

[00:26:58]there might be several you know several drugs from the same class where we see the side effect is the risk of a certain side effect is higher because that risk was also from the uh first line of treatment. So um th those are that that is exactly uh what we're learning uh with different uh uh studies and publications that are coming out showing us that let's say the risk of pneumonitis or like interstitial lung disease that that the risk is different if it's a drug in the first line versus the same drug maybe in the second line of treatment.

[00:27:35]>> Oh that's interesting. Knowing these is is is is key. And I think it it just it it gives the the it gives us uh you know it gives the patients a sense of control to know what to expect and what to look for and that's key during uh treatment and when in in cancer.

[00:27:58]>> Yeah. And so Nancy, you know, I think you and I are, you know, we're active patient advocates and I think it's not for everybody. Like a lot of patients, you know, don't take an active role that that maybe you and I would take. So >> yeah, >> I I'd love to ask you like what advice would you give to patients about advocating for themselves during treatment decisions?

[00:28:30]I think you have to really focus on the fact that although you have cancer, you are still yourself. You're still the same person you were before and you still have a life to live. And you really want to have the very best experience, whatever that looks like.

[00:28:46]And the only way truly the only way to get that is to advocate and and think about if you have a family or other people who are relying on you. you know, that I guess that's what I always think about is what my what my family would want me to do would be to make sure I have the best treatment so that I am available to them um and to do the things that I want to do. It's very different from us being patient advocates, I guess, out in the world trying to, you know, change the world, but I think you're trying to change your own little world by saying, you know, how can I join a support group? because I, you know, I belong to a Facebook support group which at the time seemed frankly kind of silly to me and it has been a wealth of information and kind people and you can ask questions and realize, oh, I'm not the only one with this question. 15 other people have it.

[00:29:32]They maybe have 15 different answers, but those answers can arm me with information to go back to my doctor.

[00:29:37]I've I haven't had to do that, but I've witnessed people going back to their oncologist with information from the support group and literally changing their treatment path um because perhaps it was community oncologists who didn't have the same experience or had never seen that side effect before. And so I think you know to to get as much knowledge as you can, you can be a great advocate, you can be a more confident advocate, I would say.

[00:30:01]Well, that's really I think that's really great advice. And I I think for people who might be shy about like, oh, I don't want to question the doctor because he knows best, right? That >> and Dr. Singi actually in our first episode talked about that paternalistic uh changing that paternalistic view, you know, of of just taking the, you know, recommendation of the doctor and and he knows best and she knows best and so I'll just do that. But and and that is important because you want to trust your clinicians, but the clinicians also have to understand that every patient is different, right? So, um >> you're the expert on yourself, right?

[00:30:45]They're an expert on science hopefully, you know, depending, but you're the expert on your own self. And I think that partnership is where you get the best result.

[00:30:55]>> And I love the I love that phrase partnership. So, I I think that's really important.

[00:31:00]And and and speaking of advocacy, Nancy, I'd love to ask you about, you know, when I first met you, I learned about a publication that you were involved with um with the Elk Positive uh organization, and I'd love to have you just give us a kind of a overview of like what that experience was like and and what it and what it what it how meaningful it is to patients. Yeah, I I'm on the board of Elk Positive um which is a nonprofit and as a result I interact a lot with pharmaceutical um patient advocates and we work with Fizer quite a bit and they were developing a paper which was uh meant to help people who are taking Laura Lat and they have a publication that could speak in sort of patient terms versus in medical terms. So in layman terms, so they went and they included a lot of different like amazing oncologists, worldren renowned thoracic oncologists and then little patients over here was me and and a couple of other patients. Um I am not a lural latinet patient which was actually part of the goal was the publication is written for someone who is newly prescribed Laura Latinib and what to expect and it was it had a lot of basis in the crown data and the information that came out a couple years ago. I think there's probably more to come this summer at ASCO. Um, but the information about what the side effects are. Um, and it has some really interesting graphs about what what side effects could come, what the timing for those is, um, what percentage of people have those side effects, what are the different treatments, when should you call, you know, when should you call a doctor or what are things you can do at home? And what they did with me is they just leveraged my non-scientific experience.

[00:32:44]has a lot of knowledge about lung cancer obviously, but um as an as a patient, they really were great about taking our input and our feedback into like, hey, this doesn't make sense or this would be easier to read and I was really proud of of what they've done. I think Fizer was amazing in being so patient forward. Um they're actually in, you know, really good about that, including patients in everything they do. And this the goal of this is to be you could take it as a patient to your doctor if your doctor didn't have it or hopefully you know oncologists will will get it and be able to have the conversations about all kinds of side effect management including dose adjustments um as Mark said which is a big one for Latin in particular. I assume you prescribe that frequently if you work in in thoracic oncology. So it was it was really a wonderful experience. I felt lucky to be included and um it was really kind of them to to to take our feedback I thought and I I was proud of the result.

[00:33:39]>> That's awesome. You know, one thing that I've learned from our discussion today, thank you both of you, is talking about dose adjustment instead of talking about dose reduction. I that's awesome. So, thank you for that.

[00:33:53]>> Thank you, Mark. I would not have said that and I like it.

[00:33:56]>> I think it's it's brilliant. And and by the way, what I liked about the publication, and I think the reason I wanted to have you talk about it, Nancy, was because maybe a lot of patients aren't finding that publication because it's kind of a scientific thing, but but what I liked about it was the customization of it. It was sort of like the personal personalized. It was like >> here's what you might expect in three months. Here's what you might expect in six months. Here might, you know, and so it was really personalized to the patient experience, I think, was really important. So that's what caught my that's kind of what caught my >> the same. I like that also. And they also did like it may start in three months and for most people it lasts 100 days a you know something like that. So you you were thinking, okay, am I in the norm on this and maybe this will be over in a 100 days, whatever this thing is, you know, or a lot of people who take that particular medication have really big issues with weight gain. And I think even just being prepared for that and understanding that can help people evaluate how they're going to address that before it happens, before they gain 30 pounds out of nowhere or something like that. And and it's interesting from a mental perspective. We did a focus group um and positive and talked to a lot of Lur Latina patients. The cognitive there were some cognitive things that people had issues with, but primarily it really was weight gain, which kind of to me goes back to mental state, like what things are making you just feel bad about yourself even. And so I felt like that paper helped people think those things through before they happened so you could try to mitigate the side effects.

[00:35:28]>> Yeah. And it's interesting you bring up that that particular side effect that sometimes I think there's a disconnect between you know the clinicians and patients on what's important and >> you know weight gain is something that might be extremely important. It would be to me >> I feel the exact same.

[00:35:48]>> Right. Right. Right. So so before we wrap up I'd love to um ask each of you one one final question. Um I'll start with you Mark. like what is one message that you hope patients remember when thinking about side effects and shared or informed decision-m >> um I would say learn about the side effects um do not hesitate to report them and um dose reduction is not treatment failure there are always options a lot of the side effects um that we uh talk out are generally treatable uh for the most part. So there's always something to be done, but um the conversation starts with with when we when we know about those. Um that's that's that's that's what I would say.

[00:36:39]>> Awesome. And Nancy >> would echo everything Mark said. Um just adding that, you know, be your own advocate. The treatment the side effects are not your destiny necessarily. Um, and you can you can try to treat them, but they can't help you if you don't tell if you don't tell people that you're having them and and and try new things.

[00:37:00]>> Oh, that's awesome. That's great advice.

[00:37:02]You know, I think today's conversation is a reminder the side effects are not just the clinical details, but they're live lived experiences that affect daily life and emotional well-being, independence, treatment decisions, and shared decision informed decision-m means, you know, making space for what we've talked about today, these honest conversations, not only about treatment effectiveness, but also what matters most to each individual person that's receiving the care. So, I am so grateful and honored to have you both on my show.

[00:37:36]And I want to thank you, Mark and Nancy, for sharing your perspective and your experiences. And uh thank our listeners for for joining us for this important discussion. And again, Mark and Nancy, thank you so much. I can't tell you how much I appreciate your perspective and being on the show today with me.

[00:37:54]>> Yeah. Thank you for having me.

[00:37:54]>> Thank you so much, Dave. Thank you for pleasure to meet you, Mark.

[00:37:57]>> A pleasure to meet you, too, Nancy. and thank you for creating this space where we can discuss these important points.

[00:38:01]>> Absolutely.

[00:38:01]>> Thank you.

[00:38:02]>> It's important.

[00:38:03]>> Awesome. Thank you.