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Episode 4: Clinical Trials: Myths, Facts, and What Patients Need to Know

Episode 4: Clinical Trials: Myths, Facts, and What Patients Need to Know image

Episode 4: Clinical Trials: Myths, Facts, and What Patients Need to Know


May 12, 2025 / 12:00PM EDT
Adult AML Chapter
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Episode Summary

This episode explores the world of clinical trials, focusing on their significance in the treatment of blood cancers. The discussion covers all things you need to know about clinical trials: the phases of clinical trials, patient safety, common myths and misconceptions, and the importance of informed consent. Logan Murray, PA, emphasizes the accessibility of clinical trials for patients and the need for self-advocacy throughout the process.

Full Transcript

Mary (00:01)
Hi everyone. Welcome to the fourth and final episode of the 2025 season of the Health Tree Podcast for AML, where we connect patients with AML to the research and information they need to know. If you've been with us the last few weeks, welcome back. If this is your first time joining us, there's some exciting episodes you can go watch from the last three weeks, and we are excited to have you here today and to join our AML podcast community. My name is Mary Arnett. I am your host and AML education manager here at the Health Tree Foundation.

The goal of this podcast is to make research and new information about your disease easy to understand and easily accessible. If you found yourself overwhelmed by clinicaltrial.gov or a medical abstract, that's what we are here to help change. The topic of today's podcast is clinical trials. Over the last three weeks, we've been talking a lot about different trials, how they address patient issues, and what they're doing to make the AML space better for patients like you. If your interest has been piqued and you're considering talking to your doctor about participating in a trial,

Today, we're gonna be going over myths, common patient questions, and the things you should know as you consider participating in some of this important AML research. We're gonna be joined in just a few minutes by Logan Murray, a physician assistant out of Tampa General Hospital in Florida, to go over all of these ideas with us. Stick around until the end of the episode when I'll be back to share my final thoughts on today's interview and this season as a whole, as well as some additional resources you can dive into related to today's topic if you wanna keep learning and maybe participate in a trial.

Now, without further ado, let's bring on Logan.

Mary (01:32)
Logan, thank you so much for joining us today. We're really excited to have you on to talk about clinical trials, some of the myths and facts surrounding them, and just in general, things patients need to know.

Logan Murray (01:43)
Yeah, I know. Thank you for having me. I'm very excited to be here and share some insights on a very widely misunderstood topic.

Mary (01:52)
So to get started, I want to go over in general what exactly is a clinical trial and why are they important when it comes to treatment of blood cancers.

Logan Murray (02:02)
Yeah, so clinical trials or studies that, you they can go by several different names. They're essentially studies and protocols that are designed in collaboration with investigators and, you know, pharmaceutical companies looking at a variety of things, whether that's new drugs that are being tested in humans for the first time or currently approved drugs.

that are being looked at in newer settings and newer diseases or combinations, all with several goals, but pointing towards better outcomes for patients. also understanding the safety of drugs and side effects of drugs, but they are incredibly important in blood cancers, just because it's a very high risk population and in

a lot of the diseases that I get to treat or focus on like acute myeloid leukemia or MDS, there is a, you know, not that sizable collection of drugs that we have. and it's growing, but we could certainly use more and outcomes in these populations are not the best compared to a lot of other cancers, you know, the five year overall survival for a lot of adults with AML.

Mary (02:58)
great.

Logan Murray (03:11)
is around 30 % and that's just not good enough. And the only way to make that better is by looking at newer options because what we have available is good for some patients, but for a large majority of them, we know it can get.

Mary (03:27)
I think there are a lot of things when it comes to clinical trials, a lot of wording that is not quite understood that can lead to lot of confusion or ambiguity when it comes to joining a clinical trial or trying to understand research that you're seeing about clinical trials. So one of those things I think is phases. So can you explain what are different phases of clinical trials and what does that mean for a patient who's looking at either joining a study or is trying to understand research coming out about a certain...

Logan Murray (03:58)
it all kind of starts in the preclinical phase, which is the phase that patients don't really need to worry about. But this is where drugs kind of get developed in a lab and they all kind of start with concepts that then scientists and chemists then come up with the drug themselves. And then clinicians, if they feel like a drug has a potential benefit in a certain patient population, you know, they can

kind of reach out and kind of stir the pot and try to come up with these protocols that then get to patients. you know, there are generally there are four phases past the preclinical phase, but phase four trials are really not high yield in terms of understanding what trials are exactly. But starting with phase one, these are

you know, smaller trials are generally shorter in length, but these are the first in human trials. So these are drugs coming from a pipeline and from a lab being tested in humans that have shown benefit in lab models and in animal models. But what separates phase one from phase two from phase three and phase four are simply, you know, the purpose of each trial. So the purpose of phase one is going to be understanding safety.

And then we can start understanding a little bit about efficacy, but primarily safety in phase one. So they start with dose finding where they give several doses of certain drugs to figure out what dose is best for patients, what's the most tolerated or well tolerated, and also what is the most efficacious has started to get honed in on. And then they...

start to expand from that dose, whatever is the safest. And that's where you kind of get into phase two, which are generally bigger trials in terms of volume of patients, several hundred most of the time. And they're a little bit longer. And they're still focusing on safety. And they're still looking at long-term side effects of these drugs. But we're starting to focus a little bit more on efficacy and how well the drugs actually work.

And that ties right into phase three. And these are kind of the bread and butter of leading to approvals. So this is where you really start testing the drugs and comparing them to what we call standard of care or what we have available for our patients. These are going to be longer trials and they're bigger, know, hundreds to thousands of patients. A lot of times these will be multi-site or multi-institution trials that are kind of happening at a variety of

places across the country. And yeah, this is how the drugs get FDA approved. And then just a little bit about phase four, these are post-approval. So drugs are already approved, but they're much larger, much longer, still primarily looking at safety and also efficacy, but over a very long timeframe.

Mary (06:48)
And just real quick for anyone who's not familiar with the word efficacy, can you explain what that means?

Logan Murray (06:53)
Yeah, efficacy or how efficacious a drug is, just how effective it is. It doesn't work. So when trials are looking at the efficacy, we're looking to see how often does it get somebody into a remission? What are the percentages of that? How long does somebody get on this drug before they relapse again? Those are kind of key endpoints that we would kind of define as efficacy.

Mary (07:17)
Thank you for explaining that.

Logan Murray (07:17)
So it's essentially just like, yeah, does it work?

Mary (07:21)
So you mentioned safety. So how do clinical trials ensure patient safety?

Logan Murray (07:27)
The short answer is a lot. So there are a lot of safeguards before a trial even gets kind of into phase one. It all kind of starts with the development of the protocol. This is going to go through several layers of review and there's something called the IRB that looks at all of these trials and first and foremost looks to make sure that they're ethical, that they're safe.

just in terms of concept and design. Like if somebody wants to develop a trial, we want to make sure that it's worth it for the patients. And that's going to go through several layers of medical review. And then once it gets approved, you know, then we get into preclinical testing. So it's going to go through like lab models and animal testing. And obviously, if there are red flags there, the drug's not going to move on to phase one.

And I think one of the most important parts of the whole trial process is the informed consent process. And this is a point and it's kind of an ongoing conversation throughout. I'm sure we'll touch on that later. But it's getting the patient to agree to it, to give us their consent to enroll on trial. But we only expect them to agree.

after we've given them every piece of information we can. And when we, how we do it at our institution, you know, we print out the protocol, we give the patient some high yield information and probably some, you know, extraneous information that doesn't really mean much to them. But we want to make sure that every I is dotted and every T is crossed before they sign their name and say, yes, I will go on trial. So that they know what they're getting themselves into. And then I think,

probably the most important part of safety is once a patient's on trial, how do we make sure that things are going smoothly, that we're not messing anything up for the patient? And there are a ton of checkpoints, whether it's labs, they do a lot of blood work on a lot of these trials, especially in the earlier phase. It's something called pharmacokinetics or PKs is like the jargon we like to use in trials. But these are labs that are making sure

and trying to better understand how somebody is processing a drug because we want to make sure someone's liver and their kidneys and all their organs are doing well with it. And those checkpoints and those plot points are going to be very frequent, especially early on. And then as we go and as we determine the safety, it kind of slows down a little bit. But there's pretty constant monitoring for a lot of these trials to make sure that we're not

missing anything.

Mary (10:06)
I want to go back to something you said at the beginning when you mentioned that clinical trials are often very misunderstood. And I want to kind of start dispelling or going over some of the maybe misconceptions or myths that are out about clinical trials. I think one of the most common ones and one that is really present in media pretty widespread is that clinical trials are for patients who have run out of options. I think that's what we see all the time in

movies, you they'll talk about someone getting a clinical trial and the patient is out of options and they're in a really bad spot. And that's kind of how we view clinical trials if you haven't ever been a part of one before. So are clinical trials just for those people who have run out of treatment options?

Logan Murray (10:50)
No, absolutely not. I think the last resort is probably one of the first things that patients say or their eyes light up when we even mention clinical trials. And we do that early and often, as you should. But it's because they often tie trials to being a last resort. So when we bring up trials, they say, no, is this all we got?

Mary (11:12)
Yeah.

Logan Murray (11:13)
So we do our best to dispel that. But the truth is trials are available pretty much at any point from diagnosis to remission and beyond. So, you know, each phase or each trial phase is going to have a different purpose as we kind of touched on and, you know, different.

Phase trials are going to better serve different patient populations. Earlier phase trials that are first in human, so drugs that are very early in development, those might be better served for patients who have had a long disease journey, maybe several relapses or an early relapse and their disease is proven to be more difficult. So we might recommend earlier phase trials for that patient. But I think

Phase two or three trials, these later phase trials where we understand a drug safety or a combination safety, we always, and I don't think we're alone by this in any regard, is a lot of the major cancer consortiums and groups of a lot of these major cancer institutes come together and they actually recommend clinical trials on diagnosis for a lot of these diseases.

Because that's how we push science forward and that's how we understand is the standard of care what we're currently doing. Can that be better? And the only way to do that is to offer it to somebody at the very beginning. So, you know, there are also a lot of other trials that don't necessarily involve chemotherapy or treatments directed at the disease. There are supportive care trials. There are maintenance trials. There are biomarker trials. And these are all

good for pretty much anybody. And it's gonna come down to what is best for each patient individually.

Mary (12:57)
Another myth or thing that I think patients get worried about is placebo. So am I not going to get treated at all, especially when it comes to these cancers that tend to have not as great of a prognosis? The idea of going onto a trial and potentially not getting treatment at all is really scary. So how would you address the sphere of placebo?

Logan Murray (13:18)
that's a very important one. know, placebo or a sugar pill, essentially a drug designed to look like a real drug, feel like a real drug. In blood cancers and a lot of these high risk diseases, you're not going to only get a placebo. That would be unethical. So we have to always do

what's best for the patient and giving somebody with a high risk blood cancer, essentially a sugar pill, is the wrong thing to do no matter who you ask. So it is very important to communicate to patients who have this concern that that is not the case whatsoever. If you are getting a placebo, at minimum you're going to be getting standard of care along with it. So it would be combined, you're not going to get undertreated by the standard of care.

And if there is a protocol that might offer somebody what might be suboptimal or under treatment for a patient, then it's going to come down to the clinician and the whole team to determine, this patient probably needs a different trial or a different protocol. But yeah, absolutely not. Anybody with lymphoma, myeloma, leukemia, MDS, you're not going to get placebo alone.

Mary (14:28)
thank you for explaining that. And when it comes to that, how are doctors deciding if a patient is a good fit for a trial and are trials risky?

Logan Murray (14:39)
Yeah, it's a very good question. It's a very complicated question as most of these are, but when it comes down to determining if a patient is a good fit for a trial, it's gonna be a shared decision. think it comes down to first and foremost, the patient and their family, but also having a very honest and open conversation with the clinician and the clinician or somebody's local oncologist that's been managing their

cancer for several months or several years might not be the clinician that is operating the trial. But it has to start with an open and honest conversation. There are also a lot of things that we need to consider. We need to consider what is available from a standard of care standpoint. So what is currently approved and that we can give the patient. And if we think that there's a better option out there, then we need to offer it. And then with trials, we also have to consider logistical.

Challenges because there are a lot of logistical challenges that go into trials whether that's frequent lab visits different, you know biopsies or diagnostic testing Sometimes inpatient admissions to the hospital depending on the protocol We need to be honest and open about that with the patients so that they know what they're getting into and also Familial factors and I think the quality of life

determination, you know, in a lot of these diseases, quality of life is just as important, if not more important, as quantity of life. It's something we always say. So if a patient is wanting to optimize their quality of life, we need to be cognizant of that when offering them trials. If we know that, you know, they might be at the hospital more often, traveling a lot, and if we don't think that aligns with their idea of a good quality of life, then we need to make sure that is, you know, out and open.

And to answer the question about are clinical trials risky? I think the short and simple answer is yes, but all treatments for these diseases have their risks. We kind of talked about the safety points and all the different things that clinicians and investigators do to make sure that these drugs, despite their risks, are given in a safe environment. And there's meetings and

you know, meetups essentially with all of the investigators coming together throughout the trials. And if at any point it is determined that whatever drug is being studied or whatever combination is being studied is not providing the benefit that they were looking for, then the trial is stopped. You know, there is no hiding anything from any patients. So, you know, there are risks, but those risks are mitigated by a laundry list of

techniques, checkpoints, and guardrails.

Mary (17:19)
I want to dive more into something you just mentioned with a lot of logistical things surrounding clinical trials. I think there are lot of questions patients have about this that I'd love to get your thoughts on. So in terms of traveling, you mentioned that they might not be seeing the physician who is their normal oncologist when it comes to participation in the clinical trial. So are patients having to travel far for clinical trials? Are there options for patients to participate closer to home?

Logan Murray (17:45)
Yes and yes. So depending on the phase of the trial or the institution, whether that's a multi site institution, which I talked about a little bit ago, a patient may have to travel for a trial, whether that's, you know, an hour, several hours or, you know, a flight away. But even if travel is required, it's very important for a patient to understand that.

help is available and if it's not made known to the patient, then the patient should ask because it is out there based on a lot of these protocols and the sponsors are the people putting on the trial. A lot of times they will offer lodging, travel reimbursement or assistance in stipends like that to kind of lighten the load and blunt the blow that

can go along with a lot of traveling and lot of expenses. But there are also trials that might be a lot closer to home than you realize. So it's really important to, if there is a good trial open for a patient, always ask the investigator or the clinician, hey, is there any way I can get this closer to home? Telemedicine is a wonderful thing. It's allowed us to treat a lot of patients with a much

broader reach into rural communities and give them treatments that they otherwise may not have known was available. So having that conversation and we'll kind of get into different resources that are very good at telling you exactly how far away certain trials are at some of these local and regional sites.

Mary (19:13)
Something you just brought up is cost and things associated with trials. So are patients paying to be a part of a clinical trial and what kinds of costs are covered versus what would be patient responsibility?

Logan Murray (19:26)
patients are not going to pay to be on a trial. They are doing the medical and scientific community a service. So a lot of the costs, especially anything related to the trial or the investigational or experimental drug is going to be covered by the sponsor. And that includes any necessary diagnostic testing or lab work. A lot of the inpatient stays will most likely be covered by the sponsor.

And whatever isn't covered by the sponsor, whether that is any visits or blood work or anything not related to the trial done while on study, insurance will cover as well. And then I also kind of mentioned previously, a lot of stipends are out there from sponsors to help patients cover hotel costs, travel costs, flight and those kinds of things. And also a lot of the resources and wonderful organizations that we get to work with.

in these disease populations. We'll touch on that at some point, I'm sure, have a lot of resources and grants and funding to try to make these treatments a reality for some patients who otherwise may have thought that it wasn't possible.

Mary (20:35)
want to get into potentially what you were mentioning earlier about consent and patient involvement in trials. So can a patient leave a clinical trial if they change their mind and what happens if they do?

Logan Murray (20:49)
Yes, absolutely a patient when they sign their you know informed consent We always tell a patient this is not a binding contract This is just telling us you're okay going on it right now But you can change your mind five minutes from now five days from now five years from now a patient reserves that right at any point throughout study and it's very important that a patient knows that because we don't want a patient to feel pressure to staying on a trial when something doesn't

feel right. A patient's going to know their body better than any clinician ever would. So we think it's paramount for a patient to know that they have that power. I think it's important to know that nobody's feelings are going to get hurt if a patient decides to disenroll. You know, I mentioned the quality of life piece a little bit earlier. If a patient feels like their quality of life is being impeded or hindered upon and

you know, they think it's not really aligning up with their goals at that point in their diseases journey or their treatment journey. Then, you know, they need to bring that up. But once a patient kind of removes himself from trial, they tell the investigator, the investigator might do what's called an exit interview or end of study visit. And then we pull them off study, put them back on.

whatever standard of care would be best for the patient or whatever kind of alternative therapy would be best for the patient at that time.

Mary (22:08)
I that piece you mentioned of feelings being hurt, I think that's something that plays into a lot in a patient's decision in this kind of space. And so I think it's good to have that reassurance that if something starts to not feel right or they maybe change their mind about participation, that it's not going to affect the relationship that they have with their doctor.

Logan Murray (22:31)
No, absolutely not. I, you know, we've had patients who have brought that up to us and they've said, I, you know, I was just so hesitant because I didn't want you guys to be upset with me, which, you know, we obviously would not scoff at a patient, but we quickly dispel that notion. You know, we want, we're there to serve the patient. We're not there to serve any, you know, investigational drug or anything. The patient is our priority. So,

Mary (22:43)
Yeah.

Logan Murray (22:58)
And even if we don't have a trial that is available at our institution, but we feel like a patient might benefit from a neighboring institution or another cancer institution, it's our job to make that treatment available. And whether a patient goes on study with us or with anyone else, it would never affect our relationship with that patient. And we should always be there to serve our patients at any

Mary (23:25)
If a patient is on a clinical trial and we've kind of talked about what that looks like in terms of treatment and things like that, does a patient still have the space to make decisions within their care during their participation in a clinical trial or do they kind of lose a bit of the control of their care?

Logan Murray (23:45)
They never lose control. You know, when these protocols get put in place and they are very verbose and they're very thorough and they're hundreds of pages long, when they are put in place, you know, they are put in place with the idea that everything that is happening is happening at the patient's consent. So any lab draw, any diagnostic test, any treatment, the patient holds the right to say, I don't want that.

And if that means coming off study for whatever reason, then we take the patient off study. know, we're not there to make the patient feel like they're at the mercy of, you know, rules and protocols. They are in the driver's seat. And that's kind of the purpose of the informed consent process and the shared decision-making process is to always make sure the patient is steering the boat. And we are kind of just a wind in their sails trying to help push them forward.

So I think that's very important for a patient to know that control is always theirs and if they feel like they are losing control, then a patient should always bring that up to their investigator.

Mary (24:46)
think that helps to provide a little bit of ease to the patient mind when it comes to deciding to participate or not in a clinical trial. So thank you for sharing that. Before we get into kind of the final section of today's interview where we're going to talk about more on the patient themselves side of things, are there any other myths or things that you think are commonly misunderstood about clinical trials that you think it's important for patients to understand?

Logan Murray (25:14)
Yeah, so if I had to kind of summarize a lot of the myths or misunderstandings, I think one of the biggest ones that we already kind of touched on, it's not a last resort. Trials just because they're offered to you, if they're being done so earnestly, it's being offered to a patient because it may present a better option than what we have currently available. So just because you're being offered a trial does not mean you've run out of hope. It just means there's more hope on the horizon.

you are not a guinea pig. think it's very important because we have a lot of patients tell us that, you know, when you're drawing 18 tubes of blood and making them go through all sorts of tests, the patient's going to say, I just feel like a lab rat, but it's very important that we communicate with patients. The reason why we're doing all that and it's because we're trying to do everything at the utmost level of highest level of safety. And like I said, they've already been through the animal testing. So the guinea pigs have already got it.

Mary (25:45)
Yeah.

Logan Murray (26:06)
So, you know, it's, you know, getting the drugs to patients, it's done safely. Another thing, trials are not strictly for the well-off. You know, we talked about a lot of the resources that are available. You know, we have heard that, who, are

in a financially tight spot might feel like they can't afford to be on a trial when in reality, you know, a lot of the expense is going to be covered or assisted. So we think that's very important. And then the placebo thing, I think we could kind of touch on over and over again. in these disease states, you're not just going to get a sugar pill and.

Mary (26:31)
Right.

Logan Murray (26:47)
unless you are already in remission and you know we're comparing maintenance therapy to a placebo to see if that might be a benefit. But if you need treatment you're going to get treatment. You're not just going to get some some fake drug. And then the last kind of myth we just talked about and I think again it just bears repeating you are always in control as the patient. And if you feel like that control is being taken from you.

then something has to change and it's up to the providing team and the patient to sort that out.

Mary (27:22)
Thank you so much for really helping to get into a lot of the common questions and misunderstandings and myths that patients have surrounding clinical trials. Like you said at the very beginning, clinical trials are such an important part of moving forward treatment in these diseases and being able to understand better what a patient experience would be like if they were to participate in something like this, I think can help them to feel more comfortable with the idea of being a part of some of this really important research.

So I'm really excited to be able to help calm some of those anxieties or just demystify clinical trials in that sense. And then finally, I want to talk about patients who are maybe listening here and are interested in getting involved in some of the maybe logistical or higher level questions that they might have. So if a patient is interested in finding out about clinical trials that might work well for them in their situation, what does the first step look like? What should that patient do?

Logan Murray (28:21)
You know, I always think it starts with an honest and open conversation with the hematologist that has been treating the patient, whether that's on the initial consult or it's two or three years into treatment. There's, you know, in our practice, if we're seeing a patient on new diagnosis, we talk about trials. If we're seeing a patient for a second or third opinion, we talk about trials. It is something that is built into our blueprint.

on our workflow because we always want to make sure we're touching upon it. And we know that patients know that it's an option for them. And we always encourage our patients to explore. We want patients to know what's out there for them. You know, we know these diseases are tough and we want to make sure that there's no stone unturned. So at any point in someone's treatment journey, don't hesitate to say, hey, are there any trials that you or someone that you know may have open?

The you know, especially in the blood cancer space. It's a tight-knit community and the providers meet very often and they try to know what's going on to make sure we can have a nationwide reach for our patients You know, there are also a ton of patient forums whether that's Facebook or any social media But also through a lot of the you know super helpful

know, sites and organizations that help treat these patients. So talking patient to patient is always helpful. And there, you know, several other organizations like clinical trials.gov and also very useful resources, emerging med and antidote are also very cool. You can go on, you can punch in your age, where you live, a little bit about your disease and your medical history, and it'll tell you.

how many miles you are away from certain trials. And when you see that, you bring it up to your clinician and the clinician will put you in contact with the right people.

Mary (30:10)
think there's a lot of things that patients don't know that they don't know and that leads to some nerves surrounding clinical trials. So what kinds of questions would you suggest a patient should ask their doctor before they decide to join a trial?

Logan Murray (30:24)
Yeah, so the easy question, what are my options? What's available to me? Like you said, a patient doesn't know what they don't know. And especially earlier on in these diagnoses, we're hitting them with a ton of bricks all at once. So we can't expect every question to be asked. I think it's very important to

Understand the logistical constraints and the financial considerations and the traveling and all of that. So anytime the trial is offered, patients should ask, what is this going to require of me? Am I going to have to go into the hospital for any amount of time? Am I going to have to travel? How frequently am I going to have to come for blood work and testing and biopsies and all of that kind of thing? And another very important question, what effect will this have on my quality of life?

I think that's a very broad question, but it opens the discussion to kind of find the deeper meaning for each patient on how any trial affects every particular patient and what their ideal quality of life would be. And then, you know, this is always a question that we get and it truthfully kind of cuts a little deeper, but it's, would you recommend this for your mother or your father?

And that is a question that every time a patient asks, I always kind of sit back a little bit, take a deep breath. And I tell them how good of a question that is because that really puts it in perspective for us because sometimes as clinicians, you know, we get so focused on the science and pushing medicine forward and trying to figure out how can we make things better. But at the end of the day, we're always there to serve the patient first and foremost. And if that patient's our mother or our father or our sibling, we want to make sure we're treating this patient.

Mary (31:35)
Yeah.

Yeah.

Logan Murray (32:04)
exactly like we treat, you know, our loved ones.

Mary (32:08)
Those are great suggestions and can help to start a lot of important conversations that will help a patient determine whether this is the right path for them to go on. In terms of kind of the logistic or day-to-day of a clinical trial, what should a patient expect that that could look like for them?

Logan Murray (32:27)
Yeah, so the typical flow of how we do trials, and I think this is very similar across a lot of institutions, you're going to have your consult or your initial visit where the provider or the investigator brings up the trial. Like I said earlier, we like to give the patient, we print out the protocol and send them home with it and also give them some highlighted bullet points about what to expect so they can comb through it.

really try to digest it over several days, you know, if we have that kind of time. But that's a big conversation that's going to lead us into the informed consent process. Then we, once we get consent, then we start the, pre-trial diagnostic testing, doing any, scans, any biopsies that are needed. And then you have the screening visit, which leads to cycle one, day one, which is when the patient gets the trial. And then after that, the follow-up, whether that's

know, blood work once a week for a month or two, a biopsy after one or two months, you know, that's all going to be dictated based on each specific protocol and it can vary. But that's kind of what takes us up to, you know, the drug getting to the patient. And then, you know, months and years down the road,

When visits are far less frequent, there's still going to be adverse event monitoring, long-term side effect monitoring, and long-term efficacy or effectiveness monitoring years later. So if patients are having long-standing issues from a drug that they received two years ago, we're not just going to cut you loose and say, good luck. Two years, 10 years later, there's still going to be follow-up to make sure we know what's going on.

Mary (34:06)
one of the things that we've heard in our patient communities and I've seen through family members going through different medical things, a lot of people will look back at the end of an experience and will say, I wish if I had known that I could have asked for this or if I had known that this was an option to make me more comfortable or if I had known a lot of ifs. And so if you were talking to a patient who was wanting to know how they could best advocate for themselves when it comes to a trial,

and to kind of help mitigate some of that, only I had known back then moments, what kinds of things would you suggest patients do to advocate for themselves?

Logan Murray (34:43)
Yeah, it's a really good question. I feel like I've used these words a lot, being open and honest at all times, understanding you're never going to hurt an investigator provider's feelings. You know, we're always there to serve the patient first and foremost. When it comes down to advocating for each individual patient, especially in consideration of a trial, take strict inventory on how you're feeling on the side effects that you're experiencing.

And like I mentioned earlier, if you feel like the trial protocol and the follow-up and or the side effects, is this affecting your quality of life? And is this hindering how you wanted to be spending your treatment journey? If it's not lining up and the answer is this isn't what I wanted, then bring it up at your earliest, you know, timeframe because the longer you wait,

the more you have to deal with something that could have otherwise been adjusted because there are modifications that you can make to remain on trial, to try to alleviate some of those issues. And at the end of the day, if the trial's not the best option for you, even after going on a trial, you always reserve that right to come off trial. So just be open and honest and know yourself and know that you know yourself better than anyone else does.

Mary (35:59)
Before we wrap up today, I want to speak to specifically the patients who are maybe listening today because they found this, because they were looking up clinical trials or trying to source information about a decision they're thinking about making. So if you were speaking to a patient who is hesitant about maybe participating in a clinical trial but was interested in the idea of doing it, what would you want to say to that patient?

Logan Murray (36:25)
Yeah, so, start by saying your hesitancy is warranted. We get it. And our job is to help work through that, help dispel some of these concerns and, you know, maybe even kind of reaffirm some of those concerns, but figure out ways to work around them. Clinical trials are great for a wide variety of reasons when we've talked about that, but it helps us push science forward and science in the blood cancer space.

is very complex and we need as many good options as we can have. We need safe options too. But just because they are great does not mean they're the best option for everyone. So it's always going to be a patient individualized decision. So we want to make sure that patients know that even going on a trial, they can come off at any point.

We want to make sure that patients know everything there is to know about each specific trial. And it's all going to come down to the truth, being open, being honest, and making sure that every piece of information a patient should have is available to them.

Mary (37:27)
Well, Logan, thank you so much for coming on today and for sharing and helping us to better understand clinical trials and addressing some of those, like you just said, very legitimate concerns or questions that patients may have surrounding this part of their potential treatment path. And I'm really excited to be able to share this information and

I guess before we finish, is there anything else that you want to say on this topic?

Logan Murray (37:51)
No, think this, you know, I mentioned earlier, this is a great opportunity to shed some light into a widely misunderstood topic.

Mary (37:58)
I am so glad we were able to end this season with this episode about clinical trials. The main takeaways I have from today's episode are that clinical trials center around patient safety, consent, best possible care, and that clinical trials are more accessible to wider range of patients than many people think. If you are interested in participating in important AML research, there are so many ways to do it. Some trials focus on new therapies.

some on adjustments to current therapies, there are others on quality of life and so many other types of research. If you want to participate, there's definitely a way and something that's available to you. I want to mention one way that you can get involved in research quickly and easily with just us here at Health Tree. As I was just mentioning, there are so many different types of research that are critical to moving AML work forward. We have a platform you may have heard about called Health Tree Cure Hub. This platform makes it possible for you to track your labs,

tests, treatments, and participate in surveys and studies about your experience as a patient. As we've heard multiple times over the last few weeks, each individual patient experience is important and can make a difference when researchers are able to look at trends and patterns across a wide range of patients. I'm going to include a link to a short video that explains CureHub, as well as a link that you can use to create a profile and start taking surveys in the episode description. If you have any questions, you can contact our amazing team of patient navigators.

who can help you with creating an account or answering any of your questions. Thank you so much for joining us today on the Health Tree Podcast for AML and for being with us throughout this 2025 season. I hope that you leave feeling like you have a better understanding of your disease, some of the exciting research that's happening in the AML space, and how to advocate for you and other patients. we want to be your source of information on AML research. So watch out for any special release episodes between now and our 2026 season.

where we'll be covering any exciting breakthroughs in AML that we don't want you to miss. I would love to hear your thoughts on today's episode and the 2025 season as a whole. If you've been with us in years past, this season has been a different format and we are interested to see what you thought. share them with me in a comment or send them to me in an email. You can find my email in the episode description. Thank you so much for being with us this year and I can't wait to talk to you later. So until next time.

 

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