AML Archives - Page 2 of 14

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

Related Resources:

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Why Is Shared Decision-Making Important for AML Patients?

Transcript:

Lisa Hatfield:

Dr. Hantel, can you explain the importance in utility of bone marrow biopsy as it relates to treatment?

Dr. Andrew Hantel:

Yeah, so bone marrow biopsies are one of the mainstays of our ability to understand where somebody’s leukemia is. And what I mean by that is somebody’s leukemia can be newly diagnosed, and we need to get a lot of the information about it. It can be somebody who’s after treatment, and we need to understand if their leukemia has responded to that treatment.

And that can take the form of, did the treatment work well enough to clear out all of the leukemia cells? And also after somebody’s blood counts have come back after the treatment has been completed, are only their good blood cells back, or has the kind of leukemia not responded adequately to treatment? And relative to the normal tubes of blood that we can get quite easily, a bone marrow biopsy, which we don’t like to do unless it’s necessary, is something where we have a lot of additional information that we can obtain. And it’s both information that we can’t obtain from the blood and also kind of information that we can get to kind of a different degree of specificity than we can in the blood.

And so a little bit more specifically, what I mean by that is sometimes people’s blood counts will look relatively okay, and there can be a good amount of leukemia still in their bone marrow. And other times, the person’s leukemia can be in remission, but their blood counts can look low and abnormal.

And so we need to be able to tell which of those things is actually happening. And if we could tell that without doing bone marrow biopsies, we would do that every time. But, unfortunately, the bone marrow is kind of a little bit of a harbor compared to the bloodstream. And so to be able to actually look and see what’s happening kind of in the factory is really necessary. And there’s a lot of additional tests that we’re able to run, because that’s where kind of the cells are produced, and we can see at a much lower level if there’s are any hints of leukemia left.

There’s more and more interest in kind of getting good testing from the blood. And so that’s a very active area of investigation. And to be able to do that in the future, I really hope there’s a day where we don’t have to do bone marrow biopsies. But for right now, our only ability to tell how well we’re doing with somebody’s leukemia treatment is to be able to…it’s to do bone marrow biopsies and obtain kind of that really granular specific and kind of deep dive detail.

Download Resource Guide | Descargar guía de recursos

Why Is Shared Decision-Making Important for AML Patients?

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC, AML Video WPS, AML Whole Patient Support /by Kara Rayburn

Why Is Shared Decision-Making Important for AML Patients? from Patient Empowerment Network on Vimeo.

What makes shared decision-making vital for acute myeloid leukemia (AML) patients? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses his approach to shared decision-making, the roles of patients and families, and proactive patient advice for the practical side of treatment risks and benefits.

[ACT]IVATION TIP

“…when your doctor’s talking to you about the risks and benefits of a treatment…ask them to talk to you about what does this mean in terms of maybe getting towards a milestone that you want to be around for and also we’ll be able to go to in terms of how healthy you are, side effects you might have, need to be in the hospital, all those different kind of things that I think are easy to get lost when we see somebody either in a hospital bed or in a clinic room that’s kind of spaced away from where they are and where they live all of their life.”

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

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What Are Potential Impacts of Artificial Intelligence on AML Patient Care?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Transcript:

Lisa Hatfield:

Dr. Hantel, how do you involve your patients and families in the shared decision-making process?

Dr. Andrew Hantel:

So shared decision-making is a complex subject, and I think the first thing I always like to do is to really just start off the conversation as much as we can. Just asking the person about who they are, who their loved ones are, what’s important to them. I think setting up the conversation that way really dictates a lot of the decisions that get made, because it helps me kind of understand who’s coming in to see me, what they find important in life, kind of what their goals are for their life, and for the people around them. Sometimes people are very much talking about grandkids and things that they want to see when the grandkids get older. Sometimes it’s that the person themselves is young and really wants to live to have their grandkids.

And so I think that this kind of breadth of people who can come in with leukemia means that I just need to know more about the person even before talking about the disease that they’re there to see me for. When we get into the leukemia itself, it’s really contextualizing a lot of the information that we find out about their leukemia with what I just said with the person themself and what their values are.

And this can take the form of many different things because in leukemia, we have treatments that are more intense, that are less intense. We have options like bone marrow transplant for some patients when it’s necessary. And a lot of those things are balances between risks that people might need to accept in terms of the side effects from treatments and the benefits that those treatments will give them in terms of our expectation of putting leukemia into a remission or ideally curing them long-term of their disease.

And so the patients and families are essential in that process, because they’re the ones who in the end are going to make the decision about, “Do I want this therapy or not? Do I want to move forward with something that’s going to make me have to be in the hospital for several weeks or longer, potentially, or try something outpatient if those options are available to me and kind of where I want to spend my time?” And so in that, it’s really just an ongoing conversation. It can take so many forms that we just want to know the specifics of what the risks and benefits are and what those risks and benefits actually mean for that person in front of me.

Lisa Hatfield:

Okay. Thank you. And do you have an activation tip for patients, their families maybe about when they come in to visit you for an office visit regarding those decisions?

Dr. Andrew Hantel:

So my activation tip would be for when your doctor’s talking to you about the risks and benefits of a treatment, it’s very easy for us to talk about risks and benefits in medical terms in terms of percentages of this and percentages of that. And you know I think it would be better if you ask and ask them to talk to you about what does this mean in terms of maybe getting towards a milestone that you want to be around for and also we’ll be able to go to in terms of how healthy you are, side effects you might have, need to be in the hospital, all those different kind of things that I think are easy to get lost when we see somebody either in a hospital bed or in a clinic room that’s kind of spaced away from where they are and where they live all of their life. And so I would just say bring in and ask for kinds of risks and benefits and decisions that are around who you are as a person even in addition to kind of the medical facts and their ability to tell you that.

Lisa Hatfield:

Great. Thank you. I love that tip personally, I’m going to use that when I see my oncologist in two weeks to have a milestone to work toward maybe, or based around. So thank you for that tip.

Download Resource Guide | Descargar guía de recursos

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Testing, AML Video ND, AML Video T /by Kara Rayburn

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances? from Patient Empowerment Network on Vimeo.

Are racial and ethnic differences shown in acute myeloid leukemia (AML) bone marrow biopsies? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses what early AML studies are showing and proactive patient advice for bone marrow biopsies.

[ACT]IVATION TIP

“…ask your doctor about what the different things that they’re looking for in the bone marrow biopsy are and kind of what they mean to you. Sometimes, they can be looking to see if the leukemia has cleared after a treatment. Sometimes, they’re looking to see if there’s a change in the mutations that they saw before in your leukemia and are seeing if you know something is different than they can now target.”

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

Related Resources:

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

What Is the Role of Bone Marrow Biopsies in AML Treatment?

Transcript:

Lisa Hatfield:

With these bone marrow biopsies or the disease in general, AML in general, do you see any unique patterns with different racial or ethnic groups? Because we see so many disparities in healthcare, any way in that you see different patterns of maybe genetic mutations with AML or any differences in the general course of the disease?

Dr. Andrew Hantel:

I would say that we…there are hints of those things right now. So there are some early studies that are showing, there are a couple specific mutations that have either increased rates or decreased rates in different racial and ethnic groups. The extent to which any of those have been really done on a wide scale and also done to the extent that we can say it actually makes a difference in different groups’ outcomes we haven’t established yet. And so right now, it’s more just hints that something is a little bit different. But the extent to which that is actually changing the course of somebodies diseases hasn’t been established. And it seems like some of these changes aren’t necessarily in the same mutations that we think of as having a lot of significance in terms of altering somebody’s prognosis.

And so while it may be activating slightly different pathways, they aren’t the ones that are, we think in our mind are the most important ones for saying how well or how not well somebody might be doing with their leukemia. There’s a lot more research that is being actively done by my colleagues both at Dana-Farber and nationally to understand that and may come that some of what I just said becomes not true, because there are new findings seen.

And that I hope that we can understand some of those differences and pathways more. But to the extent that anything actionable is done based on those things right now, the answer is no. Right now, we know that anybody can get any of these mutations, and it’s more just that a difference of when we’re looking at a population as a whole, something is a little bit more frequent in one group than another. But that can also come down to who in that group was actually included in the study that we’re doing. And whether or not that exists really across that whole population we have yet to be able to say anything about.

Lisa Hatfield:

Thank you. And do you have an activation tip regarding bone marrow biopsies? And I’ll tell you right now, if you tell patients they might one day not have to have them, they’ll be thrilled, but you don’t have to put that in your activation tip. [chuckle]

Dr. Andrew Hantel:

So my activation tip for this question is, just to ask your doctor about what the different things that they’re looking for in the bone marrow biopsy are and kind of what they mean to you. Sometimes, they can be looking to see if the leukemia has cleared after a treatment. Sometimes, they’re looking to see if there’s a change in the mutations that they saw before in your leukemia and are seeing if you know something is different than they can now target.

And just understanding a little bit more about what their thinking is and how they’re trying to help you by doing the bone marrow biopsy because we…it’s not a test anybody likes to do or have done on them. But we always do it for a good reason, and it’s to make sure that we can better control or better cure leukemia.

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care from Patient Empowerment Network on Vimeo.

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Testing, AML Video ND, AML Video T /by Kara Rayburn

How are acute myeloid leukemia (AML) treatment and care impacted by bone marrow biopsies? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School explains the role that bone marrow biopsies play in AML diagnosis and monitoring and how they help guide informed treatment decisions.

Download Resource Guide | Descargar guía de recursos

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

Related Resources:

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

What Is the Role of Bone Marrow Biopsies in AML Treatment?

Transcript:

Lisa Hatfield:

Dr. Hantel, can you explain how insights gained from bone marrow biopsies impact treatment strategies for patients with AML? And how often might individuals with AML undergo these biopsies during their treatment course? And what specific objectives do these follow-up biopsies serve?

Dr. Andrew Hantel:

Sure. So bone marrow biopsies provide critical insights into the diagnosis and monitoring of AML. They help to determine the specific type of leukemia diagnosis. They help determine the effectiveness of ongoing treatments and to guide our therapeutic decisions. For people with AML, these biopsies are typically performed initially at diagnosis and then during treatment to assess response and sometimes add intervals to monitor for disease recurrence.

The specific timing is really dependent in follow-up on what somebody’s counts are like, which treatments they’ve received, and what their options are in terms of future treatment, if that’s being considered. When somebody gets a biopsy, we look at the cells under a microscope. And we perform specific tests to look at the different characteristics of the cells like the DNA of the leukemia cells.

And together with the clinical information of the patient, such as what other conditions they might have and then their values, meaning what are their goals and what’s most important to them? The things we see under the microscope and in those tests can together inform us as to which treatments both might be effective and align with these other factors.

For instance, we had a patient last week who was in their late 70s, and the testing from their blood bone marrow saw that there was a specific mutation in their leukemia that would allow them to actually just take a pill instead of getting kind of a more complex and infusion IV medication for the treatment of their leukemia.

And so based on that test and based on that biopsy, we’re able to have that patient actually go home from the hospital and start that treatment as an outpatient and come back and forth to clinic rather than need to stay into the hospital for a different type of therapy and remain there for observation. And so understanding the results of these biopsies can really help patients and healthcare providers make informed decisions about the course of treatment and any adjustments to the therapy that might be needed.

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors from Patient Empowerment Network on Vimeo.

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

How do socioeconomic status and other factors impact novel acute myeloid leukemia (AML) therapy use? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses major factors that impact novel AML therapy use, solutions to decrease the disparities in novel therapy use, and support resources for patients.

[ACT]IVATION TIP

“…for patients who are newly diagnosed and considering different treatment options that may be available to them to say working with both your clinical team and looking outside the clinical team to other well-known support services like Leukemia & Lymphoma Society to see if there are additional financial and other resources that can be obtained in order for you to be able to avail yourself of any treatment option that’s available, would be very helpful.”

Download Resource Guide | Descargar guía de recursos

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

Related Resources:

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Why Is Shared Decision-Making Important for AML Patients?

Transcript:

Lisa Hatfield:

Dr. Hantel, in your study focusing on sociodemographic associations with uptake of novel therapies for AML, can you describe those findings and what they might mean for patients from diverse backgrounds, particularly those with lower socioeconomic status?

Dr. Andrew Hantel:

So in our study of sociodemographic associations with the uptake of novel therapies for AML, we found that patients from diverse backgrounds, particularly those with lower socioeconomic status and those who identified as Black, Asian, or other in this case, non-Hispanic minoritized groups actually face disparities in accessing some of the new treatments that we have for AML. And we know that there are a number of new treatments for this disease, but that many of these treatments are more expensive and are given as outpatients.

And in these cases, this can be great, because it allows people to not have to remain in the hospital like some of our old therapies, but also means that really this is putting more of the like logistical burden on families and on patients. Meaning you have somebody who’s potentially more sick at home rather than in the hospital where there’s nursing and a lot of other caregivers that isn’t on the caregiver at home.

And then we also have the increased burden of actually bringing the person back and forth to the hospital, taking more time off work, and all of the money also that’s involved in that. And so this can translate into some disparities by socioeconomic status, which means that people with less means are less likely to get these medications. And these same groups are also less likely to be seen in practices where these newer drugs are likely to get prescribed.

And so together, some of the study findings that we saw were more that these drugs were being less taken up by people with those backgrounds and by practices that see those patients. And in the end, we know that these novel therapies are being approved, because they offer something new, either that’s better or that expands the treatments to newer groups who are unlikely to have as great options before.

And so we want to really provide these treatments to everybody who’s eligible for them. And we shouldn’t think that that eligibility requires really different amounts of money, or different types of personal characteristics could be equitably available to everybody.

And addressing these disparities kind of involves a very complex set of considerations, such as making sure that patients who are stable enough to do so they can go see AML specialists and consider more of these novel therapies that all patients are educated about, their treatment options and the logistics of different treatment choices and that they’re provided with all the avenues of support available to them.

Some of these can be through societies like The Leukemia & Lymphoma Society, which can connect patients with a variety of support services, including more informational services as well as direct financial support to be able to either obtain these drugs or work with companies and other places to figure out how to maintain or how to obtain these drugs.

So my activation tip for this question would be for patients who are newly diagnosed and considering different treatment options that may be available to them to say working with both your clinical team and looking outside the clinical team to other well-known support services like Leukemia & Lymphoma Society to see if there are additional financial and other resources that can be obtained in order for you to be able to avail yourself of any treatment option that’s available, would be very helpful.

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway? from Patient Empowerment Network on Vimeo.

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

May 24, 2024/in Acute Myeloid Leukemia, AML Access and Affordability, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video AA, AML Video ND, AML Video TC /by Kara Rayburn

What steps are being taken to help underrepresented acute myeloid leukemia (AML) clinical trial groups? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses an important approach that is being utilized to dismantle AML clinical trial barriers for underrepresented groups and proactive patient advice to work toward clinical trial engagement for all patient groups.

[ACT]IVATION TIP

“…patients of really any group to say kind of to their physicians, ‘How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody?’”

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Related Resources:

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Transcript:

Lisa Hatfield:

Dr. Hantel, for patients who belong to a racial or ethnic group that are underrepresented in clinical trials, what steps are being taken to address this issue among you and your colleagues?

Dr. Andrew Hantel:

That’s a great question. So there are a number of efforts being made in our community to increase diversity in AML clinical trial enrollment, and I really think we are taking on what’s called a multi-level approach, meaning that we need to target things at different levels, the level of the patient, the level of the doctor and the research team, the level of how trials are designed to the level of the hospital, level of the community, and then the level of the government or the regulatory people, and just working on one of those levels is really going to fix things and so we are starting to kind of chip away at the problems that exist at each of those levels, that are really stopping underrepresented groups from being represented in clinical trials.

A few examples of these are things like community engaged trial development, where we are linking clinical trial investigators to community members to collectively design trials that really lower some barriers to entry, like eligibility criteria, and then to look at where they’re actually planning on opening up their trials to make sure that they are in communities who have been historically underrepresented, we’ve also set up some monitoring systems since…You may be surprised where they actually haven’t been good systems for telling hospitals, telling researchers, telling doctors, who am I enrolling versus who am I actually seeing as a patient and who’s being seen at our hospital versus who lives in the community that the hospital serves.

Really without that basic information, doctors and researchers can’t really have an idea in any real-time sense of how well or how poorly they’re doing at enrolling equitably. And we’re trying to do the best for our patients. And a lot of this is kind of inadvertent exclusion, but I think unless you present those data to people, they are likely going to assume it’s going well or that the problem kind of exists elsewhere, and they can’t do any better. And so I think linking that down to the program and the hospital actually gives them buy-in as to, “Oh, this is something that I’m doing, this is by a responsibility.”

There are also programs that we’re working on to train culturally diverse research staff and physicians, since a lot of research teams don’t look too much like their patient communities. And finally, we are creating educational programs with patient advocates and community organizations to educate patients about AML and about trials to make sure that they’re well-informed, have a place to go for answers, and all of this together really leads to lowering barriers, expanding access and making the system more inclusive and reflective of the community.

So my activation tip for this would be for patients of really any group to say kind of to their physicians, “How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody.

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation? from Patient Empowerment Network on Vimeo.

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

For acute myeloid leukemia (AML) clinical trial participation, what makes post-access enrollment essential? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses factors that play into post-access enrollment and patient advice to help decide about clinical trial participation.

[ACT]IVATION TIP

“…when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient…by looking at it as, who am I as a person, and does this fit with me and sit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.”

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Related Resources:

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript:

Lisa Hatfield:

Dr. Hantel, what does post-access enrollment mean, and why is it important in understanding disparities in AML clinical trial participation?

Dr. Andrew Hantel:

Sure, so we have a lot of steps between somebody getting diagnosed with AML and somebody enrolling on a clinical trial, and the first step is actually being at a site where clinical trials are offered. And in a lot of cancers, that is kind of the major barrier to getting on trials and that a lot of people are taken care of at clinics or in hospitals where there just aren’t clinical trials available for their cancer at all. And so after that, we kind of have this idea of a lot of other steps that are needed, even when the person is at a site with clinical trials.

And that’s kind of that whole idea of what post-access enrollment refers to, that in a very granular way, means and at a site that has clinical trials, does that site now have clinical trials that are right for my specific type of AML, and then after that, am I actually eligible for that particular trial, and after that, do I want to participate, and after that, is it feasible for me to participate?

Because there are a number of other factors that come into a clinical trial, like maybe extra visits, maybe extra tests, a lot of other things that come into trial participation beyond just what the actual trial is studying, and so all of those things together mean post-access enrollment, and there are concerns for acute leukemia with respect to post-access enrollment, because it seems like those kind of bevy of steps are where patients who are historically underserved and from minoritized backgrounds are being excluded more from clinical trials or at least not allowed to participate as much, and we don’t know yet if there is one particular step, but it seems like from all the evidence that we have, that it’s kind of a combination of slightly more difficult steps at each point in that process that make it so in the end, those groups are less likely to enroll and less likely to participate.

In the past, there was a lot of, I would say almost blame put on some of those groups because it was thought that they were more distrustful of the medical establishment, and I think for right reasons, at least in the past, the medical establishment has done horrible things to minoritized groups in this country. But we’ve recognized that it’s more a lot of structurally racist barriers that are put up in front of those people, and that the good evidence now is that people, no matter their background, really want to participate in clinical trials to the same degree.

And that it’s more kind of the structure is that we, the walls that we put up in front of them, or other things that are stopping them from enrolling, could be insurance, it could be access, it could be eligibility criteria, it could be kind of all of those other burdens that are required, like having a caregiver and everything else, but together, everything after access seems to be just as important for getting people onto a clinical trials in AML, whereas that’s not as much the case in some other diseases.

Lisa Hatfield:

Okay, thank you. And do you have an activation tip for that question, Dr. Hantel?

Dr. Andrew Hantel:

My activation tip for this question would be, when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient. There are some trials that are doing wonderfully about this and really trying to make sure that people are able to continue to live their lives while enrolling and participating in clinical trials.

And so I think by looking at it as, who am I as a person, and does this fit with me and fit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.

Lisa Hatfield:

Okay, thank you. And everything you talked about, it sounds like clinical trials are so complicated. If patients can have an advocate with them most of the time when they’re going to these appointments, it might be super helpful too, to take somebody with you. There’s a lot of information being throughout it patients, especially when it comes to clinical trial information, so thank you.

Dr. Andrew Hantel:

I completely agree.

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face? from Patient Empowerment Network on Vimeo.

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

Do minority and ethnic groups face acute myeloid leukemia (AML) clinical trial inequities? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses research study results of NCI-designated cancer centers of AML versus other cancers and proactive patient advice for clinical trial access.

[ACT]IVATION TIP

“…patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, ‘Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?’”

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Related Resources:

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript:

Lisa Hatfield:

Dr. Hantel, what primary findings are in your study regarding inequities and clinical trial participation among minoritized race and ethnic groups with cancer at the comprehensive cancer centers?

Dr. Andrew Hantel:

So we performed a couple of different studies on this, I think together, they’ve collectively found that there are significant disparities in clinical trial participation among minoritized racial and ethnic groups at comprehensive cancer centers. And just to take a step back and say, what are comprehensive cancer centers? They’re basically a designated center, and the designation is provided by the National Cancer Institute (NCI), and that basically says that this place is of such and such a level of quality in terms of their delivery of cancer care and their research that they perform, and so these are generally larger academic centers that have a lot of clinical trials, have a lot of experts across different cancer types, including AML. And those are the ones that we are wondering if people had equal or equitable access to, in other cancers compared to AML.

A lot of the disparities in clinical trial participation is really because these different minoritized groups have less access to these comprehensive cancer centers, so they could really never be considered for trials, because they’re just not seen at places where the trials are taking place. This is the case for a lot of common solid tumors, such as breast and colon cancer, where very, very large proportions of patients are seen in the community.

And this means that in leukemia, however, we found that participation disparities were not only due to access, but because the leukemia is less common because a lot of docs actually almost preemptively refer some of their patients to get seen, some of the disparity is kind of shifted, and it ends up becoming not as much an issue just of access but also of getting into the trial after they’re seen at the center.

And this can be because of a variety of things, there are reasons that we can go into in a second, but we kind of also want to make the statement in the context of it not being a one-size-fits-all answer. There are some cases where comprehensive cancer centers actually both allow great access and allow equitable enrollment on their trials, and there are other comprehensive cancer centers that have had…and continued to have issues with this.

So I also just want to make sure to make that distinction. But after somebody gets down to a center, you have the process of, is there a trial at the center that’s actually right for your specific type of leukemia and the stage of the disease, and if you’re up front or relapsed or all of these other nuances, and then you have the questions of, are you eligible, are you offered that trial, and then are you interested in partaking in that trial, and is it feasible for you to participate?

So there are all these other steps after that point of access, and in general, what we saw was that it was kind of these later steps that were as much more of an issue for equitable enrollment for leukemia as that first step of access. And so it’s slightly different from what we’ve seen in other cancers, and so the answers and the solutions for that are going to be different.

So my activation tip for this question would be for patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, “Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?” That might be something where it does take you to that site to actually get evaluated and see if there is anything available, but that would be the first step.

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

May 24, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions? from Patient Empowerment Network on Vimeo.

What are key barriers and solutions to acute myeloid leukemia (AML) care? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses factors that create AML care barriers, solutions to overcome barriers, and proactive patient advice to help ensure optimal care.

[ACT]IVATION TIP

“…patients and their families to be aware of where any specialized care facilities are near them, it might not be even so much geographically near as like within the same 10 miles, but it might be like, ‘What’s the nearest large facility that maybe is known for having clinical trials or other medical research?’ And just to reach out to them and ask, ‘Do you have telehealth consultations? What would it mean for me to come to you?’…and then talk to the actual physician who’s caring for them and say, ‘Is it safe for me to wait to talk to them, is it something where I do therapy now, and I should maybe go talk to them after I’ve received my initial therapy and have that discussion?’”

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Related Resources:

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript:

Lisa Hatfield:

Dr. Hantel, what are some of the key barriers that patients with AML encounter when accessing timely and effective care, and how can healthcare systems work to address these challenges?

Dr. Andrew Hantel:

That’s a great question. People with AML face significant barriers in accessing care, primarily due to the complexity and intensity of the treatment options that we have available. The landscape of those treatment options is really much different than it was even 10 years ago. We’ve had more than 10 novel drug approvals and extensions of treatments that are effective into groups such as older adults who have really previously had few good options and now have potentially many, and this has led to differences in what some of us call diffusion of innovation or how treatments are taken up and used by the medical community.

We kind of have some people who are usually at academic centers and are early adopters because they’ve seen some of these newer drugs and participate in the global trials, and then we have other community docs who see a lot of people with a variety of different cancers and kind of keep up with the literature, but to some extent aren’t as familiar with those new drugs and take some time before they start to incorporate them into practice.

And it is really important because in AML is not a disease that’s so common, so every oncologist sees patients with AML very frequently, and that kind of creates a difference between patients, people who are specialists, who are at the larger academic centers and people who are on the community and their need to really work together.

And this is a big point because treatments generally need to occur within a few weeks of diagnosis, if not much sooner, and therefore, all together this idea of new treatments kind of expanding out into the universe and also having the need for quick treatment means that geography really plays a crucial role in acting as a barrier to some patients getting what we think of as optimal care, especially for patients who live in rural or underserved areas that might not have access to these larger medical centers with specialized physicians, and then we also have financial challenges for those same patients and that getting into places is a major barrier, insurance to get to those places may have additional burdens that are placed in people with high costs that are associated with some of these treatments and healthcare systems have begun to address some of these challenges.

By really trying to enhance some local capacities such as through telemedicine consultations, kind of working in what we consider like a hub and spoke system where they have local providers reaching out to them and patients coming to them, at the time point of treatment decisions and then going back locally for a lot of their care, just so it’s not as burdensome in terms of travel, and then there’s also a lot of programs that are both within medical systems and outside of medical systems that are being helpful for patients, for financial guidance and assistance, such as through Leukemia & Lymphoma Society, which has wonderful programs, as well as kind of identifying partners for travel and housing grants and stipends that might be needed for caregivers, a lot of.

As I said, in a lot of centers like ours who are really trying to use any means possible to overcome these barriers for different patient groups, and a lot of it really depends on exactly what the person’s situation is, because so much of leukemia care is about the values of the patient and really how we’re targeting treatment, not only toward their disease, but really aligns with their goals, and so overcoming barriers is a really personal thing based on the values and the goals of the person who is in front of you.

Lisa Hatfield:

Great, thank you. And then one follow-up question I did have to that, as you mentioned that some patients are seen by their community oncologist, is it possible for a patient who is diagnosed with AML to do maybe one consult via telemedicine with a specialist in AML and maybe coordinate care that way, or do specialists typically like to have those patients present for regular visits?

Dr. Andrew Hantel:

Yeah, so I think the landscape of this is shifting in the past, I think no matter what, we have the idea that patients need to be safe, especially in the early days of their diagnosis, so it might be the case that somebody’s leukemia is diagnosed and they need treatment, it started immediately, and it’s not safe for them to wait, and it’s not safe for them to travel. But definitely there are other people who see their doctor and their blood counts are relatively stable, and the doctor thinks that it’s reasonable for them to get a second opinion, and these days, those opinions are happening yet still in person, sometimes centers like to see people in person.

But other times, as we said, those travel and distance and burdens can be so much that patients and these centers are turning to telehealth and other virtual forms of care that can at least provide a preliminary consultation and say, if you were to be seen here, we may have additional options like clinical trials or from what I’ve seen, I agree with what your physician is offering you and those more higher level decisions. And so it’s not so much whether or not even telehealth versus nothing, it’s kind of telehealth in person versus the need to get care immediately.

Lisa Hatfield:

Okay, that’s super helpful, thank you. And do you have an activation tip for this question, Dr. Hantel?

Dr. Andrew Hantel:

Yeah, I think the first thing is essentially just for patients and their families to be aware of where any specialized care facilities are near them, it might not be even so much geographically near as like within the same 10 miles, but it might be like, “What’s the nearest large facility that maybe is known for having clinical trials or other medical research?” And just to reach out to them and ask, “Do you have telehealth consultations? What would it mean for me to come to you?”

Those kinds of things, and then talk to the actual physician who’s caring for them and say, “Is it safe for me to wait to talk to them, is it something where I do therapy now, and I should maybe go talk to them after I’ve received my initial therapy and have that discussion?” And I think that leads into my kind of second or ancillary tip is to really don’t be afraid to ask your care teams about both of those things, and then about the logistics of what any of your care is going to mean in terms of the burdens of getting back and forth to clinic, having to be in the hospital and both for you as a patient as well as for your family.

FLT3 Inhibitors for AML Update

May 7, 2024/in Acute Myeloid Leukemia, AML Blog ND, AML Blog TC, AML Newly Diagnosed, AML Treatments and Clinical Trials, Art Flatau, PEN Blog /by Art Flatau

Introduction

Mutations in the FLT3 (fms-like tyrosine kinase 3) gene are the most common mutations seen in Acute Myeloid Leukemia (AML) patients. FLT3 mutations are seen in about 30% of AML patients. There are 2 different FLT3 mutations, FLT3-ITD (internal tandem duplication) mutation and tyrosine kinase domain mutations (TKD) mutation. Here I report some newer results of treatments with FLT3 inhibitors, that I have come across in the last several months.

There are quite a few drugs that target the FLT3 gene, including:

First generation drugs:

Sorafenib (Nexavar)
Midostaurin (Rydapt)
Lestaurtinib clinical development of lestaurtinib has been discontinued as it did not provide significant clinical benefit.

Second generation drugs, which tend to have fewer and less severe side effects and are more effective include:

Gilteritinib (Xospata)
Quizartinib (Vanflyta) – Only for ITD mutations.
Crenolanib – Not FDA approved.

FLT3 inhibitors are effective treatments for AML with a FLT3 mutation. However, there are still a number of open questions. How should FLT3 inhibitors be used, with induction chemo, with consolidation chemo and/or for maintenance after a stem cell transplant (SCT) or chemo? Can they be used as a single agent for treating patients who are not good candidates for chemotherapy? Do they work well with newer treatments, specifically with azacitidine and ventoclax regimens? There have not been a lot of comparison between the different drugs. Finally, there is the question of why all these drugs have names that are barely pronounceable!

Gilterinib

There is a new study looking at the use of gilterinib as maintenance after SCT. This was a multi-national randomized study, comparing maintenance with gIlterinib against placebo. The result was overall the patients who received gilterinib had better relapse-free survival (RFS) compared to patients who received placebo. However, this difference was not considered statically significant. However, the trial had a pre-specified secondary objective to look at the subgroup of patients who had measurable residual disease (MRD), that is they were MRD+.

About half of the patients were MRD+ either before SCT or after (or both). In this group, the RFS survival in the patients receiving gilterinib was significantly greater than the placebo group. Unfortunately, there were more side effects in the gilterinib group. It is likely that, because of this study, patients who are FLT3+ and undergoing a transplant will get gilterinib as maintenance if they are MRD+ and not if they are MRD-. The use of gilterinib or other FLT3 inhibitors as maintenance therapy will continue to be a subject of active research.

Quizartinib

I wrote a post on quizartiinb: Quizartinib in FLT3-ITD-Positive AML that was an overview of a trial of this drug along with induction and consolidation chemo and as maintenance after chemotherapy. In July, 2023, Quizartinib was approved for treatment of FLT3-ITD AML in the United States by the FDA.

Crenolanib

Crenolanib is a second-generation FLT3 agent that works for both FLT3-ITD and FLT3-TKD mutations. In Crenolanib and Intensive Chemotherapy for Adults With Newly Diagnosed FLT3-Mutated AML, crenolanib was given with “7+3:” induction and then with consolidation chemotherapy and as maintenance therapy after consolidation chemo and after a SCT. About 2/3 of patients were younger than 60, but patients as old as 75 were included. Although this was not a randomized trial and was fairly small (44 patients), it seemed that Crenolanib added to chemotherapy and as maintenance improved survival compared to midostaurin (the first drug approved for FLT3 AML) and quizartiinb (described above).

Sorafenib

While sorafenib is an FLT3 inhibitor, this first study is on its use in AML patients even if they did have a FLT3 mutation. Previous studies had shown sorafenib improved survival when given with standard “7+3” induction for AML. This study (Sorafenib Plus Cladribine, High-Dose Cytarabine, G-CSF, and Mitoxantrone for Untreated AML) looked at sorafenib with cladribine, high-dose cytarabine, granulocyte colony–stimulating factor, and mitoxantrone (CLAG-M). The first part of the study (Phase I) tried increasing doses of sorafenib and mitoxantrone. The Phase II part of the study used the recommended phase 2 dose (RP2D) to treat more patients. When compared with historical controls who received CLAG-M without sorafenib, the patients who received the RP2D had improved survival.

Finally, there is a report on the long term follow-up of a trial looking at using sorafenib as maintenance therapy after a transplant (Sorafenib Maintenance After Allogeneic HSCT in Patients With AML With FLT3 Internal Tandem Duplications). The use of sorafenib as maintenance reduced relapse which improved survival in patients with FLT3-ITD AML. The non-relapse mortality and the incidence of chronic Graft-Versus-Host Disease (GVHD) in those who had a transplant was similar in patients who received sorafenib and those who did not. This result was sustained long-term (with a median follow-up of about 5 years).

Conclusion

The best way to use FLT3 inhibitors in patients with FLT3 mutation is still an area of active research. Newer agents promise better results – fewer side effects and better survival.

[ACT]IVATED AML Resource Guide II

April 22, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Resource Guides, AML Newly Diagnosed, AML Programs, AML Resource ND /by Kara Rayburn

ACTIVATED AML Resource Guide_Taveras Alam

[ACT]IVATED AML Resource Guide II en español

April 22, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Resource Guides, AML Newly Diagnosed, AML Programs, AML Resource ND /by Kara Rayburn

Spanish_ACTIVATED AML Resource Guide_Taveras Alam

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations from Patient Empowerment Network on Vimeo.

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

March 25, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

What AML research efforts are underway to advance equity among Black and Latinx and populations? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses initiatives that are working to improve AML care disparities.

Download Resource Guide | Descargar guía de recursos

How Can AML Patients Benefit From Shared Decision-Making?

Related Resources:

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript:

Lisa Hatfield:

Dr. Taveras, in your research, you examine racial and socio-economic disparities in AML outcomes. Can you speak to what research efforts are underway to further understand and address these disparities in AML diagnosis treatment and outcomes among the Black and Latin populations?

Dr. Sara Taveras Alam:

So one of the things that we have noticed is that there is an underrepresentation of minorities in clinical trials for AML, and there is an intentional poll currently to try to make these trials available to these communities. One barrier maybe if patients are not able to access clinical trials, because of the institution they’re in, so we definitely encourage patients to ask if their institutions offered clinical trials. The other thing is that we are trying to make clinical trials available in other hospitals, not just the big name academic institutions.

So there is an effort to replicate trials or expand trials to institutions where these populations may be frequenting more so than the large big name academic groups. A lot of factors contribute into the disparities, but a lot of our research efforts up until now have been focused on identifying that there is a disparity and why the disparity is there. We’re just now starting to try to figure out how to expand the access so that our minorities are included in these clinical trials and hopefully address the disparities.

Download Resource Guide | Descargar guía de recursos

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

March 25, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

Do AML Patients Receive Allo or Auto Stem Cell Transplant? from Patient Empowerment Network on Vimeo.

What type of stem cell transplant do AML patients receive? Expert Dr. Sara Taveras Alam from UTHealth Houston explains stem cell transplant for AML care and advice to help patients locate a bone marrow donor match.

[ACT]IVATION Tip

“…encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low. We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend.”

How Can AML Patients Benefit From Shared Decision-Making?

Related Resources:

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript:

Lisa Hatfield:

When you mention a stem cell transplant, are those allogeneic stem cell transplants where they receive a donor’s stem cells, or are they the autologous where you take some of their stem cells at a certain point and then give them back to the patient?

Dr. Sara Taveras Alam:

So for patients with acute leukemia who require a stem cell transplant, it is an allogeneic stem cell transplant, so it does have to be a transplant from a matched donor, and the first pool of possible donors tend to be the patient’s siblings. If they have brothers or sisters from the same mom and dad, those are the possible first-line donors and are tested to see if they’re a match to the patient, and second to that, then the transplant institutions look into a donor registry.

So my activation tip for that question is to encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low.

We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend. However, we could always pay it forward, and if we encourage our friends and family to enlist on these registries, it is very beneficial for our population.

Download Resource Guide | Descargar guía de recursos

How Can AML Patients Benefit From Shared Decision-Making?

March 25, 2024/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

How Can AML Patients Benefit From Shared Decision-Making? from Patient Empowerment Network on Vimeo.

How can shared decision-making benefit AML patient care? Expert Dr. Sara Taveras Alam from UTHealth Houston explains how she works to set patient expectations from diagnosis and throughout the treatment journey and patient factors that play into decision-making.

[ACT]IVATION Tip

“…patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.”

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

Related Resources:

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript:

Lisa Hatfield:

Dr. Taveras, how do you involve your patients and families in the shared decision-making process, both at initial diagnosis and then going forward?

Dr. Sara Taveras Alam:

From the initial diagnosis, I do try my best to explain what the life of an AML patient looks like. This can be very overwhelming and we tend to need to repeat ourselves throughout the patient-doctor relationship, most of our patients unfortunately, require a one-month-long admission initially at diagnosis, most of our patients receive diagnosis and remain in the hospital while they get their first treatment and recover from that. And that’s a very big journey to go through, and we want to make sure that the patients themselves are well-informed and their family and caregivers are well-informed of what this will mean for them as well.

Many of my patients may have children or parents or spouses that they themselves are the caregivers for and then they need to make arrangements for that while they’re going through their health process. So I believe that the decision to receive treatment is not a decision that doctors make for the patients. It’s a decision that should be made by the patient, and although most people will choose to receive treatment offers for acute myeloid leukemia, I will have some patients that may have been older and may have gone through other health issues and do not want to spend the rest of their lives in this process and that is their choice to make.

So I really do try from the very beginning to make sure I set an expectation of what life will look like with acute myeloid leukemia, and what that looks like initially is about a one month long hospitalization with chemotherapy, a lot of transfusions, monitoring for infections, and after that time period, it will have a lot of clinic visits, sometimes twice a week, and possibly re-hospitalizations for treatment depending on the treatment decided upon. We have more intensive chemotherapies or aggressive chemotherapies and lower intensity chemotherapies, that’s also a shared decision.

There may be patients who are appropriate for intensive chemotherapy in terms of their fitness or age, but may be afraid of the side effects that that could entail, and it may be appropriate for them to go with a low intensity, and that’s an option for them. So I think that ultimately, my activation tip for the question is that patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.

One example is, we’ve had a patient whose daughter had a sweet 16 and her re-admission was scheduled during that time, but it was really important for that patient to be with her daughter on her birthday, and we just pushed on the admission. If the patients bring up what their concerns are, we’ll do our best to accommodate as long as it’s not a risk to them.

Lisa Hatfield:

Great, thank you. And for all the patients listening, it’s nice to know that we can ask our providers if we have a special event, can this be changed, is there any chance of altering the timeline just a little bit. So thanks for that tip. We appreciate that.

Dr. Sara Taveras Alam:

You’re welcome.