A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

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A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

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Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey.  My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues. 

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers. 

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

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[ACT]IVATED AML Patient Plan

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Thank you for taking this assessment. By answering the questions below, a custom patient plan featuring a collection of vetted resources will be emailed to you within 5 minutes. If you don’t see it, please be sure to check your spam. Stay [ACT]IVATED. 

 

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[ACT]IVATED AML North American Specialist Treatment Centers

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ACTIVATED AML Toolkit_North American Specialist Treatment Centers

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[ACT]IVATED AML Toolkit Checklist

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Informed and [ACT]IVATED Decision-Making in Acute Myeloid Leukemia Care

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Patient Empowerment Network (PEN) is committed to efforts to educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML treatment options are ever-evolving with research advancements in treatments and testing, and it’s critical for patients and families to educate themselves with health literacy tools and resources on the latest information in AML care. With this goal in mind, PEN created the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in acute myeloid leukemia care.

The [ACT]IVATED AML program is aimed at newly diagnosed AML patients, yet it can help patients at any stage of disease. [ACT]IVATED AML helps patients and care partners stay updated on the latest options for their AML, provides patient activation tools to help overcome care disparities and barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with a blood cancer.

Cancer survivor Lisa Hatfield interviewed experts Dr. Sara Taveras Alam from UTHealth Houston and Dr. Andrew Hantel from Dana-Farber Cancer Institute as part of the [ACT]IVATED AML program.

Lisa Hatfield and Dr. Sara Taveras Alam

Refining Acute Myeloid Leukemia Care

As AML treatment options have continued to grow, there are more decisions to be made and more testing to be performed for AML monitoring. Bone marrow biopsies serve as a crucial piece of the AML care puzzle by supplying information that helps guide optimal patient care. Dr. Sara Taveras Alam shared the role that bone marrow biopsy carries in the patient care journey. “I think the most crucial time for bone marrow biopsies are at the diagnosis and after induction, if we have achieved our goal to achieve remission, then the bone marrow biopsy may be repeated monthly, depending on the institution that the patient is going to.” 

Involving patients and families in decision-making is an integral part of the treatment journey. Dr. Alam discussed treatment factors and proactive advice for patients. “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.”

Lisa Hatfield and Dr. Andrew Hantel

Solutions for Improved AML Care

Since AML is a relatively uncommon cancer, patients need to be aware that AML specialists can help carry out the latest treatments in a timely manner. Dr. Andrew Hantel shared, “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.”

Even with some significant barriers in AML care, solutions are underway to overcome barriers. The complexity and intensity of AML treatment options create significant barriers to care for some patients, especially those who live in rural areas. Dr. Hantel discussed how patients in rural areas often face the double barrier of less access to specialized AML care that’s updated on the latest treatments and financial issues to access care. Dr. Hantel shared some solutions that are helping to overcome barriers to optimal AML care. “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.”

Artificial intelligence (AI) has been touted by many as a solution to overcome disparities and biases in cancer care. However, Dr. Hantel explains how the most essential piece of overcoming clinical trial disparities is to have diverse representation in trials. “So I think there’s a number of different biases that can come into artificial intelligence models. And it’s the same, a lot of the same biases that we have in our current clinical trials, and that historically marginalized groups have not been well-represented, either in participating in trials or in their data that’s input into these AI models. And for kind of the same reason, we don’t really know how generalizable the data that we have from the trials or from the AI really apply to those populations.”

[ACT]IVATED AML Program Resources

The [ACT]IVATED AML program series leads a three-part approach to inform, empower, and engage both the overall AML community and patient groups who experience care disparities. The series includes the following resources:

Though there are AML care disparities, patients and care partners can take action to empower themselves to help achieve optimal care. We hope you can take advantage of these essential resources to aid in your AML care for yourself or for your loved one.

[ACT]IVATED AML Resource Guide III en español

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

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What Are Potential Impacts of Artificial Intelligence on AML Patient Care? from Patient Empowerment Network on Vimeo.

How might acute myeloid leukemia (AML) patient care be impacted by artificial intelligence? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School shares his perspective on potential risks and benefits of the impact of AI on AML patient care.

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Why Is Shared Decision-Making Important for AML Patients?

Transcript: 

Lisa Hatfield:

Dr. Hantel, can you elaborate on the significance of oncologists believing that AI-based clinical decision models need to be explainable? And how might this impact AML patient care and decision-making processes?

Dr. Andrew Hantel:

Sure. So I think just taking a step back and saying you know what is AI, and what does explainability of AI even mean? So AI or artificial intelligence is essentially computer algorithms that learn to some extent like us, but in other ways differently, kind of how to process information and make decisions based on that information or make recommendations, at least.

And to some extent, like you or I, we can’t really explain “Why did I decide to have Cheerios this morning versus having like whole wheat toast or something?” It’s kind of difficult for me to say, “Oh, I just felt like I wanted to do that instead of that.” To some extent, AI also does that. It can kind of arrive at a decision after digesting a lot of different data over its lifetime to say that it prefers Cheerios versus whole wheat toast.

But it can’t necessarily tell you why it wanted one versus the other. And in medical decisions, to some extent, the same things can happen. It can’t really adequately explain to some extent why it might recommend one treatment versus another. And we like to think that in medicine, we’re making evidence-based recommendations that we choose treatment one or treatment two over treatment three, because the evidence for one and two is better for the person in front of us.

And AI can also kind of explain things some ways to that extent, but in other ways it might not know all of the other characteristics of the person that aren’t in that computer that make us think treatment one or two is better than three. And so our ability to actuallyd say, “Is the AI making this decision appropriately and able to explain why it came to decision one and two?”

If it can’t do that, we can’t actually understand whether or not it’s gone wrong and whether or not we should trust what it’s recommending. And so for that, we kind of have to create artificial intelligence models that are explainable by saying, “I’m telling you, you should choose this option versus that option because of reasons A, B, and C as they apply to this patient who is being taken care of.” And the hope is that there are ways computer scientists are using to try and get AI towards that.

But we really need to make sure that we create an AI that’s trustworthy in order for us to make you know AML patient care decisions that do better for our patients, because we know that AI is powerful, and it can bring in a lot of different data sources that are difficult for any human to make in any kind of scenario. But to be able to do that in a way that doesn’t put patients at risk and that really improves their care and improves our ability to maintain and optimize people’s health is essential. And so while AI is not kind of right now being used to make decisions in AML patient care, it’s going to be tested probably in the near future to help out with that in clinical trials and controlled settings.

And so you as a patient or somebody who is very interested in the power of AI, I would say once we start to hear about those things, it might be something that you’re interested in participating in a trial, or you’re interested in kind of learning more about that. We could come back and talk about that more. For the moment though, I think it’s just more of a risk that we’re trying to avoid of making AI that’s not explainable and potentially harms patients rather than helps them.

Lisa Hatfield:

Okay, thank you. One of the things I know in some cancer research is they are using artificial intelligence and machine learning models to help predict outcomes based on certain therapies. And I wonder if you have any comments on, because the data used is historical and real time coming in all the time, but we know there are inherent biases based on disparities in healthcare anyway from underrepresented communities. Do you think that those biases can be overcome in future models that are used to predict outcomes to treatment for different types of cancers?

Dr. Andrew Hantel:

Yes. So I think there’s a number of different biases that can come into artificial intelligence models. And it’s the same, a lot of the same biases that we have in our current clinical trials, and that historically marginalized groups have not been well-represented, either in participating in trials or in their data that’s input into these AI models. And for kind of the same reason, we don’t really know how generalizable the data that we have from the trials or from the AI really apply to those populations.

We assume because they have a lot of the other same characteristics as the people who are in the trials or kind of in these models that we can apply those data to them. But I think the push is to use both data sets and to encourage participation in trials for those communities, such that we know that these drugs and that AI are safe and effective for them.

And so there are both efforts to do that in leukemia and cancer broadly, and across healthcare even more broadly. And that can be either by working together with kind of multinational consortia of physicians and researchers to kind of pool data that includes patient populations from around the world. And the same thing is being done for trials as well as to kind of help make sure that the people who are underserved also kind of within our own communities are included in both of these processes.

Lisa Hatfield:

If a patient were to come on to you and said, “Dr. Hantel, I looked up on ChatGPT, what is the best treatment for me given these mutations or this characteristic of my disease?” What might you say to them? Would you involve that in your decision-making? Would you discuss that with them a little bit more? How would you handle that?

Dr. Andrew Hantel:

I think I would just generally be curious about you know what the actual transcript of the conversation was like. I think right now one of the major concerns for a lot of AI is that it can hallucinate things. And so there are some famous examples of lawyers putting in you know kind of briefs that they wanted to file and the AI coming up with like court cases that never existed to justify things. And so the last thing that we want is in medical decisions for people to rely on kind of made-up facts to make treatment choices.

And so, I’d be interested in kind of its medical decision-making process and kind of the data that it was able to rely on to make the decision. More from the standpoint of curiosity and education for myself to understand how patients are interacting with these things, as well as to make sure that the patient was also understanding kind of the information that was being put out and wasn’t having any misconceptions.

I think that the potential for these AI to help patients is vast in terms of their ability to understand a lot of the medical jargon and a lot of the information that’s coming at patients through portals and everything else, that could be very scary. But I also want to make sure that we’re not kind of overloading patients with what we think is an answer, but actually can come with a lot of falsehoods and harm.

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

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What Is the Role of Bone Marrow Biopsies in AML Treatment? from Patient Empowerment Network on Vimeo.

What part do bone marrow biopsies play in acute myeloid leukemia (AML) treatment? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses the value and information gained from bone marrow biopsies, how AML characteristics can vary, and his hopes for the future of bone marrow biopsies.

Download Resource Guide | Descargar guía de recursos

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How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

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Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

 Why Is Shared Decision-Making Important for AML Patients?

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.

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Why Is Shared Decision-Making Important for AML Patients?

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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.”

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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.

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Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

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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.”

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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.

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How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

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

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

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

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

 Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

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

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.

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

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

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.”

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Related Resources:

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

 Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

 Why Is Shared Decision-Making Important for AML Patients?

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.

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Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

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

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?’”

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Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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

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

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

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.

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

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

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

See More from [ACT]IVATED AML

Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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

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

 Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

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.

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