Tag Archive for: acute myeloid leukemia care

Expert Perspective | The Value of Empowering AML Patients and Care Partners

 

How can patients with AML and their care partners feel empowered? Dr. Eric Winer, an AML expert, discusses the crucial role of the healthcare team and emphasizes the importance of open communication, asking questions, and understanding the care plan. 

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

As a provider, Dr. Winer, how do you empower care partners and patients who have been diagnosed with AML? 

Dr. Eric Winer:

From a provider standpoint, one of the most important things we need to do is listen and try to understand, first of all, what the patient is going through, and what the patient needs. Like I said, that’s where this is a team approach. It’s a team approach from not just a standpoint of patient and caregiver, patient and physician, patient and nurse practitioner or physician’s assistant, patient and social worker. 

This is a traumatic experience, and there are things that we can try to do to make it less traumatic, but one of the best ways to make it less traumatic is making sure patients are informed, that patients understand plans, that patients understand what’s going to be happening. One of the biggest concerns with any of these diseases is the unknown. There is a certain amount of unknown that I can’t predict.  

I can’t say to somebody you will or will not respond, but what I can say is, listen, here is what we’re going to be doing over these next few weeks, and here is our short-term plan, and here is our long-term plan, and making sure that we’re all on the same roadmap.  

I think that’s really important in terms of empowering the patients. The other thing that is important is that the patients should feel comfortable asking questions, because we’re not expecting our patients to be experts in leukemia. We’re expecting our patients to be the patients. I think of us, in terms of the clinicians, as being sherpas. We’re guiding people through this process, but the reality is they’re doing all the work. We’re just the guides, and so it’s important as guides that we make sure all these questions are answered, all of the information is given to the patient, and that the patient asks for that information.  

The other thing that is important, that is a little overlooked, is taking care of the caregivers as well. It’s very difficult to be a patient, but it’s also difficult to take care of a loved one or a friend during this time. So, it’s important that the caregivers have an adequate understanding as well about what’s going on, and what we expect to be coming forward in the next days and weeks so that they can plan for these processes as well.  

Emerging AML Treatment Options | Inhibitor Therapies

 

What AML treatments in development are showing promise? Dr. Eric Winer, an AML expert and researcher, discusses emerging treatments and the importance of clinical trials, noting the shift toward more personalized, targeted therapies.   

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.

 
Related Resources:
AML Therapy | Emerging Treatments and Clinical Trials

AML Therapy | Emerging Treatments and Clinical Trials

Expert Overview | AML Treatment Options and Phases of Therapy

Expert Overview | AML Treatment Options and Phases of Therapy

AML Gene Mutations | Emerging Targeted Therapies in Development

AML Gene Mutations | Emerging Targeted Therapies in Development

Transcript: 

Katherine Banwell:

What can you tell the audience about menin inhibitors for AML? 

Dr. Eric Winer:

Menin inhibitors are a very exciting, novel agent that’s come about in the next few years. The science of that actually stemmed from one of the laboratories at Dana-Farber, a physician named Scott Armstrong. Menin inhibitors are particular small molecule agents that are given orally that prevent the proliferation of leukemia cells. 

And really, initially, as of a little while ago, we thought that it was two particular mutations, something called NPM1 and something called KMT2A.  

But maybe we’re thinking that there may be other mutations that actually are also affected by these menin inhibitors. What’s important now is there are three different menin inhibitors in clinical trials in different stages that are very close to being approved, and so this is going to add just another agent in our armamentarium in order to treat AML and treat it specifically.  

I think one of the important aspects of this is that these medications, although not approved right now, are really showing a lot of clinical benefit in clinical trials. And so, it really highlights the importance of thinking about clinical trials when being treated with these diseases because the patients that are on these trials right now, and that are doing well with these medications, if they’re not in a center that has a trial, or they choose not to go on the clinical trial, then they don’t have the opportunity to have these drugs, and they don’t have the opportunity to get that improvement. 

Katherine Banwell:

Is there other research in AML that you’re excited about? 

Dr. Eric Winer:

Yeah, there is a lot of different research going on in AML constantly. One of the important aspects of AML is that we’ve changed the way we think about the disease over the past, say, 10 years or so. Ten years ago, we really only focused on a couple of different genetic mutations and focused on chromosomal abnormalities.  

What we’ve done now is we’ve been able to fine-tune things a little bit deeper, not just to look at chromosomes, but also to look at the genes that are involved. When we think 15 years ago, maybe we looked at two genes that were involved in these mutations and these mutational analyses. Now, we’re running panels that are between 50 and 90 gene mutations.  

We can determine if there is a particularly actionable gene that we can go after to gain benefit gain better responses, and gain remissions. Over these past 10 years, we’ve had a number of different drugs approved that are what we call small molecule inhibitors. There are a number of different small molecule inhibitors targeting different mutations. For example, there is a particular mutation called FLT3. There have been three drugs that have been approved over the past eight years to target that particular mutation, midostaurin (Rydapt), gilteritinib (Xospata), and quizartinib (Vanflyta).  

These actually are very specific to that mutation, and all three of them have shown significant improvement when patients are treated with those inhibitors. Similarly, there’s a mutation called IDH1 and IDH2. There have been small molecule inhibitors, ivosidenib (Tibsovo), enasidenib (Idhifa), and olutasidenib (Rezlidhia), which basically are targeting those particular mutations.  

In targeting those mutations, you’re gaining improvement. You’re gaining a better response, but more so by targeting these mutations, you oftentimes are having less side effects than what you would see with what I call old-school, conventional chemotherapy.  

The landscape of leukemia is dramatically changing right now, and it’s been dramatically under a transformation over the past, say, seven, eight years, where we went from looking at high doses of chemotherapy that was like a nuclear bomb exploding all over the marrow and wiping everything out, to really creating more of a targeted approach to how we treat patients. Almost thinking of it more as a personalized medicine in a way. 

A lot of people come in thinking about chemotherapy as the chemotherapy that their grandmother went through, or that their friend went through in the 1970s or ‘80s. And it really is a very different world. So, I think with these progressions that we’ve made, and with these advances that we’ve made, leukemia, although it still is a very frightening prospect, it’s something that we’re really making large strides in improving, and that I expect to continue to improve over the years.

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

 

How can patients determine if they are experiencing AML symptoms or side effects of treatment? AML expert Dr. Eric Winer underscores the importance of open communication with the healthcare team for timely, effective care, and better outcomes.  

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

It may be difficult to distinguish disease symptoms from treatment side effects. What advice do you have for patients who are experiencing any issues that stem from their AML? Why is communication important? 

Dr. Eric Winer:

When I speak to my patients, I say to them, your job is to tell me everything that is going on. My and my team’s job is to figure out what’s important and what’s not because that’s what we’re trained to do. I think that brings up two aspects. One is the importance of openness and honesty, because we can’t treat a problem if we don’t know there is a problem. We have a plethora of drugs that we can use for different symptoms, but if we don’t know the symptoms, we can’t treat them. A perfect example is if somebody is nauseated, we can’t tell by looking at them if they’re nauseated.  

We can tell when they’re vomiting and at that point, it’s too late, but if we know ahead of time they’re nauseated, then we can actually give a number of different treatments. What I say is it’s not just telling me, it’s telling people on my team as well, because it’s important to have an entire team involved in the care. So, for example, at Dana-Farber, we don’t just have a doctor-patient relationship. We have a doctor. We have a nurse practitioner. We have a physician’s assistant. We have nursing staff. We have social workers, care coordinators. It’s really a gigantic team effort, all working to try to make the best outcome and best situation for the patients. 

Expert Advice | How to Elevate Your AML Care and Treatment

 
 
How can patients elevate their AML care and treatment? Dr. Eric Winer from Dana-Farber Cancer Institute emphasizes the importance of actively participating in the care journey, staying informed about treatment plans, and seeking a second opinion.
 
Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask Your Doctor

AML Care Essentials | Health Literacy and Recommended Resources

AML Care Essentials | Health Literacy and Recommended Resources 

Transcript: 

Katherine Banwell:

This interview is part of PEN’s Elevate series, which encourages patients to take an active role in their care to improve outcomes. What advice do you have for AML patients who are seeking to elevate their care?  

Dr. Eric Winer:

I think it’s important for people to be an active participant in this care. While we recognize that not everyone has medical expertise when they are going through this, it’s important that they are informed that they would like to be informed. It’s important that they have a full understanding of what’s going on in terms of the treatment, the plan, the short-term plan, and the long-term plan. 

So, there is a lot of information that needed to be digested. What’s important to note is that it doesn’t all have to be digested at that very moment at the time of diagnosis. These are processes. What I tell people is that this is not going to be your only opportunity to talk and ask questions. This is something that we’re going to be going through and doing this journey together. So, I think it’s important that they become an active participant in that journey, not just with themselves but also with whoever their caregiver is, and whoever is important to them that’s going to be going through this journey as well. 

Katherine Banwell:

I understand that some AML cases require treatment shortly after diagnosis. Is there room for a second opinion, and if so, what are the benefits? 

Dr. Eric Winer:

So, there often is room for a second opinion. There are times, quite honestly, like you said, where patients have a really acute problem when they come in, along with the diagnosis, or that the diagnosis has gotten to a point where we need to initiate therapy as an inpatient, urgently. That is becoming less common. It used to be, when I started doing this, that if you had a diagnosis of AML you were admitted to the hospital, and you stayed there until you completed your first round of therapy. That is not the case now.  

Generally, what we’ve learned is that there are studies that show you can actually delay therapy for a period of time in order to make sure that other things are established. Getting a second opinion is very important, particularly as a tertiary care center where physicians specialize in these types of diseases. And so, I think it’s very important to get expert opinions, not just in terms of how to treat the disease but also diagnostically, and to make sure the correct tests are run, the correct molecular studies are run, in order to figure out exactly what would be the best treatment for your individual version of AML. 

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health from Patient Empowerment Network on Vimeo.

How can acute myeloid leukemia (AML) patients and care partners find coping methods? Watch as expert Dr. Catherine Lai shares advice and resources to help with mental health and ways to cope with AML over the long term.

See More from Best AML Care No Matter Where You Live

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What Role Does Telemedicine Play in Acute Myeloid Leukemia Care?

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care? 

Does Acute Myeloid Leukemia Prognosis Vary by Age?

Does Acute Myeloid Leukemia Prognosis Vary by Age? 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

Sasha Tanori:

Right. So a silent side effect that people facing cancer don’t always talk about is mental health. Are there any treatments or coping methods that you recommend for patients and care partners?

Dr. Catherine Lai:

Yeah, so I would say to get social work involved early on, I think there’s also…it’s silent, because there’s a lot of stigma around it, is that is something that we should be talking about or not talking about or…I can handle it, that sort of thing, so I introduce our social worker very early to know that she is a resource for the patients, no matter how big or how small, just to try to get them used to that idea. What I would also say is just talking with as many people as possible as I’m sure you realize that the network and the community is small, and everybody is willing to help each other out. So once you put yourself out there, you’ll realize that there are other resources out there, and you’re not alone in this journey, and what your cancer team offers you is different than what other patients who have gone through exactly what you’ve gone through can offer, and so I know that there are other resources out there in terms of societies that connect other patients who have the same diagnosis. So I would say it’s really just about education and talking and knowing that it’s okay to talk about your diagnosis and no matter what format that is, or if it’s a little bit now and a little bit later, and also just normalizing it, in the sense of the feelings you have are valid and normal. And if you don’t have those feelings is actually when I get worried about patients because you’re supposed to have certain reactions, you were a young patient and you were diagnosed with cancer.

That’s not a trivial thing. And we’re just…we’re all here to help you and help the patients go through everything.

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care?

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care? from Patient Empowerment Network on Vimeo.

In acute myeloid leukemia (AML) care, how can telemedicine be used? Watch as expert Dr. Catherine Lai shares different situations where telemedicine has served as a helpful tool and instances when in-person visits are optimal for patient care.

See More from Best AML Care No Matter Where You Live

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Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients?

What Treatments Are on the Horizon for Acute Myeloid Leukemia Patients?

What Role Does a Multidisciplinary Team Play in AML Care?

What Role Does a Multidisciplinary Team Play in AML Care? 


Transcript:

Sasha Tanori:

My care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered a clinical trial as a care option, what advice do you have for AML patients who are seeking clinical trials, and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting…are you getting a drug that we don’t know what’s going to work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local new chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So, it’s just a different set of knowledge.