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The Importance of Acute Myeloid Leukemia Patient Empowerment

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The Importance of Acute Myeloid Leukemia Patient Empowerment from Patient Empowerment Network on Vimeo.

Why is acute myeloid leukemia (AML) patient empowerment vital? How can acute myeloid leukemia (AML) patients become empowered? AML expert Dr. Catherine Lai from Penn Medicine explains how she helps empower her patients and why educating patients is a vital part of their care.

[ACT]IVATION TIP from Dr. Lai: “Don’t be afraid to ask questions, don’t be afraid to ask about resources and other ways to get information, you want the right resources, so not necessarily…everything on Google is accurate, but there are lots of good resources out there that can give you the information needed so that you can make educated decisions.”

Download Resource Guide

Download Resource Guide en español

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Related Resources:

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

AML Treatment Approaches Expand for Older and High-Risk Patients

 A Look at Lower Intensity Chemotherapy in Untreated AML

Transcript: 

Dr. Lai: 

It’s important to empower patients so that we’re making the best decision for them…that’s in line with their goals. I think that one of the main reasons why I love what I do is because I’m able to participate in the patient’s journey, and that journey doesn’t always mean that a patient has to live longer.

So I try to ask patients or do as patients, what are their…short- and long-term goals, do they have life events that they want to get to, is there a wedding coming up, a grandchild or something that I can help them get them to so that we can make a decision together that is taking into consideration their life outside of clinic and outside of the hospital.

I like to try to spend a lot of time with my patients educating them. Some people say I sometimes give them too much information, but I don’t feel like patients can make good decisions without being properly informed. So an educated patient makes a much better…makes a much better decision than somebody who doesn’t have the information.

And then I would also say it’s important to emphasize that you and your provider and our advanced practice provider and the social worker, we’re all a part of the same team that we all want the best outcome for the patient. And so knowing that, that you have a team of people that are taking care of you and that you really need to embrace learning and understanding as much as possible so that you can make the best decision about your short-term and long-term plan for yourself. So activation tip here is don’t be afraid to ask questions, don’t be afraid to ask about resources and other ways to get information, you want the right resources, so not necessarily…everything on Google is accurate, but there are lots of good resources out there that can give you the information needed so that you can make educated decisions.

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Becoming an Empowered and [ACT]IVATED AML Patient

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML is shown to impact younger patients compared to other types of blood cancer. In addition, there are some marginalized communities of Black and Latinx AML patients that experience disparities in health outcomes. Recent studies in AML have shown higher mortality rates and higher rates of AML recurrence in Black and Latinx patient groups. PEN aims to help empower patients in their care. With this goal in mind, we kicked off the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of the latest in AML care.

Disparities in AML Treatment and Health Outcomes

AML research studies show that Black and Latinx patients experience disparities in AML treatment and health outcomes. Some of the study findings include:

A recent study in Blood Advances showed that Black adolescent and young adult (AYA) patients with AML have higher mortality rates and higher rates of AML recurrence in comparison to white patients. The study compared clinical outcomes between 1983 and 2016 for AYA patients between the ages of 18 and 29. The early mortality rate of Black AYA patients was 16 percent compared to 3 percent for white AYA patients. When examining complete AML remission rates, 66 percent of Black AYA patients experienced complete remission compared to 83 percent of white AYA patients. The authors of the study looked at the research data and determined that delayed diagnosis and treatment in the Black AYA patients as well as genetic differences of AML likely led to the higher mortality rate for this group. In comparison, Black and white patients between the ages of 30 and 39 showed no significant differences in their survival rates.

Lead study author Dr. Karilyn Larkin, a hematologist at the OSUCCC – James, shared, “To our knowledge, this is the first study to examine how molecular genetic alterations contribute to outcomes in young Black people with AML compared with their white counterparts.” Study of genetics is extremely vital in developing new and refined AML treatments, and this is why it’s more important than ever for more Black AYA patients to join clinical trials to create a larger pool of participants to learn from.

Another recent study in Blood showed that Hispanic/Latinx and Black AML patients have higher mortality rates in comparison to white AML patients. The study analyzed several factors in the disparities including health care access, tumor biology, treatment patterns, ICU admission during induction chemotherapy, comorbidities, and structural racism. Neighborhood measures of structural racism were found to be a major predictor of AML mortality rates. The neighborhood measures that were tracked in the study included census tract disadvantage, segregation, and affluence. The study authors concluded that more research must be done to learn the ways that structural racism relates with different AML treatment and predictive factors to impact health outcomes. Then more actions can be taken to help decrease the health disparities for these patient groups.

[ACT]IVATED AML Patient and Expert Tips

Black and Latinx patients who more frequently experience AML disparities are key groups for patient advocacy and empowerment. AML specialists, patients, and patient advocates have pooled some valuable advice through their experiences in treating and living with AML with the goal of improving care for all AML patients. PEN has been fortunate to receive some tips from patient and AML Empowerment Lead Sasha Tanori and AML specialists Dr. Catherine Lai and Dr. Naval Daver toward patient activation and empowerment.

Sasha talked about her AML experience as a Mexican American and the delay in her diagnosis. “You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day.”

Sasha’s care in a rural healthcare setting also contributed to the delay in her diagnosis. “In my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, ‘We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.’”

Dr. Lai and Dr. Daver Tips

Dr. Lai advises patients to take proactive actions in their care. “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

Testing has become a key factor in optimizing treatment for each patient’s specific AML. Dr. Daver also stresses the importance of testing. “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.”

Dr. Daver also explained the importance of genetic mutations currently under study in combination clinical trials. “Patients should be checked for arrangements like MLL rearrangement NPM1 mutation, new fusions as these may be amenable to therapy with the menin inhibitors, there are multiple trials with five different menin inhibitors, single agent trials and also combination trials now ongoing across multiple centers both in the U.S. and ex-U.S.”

The future of AML care is full of hope, and Dr. Lai shared her perspective. “There are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.”

Clinical trial participation continues its vital role in improving AML care, and Dr. Daver took the opportunity to stress the importance of trials. “Clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward.”

[ACT]IVATED AML Program Resources

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

  • [ACT]IVATED Expert Interviews with experts Dr. Catherine Lai and Dr. Naval Daver moderated by an AML patient
  • [ACT]IVATED Resource Guide  (en Espanol here)  a downloadable, printable support resource packed with a newly diagnosed patient checklist, expert tips, AML facts, AML mutations, cytogenetic abnormalities, and support resources
  • [ACT]IVATED Patient Vignettes to learn valuable experiences and lessons learned from other AML patients
  • [ACT]IVATED Activity Guide – a downloadable, printable support resource packed with information and activities to educate, empower, and support AML patients and care partners in their journeys through care

Though the underrepresented AML groups of Black and Latinx patients have experienced health and care disparities, experts and patient advocates are taking action to improve care for all. By shining the light on gaps in care, PEN aims to aid in reducing these gaps along with continued research advances and clinical trial participation. AML patients can educate and empower themselves to become more confident and active partners in their care. By doing so, they can make more informed decisions for improved health outcomes. We hope you can continue to use the [ACT]IVATED AML program resources to advance your path to becoming an informed, empowered, and engaged patient. 

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Advocacy Tips From an AML Patient

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Advocacy Tips from an AML Patient from Patient Empowerment Network on Vimeo. 

AML patient and Empowerment Lead, Sasha Tanori, shares her advocacy tips, and the importance of being honest and open with your oncologist.

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Related Resources:

How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

 What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

 How I Overcame Biases During AML Treatment

Transcript: 

Sasha Tanori:

Okay, so my number one thing, I guess I could…a tip sort of that I can give to women specifically or non-gendered people, if you want kids, I would definitely say to talk to your doctor as soon as you find out, even before you start doing the chemo, if you can just really, really talk to them and see, I think there’s anything that they can do for preserving your eggs for the future, because even though it may seem like you know it’s just no, not big deal. Not everyone gets the opportunity again. I know there are some people out there who might be able to, but it’s not a guarantee. And it sucks to have that opportunity kind of taken from you in a way, and I know it’s not something that you’re thinking like, “Oh well, it’s life for death.” And…yeah, I understand, and I get that, but in the moment, it may feel that way, but you never know how are you going to feel five, six years down the line when you’re pushing 30 and you’re like, “Oh my gosh, My opportunity is gone. You know, there’s nothing I can do about it.”

So that would be my number one tip. Definitely to be honest. Be honest and open with your oncologist, find some type of tips or tricks, or even if you just need someone to talk to about the infertility…it’s definitely worth it. Another thing I would say is to be really, really open with your oncologist about everything you’re going through. Nothing is too embarrassing and I know that’s a lot easier said than done, but I think being honest about what you’re going through, whether it’s mentally, if you’re going through depression, anxiety, if you’re having suicidal thoughts or tendencies, that’s definitely something you should talk to your oncologist about, so they can help you reach out to find some type of counseling. Mental health is very, very important when it comes to this. Your mental health will make or break you during this journey, and you have to find some type of close community, whether it’s your friends, your friends, your family, or just your oncology team, like someone that you could reach out to and talk to about everything, lay it all on the table and now I’m feeling guilty because I survived that my friend didn’t, or I’m feeling anxious because I have the scan coming up, and this is the third one in like two months, you know? There’s so much things that are going on in your head and to keep it to yourself, it’s a lot and it’s not fair to you, you need to be able to speak up and tell people what you’re going through, it doesn’t matter who it is if it’s your friend, your mom, even your oncologist, but they’re going to understand and they’re going to help you.

There are lots of resources out there that will definitely make this a lot easier. Another tip I would say is, talk to your oncologist about the good, the bad, and the ugly when it comes to your side effects because if you stay quiet about it, you’re going to really regret it. There have been many times where I was just too embarrassed to be like, :Oh you know what, I have this really bad rash on my butt, and I don’t know what to do about it.” So finally, they’re like, “Why didn’t you say something? Oh yeah, we can give you a cream, or we can do this or that for you.” And you’re just like, “Oh, okay, that feels so much better. Thank you.” But at the time, you’re probably just like, “Oh my God, I’m so embarrassed, I don’t want anybody to know about this. I don’t even want to tell my parents, I don’t want to tell my friends.” But I mean, this is all related to your cancer journey, one bad side effect can lead to something else, which could lead to something else. So it’s very, very good to try and be open and honest when it comes to your side effects, your emotions, your body, if you’re gaining weight or losing weight, if you’re losing your hair again, if you’re losing your eyebrows, you know talk to them, find out if there’s any solutions that can help because…

It’ll definitely make a big difference. I would say definitely another big thing would be to try and build a community through social media. Having friends or even just strangers on your feed that you see go through the same things you go through makes you feel so much less alone. I have been able to… I’m very happy that I’ve been able to make friends on social media through Instagram, Facebook, Twitter, just start adding everybody goes on Facebook groups that are specifically for AML, so you can just type in AML recovery, AMLl survivors, AML, family groups, caregivers. There’s a lot of things out there that are definitely beneficial and it helps to talk to others about it, so you feel less alone. Definitely. So I think those would be my biggest tips for expressing your advocacy.

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How I Overcame Biases During AML Treatment

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How I Overcame Biases During AML Treatment from Patient Empowerment Network on Vimeo. 

AML patient and Empowerment Lead, Sasha Tanori, shares how she had to overcome several biases to get doctors to take her symptoms seriously.

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Related Resources:

How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

 What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

 Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

So, of course, I can’t speak for everybody, but of course for me, I am Mexican American, I’m from a little small area called The Imperial Valley, it’s like at the very, very bottom of California, and it’s literally like 20 minutes away from Mexico. So right off the bat, I experienced a lot of low-income poverty type of bias, I guess you could say. And then being plus size, that was another thing when I initially first went…I remember one of the first things that they told me, I was like, “Well, first of all, you’re obese, and you need to lose weight.” And I was like, “Well, I have to deal with the bruises?”  And they were like, “Well, maybe your body.” They’re just coming up with different excuses as to why, maybe it’s because I have this problem or that problem, and I was just like, “Well, no, I don’t really think that’s the issue.” So then they had misdiagnosed me, I got sent home and then when I had went back to the hospital, that was another thing they brought up again, I was in the hospital, because I had a giant bruise on my lower back, and it was like I looked like a tire mark. And they were like, “Okay, well, it says here that your BMI is high.” And I’m like, “But what…what does me being plus-sized have to do with the giant bruise on my back? This doesn’t make any sense.” No correlation, nothing.

So that was another big thing that just has always irritated me my entire life, I’ve always been a pretty big chubby girl, so if I had hurt myself they would always bring up my weight somehow it’s just like, that is looking to do with me breaking a bone or me having the cold or something dumb like that. So that was another thing that kind of bugged me whenever I was first diagnosed, they would always kind of bring up your weight, and another thing is that because I live in a low-income community, we don’t have resources like cancer doctors down here, I think there’s like maybe two and they’re not even in my local town, they’re in the town over. That’s like a 10-minute drive. So when I was first diagnosed, I was at the hospital for 12 hours. I was there with my mom and they had no clue what was wrong with me, so then I got sent to San Diego, which is like two-and-a-half hours away, and when as soon as I got there, within like 30 minutes, I was diagnosed with cancer.

So that’s how quickly they were able to catch it and everything, but in my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, “We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.” So we were just like, “Okay.” So yeah, that was definitely something that…it has a lot to do with my culture. I live in a small mostly Mexican-driven city location, I guess the Imperial Valley is like a valley, I guess it has five or six different little towns all put together, so a majority of us are Mexican, so we’re considered low-income poverty, we don’t have a lot compared to when it comes to bigger towns like LA or San Diego or San Francisco, but yeah, I think those were my biggest issues. And then, of course, being a woman. No matter what, you’re always going to get that. People aren’t going to take you serious. We’re going to get that, “Oh, man, she’s just overreacting. She’s on her period,” or your typical misogynist stuff that people say about you. But those are my biggest things or I guess adversities that I had to go through when it came to my cancer journey.

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What I Wish I Knew Before My AML Diagnosis

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What I Wish I Knew Before My AML Diagnosis from Patient Empowerment Network on Vimeo.

AML patient and Empowerment Lead, Sasha Tanori, shares what she wishes she knew and what to ask before her AML diagnosis, and the importance of advocacy.

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Related Resources:

How Does One’s Culture Impact AML Care

How Does One’s Culture Impact AML Care

 Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

So, one of the biggest things I wish I knew, especially before, was the whole saving your eggs type thing for fertility. That’s one of the biggest things that I honestly really regret because here it is almost what…five, six years later, and I, unfortunately, am infertile, so it really does suck because that was something that I was really looking forward to in my life was like being a parent or being a mom, and at the time, it’s just like…everything happened so fast, it was like, Okay, we’re going to…We did the chemo, and now we’re going to do a couple more rounds and then it’s like, Oh, we found a donor, so you could have your bone marrow transplant…oh my gosh, I can’t say the word, your bone marrow transplant. I think I had mentioned it to my doctor, but he was like, “Well, if we wait, now we’re going to lose the person who’s going to donate to you.” And I was like, “Okay, well, we need to hurry up and get that done, get it over with.

So back then, I really wish I would have advocated for myself more, ask more questions and because thinking back, I’m like, I don’t mind if I would have waited until after having my eggs frozen to find another donor, I think that possibly there could have been someone else out there.

But I think it was just in such of that state of mind of like, “I need to hurry and get this done. It’s life or death, I’m going to possibly die type of situation.” But you know I’m like, “No, I think I would have been okay if I would have waited another month or so until after I froze the eggs.” But you live and you learn, and there’s not really much you can do about it now, unfortunately. But at the time, I really wish that I would have spoken up and advocated for myself more if I would have known that that was going to happen, because like I said, five years later infertile can’t really do anything about it, you know? Yeah, my life is saved, but I can’t have kids though, so you just kind of think it heartedly about it, but yeah, that’s one of the things I really wish I would have advocated for myself more about. For now, I think everything else has been kind of…it’s been good. I mean, I’ve taken it step by step, by day, you just got to put on your big girl panties or put on your big girl shorts, I guess you could say, and just continue going about your day, you gotta wake up, do your job, take care of your family, take care of your life.

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How Does One’s Culture Impact AML Care?

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How Does One’s Culture Impact AML Care? from Patient Empowerment Network on Vimeo.

AML patient and Empowerment Lead, Sasha Tanori, shares how her culture impacted her care and how her diagnosis opened her family’s eyes to start taking care of themselves.

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Related Resources:

What I Wish I Knew Before My AML Diagnosis

What I Wish I Knew Before My AML Diagnosis

 How I Overcame Biases During AML Treatment

 Advocacy Tips From an AML Patient

Transcript: 

Sasha Tanori:

My culture made a big significance in my care, because it was something that my family, especially my dad with the Mexican side, it wasn’t something that you did. You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day. So when I started getting the bruises and the tiredness and the fatigue, my dad was just like, “She’s just clumsy, she’s just making it up, or she’s being dramatic,” and it was never a big deal to anybody, especially with him. You know my mom, she’s a little bit more on my side with everything, so she was like, “Oh yeah, you know, maybe you should go to the hospital. Maybe you should go check this out, maybe you should go do that.”

But finally, it was my cousin who convinced me about like a month after all, I was going through all of that to go to the hospital, and still my dad was just like, “Man, she’s going to go to the hospital and be there for 12 hours, and nothing’s going to be wrong.” He was so sure that everything was fine, so finally, when I had went, and I found out I had cancer, I think it really opened my dad’s eyes to realize, “Wow, maybe she wasn’t lying.”

Maybe she wasn’t making it up. But yeah, I think it was a really big step on my part being Mexican American, to finally take that step to take care of myself, especially physically and mentally, you know? God forbid, you have depression or anxiety in a Mexican household, they’re just like, “No, no, no, there’s no…what do you mean you don’t feel good? Just walk outside, drink some coffee, you’ll be fine. Get over it.” So yeah, I think it really opened my dad’s eyes, especially seeing me so sick for him to kind of realize, “Wow, you know, this stuff is kind of serious.” Because now he goes to the doctor, he takes his medication, he takes care of himself more.

But yeah, having that type of cultural background in your household, it’s really hard to express how you’re feeling when it comes to your mental and physical health. It’s hard to walk up to your dad and be like, “Hey, Dad, I’m not feeling good, can you take me to the doctor? Or can we talk about this?” And she’s like, “No, no, no. We don’t talk about stuff. No, we don’t go to the doctor, we don’t do any of that stuff, we have to stay strong and work and take care of the family.” We’re not allowed to be sick, we’re not allowed to take care of ourselves pretty much, I think…

Thankfully, me taking care of myself has kind of helped him as well to take care of himself.

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Cómo la resiliencia de una sobreviviente de AML le salvó la vida

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Cómo la resiliencia de una sobreviviente de AML le salvó la vida from Patient Empowerment Network on Vimeo.

La paciente con leucemia mieloide aguda ( AML ) Sasha Tanori comparte prejuicios que afectaron su diagnóstico y atención de AML. Mire mientras comparte consejos sobre cómo se defendió como paciente desatendido de BIPOC y las lecciones que aprendió. Sasha también comparte cómo lidió con los obstáculos culturales Mexico Americanos de su familia, que a menudo descartan problemas de salud y médicos en un entorno de atención médica rural que usaron su peso como una forma de despedir sus problemas de salud.

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Related Resources:

[ACT]IVATED AML Resource Guide

[ACT]IVATED AML Resource Guide en español

 AML Treatment Approaches Expand for Older and High-Risk Patients

 A Look at Lower Intensity Chemotherapy in Untreated AML

Share Your Feedback About [ACT]IVATED AML

[ACT]IVATED AML Resource Guide en español

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Download Resource Guide

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Share Your Feedback About [ACT]IVATED AML

Three Phases of AML Therapy

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What are the three phases of acute myeloid leukemia (AML) therapy for patients? In the “What Are the Phases of AML Therapy?” program, expert Dr. Eytan Stein from Memorial Sloan Kettering Cancer Center shares insight about the three phases of induction therapy, consolidation therapy, and maintenance therapy. 

1. Induction Therapy

The AML therapy phase of induction therapy is also referred to as induction chemotherapy. In this phase of therapy, AML patients can expect to receive an extremely intensive chemotherapy that they’ll need a hospital stay to receive. Even though the typical hospital stay is approximately three to four weeks, the portion of time that patients will receive the chemotherapy itself is about one week. Patients can expect to spend about another two to three weeks in the hospital as recovery from the effects of receiving the intensive chemotherapy to become well enough to return to life at home.

2. Consolidation Therapy

After the phase of induction therapy, a phase called consolidation therapy will follow for AML patients. Complete remission, or absence of disease, doesn’t always happen for all patients. So the proactive phase of induction therapy is carried out in case AML was still in a patient’s body where it couldn’t be located in bone marrow biopsies. Consolidation chemotherapy will kill any leukemia cells that remain in the body and will create a deeper remission for AML patients.

 3. Maintenance Therapy

After AML patients have received induction therapy followed by consolidation therapy, another therapy called maintenance therapy will be used to further protect them against relapse. Maintenance therapy has been used in both multiple myeloma and acute lymphoblastic leukemia (ALL) patients for a substantial period of time. The use of maintenance therapy for AML patients started within the last one or two years, and the approach of maintenance therapy is to use a reasonably non-toxic therapy that can be taken by patients over a sustained period of time to safeguard their health. 

Treatment for AML follows an established order of phases of induction therapy, consolidation therapy, and maintenance therapy for optimal patient health over the long term. If you want to learn more about AML care and treatments, check out our AML information.

What AML Mutations Are Associated With Adverse Outcomes?

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What AML Mutations Are Associated With Adverse Outcomes? from Patient Empowerment Network on Vimeo.

Which acute myeloid leukemia (AML) mutations are linked to adverse outcomes? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares insight..Learn about different mutations, treatment options, and the importance of testing.

[ACT]IVATION TIP from Dr. Daver: “Check for mutations to the frontline setting…absolutely, these include FLT3, IDH1, IDH2, TP53, and NPM1 MLL this list will likely continue to grow as we get more targeted therapies in immunotherapies and find benefit in particular subsets, but also in the relapse setting to not depend on the baseline molecular profile because the lipids actually can change. We do see AML as a multiclonal disease, and there can be emergence and escape of different clones, so to check again in the relapse for those same mutations and both in the frontline, the relapse setting.“

Download Resource Guide

See More from [ACT]IVATED AML

Related Resources:

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

AML Treatment Approaches Expand for Older and High-Risk Patients

 A Look at Lower Intensity Chemotherapy in Untreated AML

Transcript: 

Art:

Dr. Daver, what mutations are associated with adverse outcomes in AML? What are the best time points to check for these mutations, and what therapeutic options do you consider for patients or harboring these mutations?

Dr. Naval Daver:

This is very, very important, a mutational targeted therapy is probably the biggest overarching change that has occurred in acute myeloid leukemia in the last decade, and of course to implement those therapies. One has to know the mutational profile, the five big mutations that whenever I speak to my patients in clinic today that I talk about wanting to know before I embark on any therapy are FLT3 or FLD3, IDH1, IDH2, TP53, and now, more and more recently, NPM1 or MLL, actually six different mutations, cytogenetic operations, and the reason is that we do have targeted therapies for these mutations, some of these targeted therapies are already approved in the frontline setting like the FLT3 inhibitors, some of these are being evaluated in ongoing Phase III  studies like the CD47 magrolimab for TP53.

As well as the menin inhibitors now in frontline setting in combinations of intensive chemo or HMA venetoclax (Venclexta), or MLL NPM1 but I think identifying these targets and getting the patients on the right clinical trial personalized to that target for them has historically shown significant improvements, 20 to 30 percent survival improvements in FLT3, IDH and potentially for the TP53 MLL NPM-1 so definitely on newly diagnosed, I would recommend getting that information and then going on to either standard of care the drugs already approved or clinical trial that incororates that targeted therapy or immunotherapy for a target in the relapse setting the two most important mutations today, or the three most important are FLT3, then IDH as well as MLL NPM1. 

Three inhibitors like gilteritinib (Xospata) are already approved. Similarly, IDH inhibitors and combinations of gilteritinib or IDH with venetoclax  are really showing very good outcomes, even in relapse three, which about 20 years ago was a very, very, very poor outcome. T

oday, we can get up to 80 percent of these patients to remission, half of them into transplant, and a good number may have long-term survival post-transplant, so it’s very important to not mislead to an IDH1, IDH2 to a relapse setting.

And then now with the menin inhibitors we’re also looking in all our patients for MLL rearrangement, NPM1 in relapse, because this could open the door for menin inhibitor-based therapy, which again can give up to 50 percent remission and a path to transplant. Now many patients at MD Anderson who have gone through too many inhibitors, transplant and are alive and ongoing at two and three years.

So the bottom line is, it’s important you check at my activation tip for this question is it’s important to check for mutations to the frontline setting…absolutely, these include FLT3, IDH1, IDH2, TP53, and NPM1 MLL this list will likely continue to grow as we get more targeted therapies in immunotherapies and find benefit in particular subsets, but also in the relapse setting to not depend on the baseline molecular profile because the lipids actually can change.

We do see AML as a multiclonal disease, and there can be emergence and escape of different clones, so to check again in the relapse for those same mutations and both in the frontline, the relapse setting.

To try to get on to a therapy, whether it’s approved or clinical trial that incorporates those targeted therapies, which has historically shown a significant improvement in both response and long-term survival. 

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BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

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BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics from Patient Empowerment Network on Vimeo.

 How can acute myeloid leukemia (AML) disparities be addressed in BIPOC groups? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares insight. Learn about disparities, molecular profile cytogenetics, and clinical trial benefits.

[ACT]IVATION TIP from Dr. Daver: “Clinical trials are usually developed to improve and move forward the standard of care to better outcomes, as well as knowing that there are many different approaches to getting financial support through different organizations, entities and even potentially through some of the clinical trials, as well as considering becoming volunteer donors for national marrow donor programs, so you can support potential transplant for patients from those communities, which will give them a potential curative option.”

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Transcript: 

Art:

Dr. Daver, non-Hispanic Black and Hispanic patients with AML have higher mortality rates than non-Hispanic white patients despite more favorable genetics and younger age. How can we address disparities in AML among diverse patient populations?

Dr. Naval Daver:

This is a great question, and then something that I think we all need to spend more time with understanding, and now researchers started to look at the differences in molecular profile cytogenetics presentations among different ethnic backgrounds. It is definitely true that access to care has been more limited in some of these populations that you mentioned, including the Hispanic population and in the non-Hispanic Black population, and I think there are a number of things that may be causing this issue, so I think one there is definitely an economic divide, and especially for large academic centers where patients do have to travel, often stay locally for a period of time to go on the trial, this causes expense, and a lot of times,I think a number of these populations may not have had funding or they may not have the insurance that would cover that particular center. 

And so this is one of the big hurdles… second, I think that there is among us communities, sometimes more suspicion or circumspect approach to clinical trials and large academic centers thing, that’s something that hopefully we will be able to change with programs such as the and many, many others that we all are working on, because I think we actually do want to have more inclusion in clinical trials. And we do want to have a more representation of the entire population rather than just a subset.

So hopefully the understanding that clinical trials are usually done with the intent to improve the current standard of care, and randomization includes the current standard of care, and then something that we think could be added to further improve that, and often that many of the clinical trials may even be able to provide some degree of financial support for travel stay.

These could all help maybe some of these populations to access and get on clinical trials, which is one of the big goals for MD Anderson and other large academic centers and investigators such as myself.

I think the third big hurdle, of course, is that even proven extensive transplant, which still remains the most effective long-term curative approach, we don’t have as many donors for the Black and the Hispanic community proportionately than we do for the Caucasian white population. 

So I think this is another kind of call to voluntarily consider becoming a donor for the national marrow donor program, for others who are in that community, because we often do find challenges finding ideal donors, and this is a very simple procedure where it…here one, all you have to do is give us a saliva swab, mail it in.. You don’t even have to go to the clinics.

Nowadays, they log it in and if you’re ever called on, it’s just a blood collection, it’s like donating in blood, and you could save somebody’s life to be probably the easiest thing to save, somebody’s like that you will have the opportunity to do in your life.

So I think it’s really, really important that those communities also start signing up and becoming voluntary donors, so I think these are three of the kind of hurdles, of course, there are many, many others, but hopefully with the big push and impetus that’s happening across the world and across the country and across the large academic centers. In the next five to 10 years, we will see more inclusiveness and more representation of all populations proportionally in the ongoing trials and publications.

My activation tip for this is understanding that clinical trials are usually developed to improve and move forward the standard of care to better outcomes, as well as knowing that there are many different approaches to getting financial support through different organizations, entities and even potentially through some of the clinical trials, as well as considering becoming volunteer donors for national marrow donor programs, so you can support potential transplant for patients from those communities, which will give them a potential curative option.

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Challenges in Treating TP53-Mutated AML, Hope on the Horizon

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Challenges in Treating TP53-Mutated AML, Hope on the Horizon from Patient Empowerment Network on Vimeo.

TP53-mutated acute myeloid leukemia (AML) treatment has some challenges. Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares his perspective. Learn about promising treatments on the horizon for this AML subgroup. 

[ACT]IVATION TIP from Dr. Daver: “The TP53 mutation remains the most difficult subset of acute myeloid leukemia, there is hope on the horizon with new treatments such as CD47 antibodies and targeted therapies like APR that are being looked at, and also a strong consideration for allogeneic transplant in TP53, because this seems to be the only modality associated with a good chance of cure after achieving remission with one of the frontline therapies.”

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Transcript: 

Art:

Dr. Daver, what have we learned about TP53-mutated AML? And what is the takeaway for these patients?

Dr. Naval Daver:

TP53-mutated AML remains the most difficult molecular subset of all acute myeloid leukemia. Patients who have this mutation, unfortunately, do not respond well to any of the established standard care therapies, including intensive chemotherapy, the HMA alone, such as azacitidine (Onureg or Vidaza), decitabine (Dacogen) alone, or even HMA venetoclax (Venclexta) with all of these, we do see responses, especially with HMA venetoclax or intensive chemotherapy, we can see 15 to 55 percent remission rate, but the remission, very short lived, early relapses and the median overall survival across all of these currently available standards of cares are between six to 10 months.

So there has been an intense effort in the last six, seven years to develop TP53-directed therapies or therapies that will work regardless of TP53 mutation, and there are two drugs this time that are very promising and being evaluated as ongoing Phase II and Phase III studies.

One of them is an immunotherapy drug called magrolimab which seems to have very similar activity and probability with good response rates in TP53-mutated AML. This has been completed in a single arm phase 1B study in front line TP53-mutated AML where we saw close to 50 percent CR, CRI complete permission rates. And median survival was above 11 months in older unfit TP53, which is better than any survival we have seen in the past in this population.

The other study was with the oral care targeted therapy towards TP53, called APR, and this therapy was specifically designed to target the TP53 mutation, and this is being evaluated in the frontline setting in combination with a society in venetoclax. We hope that these regimens are these novel therapies, one or both of them will be able to at least incrementally improve their current outcomes in TP53.

The other area where we have really been doing a lot of research, and I think the data is suggesting, is that allogeneic transplant may work for separate, and we are routinely considering transplant in these patients in the frontline setting, once they are able to achieve remission.

My activation tip is the TP53 mutation remains the most difficult subset of acute myeloid leukemia, there is hope on the horizon with new treatments such as CD47 antibodies and targeted therapies like APR that are being looked at, and also a strong consideration for allogeneic transplant in TP53, because this seems to be the only modality associated with a good chance of cure after achieving remission with one of the frontline therapies. 

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A Look at Ongoing Acute Myeloid Leukemia Phase III Trials

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A Look at Ongoing Acute Myeloid Leukemia Phase III Trials from Patient Empowerment Network on Vimeo.

What are the acute myeloid leukemia (AML) Phase III clinical trials that are ongoing? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares his perspective about encouraging trials. Learn about the MORPHO Study and others. 

[ACT]IVATION TIP from Dr. Daver: “The maintenance with gilteritinib and the MORPHO Study, as well as the relapsed refractory study as well as the use of a e-selectin inhibitor called uproleselan, and hopefully this will lead to approval of the next batch of three or four drugs, which will further improve outcomes for frontline as well as relapsed AML.”

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Transcript: 

Art:

Dr. Daver, can you speak to some of the ongoing Phase III trials in AML, what are you most excited about?

Dr. Naval Daver:

This time there are numerous ongoing phase three in acute myeloid leukemia, some in the frontline, some in the relapse setting. In the frontline setting, the ones that I’m most excited about are trials incorporating a novel immunotherapeutic pathway called the CD47 antibody that works to activation of macrophages, these are looking at a very high-risk molecular group of acute myeloid leukemia, the TP53 in adverse cytogenetics, and there are two randomized phase threes with this agent, one focused on TP53 mutated AML looking at the azacitidine and magrolimab versus the current standard of care FDA-approved azacitidine-venetoclax (Onureg or Vidaza-Venclexta) in TP53 mutated. 

The other is actually looking at all older unfit AML so trying to improve on azacitidine venetoclax doublet with a triplet, so this is looking at azacitidine venetoclax magrolimab versus azacitidine-venetoclax placebo so if both of these trials are positive, then this will lead to incorporation of immunotherapy in the frontline setting in AML, which is exciting and something we’ve been working towards for the last 10, 15 years.

The other Phase III trials in the frontline setting or in the maintenance setting really that I’m excited about is called the MORPHO Study…this is using a FLT3 inhibitor gilteritinib (Xospata) as a maintenance post-transplant, so we know FLT3-mutated patients respond well, when they receive intensive induction FLT3 inhibitor, we still need to take them to transplant because even though the initial response is good, many can relapse. 

So we actually try to give to the cycles of intensive induction for the move to transplant, and then if we start there, we still see at about 40 percent of these patients can relapse in the next three years, so this has led to efforts to add a maintenance FLT3 inhibitor gilteritinib single agent post-transplant as a maintenance for one to two years versus placebo observation, which has historically been a standard of care, and so this is being looked at a large multi-center called the MORPHO Study that we hope to get data from in the near future.

Another study in the similar design that’s being done by the UK cooperative group is looking at maintenance with the oral azacitidine, post-transplant for non-FLT3, so similarly, can we overall improved outcomes not just for FLT3, but the general patient population is going to transplant by using the maintenance oral azacitidine post-transplant versus placebo.

And in the relapse setting, there is a very novel unique oral therapy drug called uproleselan, which is an e-selectin inhibitor, and this agent is now being combined with traditional salvaged chemotherapy such as FLAG-Ida mec versus the placebo mec plus FLAG-Ida or mec in the relapse setting.

And that’s what he’s actually been completed to enrollment, and we’re hoping to hear data from that in the near future. So these are the major randomized studies focusing on TP53, FLT3, and relapsed refractory AML  that we’re looking for in the near future and hopefully could lead to two or three more new approvals in the AML space.

My activation tip for this question is that there are ongoing numerous frontline Phase III as well as relapsed refractory Phase III, targeted immunotherapy approaches, specifically among these we’re excited about the CD47 antibodies. The maintenance with gilteritinib and the MORPHO Study, as well as the relapsed refractory study as well as the use of a e-selectin inhibitor called uproleselan, and hopefully this will lead to approval of the next batch of three or four drugs, which will further improve outcomes for frontline as well as relapsed AML. 

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What Does Triplet Therapy in AML Mean for the Future?

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What Does Triplet Therapy in AML Mean for the Future? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about triplet therapy? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares his perspective. Learn about the meaning, progress, and outlook for triplet therapy. 

[ACT]IVATION TIP from Dr. Daver: “Some of the early data with the FLT3 inhibitor as well as the CD47 antibody triplets are showing very, very promising activity and are now moving into larger multi-center and randomized studies.”

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Transcript: 

Art:

Dr. Daver, what does triplet therapy in AML mean for the future?

Dr. Naval Daver:

So when we say triplet therapy, what we’re really thinking about is building on the existing FDA-approved combination of HMA venetoclax (Venclexta), so as a background venetoclax, showed a CR, CRI which is a complete remission rate of about 70 to 75 percent with the median survival in 15 months.

This was in older patients, about 75 years in age, those who were not considered fit for intensive chemotherapy, although this was a major step forward in comparison to what we have seen with traditional low intensities with azacitidine (Onureg or Vidaza), decitabine (Dacogen) alone, we do see the three-year survival is about 25 to 30 percent. 

So this is progress compared to 10 percent long-term survival, we used to get a decade ago, but, of course, we want to improve on that. Also, a molecular analysis of data has shown that there are certain molecular subsets that don’t respond as well to azacitidine, venetoclax or if they respond they relapse quickly these include FLT3 mutated and the TP53 mutated as well as potentially MLL rearranged.

And so here we have started incorporating the targeted therapies like inhibitors like the menin inhibitors like CD47 antibodies to target those specific high-risk or bad molecular cytogenetic groups, and we are seeing that with the combinations of these three drugs, especially for those particular molecular subsets.

So azacitidine and venetoclax for FLT3 inhibitor for FLT3 mutator, azacitidine, and venetoclax, magrolimab for TP53 mutated, the response rates that we’re getting, as well as the depth of response and the early trends towards survival are looking very, very promising compared to what we have seen with azacitidine venetoclax alone.

So we believe, and I personally believe that these three drug combinations, the so-called triplets will actually be eventually the way to go forward now, that means that one has to realize that when you add a third drug, there is a cumulative myelosuppression, azacitidine-venetoclax is already a myelosuppressive regimen. 

Yes, it’s manageable, but it is myelosuppressive. And the third drug, this can become more cumulative, so we have been working for the last three, four years and continue to work on those optimization because since we are seeing true synergy but pre-clinically and what we think in the clinic, we are not needing to give full doses and we’re doing reduced durations of venetoclax and those with FLT3 inhibitor, and now we feel that some of those triplets are actually giving very, very, very good efficacy.

There’s a lot of discussion in the community of whether we need to combine all two drugs up front or can be sequence these drugs or can we introduce a targeted therapy based on a molecular escape, and I think a lot of these will have to be evaluated and many of these are being looked at in various trials, but I do think the bottom line is that bringing in your targeted therapy or immunotherapies early on in the frontline setting and some way or the other is probably where you’re going to get the most bang for the buck and the most benefit in curing patients long-term rather than trying to reserve them for the salvage, because in salvage AML historically, nothing has really been able to improve the long-term cure rate significantly.

So the activation tip for this question is that now with the identification of certain molecular subsets that have poorer outcomes with the HMA venetoclax, we have started incorporating targeted and immunotherapies in the earlier settings, either up front in the three drug combination or an early sequential approach.

And we believe that with such combinations, we may be able to achieve deeper remission and longer responses. Some of the early data with the FLT3 inhibitor as well as the CD47 antibody triplets are showing very, very promising activity and are now moving into larger multi-center and randomized studies. 

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A Look at Lower Intensity Chemotherapy in Untreated AML

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A Look at Lower Intensity Chemotherapy in Untreated AML from Patient Empowerment Network on Vimeo.

Dr. Naval Daver from the University of Texas MD Anderson Cancer Center discusses whether untreated acute myeloid leukemia (AML) can be treated with lower intensity chemotherapy.

[ACT]IVATION TIP from Dr. Daver: “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

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Transcript: 

Art:

Dr. Daver, what are we learning about patients with untreated AML who are ineligible for intensive chemotherapy? Will intensive chemotherapy, a thing of the past, in the near future?

Dr. Naval Daver:

There has been a major shift over the last four or five years towards using lower intensity combinations, such as azacitidine (Onureg or Vidaza) and venetoclax (Venclexta) and patients who are definitely about 75 and not fit for intensive induction. I don’t think anybody debates in that population, but even in patients 60 to 75 years away, you are borderline, and maybe we could give intensive induction chemotherapy and get patients to through it with support of care, antifungals, antibiotics by close monitoring, but we’re seeing similar remission rates with azacitidine (Vidaza), venetoclax (Venclexta), much less toxicity, less mortality, and especially the goal is to get a number of these patients to allogeneic stem cell transplant, which it is.

Then we feel that the lower intensity, better tolerated, smoother remission getting patients in a good condition an allogeneic transplant may be the way to go now, of course, to really make the standard of care, we have to look at this in a randomized fashion to make sure that what we believe is actually what the data is going to confirm, so there is an ongoing randomized study looking at the azacitidine and venetoclax intensity versus the traditional intensive chemotherapy called three plus seven in patients 18 to 65 years of age, and that…then you will, I think, give us a lot of information and data as for whether we can start for placing intensive chemotherapy for a large proportion or majority of AML patients, even those who are younger.

Today, I don’t think that in terms of chemotherapies are a thing of the past, I think those patients who are below 60 or even those who are 60 to 65, who are routinely doing intensive induction chemotherapy, one has to realize that the five-year survival for many molecular subsets are close to 50 to 60 percent with intensive induction chemotherapy, whereas with HMA venetoclax in the older unit, we’re looking at three to five-year survival rates of about 30 percent, so we have still not seen data and younger patients with Hamas to be convinced that this will replace intensive chemotherapy altogether, I think the signal suggests that there is a potential for it to do so, especially with the use of allergenic tensor as plan, which we’re using quite frequently and…or maintenance.

But that has not yet been established. So I would still say we do use intensive chemo in those who are young and fit, so my activation tip for this is that there has been a lot of progress in the lower intensity therapies over the last six or seven years. 

A decade ago would not even be asking whether there’s anything that can replace intensive chemo today we do have data with HMA venetoclax that suggest that it may be as good as intensive chemo looking at the response rates MRD negativity, and especially with three drug combinations where adding targeted therapies to HMA venetoclax, those response rates and depth of response looking as good, if not better, than intensive chemo there are randomized studies ongoing that are going to be looking at intensive chemotherapy versus HMA venetoclax and if those show equivalents or superiority for HMA venetoclax, I think in the next five, six years there will be a huge shift towards less use of intense and chemotherapy in the frontline setting, but we’re not there yet. 

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