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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.”

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

Related Resources:

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.

Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

Un superviviente de 30 años de leucemia mieloide aguda comparte su experiencia from Patient Empowerment Network on Vimeo.

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¿Qué podrían experimentar los pacientes con leucemia mieloide aguda (AML) en cuanto a los síntomas, el tratamiento y cómo sobrellevar la AML? Art Flatau, paciente de AML y líder de Empowerment, comparte la experiencia de su trayectoria en AML desde el diagnóstico, el tratamiento y la supervivencia de AML, y los avances en los tratamientos de AML. Art también comparte sus consejos para que los pacientes y sus cuidadores reciban una atención óptima y cómo ha encontrado un sentido a sus esfuerzos de defensa del paciente.

What Promising AML Treatments Are Available for Newly Diagnosed Patients?

Related Resources:

How an AML Survivor’s Resilience Saved Her Life

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

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

Transcript:

Mi nombre es Art, y vivo en Austin, Texas. En 1992, tenía 31 años y me casé con dos hijos pequeños. Estaba en la escuela de posgrado y trabajando de tiempo completo. Durante un par de semanas, me había estado sintiendo cansado y había estado teniendo una fiebre de bajo grado. También tenía muchos moretones, probablemente porque estaba jugando rugby en ese momento. Pensé que la fatiga era porque estaba sobrecargado de trabajo y estaba durmiendo poco.

El sábado tuve un partido de rugby, pero estaba demasiado cansado para jugar más de unos minutos. Al día siguiente, estaba demasiado cansado para hacer mucho. Mi esposa y yo decidimos ir al médico el lunes.

El lunes por la mañana me desperté y había sangre en mi almohada porque me sangraban las encías. Mi esposa quería llevarme a la sala de emergencias, pero la convencí de llamar a nuestro médico. Fui al médico más tarde esa mañana. Ella notó mis síntomas, hizo un examen rápido y me envió a hacerme un análisis de sangre. Después del almuerzo, me llamó y me dijo que tenía que ir al hospital y ver a un hematólogo. Sabía que estaba en problemas.

Hablamos con el médico y dijo: «Tenemos que ver qué tipo de leucemia tienes». Qué shock. Sabía que estaba enfermo con algo que no había tenido antes. El hecho de que fuera cáncer fue un shock. No sabía que había diferentes tipos de leucemia, pero pronto descubrí que tenía leucemia mieloide aguda (AML).

Esa noche recibí transfusiones de plaquetas y glóbulos rojos. A la mañana siguiente, me hicieron una biopsia de médula ósea, me administraron más plaquetas y me operaron para ponerme una vía central. Esa tarde, menos de 24 horas después de oír la palabra leucemia en referencia a mí, empecé la quimioterapia. Todo esto era abrumador. No teníamos forma de entender cuáles eran nuestras opciones ni de obtener una segunda opinión.

Tres semanas y media después, salí del hospital sin cabello, 25 libras menos, mucho más débil pero vivo. Tuve más quimioterapia en las próximas semanas y más hospitalizaciones. Unos meses más tarde, terminé con la quimioterapia. Recuperé algo de fuerza, me volvió a crecer el pelo y traté de que mi vida volviera a la normalidad.

A principios de 1993, unos 9 meses después de ser diagnosticado, tuvimos otro susto, había recaído. Necesitaba un trasplante de médula ósea. Aunque tuvimos un poco de tiempo, unos días para averiguar a dónde ir para un trasplante, nuevamente nos costó entender el proceso. También estábamos luchando por encontrar la manera de mudarnos a Dallas por tres meses más para el trasplante. El trasplante fue una tarea larga, un mes más o menos en el hospital, un par de meses de ir a la clínica ambulatoria dos o tres veces por semana, pero lo logramos.

Ahora, 30 años después, sigo vivo. Mis hijos se graduaron de la escuela secundaria, la universidad y la escuela de posgrado y tienen carreras exitosas. Mi esposa y yo tenemos el nido vacío. Yo sigo trabajando, pero espero jubilarme dentro de unos años. Aunque me considero muy afortunado por haber sobrevivido y haber tenido relativamente pocos efectos secundarios, tengo algunos efectos secundarios con los que lidiar, incluida la testosterona baja.

Algunas cosas que he aprendido durante mi trayecto AML incluyen:

AML es una enfermedad rara: La buena noticia es que en los últimos años se han descubierto muchos tratamientos nuevos para AML. Estos nuevos tratamientos están haciendo que más personas sobrevivan AML. Sin embargo, estos nuevos tratamientos evolucionan rápidamente. Es importante encontrar un centro oncológico y médicos que traten a muchos pacientes con leucemia.
Considere la posibilidad de ofrecerse como voluntario: El trabajo de promoción es una forma excelente de ayudarse a sí mismo y de apoyar a otros pacientes y los esfuerzos continuos de investigación.
Si algo no se siente bien con su salud, defienda sus derechos y solicite más pruebas.

Estas acciones son clave para mantenerse en su camino hacia el empoderamiento.

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Patients, AML Programs, Art Flatau, Patient Stories, PEN Blog /by Kara Rayburn

Empowered AML Patient: Ask the AML Expert

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

[ACT]IVATED AML

Related Resources:

How an AML Survivor’s Resilience Saved Her Life

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday.

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock. I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through.

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters. I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include:

AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia.
Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Becoming an Empowered and [ACT]IVATED AML Patient

March 14, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Resource Guides, AML Blog ND, AML Blog TC, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, Patient Empowerment, PEN Blog /by Kara Rayburn

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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 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.

[ACT]IVATED AML Resource Guide en español

March 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Resource Guides, AML Newly Diagnosed, AML Programs, AML Resource ND /by Kara Rayburn

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How Can We Address Disparities in AML Among Diverse Populations?

February 1, 2023/in Acute Myeloid Leukemia, AML Access and Affordability, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video AA, AML Video ND, AML Video TC /by Kara Rayburn

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How Can We Address Disparities in AML Among Diverse Populations? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about care disparities? Dr. Catherine Lai from Penn Medicine discusses ethnic disparities and other factors. Learn about factors in AML care disparities and some available resources for patients to elevate their care.

[ACT]IVATION TIP from Dr. Lai: “Speak with your social worker, is there a resource that I can tap into that can help me with my care so that I can make sure that I can get the best access?”

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

Related Resources:

AML Treatment Approaches Expand for Older and High-Risk Patients

What Different AML Subtypes Are More Prevalent in Certain Demographics?

Transcript:

Art:

Dr. Lai, how can we address disparities in AML among diverse populations?

Dr. Catherine Lai:

So this is an extremely important topic. And there was a large study that was recently published out of Chicago that looked at the different hospitals in the area and to look at ethnic disparities between white and Black populations and did find significant differences. Unfortunately, I would say that there are many factors that go into this, and a large portion of it is education and resources, and so what I would say is that we…we need to, as physicians and also the community, be better about educating our patients and being able to have access to resources so that everybody can get the same treatment.

And so involving other societies who support cancer to just get the word out that we need to…that we need to be aware of the differences so that we can address them specifically and make sure that for patients who don’t have resources that we are able to provide for them. So the activation tip here is that asking about resources, but we use a lot of Leukemia & Lymphoma Society grants that help our patients get access to and lower the cost of drugs, but also will…they will also provide grants just to help with cost of living, occasionally, there are other societies that can help with ride shares, and so I think even if you don’t know the specific…the specific society that can help, just asking to speak with your social worker, is there a resource that I can tap into that can help her help me with my care so that I can make sure that I can get the best access?

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Long-Term Effects Acute Myeloid Leukemia Patients Should Know

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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Long-Term Effects Acute Myeloid Leukemia Patients Should Know from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) need to know about potential long-term effects of treatment? Dr. Catherine Lai from Penn Medicine shares insight. Learn about medical considerations for monitoring and an activation tip to help patients ensure their optimal health for the long term.

[ACT]IVATION TIP from Dr. Lai: “Make sure that you’re reporting all your symptoms, however small that they may be at your appointment, so it can be discussed in asking if it might be related to a late effect, and then also asking if there is a survivorship clinic or a program that you can be a part of.”

What Are Some Clinical Predictors for Relapse in Acute Myeloid Leukemia?

Related Resources:

What Does Transfusion Burden Mean in Acute Myeloid Leukemia?

AML Clinical Trials Critical to Treatment Breakthroughs and Improvements

Transcript:

Art:

Dr. Lai, I was diagnosed with lots more than 20 years after my transplant, and there are the long-term effects that AML patients should be aware of. What are some of those effects?

Dr. Catherine Lai:

Yeah, so that’s an extremely important question and one that is often, often overlooked, unfortunately, even just from a time constraint perspective, but I would say it depends on the type of chemotherapy and the type of transplant, whether it was myeloablative you received radiation before your transplant, but, in general, I mean things to consider or just think about, it’s a big work, and so about your heart, your lungs, your thyroid, your kidneys, and also age-appropriate cancer screening as all things that need to be taken into consideration as late effects, if you are able to…if you’re able to find a cancer center with a survivorship clinic, I think that that’s an extremely valuable resource, because not only are they able to address these medical issues, but they’re also able to address the psychosocial component as well, and just overall general well-being.

And so I think just being aware of the fact that there are late effects and the activation tip being, is that to make sure that you’re reporting all your symptoms, however small that they may be at your appointment, so it can be discussed in asking if it might be related to a late effect, and then also asking if there is a survivorship clinic or a program that you can be a part of.

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What Are Some Clinical Predictors for Relapse in Acute Myeloid Leukemia?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

What Are Some Clinical Predictors for Relapse in Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

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What do acute myeloid leukemia (AML) patients need to know about risk of relapse? Dr. Catherine Lai from Penn Medicine explains her perspective. Learn about relapse risk groups and testing that may help in determining risk of relapse.

[ACT]IVATION TIP from Dr. Lai: “Have a conversation with your provider about mutations, and do you as a patient have a specific mutation that can be…that can be tracked and also specifically what risk group on my end, what risk group am I in, because that also gives some insight as to your risk of relapse.”

Long-Term Effects of Acute Myeloid Leukemia Patients Should Know

Related Resources:

What Does Transfusion Burden Mean in Acute Myeloid Leukemia?

What Is FLT3-Mutated Acute Myeloid Leukemia?

Transcript:

Art:

Dr. Lai, what are some of the clinical predictors for relapse in AML patients?

Dr. Catherine Lai:

So, in general, predictors of relapse, some of it depends on what risk category you’re in, so whether or not you’re favorable, intermediate, or adverse risk of the adverse risk patients are more likely to relapse once in complete remission. The other thing, what I would say is that which mutations are present, a diagnosis is a good…also a good way to track and follow disease.

So if you have a specific mutation is to be able to follow that and to be able to quantify it on testing, and then be able to track to see if that increases over time as a predictor of relapse, I would say that, in general, minimal residual disease testing and these predictors or other blood-based markers are not standards.

So a lot of this is novel and is still not standard of care yet, so the activation to here is to just have a conversation with your provider about mutations, and do you as a patient have a specific mutation that can be…that can be tracked and also specifically what risk group on my end, what risk group am I in, because that also gives some insight as to your risk of relapse.

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What Are the ASH 2022 Takeaways for AML Patients?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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What Are the ASH 2022 Takeaways for AML Patients? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about ASH 2022 updates? Dr. Catherine Lai from Penn Medicine discusses updates presented at the conference. Learn about combination treatments and a study that examined the use of chemotherapy before transplant.

[ACT]IVATION TIP from Dr. Lai: “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.”

What AML Treatment Options Are Available for MRD-Positive Patients?

Related Resources:

A Look at Ongoing Acute Myeloid Leukemia Phase III Trials

What AML Mutations Are Associated with Adverse Outcomes?

Transcript:

Art:

Dr. Lai, I had a transplant almost 30 years ago for relapsed AML and was not given intensive chemotherapy to get me into remission before the transplant. What are the takeaways from the ASH 2022 meeting? Is less more when treating AML?

Dr. Catherine Lai:

Sorry, that’s a great question, and what I just like to say that it’s so great that you are doing so well, so many years after, as you know, transplant is the original form of immunotherapy and is still the only potential cure for AML. And so with that being said, with at ASH what was seen was, I think a handful of things, so what I would say is that different combinations of drugs being used, so things looking at either at novel doubles and or triplets. Meaning combinations of two or three different drugs and how toxicity is affected, there are other also novel immunotherapies that are out there, not have been as groundbreaking as transplant, and I think that there is some way to harness the immune system to make treatment more effective, we just haven’t found that. Right, chemotherapy.

And then specifically, there was a large study, a large European study that was presented as the plenary session at ASH that talked about the role of chemotherapy before transplant. And what I would say, just speaking in general, is that the new immune system that a patient gets when they get a transplant takes…the new immune system, when a patient gets a transplant, it takes some time to take over, and that new immune system is able to fight off the leukemia, and so if a patient has a slow-growing leukemia, they might not need as much chemotherapy before the transplant, because the rate at which the leukemia will grow and won’t overburden the body before the new immune system takes over.

So I think that study was very provocative and gave some insight, but I still don’t think we have the complete right answer as to what chemotherapy should be used before transplant, I think that’s really tailored to each individual patient.

And then whether or not patients need chemotherapy after transplant also depends on disease burden and status, and taking into account measurable residual disease as well. So I would say the activation tip from the ASH 2022 meeting was that 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.

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What Does Transfusion Burden Mean in Acute Myeloid Leukemia?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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What Does Transfusion Burden Mean in Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about transfusion burden? Dr. Catherine Lai from Penn Medicine explains transfusion burden for AML patients. Learn about the range of transfusion burden and advice from an expert.

[ACT]IVATION TIP from Dr. Lai: “Discuss how frequently transfusions are needed and how long you may be able to go without needing a blood or platelet transfusion with your physician.“

What Is MRD-Positive Acute Myeloid Leukemia?

Related Resources:

The Importance of the FLT3 Mutation In AML

A Look at Treatment Strategies for High-Risk AML Patients

Transcript:

Art:

Dr. Lai, what does transfusion burden mean in AML?

Dr. Catherine Lai:

Yeah, so transfusion burden is the amount of either patients’ blood that you have to receive and or platelets that you have to receive.

So when we say that somebody is transfusion-dependent, that means that they on their weekly blood checks or having to receive transfusions multiple times, whether it be twice a week or once a week, but somebody who cannot make enough blood and our platelets on their own to stay within a safe range and that they need to receive transfusions.

Typically. now, this is again specific for an individual patient, but in general, most centers use parameters such as the hemoglobin less than 7, in which they get transfused red blood cells and a platelet count less than 10,000 for platelet counts, assuming that patients are feeling well and are healthy and they’re not bleeding.

So here the activation tip would be to discuss how frequently transfusions are needed and how long you may be able to go without needing a blood or platelet transfusion with your physician.

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Assessing Untreated AML Patients Who Are Ineligible for Intensive Chemotherapy

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

Assessing Untreated AML Patients Who Are Ineligible for Intensive Chemotherapy from Patient Empowerment Network on Vimeo.

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How are acute myeloid leukemia (AML) patients assessed for intensive chemotherapy? Dr. Catherine Lai from Penn Medicine explains eligibility criteria. Learn factors that impact patient eligibility and treatment options for AML patients who are categorized as ineligible for intensive chemotherapy.

[ACT]IVATION TIP from Dr. Lai: “Talk with your physician about how they will determine whether or not you are fit or unfit for intensive chemotherapy.“

What AML Treatment Options Are Available for MRD-Positive Patients?

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Transcript:

Art:

Okay, Dr. Lai, what are we learning about patients with untreated AML who are ineligible for intensive chemotherapy?

Dr. Catherine Lai:

To define ineligible for intensive chemotherapy, I think that that is a moving target because historically, we would define patients as eligible for intensive or less intensive chemotherapy based on an age cut-off. And as the population is becoming more fit and is also getting older, what I would like to say is that we should use physiologic age, not chronologic age to determine who is eligible for intensive chemotherapy, and that is…in terms of how that is assessed, that is not uniformly done.

But, in general, it takes into account how active a patient is and what they’re able to do on a day-to-day basis, so mostly their physical function, we also take into consideration their cognitive function as well, but to a lesser extent.

So, for patients who are ineligible for intensive chemotherapy, the standard practice would be the combination of azacitidine (Onureg or Vidaza) or decitabine (Dacogen), both of which are hypomethylating agents in combination with venetoclax (Venclexta), and that combination has really changed the landscape in terms of how we treat patients, it can be given as an outpatient, so it’s much better tolerated and has fewer side effects compared to intensive chemotherapy.

So the activation tip here is to talk with your physician about how they will determine whether or not you are fit or unfit for intensive chemotherapy.

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What AML Treatment Options Are Available for MRD-Positive Patients?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

What AML Treatment Options Are Available for MRD-Positive Patients? from Patient Empowerment Network on Vimeo.

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For acute myeloid leukemia (AML) patients who are MRD-positive, what treatment options are available? Dr. Catherine Lai from Penn Medicine discusses MRD-positive concerns. Learn about recent guideline updates for MRD-positive and genetically adverse patients and key questions to ask your care provider.

[ACT]IVATION TIP from Dr. Lai: “For genetically adverse risk, it would be to have a conversation about whether or not you should be going to transplant. And for MRD-positive patients, I would say is to ask about how frequently my testing should be done to monitor for MRD, MRD-positive disease.“

What Is MRD-Positive Acute Myeloid Leukemia?

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Transcript:

Art:

Okay, Dr. Lai, what treatment strategies are available for genetically adverse risk patients, as well as measurable residual disease or MRD-positive AML patients?

Dr. Catherine Lai:

Yeah, so I’ll take those two separately. So for the genetically adverse patients, and so just also as an update in 2020, in the summer of 2022, both the World Health Organization and the European Leukemia Network, they both updated their guidelines. So it’s called WHO 2022 and ELN 2022 in terms of how we help prognostic and risk-stratify our patients.

And so for the ELN 2022, there are a handful of additional mutations that do put patients at adverse risk, and so it would be good just to know to bring up with your physician, which in risk category am I in?

And so in general, for the adverse risk patients, the long-term goal is bone marrow transplant once in complete remission. And so I would say that the initial treatment hasn’t really changed, but we are recommending more patients for transplant because there are a larger number of patients who are now in that adverse risk category.

For the MRD-positive patients, there are clinical trials that are targeted, are enrolling specifically for MRD-positive patients for the most part, once you’re in complete remission, if you’re MRD-positive, you just would continue on your current therapy. And for some patients who continue their current therapy that MRD, that MRD will eventually go away.

If they are done with therapy, it would be something that you would want to monitor very closely, and at the site at the time at which that that MRD is growing, you would want to consider re-initiating treatment, although that is not standard, so it’s a very tailored and individual discussion with your physician.

So, I say, in general, the activation tips for genetically adverse risk, it would be to have a conversation about whether or not you should be going to transplant. And for MRD-positive patients, I would say is to ask about how frequently my testing should be done to monitor for MRD, MRD-positive disease.

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What Is MRD-Positive Acute Myeloid Leukemia?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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What Is MRD-Positive Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about MRD-positive AML? Dr. Catherine Lai from Penn Medicine discusses minimal residual disease (MRD). Learn about the meaning of MRD, complete remission, and MRD testing methods.

[ACT]IVATION TIP from Dr. Lai: “Ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy.”

What AML Treatment Options Are Available for MRD-Positive Patients?

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Transcript:

Art:

Dr. Lai, what is MRD-positive AML?

Dr. Catherine Lai:

So, that’s a really good question. And to answer that question, I’m going to actually answer a different question, which is, What is the definition of complete remission? So the definition of complete remission is when we do a bone marrow biopsy, and we have less than 5 percent of those blasts or leukemia cells in the bone marrow, and that is also in the setting of a relatively normal immune system or normal other blood counts have improved, so that your neutrophil count is above 1,000, and your platelet count is above 100,000. So, MRD, which stands for measurable residual disease, means that you’re in complete remission, so you have less than 5 percent blasts, but you’re more than zero.

And we, in general, when patients who are MRD-positive, we know that if you were to do nothing, that those patients have a high likelihood of relapse. We know for the patients who are going to transplant, if you’re MRD-positive before transplant, those patients also have a higher likelihood of relapsing after transplant. And so we tend to monitor it if possible…the tricky thing is, is that there is not a standard way to measure MRD testing as of yet, the common approaches are right now are with either flow cytometry or with PCR or next-generation sequencing, if you have a particular targeted mutation that we can follow.

So your activation from that standpoint is to ask if MRD testing can be done on your bone marrow biopsy at the time at which you or after you’ve had your chemotherapy.

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What Is FLT3-Mutated Acute Myeloid Leukemia?

February 1, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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What Is FLT3-Mutated Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

Some acute myeloid leukemia (AML) patients may have an FLT3 mutation. Dr. Catherine Lai from Penn Medicine shares insight about the two types of FLT3 mutation, treatment options for FLT3-mutated AML, and progress in research

[ACT]IVATION TIP from Dr. Lai: “Ask your oncologist, if your FLT3 mutation testing was done, ask which type of mutation they have, if it’s the ITD or TKD, if they are FLT3-positive and what the drug options are available for them.”

The Importance of the FLT3 Mutation In AML

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Transcript:

Art:

Dr. Lai, what is FLT3 mutated AML and what treatment options do patients with FLT3 AML have?

Dr. Catherine Lai:

Yeah, so FLT3, FLT3 mutations occur in about 25 percent to 30 percent of patients. There are two different types of FLT3 mutations. There’s a FLT3, the ITD mutation and the FLT3, the TKD mutation. They just are there, different parts of the mutation on different parts of the cell, and so how I think about that is, if you think of a leukemia cell and each leukemias has a different color-coded flag, and so the FLT3 mutation I think of is just having a specific color coding, and while a FLT3 mutation in general does predict for a worse prognosis for patients, we do have targeted treatments. In a newly diagnosed setting, we have midostaurin (Rydapt), which is added to intensive chemotherapy for those fit enough to tolerate it.

And in the relapsed refractory setting, we have a medication called gilteritinib (Xospata), which is given as a single agent, so a chemo pill, and that was compared to all types of chemotherapy, both intensive and low intensive chemotherapy, and that pill alone and the refractory and relapsed setting was better than either of the chemotherapies alone, so we’ve made a lot of progress for the FLT3-mutated patients to the majority of those patients end up going to transplant if possible, and so there are studies that are looking at FLT3 inhibitors in the post-transplant setting to also help improve long-term survival and overall survival. So the activation tip from that standpoint, that is to ask your oncologist, if your FLT3 mutation testing was done, ask which type of mutation they have, if it’s the ITD or TKD, if they are FLT3-positive and what the drug options are available for them.

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What Are the Latest Acute Myeloid Leukemia Therapies?

January 31, 2023/in Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Newly Diagnosed, AML Programs, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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What Are the Latest Acute Myeloid Leukemia Therapies? from Patient Empowerment Network on Vimeo.

What are the latest treatments in acute myeloid leukemia (AML)? Dr. Catherine Lai from Penn Medicine discusses the increase in available AML treatments. Learn about combination therapies and treatment options for patients with IDH1, IDH2, and FLT3 mutations.

[ACT]IVATION TIP from Dr. Lai: “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.”

How Can We Address Disparities in AML Among Diverse Populations?

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Transcript:

Art:

Dr. Lai, for newly diagnosed AML patients, what are the latest available therapies?

Dr. Catherine Lai:

That’s a great question. The last, I would say, a handful of years have really seen a dramatic increase in the number of new treatment options for AML patients, specifically since 2017, the FDA has approved 10 new drugs for AML, that’s both for patients who are newly diagnosed and in the relapsed refractory setting.

And so what I would say is that we break our patients into two different categories in terms of being able to tolerate intensive chemotherapy versus non-intensive chemotherapy, and as well as looking at specifically targeted mutations that patients may have so that we can better understand the disease but also treat these patients more specifically to try to maximize efficacy while minimizing toxicity.

And so specifically, I would say for patients who have FLT3 mutations, there are drugs such as midostaurin (Rydapt) and gilteritinib (Xospata), there are drugs for mutations in IDH1 and IDH2, enasidenib (Idhifa) and ivosidenib (Tibsovo) and recently, or in December of 2022, olutasidenib (Rezlidhia) was also approved for IDH1-mutated patients as well.

We have a general targeted agent that’s an oral chemotherapy that probably has made the biggest difference in how we treat patients called venetoclax (Venclexta), and that’s used in combination with azacitidine (Onureg) or decitabine (Dacogen), or low dose cytarabine (Cytosar).

Although most commonly in the United States, we use azacitidine or decitabine in combination with the venetoclax, and that I think is really what I’d say has been practice changing for the most part, in terms of both increasing the complete remission rates as well as the overall survival for these patients. So I would say there are a lot of new drugs. It is all very exciting.

The biggest activation tip in terms of takeaways is to 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.

Art:

Okay. Dr. Lai, what are the latest approaches to combination chemotherapy to treat AML?

Dr. Catherine Lai:

So, the latest approaches for combination chemotherapy would be in the combination of a hypomethylating agent, azacitidine or decitabine in combination with venetoclax. This is the most practice-changing combination that has been approved since 2017 to 2018, and now more recently, what’s been happening is now looking, so we call that a doublet, and now it’s been looking at…what we’ve been studying is now whether or not triplets are more effective, when we do have triple combinations, we do see an increase in toxicity and so on, we haven’t come up with the right algorithm in terms of what that exact formula should be, but often I think about it in kind of a three-fold in terms of wins the right time, what’s the right combination, and how do we see in the drugs, and I think the sequencing is the biggest thing that we don’t yet know, and how do we combine the two different..two different drugs in a way, and how do we give them in a way that will maximize efficacy, will minimize the toxicity, so as an example is, Do we give two drugs for a specific period of time, and then after some determined time point, do we…

And change it to a different set of combination of drugs to make sure that patients are getting the most benefit of the drugs, and we don’t know that yet, but I think that that’s where the general direction…where the landscape is heading, so the activation tip I would take home from this is just to have a conversation with your physician about potential clinical trials and how combination therapies are being used.

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