Tag Archive for: AML diagnosis

How Is an AML Treatment Plan Determined?

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Dr. Daniel Pollyea explains the importance of collaborating with your healthcare team on your AML care decisions and discusses factors that guide an individualized AML treatment plan, such as age, overall health, and personal preference. Dr. Pollyea also addresses the role of common AML gene mutations when choosing therapy.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

Related Resources:

AML Treatment | Understanding Induction and Consolidation Therapy

AML Treatment | Understanding Induction and Consolidation Therapy

 An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

 AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Katherine Banwell:

When it comes to choosing AML therapy, it’s important to work with your healthcare team to identify what will be best for you. Would you walk us through the factors that are considered when choosing therapy for AML? 

Dr. Daniel Pollyea:

Sure, yeah. So, we now have options in treatments for this disease and for decades, that wasn’t the case. This was a one-size-fits-all type of disease. And in the last eight years, that has completely changed.

So, there are approaches and diagnosis that vary between very intensive chemotherapy and less intensive treatments. What we call “targeted therapies” in some cases can be considered or be appropriate.  

And so, having a sense, after learning a little bit about this, of how much would you be willing to tolerate an intensive chemotherapy regimen and all the risks inherent in that, if that’s even being presented as an option, and if so, what does that look like? And if not, hey, what are the other options if that sort of doesn’t sound like something that you would be willing to accept? So, I think those kind of probing questions.  

First, asking yourself and then sort of translating that into your treatment team, into “Hey, this is sort of how I define quality of life.  

And these are some red lines that I wouldn’t cross,” that can really help the healthcare team because, again, this is not one-size-fits-all anymore. We do have several options to consider at the time of diagnosis. 

Katherine Banwell:

What other factors would you take into consideration? Do you look at age and overall health and fitness, test results? 

Dr. Daniel Pollyea:

Absolutely. So, the relevant factors at the time of diagnosis would be, as you described, age, to some extent. And there’s no magic cutoff. “When a person is a certain age, this is no longer a treatment.” But age just gives us guidelines. Other comorbidities, other disease that you may be dealing with, things in your past, organ dysfunction; all those things are really, highly considered.  

And also, sort of your own attitude toward “Hey, would I be okay with a month-long stay in the hospital or is that something that there’s no sort of outcome that that would be okay for me to withstand?” But then, the other huge part of this are things that are sort of, at diagnosis, unknown to you and unknown to your doctor for a little bit. And those are disease factors. So, what are the mutations that make up your disease? What’s making your disease tick? And now, just with normal clinical care, we have unbelievable access to this information. We can essentially learn within a week or two every relevant mutation that’s contributing to your disease.       

And that helps us tremendously with respect to prognostication, sure, but also treatment selection because there are some treatments that will work, we think, better with certain disease biology, and other treatments that will work less well.  

And we even have targeted therapies; so, based on particular mutations or other abnormalities, sort of a rationally designed therapy for exactly that disease biology. So, that is also a huge part of treatment selection, and we call those disease factors. 

Katherine Banwell:

Why is molecular testing important following an AML diagnosis? 

Dr. Daniel Pollyea:

Right. So, this basically just gets into what we were just discussing. So, that molecular testing is the testing that will tell us all the mutations that make up your disease biology. And so, that is crucial for prognostication, but also treatment selection.  

And frankly, also when thinking about how to potentially cure your disease, those will be factors taken into account to make decisions that are pretty significant, such as should you receive a bone marrow transplant at some point in the future or not. And the reason it’s so crucial to get this done at diagnosis is, after diagnosis, we start a treatment, and hopefully we put your disease into a remission. And at that point, we no longer have access to your disease cells.  

They’re gone, or they’re too low to even measure. And so, we need to get this information at diagnosis so that we can have it later on so that we can really understand your disease and make the best treatment plan for you.  

AML Care Essentials | Health Literacy and Recommended Resources

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How can patients learn about acute myeloid leukemia (AML)? Dr. Daniel Pollyea defines AML, how the condition develops, and highlights the importance of health literacy. Dr. Pollyea also recommends resources like the Leukemia & Lymphoma Society for learning about AML and shares key questions to ask your doctor.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

Related Resources:

How Is an AML Treatment Plan Determine?

How Is an AML Treatment Plan Determined?

 An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

 AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Dr. Daniel Pollyea:

AML, acute myeloid leukemia, it’s a type of a cancer.  You can think of it as a cancer of the bone marrow, and it’s the likely result of several abnormalities, or sometimes I call them mistakes that can occur in stem cells or a stem cell in the bone marrow. And those mistakes that occur, most times, we don’t understand why they happen.

In most cases, they’re completely out of a person’s control. This isn’t something that comes on because it runs in a family in most cases, or because of something somebody did or didn’t do. These appear to be pretty random events that occur. But these mutations that occur in these sort of stem cells in the bone marrow cause a cell to become a cancer cell.  

And over a course of a variable amount of time, these can evolve and develop into this condition, AML. 

Katherine Banwell:

Okay, thank you for that. Health literacy, which is defined by the ability to find, understand, and use information for health-related decisions, is essential. Would you expand on the term “health literacy” and why it’s important to accessing quality AML care? 

Dr. Daniel Pollyea:

Yeah. So, I think health literacy in our field is a challenge, because these are acute conditions that come on oftentimes very quickly. And these are not diseases that are top of mind. Most people don’t know somebody who’s had this. They’re not common; only about 30,000 people every year in the United States will have AML. So, it’s very hard to have any sort of background in this.  

And for most patients because of the pace at which this disease occurs, it can be very difficult to sort of read up on it before meeting with a provider or an expert or a specialist. So, there’s a lot of challenges or barriers to health literacy. But like anything, the more a person knows, the more sort of empowered they can be, the more ability they have to ask questions and seek care at sort of the optimal place.  

What I find often is that health literacy is best harnessed by a patient’s team; so, in other words, their support system, their family and friends. Because it’s so much to deal with in such rapid succession, to get this diagnosis and to usually be feeling very poorly. To also be expected to sort of have read the most relevant literature and come armed with that information is often too much at the beginning.  

So, in the beginning, I think it’s best to leave that to your support system, and then as time goes on and as you start treatment, get comfortable, health literacy in our field, it becomes a more prevalent issue. And I think that when patients learn the most about how the field has evolved and where we are, the better that they can potentially do. 

Katherine Banwell:

Well, that leads us perfectly into my next question. What resources do you suggest for boosting knowledge about AML? 

Dr. Daniel Pollyea:

AML is like so many fields in medicine, but probably more so, moving so quickly that sort of the usual Google search is not going to, in most cases, bring up the most important, the most relevant information.  

So, I think that there are some organizations out there that do a really good job of educating patients. The Leukemia & Lymphoma Society is one. They have a good website.  

They have people you can contact, and they have really good information that’s available to patients and their families. That’s where I typically recommend people start. And then from there, based on our interest in education level and things like that, there can be other resources. But I think The Leukemia & Lymphoma Society’s a great place to start. 

Katherine Banwell:

Okay. Newly diagnosed patients and their care partners are often overwhelmed, as you mentioned earlier. What advice do you give them at their first appointment? 

Dr. Daniel Pollyea:

Right. So, this is a huge challenge. Anybody in the situation would be feeling like this. So, first of all, it’s sort of like, it’s okay to feel like this. It’s normal. 

It would be unnatural to not be overwhelmed with what you’re going through; that’s an important message. And then, I think there’s this period of time between diagnosis and a plan that is particularly anxiety-provoking. And so, as your doctor and their team sort of sorts through the necessary information to get a plan together, just know that that this a very anxiety-provoking time when you’re being told that you have a really significant and serious disease, and we don’t have a plan yet.

So, making sure that you sort of comfort yourself during that period, knowing that that his temporary and that is potentially the worst anxiety you will feel, I think, can be helpful. And then, from there once the plan is sort of in place and enacting it, it really is just focusing on short-term goals.  

So, instead of thinking three steps ahead and how’s the transplant going to work, in the early days, focusing on “Okay, how am I going to get into a remission?” and “How am I going to feel day-to-day? How can I feel as best I can day-to-day? What’s the best path to a remission?” And then, once you sort of meet the goal of remission, “Okay, what’s next? How are we going to cure this?” So, thinking through sort of in short bites, I think, is best. 

Katherine Banwell:

Are there other key questions that they should be asking their doctor or their healthcare team? 

Dr. Daniel Pollyea:

Yeah. Depending on the situation, this is a disease that can be cured; and so, from the first day, asking “Is that a possibility for me? Is there a curative plan for me, and what might that look like?” I think is an important question to ask from the beginning.  

Making sure you communicate your goals and your wishes, how you define quality of life, what that means to you. And in that way, that can really help inform your doctor and their team to put together a plan that sort of is most customized to you.  

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

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

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

Download Resource Guide | Descargar guía de recursos

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Related Resources:

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

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

 Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

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

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

Transcript: 

Lisa Hatfield:

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

Dr. Andrew Hantel:

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

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

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

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

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

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How Can AML Patients Benefit From Shared Decision-Making?

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

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

[ACT]IVATION Tip

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

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED AML

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Do AML Patients Receive Allo or Auto Stem Cell Transplant?

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

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

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

 How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

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

Dr. Sara Taveras Alam:

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

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

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

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

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

Lisa Hatfield:

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

Dr. Sara Taveras Alam:

You’re welcome.

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey

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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.

See More from [ACT]IVATED AML

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Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

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.

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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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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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Diagnosing and Treating AML: What Testing Is Essential?

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Diagnosing and Treating AML: What Testing Is Essential? from Patient Empowerment Network on Vimeo.

How do test results affect the diagnosis and care of patients with acute myeloid leukemia (AML)? Dr. Farhad Ravandi-Kashani reviews essential testing for AML patients, including molecular testing and what these test results might reveal about the disease.

Dr. Farhad Ravandi-Kashani is professor of medicine and Chief of the Section of Developmental Therapeutics in the Department of Leukemia at The University of Texas MD Anderson Cancer Center in Houston, TX. Learn more about Dr. Ravandi-Kashani.

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Transcript:

Laura Beth:

Dr. Ravandi, can you define molecular testing for AML patients?  

Dr. Ravandi:

We have progressed on our understanding of cancer, in general. And we have progressed in our technology, so we know that various cancers are likely caused by a number of molecular events, and this is best characterized in leukemias because we have been doing this in leukemia for many years now, simply because leukemias are much more accessible than other cancers. Leukemic cells are in blood and easily obtained and even in bone marrow, are much easier obtained than other solid tumor cancers.  

And so, we’ve been able to identify a number of gene and chromosome changes that we have discovered to be prognostic, but also, have become the targets for developing effective drugs.  

Laura Beth:

Beyond molecular testing, what other testing should take place following an AML diagnosis?  

Dr. Ravandi:

I mean, the classical patient presents because there is something in their blood counts, so they usually have had a blood count testing done. And, of course, you need to do a number of other tests, for example, the chemistry profile, because that can show us some of the problems that can be caused by leukemia.  

And the most important thing is bone marrow aspiration and biopsy, which is still, unfortunately, absolutely necessary, first to make the diagnosis, and second, to obtain the specimens for those biomarker testing that you mentioned.  

Laura Beth:

If a patient relapses, does all of this testing need to be repeated?  

Dr. Ravandi:

Unfortunately, yes. And so, when you said all of these testing, actually, again, compared to some other cancers, this is limited testing. Taking blood for the blood tests, and even doing a bone marrow is generally much easier than taking tissue in a colonoscopy for a colon cancer, or doing a biopsy, a lung biopsy in lung cancer, etc.  

But yes, they all need to be tested, and actually, we do like to repeat the genetic testing because leukemias are dynamic, and after initial therapy, they may change in ways. They may develop new targets or new molecular changes that may be potentially amenable to new targeted therapies.  

Laura Beth:

And is it common for a mutation to appear at a relapse?  

Dr. Ravandi:

It is, yes. I mean, I would say it’s – I wouldn’t say it’s common, but it is frequent.  

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health

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

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

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Transcript:

Sasha Tanori:

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

Dr. Catherine Lai:

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

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

What Questions Should I Ask If I Suspect Acute Myeloid Leukemia?

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What Questions Should I Ask If I Suspect Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

As an acute myeloid leukemia (AML) patient, what questions should a patient ask if they suspect AML? Watch as expert Dr. Catherine Lai shares tests that can help rule out AML and common symptoms that may serve as warning flags to patients.

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Transcript:

Sasha Tanori:

Dr. Lai, I think another factor that played a role in my diagnosis is somewhat being delayed is my age, I was 24 at the time, what are some questions others who suspect they have AML should ask to rule out the diagnosis?

Dr. Catherine Lai:

So, Sasha, that’s a really good question. And what I would say is that, as you are aware, the median age of AML diagnosis is 68, so not to say that we don’t have young patients…I have plenty of young patients, but it doesn’t come to…it’s not a common thing to think about in younger patients right off the bat, the other thing that contributes to that is also AML compared to other cancers is an uncommon cancer. There are only 25,000 cases of newly diagnosed in the United States per year because it’s not as common in younger patients and because it’s not that common…doctors often want to rule out other simple things rather than just going straight to a cancer diagnosis though, unfortunately, that can lead to some delays, what I would say in young patients who are healthy is that they shouldn’t have low blood counts that can’t be explained for other reasons. So I think having prompt attention in terms of if their blood counts are abnormal, to really understanding why they’re abnormal, and those are things that can be easily work up, and if all those things are ruled out, then you’re talking about doing a bone marrow biopsy I don’t like to do procedures for unnecessary reasons, but it’s one of those things that you can also…

I mean, I think if you have a physician who is the astute and is thinking about that, that you can…you can get to a diagnosis pretty quickly, I mean AML is a diagnosis in the name acute. It comes on acutely, so that means days to week, so I suspect you are probably feeling very well and over a very short prior of time felt very unwell, and you’re very in tune to your body, and that is very important because patients are smarter than we give them credit for, and so being persistent and knowing that something is wrong goes a long way. Again, I’m sorry that you had to deal with that, and I’m glad that they finally made the right diagnosis, but I think just awareness and education. While it is an uncommon disease, I think having a larger burden and strain that happens on younger patients because you haven’t been working for the majority of your life, and it takes a huge toll on what your potential is, both as a person, but economically and all sorts of things. So it’s a huge problem.

Has AML Monitoring and Treatment Changed During COVID-19?

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Has AML Monitoring and Treatment Changed During COVID-19? from Patient Empowerment Network on Vimeo.

Has acute myeloid leukemia (AML) monitoring changed during the COVID-19 pandemic? Watch as expert Dr. Catherine Lai shares how patients and caregivers were impacted in their AML care and gives advice on ways to provide optimal care for patients.

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Transcript:

Sasha Tanori:

Can you speak on how monitoring and treating AML has changed during the pandemic?

Dr. Catherine Lai:

Yeah, so, unfortunately, as you experience it, you spent your induction in the hospital for several weeks, and when you’re able to be in the hospital with support, either from friends or from family, it makes the experience much, much easier and with COVID, especially at the height of the pandemic, we weren’t allowed our hospital. And I know several of my colleagues as well, the hospitals weren’t allowing any visitors and that put a lot of stress on the patient, on family members, on the staff, the nurses, the physicians, really the whole care team. Just because we were needing to spend extra time to make sure that everybody was updated, so either if we couldn’t do it on FaceTime, having to make sure other phone calls later, which is just…it is what it is. And we made the best of the situation. Currently, we are allowing to have a limited visitor policy, which is helpful. I think the other thing that has really changed is what we consider when we’re starting treatment, if patients obviously need induction chemotherapy and need to be in the hospital, we don’t change the recommendation based on that, but if there are patients who…

There are options whether or not the patient is done inpatient versus outpatient, I think that that’s a huge consideration in terms of quality of life and how we manage those patients.

How Has Acute Myeloid Leukemia Detection Evolved Over Time?

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How Has Acute Myeloid Leukemia Detection Evolved Over Time? from Patient Empowerment Network on Vimeo.

How has acute myeloid leukemia (AML) evolved over  time? Watch as expert Dr. Catherine Lai explains detection techniques that are used,  how AML risk  assessment has changed, and how test results are used in determining treatment options.

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Transcript:

Sasha Tanori:

Dr. Lai, early on before my diagnosis, AML, many of my doctors I saw dismissed my symptoms and attributed them to me being plus-sized. Can you share with us how detecting AML has evolved over the last several years?

Dr. Catherine Lai:

Yes, and I’m sorry to hear that, but what I would say about the diagnosis is that how we diagnose patients with AML, unfortunately, hasn’t changed significantly in the sense that we still have to rely on our standard techniques with the bone marrow biopsy. But what I would say is that the technology for how we risk-stratify patients and subsequently treat patients has improved because we have a better understanding of the molecular characteristics of AML now, and so it has helped us in terms of being able to identify more targeted treatments, where patients are more likely to respond and help us with both our short-term and our long-term plan.