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Genetic Testing in AML: What Are Doctors Looking For?

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Genetic Testing in AML: What Are Doctors Looking For? from Patient Empowerment Network on Vimeo.

Dr. Pinkal Desai, from Weill Cornell Medicine, discusses the genetic testing required in AML, including mutations and changes in chromosomes that are being identified, and how these results can impact risk and prognosis.

Dr. Pinkal Desai is an Assistant Professor of Medicine at Weill Cornell Medical College and Assistant Attending Physician at the New York-Presbyterian Hospital. More about this expert here.

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Transcript:

Dr. Pinkal Desai:         

So there are several genes that we look for, but the most important ones from a standpoint of choosing treatments and monitoring, the first one would be FLT3. There are two kinds of FLT3 mutations, ITD and TKD; both can have different drugs that target them.

This is relevant because some of the upfront management, even when we choose – in younger patients, for example, when we are choosing chemotherapy, there are approved FLT3 agents that can be added to the chemotherapy. For example, Midostaurin, that’s a FLT3 inhibitor; we use that, and it’s important to know the FLT3 results, and preferably within 48 hours from the diagnosis, in order to choose the right treatment.

The other mutations that are relevant are IDH1 and IDH2. Both of them have approved targeted treatment against them, so depending on the clinical scenario of the patient, whether it’s new diagnosis or a relapse, these mutations are important to test, and the same for FLT3 as well.

I want to clarify here that sometimes the molecular mutations are absolutely important at diagnosis, but some of these mutations are also important to be retested in people who have relapsed because it’s not always the case that what is present at baseline may be the same at the time of relapse.

It’s possible that the clone is different, so some of these targeted mutations against which we have drugs, like FLT3, IDH, we need to test these mutations at relapse to make sure that we’re not missing them, particularly if they were present at diagnosis. The other mutation that is also relevant is TP53 because there are ongoing clinical trials that are targeting against these mutations, so the relevance of mutations are not only important in approved agents, but also in the ongoing clinical trials that are targeting these mutations.

 NPM1 is the other important mutation that is important in risk profiling, as well as monitoring over time to see if we can anticipate relapse or do something about it in the future.

There’s a laundry list of other mutations, but these are – I don’t think that patients should get lost into the individual mutations at the beginning. I think the relevant point here is that all of these need to be sent, and once the panel comes back with all of these mutations, then it’s time to sit down and go through, “Okay, the patient has FLT3, NPM1, plus some other mutation. What does that mean for me?” I think that’s what the patients should be asking. “Okay, I got these three mutations. I have these four mutations. Tell me how this is going to impact my care and my chances of survival?” I think that’s the most important thing.

Everybody’s leukemia is different. It’s more than a mixed bag; it’s actually unique to patients. Someone’s profile and genetic signature is different than someone else’s.

It’s important that every mutation is actually dealt with in relation to the other because it’s not just the presence of individual mutations, but the combinations of all of these mutations that are high relevant in figuring out whether this is important in the future or not. 

Why Should AML Patients Undergo Genetic Testing?

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Why Should AML Patients Undergo Genetic Testing? from Patient Empowerment Network on Vimeo.

AML expert, Dr. Pinkal Desai, explains the necessity of genetic testing when AML is diagnosed, including an overview of relevant tests and how results can affect prognosis, risk factors and treatment.

Dr. Pinkal Desai is an Assistant Professor of Medicine at Weill Cornell Medical College and Assistant Attending Physician at the New York-Presbyterian Hospital. More about this expert here.

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Transcript:

Dr. Pinkal Desai:         

So the reason that genetic testing is important and the patient should go through genetic testing after a diagnosis of AML, there are several reasons, actually, and we’ll go one by one. But before I go there, I want to clarify that genetic testing in AML does not mean that we’re testing for whether the patient inherits this mutation or genetic abnormality.

This is actually a mutation or genetic damage in the leukemia cells and not in the patient’s body elsewhere, so it’s important; this is a tumor-defining test and not meant to actually figure out whether this is inherited or not because most AML is actually not inherited. The other part that I want to focus on is that this testing, genetic testing or molecular testing or molecular profiling of leukemia, as we call it, is different than cytogenetics. Sometimes patients can be a little bit confused between what is molecular profiling and what is cytogenetics. Cytogenetics are big DNA or big changes in the chromosomes, while molecular mutations are single point gene mutations, which requires a much more detailed analysis of the leukemia cells.

The reasons that this testing is important, and the other part of it is that it’s just not after; it’s actually during the whole process of diagnosis of AML. If AML is suspected, then it should be done on the diagnosis bone marrow at the time when we’re drawing the blood. Otherwise, many times patients have to repeat a bone marrow biopsy to get this testing. So if something is already suspected that we are gonna maybe find leukemia, this should be done at the time of diagnosis. The first reason, which is the most important, is that when we do this molecular testing there’s a set of genes that we test. It’s 200s, 300s; every panel is a little bit different, but generally have the best components that we care about in the AML diagnosis.

There are targeted treatments against some of these mutations, and it’s important to know these mutations before the treatment begins. Not all mutations will change the way the treatment is designed, but there are certain mutations like FLT3, IDH, where it might matter as to what you choose as the frontline or the first line treatment, so it’s important that we actually get these results, at least some of these results, by the time we decide to choose the right treatment for the patient.

The second reason this is relevant is when patients go through AML induction or the first line treatment, the goal of which is induce remission, once they are in remission, the work is not done. There are several other things that we have to do and more treatments that are designed based on this molecular testing.

For example, depending on the molecular testing and the cytogenetics or the chromosomes, we profile patients as low risk, intermediate risk, or high risk. This risk means what is the likelihood that this leukemia will come back in the future, and how would that impact the patient’s survival? Some of the post-remission treatments are designed to change depending on the results of these mutations, so it’s important to actually know this at diagnosis because then the patients would go into remission, and yet we have to make a decision on what kind of best treatment to give post-remission in order to make sure that the patient is cured, or we maximize the chance of cure in this patient.

So the kind of chemotherapy, whether to transplant or not transplant, all of this is dependent on the molecular mutations. The third reason, which is becoming more and more relevant now in AML, is some of these mutations can be monitored over time.  

 It’s a much detailed testing to know the kind of remission or the extent of remission that they patient achieves, and you can actually follow these mutations over time, even in remission, to know that – is the molecular mutation zero, is it 0.2%? This is a very upcoming field in AML, and the idea of monitoring these mutations is relevant because if you have a mutation, can you do something about it post-remission? Would that alter some of the treatments? Would that help us anticipate if a relapse is coming before the actual clinical relapse happens and the blood counts go abnormal? Can we anticipate is this patient likely to relapse, for example, six months later, and could you prevent these relapses?

These are all the reasons why these genetic testing or molecular profiling of leukemia is highly relevant in the field of leukemia. We all cannot even make a decision anymore without having this full panel. 

AML Genetic Testing Explained

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AML Genetic Testing Explained from Patient Empowerment Network on Vimeo.

 Acute myeloid leukemia, or AML, has many subtypes and understanding your individual disease is key to accessing personalized therapy. Learn about the role that genetic testing plays in guiding your AML treatment options in this explanatory video. Want to Learn More? Download Your AML Navigator Resource Guide, here. 

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Transcript:

Acute myeloid leukemia, or AML, is a complex cancer that begins in the bone marrow.

Not all AML patients have the same disease. AML has many subtypes and understanding YOUR individual disease and subtype is key to accessing personalized therapy.

How can you learn more about your AML?

Genetic tests can provide more detail about your specific AML

These tests use laboratory approaches to identify changes in chromosomes, genes or proteins. A gene mutation is an abnormal change in a gene’s DNA sequence.

The results of genetic tests can inform your prognosis and treatment options.

The types of genetic tests that physicians use for patients with AML include:

  • Cytogenetic Analysis (or Karyotyping)
  • Fluorescence in situ Hybridization also known as a FISH test
  • Molecular Testing, which includes:
    • Polymerase chain reaction – PCR for short
    • DNA sequencing;
    • and Next-generation sequencing

Your healthcare team can help decide which test is best for you.

Genetic test results are used to identify genetic mutations that determine your specific AML subtype and help your healthcare team to better understand your prognosis, treatment path and assess how well therapy is working.

Once you have your results, there a number of targeted therapies currently available for AML.

Targeted therapies block the growth of cancer by interfering with specific molecules involved in the progression and spread of cancer. 

Targeted therapies include a class of treatment called “Inhibitors.”   AML Inhibitor therapies that target a genetic mutation include FLT3 Inhibitors and IDH Inhibitors.

Novel inhibitor therapies that are used across all mutational subtypes of AML include BCL-2 inhibitors and hedgehog inhibitors

Research is moving quickly in this field as new treatments are being studied to target genetic mutations in AML and other diseases.

How can you take action?

First, make sure you seek the opinion of an AML specialist. Discuss which tests you should undergo and review the results with your doctor. Educate yourself by doing some of your own research on the findings then collaborate with your healthcare team to determine a personalized treatment plan for your AML.  Finally, follow-up with your doctor regularly to understand when you should be re-tested.

Want to learn more? Start here.

AML Symptoms at Diagnosis

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Dr. Daniel Pollyea reviews the criteria for an acute myeloid leukemia (AML) diagnosis, including symptoms such as fatigue, rash and anemia, and goes on to address the importance of seeking treatment quickly following a confirmed diagnosis.

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. 

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Transcript:

Ross:

How easy is it to diagnose AML?

Dr. Pollyea:           

Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.

So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.

In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.

Ross:

This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?

Dr. Pollyea:                 

Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.

So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.

Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.

Ross:

You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?

Dr. Pollyea: 

That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.

Ross:                          

How important is early diagnosis?

Dr. Pollyea:                 

Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.

I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.

So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.

AML Causes and Risk Factors

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Dr. Daniel Pollyea provides an explanation of acute myeloid leukemia (AML)  causes and risk factors and addresses the rumored associations to weed killer, X-rays and benzene.

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. 

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Transcript:

Ross:

Dr. Pollyea, let’s start out with the basics. What are the causes of AML?

Dr. Pollyea:    

So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.

And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.

And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.

And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.

Ross:                                          

What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?

Dr. Pollyea:                           

Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.

So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.

We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.

Ross:                                          

Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?

Dr. Pollyea:                           

So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.

So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.

So, that’s the challenging balance.

Ross:                                          

Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?

Dr. Pollyea:                           

I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.

We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.

So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.

I know that’s not a satisfying answer, but at the moment that’s the best answer we have.

Ross:                                          

And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML. 

Dr. Pollyea:                           

Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.

But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.

We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.

Ross:                                          

Autoimmune diseases, such as arthritis, can they increase the risk of AML?

Dr. Pollyea:                           

Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.

It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.

But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.

Ross:                                          

Is formaldehyde exposure another risk factor for AML?

Dr. Pollyea:                           

Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.               

Ross:                                          

What’s the difference between a risk factor for AML and a cause of AML?

Dr. Pollyea

Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.

Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determination.

What Causes a Gene Mutation?

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Dr. Daniel Pollyea, an acute myeloid leukemia (AML) expert, describes gene mutations and potential reasons as to why they may occur.

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. 

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Transcript:

Ross:                          

You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML? 

Dr. Pollyea:                 

That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.

And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”

These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.

Is AML Genetic?

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Dr. Daniel Pollyea discusses the relationship between acute myeloid leukemia (AML) and genetics and addresses if the disease could be inherited within a family.

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.

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Transcript:

Dr. Pollyea:

So, this is a disease of the genome. So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?

For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.

But the vast majority of people with this disease d  id not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.

Assessing Credible AML Resources and Identifying Research Scams

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Dr. Daniel Pollyea shares advice on vetting credible acute myeloid leukemia (AML) resources and provides words of warning related to potential clinical trial scams.

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. 

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Transcript:

Ross:                          

You know, when you find out something like this, your tendency might be to jump on the web and start searching for AML. How do you vet those sources that you look at? How do you figure out that their – what would be a sign that they’re bogus sources?

 

Dr. Pollyea:                 

Yeah. I mean, I think this field is so rapidly changing and the treatment that we have, that I would, for the most part, assume that what you’re finding on the web is not relevant and is not an up-to-date resource. So, the resources that I listed, the NCCN, UpToDate, the Leukemia & Lymphoma Society, I should mention.

A very important resource that has up-to-date information, and they have even phone numbers for patients and their families to call to get connected with the proper people in a particular city, so that is a really important resource. But I’d be really, really cautious about what you find on the internet because things are changing so fast in this field. There’s a lot of outdated and misinformation on the internet.

 

Ross:                          

Well, then there’s outright scams. One of the things you mentioned before we went on is be cautious if someone’s asking you to put money upfront, or if it’s a nonmedical facility. What are some things that people should watch out for?

 

Dr. Pollyea:                 

Yeah. So, one of the things that is so important in our area is clinical trials and participating in clinical trials. Patients who opt to do this and receive experimental therapies can sometimes get the treatment of the future, get a drug that’s not currently available through the FDA, but may have a lot of promise.

And this is the way that we fight this disease. We’ve recently had an onslaught of approvals for AML and that’s because the patients being willing to participate in sanctioned clinical trials. So, participating in a sanctioned clinical trial is crucial, and it’s always a recommendation of all leukemia doctors.

When you participate in a conventional clinical trial, you’re asked to sign a consent form that explains what you’re doing and why. There is a confirmation that this has been vetted by an institution’s regulatory board that is prioritizing the safety and well-being of you, the patient. This has been approved by the FDA as a clinical trial. Nobody would ever ask you to pay money. That’s not ethical to participate in a clinical trial. Insurance covers whatever standard of care. And the clinical trial covers anything that isn’t.

So, if you find yourself in a situation where you’re not being asked to sign a consent form, where a clinical trial has not been reviewed by a regulatory board, where your doctor is not a leukemia specialist, where the FDA has not sanctioned the treatment, all of those are alarm signs.

Because there are people out there that are preying on patients in a desperate situation, a very difficult time in their life, and giving them sort of false hope and leading them down paths that are not legitimate.

One easy thing to do to sort of check to see if a clinical trial is legitimate is to go onto clinicaltrials.gov.

This is a resource set up by our national healthcare system that now feeds in every legitimate clinical trial from all over the world, needs to be registered on clinicaltrials.gov. So, if you can’t find your clinical trial on clinicaltrials.gov, I would have a lot skepticism and caution about that.

What is Personalized Medicine?

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Dr. Elizabeth Bowhay-Carnes defines the often-misunderstood term “personalized medicine” as it relates to your genetic testing results and treatment decisions.

Dr. Elizabeth Bowhay–Carnes is Director of the Adult Non-Malignant Hematology Program and Co-Director of the Adolescent/Young Adult Oncology Program at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center.

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Transcript:

Dr. Elizabeth Bowhay-Carnes:

When doctors or people within the medical community use a term called personalized medicine, specifically we’re talking about some advanced testing that can be done on a patient’s DNA. Usually, this is talking about a specialized test that is called next-generation sequencing, and that particular test, next generation sequencing, is a technology that allows us to look deeper into a particular patient’s DNA or problems within the DNA of the cancer cell.

We then try to pick treatment options that match that patient’s particular problems with the DNA of their cancer cell. So, you will sometimes hear this particular technology referred to as personalized medicine, and usually we’re talking about next generation sequencing.

Advice for Newly Diagnosed AML Patients

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Dr. Daniel Pollyea lists key advice for people recently diagnosed with AML, encouraging patients to remain optimistic and lean on family and friends for support.

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.

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Transcript:

Ross:                          

What advice do you have for people when they’re first diagnosed? What are the first things they should try to do?

 

Dr. Pollyea:                 

Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.

And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.

I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.

We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.

All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.

Finding Resources & Support in AML: A Patient Perspective on Giving Back

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Casey Marsh, an AML patient advocate, shares advice on the importance of identifying resources and support when faced with a serious diagnosis, including her experience in connecting with The Leukemia & Lymphoma Society.

Casey Marsh is an AML survivor and patient advocate. Casey is giving back by volunteering for The Leukemia & Lymphoma Society and has been selected as Houston’s honored hero for the 2019 Light the Night.

See More From the The Pro-Active AML Patient Toolkit

Related Resources

Casey Story

An AML Story: Casey Shares Her Stem Cell Transplant Experience

 Why Speaking Up Matters

Why Speaking Up Matters: Tips from an AML Advocate

 Positivity

The Power of Positivity: Advice from an AML Patient

Transcript:

 Casey Marsh:  

If people with AML are seeking for any type of resources of support, I would highly recommend going to their healthcare team first for any local suggestions that they provide. So, going to your team, that opens up the doors to communicating about these types of resources that you can find. So, for instance, myself, I was communicating with one of my nurses, and through that nurse, I found out about the Leukemia and Lymphoma Society. And once they had given me that information about them, they actually reached out to me first. And from reaching out, they were able to establish that relationship, and then you may ask a lot more questions that you might’ve had or that you think of. And going through them actually opens the doors to an enormous amount of resources and support.

Now that I’ve been in my recovery for almost a year, I’m really investing myself in trying to give back. So, by doing that I have volunteered and teamed up with the Leukemia and Lymphoma Society to actually help them fundraise a lot of this money in awareness to people fighting leukemia and lymphoma. So, once I actually was discharged from the hospital last year, my husband and I celebrated our first wedding anniversary at Light the Night for the Leukemia Society. And ever since that, I have been drawn more and more to the program and what they offer to people.

So, I have actually been selected as Houston’s honored hero for the 2019 Light the Night, and I have also finished my official training to become a Leukemia and Lymphoma Society volunteer where I actually get to reach out to patients that are going through exactly what I went through.

So, I feel like going through all this a year later, this is where I’m supposed to be, and that’s to be giving back and educating people that are going through something similar to what I went through.

Fact or Fiction? AML Treatment and Side Effects Program Resource Guide

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AML Treatment and Side Effects Resource Guide

Fact or Fiction? AML Treatment & Side Effects

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AML expert, Dr. Jessica Altman, debunks common AML treatment and side effect myths and shares tips for identifying credible resources and information. Download the accompanying resource guide HERE.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See More From The Fact or Fiction? AML Series

Related Resources

Fact or Fiction? AML Causes and Symptoms

Key Genetic Testing After an AML Diagnosis

 Why Should You Become Educated about Your AML?

Why Should You Be Educated About Your AML?

Transcript:

Patricia:                      

Hi. Welcome to Fact or Fiction: AML Treatment and Side Effects. First, thanks to our partners – the Leukemia and Lymphoma Society and the Aplastic Anemia and MDS International Foundation.

On today’s program, we’ll debunk some common misconceptions about AML treatment and side effects. I am your host, Patricia Murphy. Joining me today is Dr. Jessica Altman. Dr. Altman, get us started by introducing yourself. Tell us a little bit.

 

Dr. Altman:                       

Hi. First of all, I want to thank you all for being here and joining us, and it’s an absolute pleasure for me to be here with you. My name is Jessica Altman. I direct the Acute Leukemia program at Northwestern University in Chicago, Illinois.

 

Patricia:                      

Thanks so much, Dr. Altman. And just a reminder to our viewers and listeners, this program is not a substitute for medical advice so please refer to your healthcare team.

Dr. Altman, let’s talk a little bit right now about treatments that are currently available for AML. What kinds of things might patients want to familiarize themselves with?

 

Dr. Altman:                       

So, we are at a point in AML therapy where there’s not just one choice of treatment.

There are a number of choices that depend on patient characteristics, disease characteristics, and patient goals. So, there’s a lot that the physician with their patient and family members take into account and consider when they’re coming up with a therapeutic strategy.

 

Patricia:                      

So, give us a couple of examples. Chemotherapy is one way to treat AML, correct?

 

Dr. Altman:                       

Correct. So, the treatments all stem from a chemotherapy backbone. And there are more intensive chemotherapy regimens that usually involve a long, in-patient hospitalization and less intensive chemotherapy regimens. Those chemotherapy regimens can sometimes be combined with targeted therapy based on the genomic structure or the mutations present in leukemia cells.

 

Patricia:                      

Stem cell transplant is also an option as well?

 

Dr. Altman:                       

Stem cell transplant is an option that is utilized ideally after the leukemia is in remission as a way of maintaining disease control.

And for some patients, that is the best approach for a curative option, and some patients’ leukemia does not require a stem cell transplant.

 

Patricia:                      

Clinical trials available as well for AML, doctor?

 

Dr. Altman:                       

So, we feel very strongly that the best treatment strategy for most patients is a well-designed, appropriate clinical trial for all phases of AML therapy. It’s because of research and clinical trials over the last number of years that we have had advances and more approvals for the treatments of Acute Myeloid Leukemia.

 

Patricia:                      

So, when you’re talking with your patients, what kind of things are you considering when determining how to best treat AML?

 

Dr. Altman:                       

So, that’s a great question. This is something that is the basis for the entire conversation that I have with my patients and their family members.

I consider patient goals and patient fitness, other medical conditions, and a lot about the biology of the leukemia. If someone has an acute leukemia that is expected to be highly sensitive to intensive chemotherapy, then that is something that we want to think about. Versus if the patient has a disease that is not expected to be as sensitive to intensive chemotherapy, we frequently like to consider other alternatives in that space.

 

Patricia:                      

So, in terms of options, as a patient what kind of things should I be thinking about when I’m working with you as my doctor about what the best treatment for me might be going forward?

 

Dr. Altman:                       

So, I think the goal of the initial meetings and the initial consultation between a patient and their healthcare provider is to explore those things. We take a detailed history, understanding patients’ other medical issues. In addition to that, the social history and patients’ goals are very important, as things are not always a yes or no.

They’re not dichotomous choices. And to be able to understand a patient’s goals, and for the healthcare provider to be able to explain what the intent of treatment is helps both parties come to the right decision for that individual patient.

 

Patricia:                      

Can you talk a little bit about targeted therapy?

 

Dr. Altman:                       

Absolutely. So, targeted therapy – while meant to be specific, because a target is meant to be specific – targeted therapy has become a relatively broad characterization of additional treatments. We think about targeted therapy as the addition of agents that specifically inhibit or target an abnormality associated with the leukemia. The most prominent targeted therapies right now involve specific mutations seen in Acute Myeloid Leukemia.

For instance, about 30% of adults who have newly diagnosed AML will have a mutation in something called FLT3, or F-L-T-3. There is now an approved drug that is combined with standard intensive induction chemotherapy that improves the response rate and overall survival in adults with AML with a FLT3 mutation. In addition, there is now an approved agent for relapsed and refractory FLT3 mutating leukemia.

 

Patricia:                      

What about molecular testing? What can you say about that?

 

Dr. Altman:                       

So, molecular testing is part of the workup for an adult or a child when they’re newly diagnosed Acute Myeloid Leukemia. And molecular abnormalities look for specific known mutations that occur in Acute Myeloid Leukemia cells.

[00:07:01]                  

For instance, that FLT3 that I mentioned. In addition, the IDH mutation. Looking for those mutations has always been important in understanding the prognosis, but it’s now especially important because some specific mutations, we have additional therapies that we can give as part of initial treatment or for relapsed disease that target those mutations. So, not only do they have a prognostic role, but they have a treatment impact as well.

 

Patricia:

Dr. Altman, let’s talk about some AML treatment myths floating around. I’ll throw some stuff out there, you let me know if you’ve heard this. “Leukemia is one disease.”

 

Dr. Altman:                       

So, I have heard that. Leukemia is actually a number of different diseases, and it’s very heterogenous.

There are acute and chronic leukemias. The acute versus chronic really depends on a couple of factors. The biologic factor is the presence or absence of 20% loss or more in the bone marrow, but that also coincides with how patients present clinically. Acute leukemias tend to present more acutely, more rapidly. And chronic leukemias tend to be a bit more indirect. And the treatments are very different for those entities.

There are also myeloid or lymphoid leukemias, so there’s Chronic Myeloid Leukemia and Acute Myeloid Leukemia and Chronic Lymphocytic Leukemia and Acute Lymphoblastic Leukemia. So, those are the four major categories. We’re talking about Acute Myeloid Leukemia today. Within Acute Myeloid Leukemia, there are multiple different types of Acute Myeloid Leukemia that are really now best categorized by history – patient history – and the molecular and cytogenetic abnormalities of the disease.

 

Patricia:                      

Now, we’ve already learned about a bunch of them. So, “There are limited treatment options” is definitely a myth. Correct, Dr. Altman?

 

Dr. Altman:                       

So, we have had a major growth of the number of treatment options available for Acute Myeloid Leukemia really in the last couple of years. It’s been a very exciting time for practitioners and for our patients that we have now a number of new therapies. So, there is not just one treatment available. In fact, the conversation regarding treatment options becomes quite extensive with patients and their families, because there are choices. And that’s why consideration of goals in the intent of treatment becomes even more important.

 

Patricia:                      

Here’s another one: “Stem cell transplant – the only chance for cure.”

 

Dr. Altman:                       

Okay. So, that is also a myth. There are certain types of Acute Myeloid Leukemia where stem cell transplant is the most appropriate treatment once the disease is in remission if the goal of the patient is of curative intent. Stem cell transplant is not appropriate for every individual, and for some types of Acute Myeloid Leukemia, stem cell transplant is not considered.

 

Patricia:                      

What kinds of things do you think about when you’re considering a stem cell transplant with a patient?

 

Dr. Altman:                       

So, again, I go back to patient goals and understanding their goals of treatment. A stem cell transplant is among the most medically intensive procedures that we have. It is also not just a treatment that occurs over a short time. While the actual transplant is a relatively limited hospitalization and the administration and infusion of stem cells and preparative chemotherapy, it is something that can continue to have side effects and alterations in life quality that can persist for months to years afterwards.

So, that’s one aspect of things that we talk about regarding stem cell transplant. And really understanding what the benefit of transplant is in terms of a survival advantage, versus what the risk and the cost in terms of toxicities are. And that’s the basis of a lot of the conversations we have.

 

Patricia:                      

Sure. Here’s one more: “AML patients require immediate treatment.”

 

Dr. Altman:                       

Sometimes AML patients require immediate treatment, and sometimes they don’t. And that depends on the biology of the disease. How high is the white blood count when the patient comes in? What are the best of the blood counts? Is the patient having immediate life-threatening complications of their acute leukemia?

And there’s some forms of acute leukemia that require immediate therapy to prevent complications, and there’s some forms of acute leukemia who present an extreme distress from their disease, but there are many patients who present with acute leukemia, and we have time to get all of the ancillary studies back – the studies of genetics and the molecular studies1 – to help further refine the conversation, and further design an appropriate treatment strategy.

 

Patricia:                      

What else? What do you hear from your patients that you feel is maybe a misconception or something they’re not quite understanding about the AML?

 

Dr. Altman:                       

So, I think one of the biggest things that I would like to mention is that response rate and cure are not the same. So, it is possible for one to be treated for Acute Myeloid Leukemia and the disease to enter remission, and yet still not be cured of their disease.

Acute Myeloid Leukemia is a disease that frequently requires additional cycles of treatment or a stem cell transplant after the initial induction therapy to be able to have the best chance for a long-term cure. So, response and cure are not the same thing.

 

Patricia:                      

What about clinical trials? What common misconceptions do patients have about enrolling in trials?

 

Dr. Altman:                       

So, I think the misconceptions regarding clinical trials can be very masked. And I think it really depends on the intent of a clinical trial and the phase of the clinical trial. I think that a well-designed clinical trial is almost always the right choice for a patient with acute leukemia at any stage in their therapy.

That is a bias as a clinical trialist. I think it’s the right bias, but it is still my bias. I think patients frequently worry that they’re being treated as a guinea pig, or they’re not getting an appropriate treatment. What I can tell you is the clinical trials that we and my colleagues across the country and across the world participate in are clinical trials where the patients are getting at least what we consider a standard of care for that phase of their disease, and they may be getting something in addition to that or something that is slightly different, but expected to have a similar response rate.

We have this phrase in clinical trials, something called equipoise, that if there’s a randomization between options that we need to feel, as the practitioner and as the clinical trialist, that each option is at least as good as the other. 

 

Patricia:                      

That kind of goes back to the vetting of treatments before they go to a clinical trial. Tell me a little bit about history. How can we make patients feel more comfortable?

 

Dr. Altman:                       

I want to make sure that I understand the question.

 

Patricia:                      

So, how thoroughly are treatments vetted before they go to a clinical trial?

 

Dr. Altman:                       

Great. So, the way that agents get into early phase clinical trials and then later phase studies are these are compounds that have been studied in the laboratory, then studied in small animals, then larger animals. And then, frequently, a drug is started in a patient with relapsed and refractory Acute Myeloid Leukemia and found to be safe – that’s what we call a Phase I study.

Once we know the right dose and the associated side effects from an early phase clinical trial, later phase studies – i.e. Phase II, where the goal is to determine the efficacy and response rate is conducted. And then, if that appears and looks like it’s promising, a larger, randomized, three-phase study is frequently conducted, where we compare a standard of care to the new approach.

 

Patricia:                      

So, patients should be comfortable that the clinical trial that they’re going through has been thoroughly vetted, has gone through multiple stages before human trials occur?

 

Dr. Altman:                       

No. 1, that is accurate in terms of compounds get through animal studies, and then depending on the way that the trial is being connected, will then be studied in patients either with relapsed or refractory disease or very high-risk disease. But it’s also very important to mention that these pharmaceutical companies and physicians are not making these decisions alone.

The clinical trials are all reviewed by scientific review committees through the cancer centers, which are other investigators making sure that everything appears appropriate. In addition, there are institutional review boards at every university whose goal it is to keep patients and research subjects in well-done clinical trials safe. That is their primary goal. And the IRBs – institutional review boards – are very involved with making sure that clinical trials are appropriate and that the conduct of clinical trials is appropriate.

 

Patricia:

Great. We have a listener question, a viewer question. Steve wrote in, he says, “My AML was diagnosed to be a low white blood cell counts, but I more often hear people with AML whose high white blood cell counts both signify AML – to be confirmed by bone marrow biopsy. Is either better or worse for treatment options?”

 

Dr. Altman:                       

Okay. So, thank you Steve for the question. The white blood cell count itself is not the only predictor that we use in terms of response rate or prognosis. There are some studies that show that a higher white blood cell count might be associated with a higher risk of early complications and potentially a lower chance of long-term survival. But that is really only – the white blood cell count itself loses prognostic relevance when we think about the study of genetics and the molecular features of the disease. I hope that answer the question.

 

Patricia:

Dr. Altman, let’s talk about some common AML treatment side effects. What are some of the things that patients can expect when they begin treatment?

 

Dr. Altman:                       

So, the side effects depend in part on the actual treatment strategy that’s utilized. It’s also important to note that AML itself has symptoms, and so sometimes it’s hard to separate out the symptoms of the Acute Myeloid Leukemia and the symptoms from the treatment. Acute Myeloid Leukemia is a disease where the bone marrow is not functioning normally. The bone marrow is responsible for making healthy red blood cells, healthy white blood cells, healthy platelets, and also is very intimately involved with the immune system.

And so, patients with Acute Myeloid Leukemia by itself without treatment are at risk for fatigue if the hemoglobin is low, bleeding and bruising when the platelet count is low, and at risk for infections.

Also, shortness of breath and other side effects from having abnormal blood counts. In addition, the treatment frequently lowers the blood counts further, and the treatment itself increases those risks associated with low blood counts. Patients can be supported with blood transfusions. Patients are also supported with antimicrobial therapy to prevent infections, and if fever or infections occur despite that, patients receive additional antimicrobial therapy based on what the perceived organism is.

Patients with Acute Myeloid Leukemia, when they receive chemotherapy, are also sometimes at risk for something called tumor lysis syndrome.

That’s when we kill the leukemia cells, when the leukemia cells are killed quickly, sometimes the contents of the leukemia cells can inflame the kidneys and lead to alterations in the electrolytes and the acids and salts in the body, and that’s something that needs to be monitored for and prevented.

Patients with Acute Myeloid Leukemia who receive chemotherapy are also at risk for organ inflammation, and that is something that is monitored with the blood counts.

 

Patricia:                      

What can patients or their caregivers suggest to help manage some of these side effects?

 

Dr. Altman:                       

So, I think the biggest side effect that might be the hardest for us to manage and for patients to manage is fatigue. And I’m a believer that energy begets energy, and so trying to be as active as one can throughout all phases of their treatment I think helps the most. And also, the hopeful recognition that the fatigue should be self-limited, and that with time away from treatment, the energy should improve.

I think that’s one of the biggest things I hear from my patients.

 

Patricia:                      

All right, a little more fact and fiction now. Here’s what we hear from AML patients about treatment side effects. Tell me if this is true or not. “Treatment side effects are unavoidable.”

 

Dr. Altman:                       

I think it’s probably true, but I don’t think it’s completely true. So, I think they’re a long ways away from being in that Hollywood picture of someone with cancer vomiting over the toilet. We have very good anti-nausea therapy that we give as preventative treatment, and we give the anti-nausea therapy different antiemetics based on the emetogenicity, or the risk of nausea related to chemotherapy.

And we know that. We know how risky an individual and a specific chemotherapy regimen is. In addition, there are additional anti-nausea medications available for all of our patients should they have nausea above and beyond what the preventative medications can handle. So, that’s one that I think, that nausea doesn’t have to occur and we can treat nausea. Many patients with Acute Myeloid Leukemia, with treatment, will experience fever that is related to the low blood counts and related to the chemotherapy itself. That being said, we give preventative antimicrobial therapy to prevent infection as one of the potential causes of fever.

 

Patricia:                      

Is there an increased risk of sunburn and skin cancer with AML?

 

Dr. Altman:                       

So, some chemotherapies increase the risk of sun exposure and damage and sunburns. IN addition, some of the preventative antimicrobial medication that we use also can cause some skin sensitivity. There is a risk, whenever we give chemotherapy, of an increased chance in the future of secondary cancers. The risk of that is very low, but that is a risk that I talk about with all of my patients. Skin cancer is one of the cancers. There also is potential increased risk of thyroid cancer, increased risk of other bone marrow damage. And so, that is part of the conversation that I have with my patients.

 

Patricia:                      

The internet is a wonderful place, Dr. Altman, but for AML patients or anyone looking up medical information it can be overwhelming and infinite.

And confusing. What are some of the things that AML patients should think about when they’re researching their cancer on the internet?

 

Dr. Altman:                       

So, I think the most important thing is to have a conversation with their healthcare practitioners and ask their healthcare practitioners what resources they recommend. And I think being upfront and telling your doctors that you’re utilizing the internet is always welcome by the healthcare provider. So, I think that utilization of the internet is fine, but just making sure that you ask your healthcare provider what resources he or she recommends.

 

Patricia:                      

Right, right. We have a question from Mari. She says, “I had busulfan treatment for my AML with great success. Experienced a side effect of noticeably patchy and thinning hair.”

“Is there hope for finding a cure for this chemo-induced alopecia? Life and self esteem is a huge role in survivorship. It can’t simply be fixed or covered with a wig.”

 

Dr. Altman:                       

Thank you, Mari. I appreciate that question. We at Northwestern have a Dermato-Oncology program that we work with. So, we have dermatologists who are very interested in the immediate and long-term side effects of chemotherapy and the skin manifestations of cancer, including blood cancers. So, my recommendation would be to try to seek out a dermatologist in conjunction with your oncologist to help see if there are other options that exist.

 

Patricia:                      

We also had a question from John. He wants to know if there’s a way to combat serious changes in taste and appetite from chemo.

 

Dr. Altman:                       

So, I smirk a little bit because I keep waiting for the food scientist or food engineer to approach me about this.

The biggest day-to-day complaint that we get from our patients is that the food tastes bad. And we know that while the hospital food might not be the greatest, it’s not just the hospital food. It’s the effect of the chemotherapy on taste buds. I don’t yet have an answer for this, but I’m very interested in finding a food scientist who can develop food that tastes normally for patients who are undergoing chemotherapy.

What I suggest to my patients during the time period that they’re having chemotherapy is to try foods that maybe they don’t normally eat so that they don’t recognize how different it tastes from what they’re used to. And things that are a bit more bland for patients taste a little bit better, and colder foods don’t induce as much nausea for most of our patients. But another great question that I don’t have the answer to yet.

 

Patricia:                      

I know we talked a little bit about how overwhelming the internet can be, and how confusing a lot of the information is. How can patients identify misinformation and unreliable sources if they don’t have a conversation with their doctor in the wing?

 

Dr. Altman:                       

So, I think that as you mentioned, anything on the internet is not a substitute for medical advice. I think the same pearls that I would give to anyone who’s searching anything on the internet – anything that says ‘always’ or ‘never’ is probably not to be trusted, and anything that sounds too good to be true may well be too good to be true. I would start with reputable sources. The partners that you mentioned – the Leukemia and Lymphoma Society and the Aplastic Anemia and MDS Foundation have really good websites with patient information.

And the emerging growth of this organization as well, we anticipate growth of information available to our patients.

 

Patricia:                      

Are there any new treatments on the horizon that you can talk about, Dr. Altman?

 

Dr. Altman:                       

Absolutely. So, I love to talk about new therapies in AML. Until the last couple of years – it had been 40 years since we approved a sustained treatment in the marketplace in AML. We had been treating the disease the same. And over the last couple of years there have been a growth of therapies. We’re now trying to sort out exactly when we’re using one over another. We also have clinical trials where we’re combining novel therapies for adults with either newly diagnosed disease or relapsed and refractory disease.

We are in an era of looking out at antibody therapy in AML – that’s one of the new waves of treatment. We are still exploring targeting therapies in the sense of inhibition of FLT3, IDH, and other mutations.

So, it’s an era where there’s lots of excitement, and I’m hopeful for our patients.

 

Patricia:                      

Yeah. Tell me what makes you most hopeful about the future of research in this area, and treatment?

 

Dr. Altman:                       

So, I think that’s a great question. I think the fact that we now – the deeper the understanding we have of the biology of the AML, why AML happens, what mutations drive the disease, and then how to target those mutations with individual therapies is what excites me the most. So, our basic science research has exploded, and that occurs at a very quick pace, and that’s allowing us to develop therapies at a much faster rate than I would have anticipated before.

 

Patricia:                      

What a wonderful way to end our chat. Thank you so much, Dr. Altman, for taking the time to join us today.

 

Dr. Altman:                       

It’s a pleasure to be here. Thank you so much.

 

Patricia:                      

And thanks so much to all of our partners. To learn more about AML and to access resources to help you become a proactive patient, visit powerfulpatients.org. Thanks. I’m Patricia Murphy.

Why Speaking Up Matters: Tips from an AML Advocate

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Casey Marsh, an AML patient advocate, talks about self-advocacy when diagnosed with a serious illness and provides tips for speaking up to your healthcare team to get your questions answered and overall better care. Download the Find Your Voice Resource Guide here.

Casey Marsh is an AML survivor and patient advocate. Casey is giving back by volunteering for The Leukemia & Lymphoma Society and has been selected as Houston’s honored hero for the 2019 Light the Night.

See More From the The Pro-Active AML Patient Toolkit

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Transcript:

Casey Marsh:             

Self-advocacy means to me basically your self-awareness. Knowing what you would want as an outcome, what your goals are, what your objectives are, and what are you going to do to achieve those. So, by being self-aware, you know what you expect out of people, and you know what to make out of a situation. So, if you take that into account with your diagnosis, I feel like your self-advocacy will help basically promote a healthy treatment plan and a healthy recovery.

I would say to those individuals that are nervous to speak up to their healthcare team to think about what really the consequences are by asking a question.

Will they be turned away? Will they not receive treatment if they do? I have never heard a story about that. So, I want them to ultimately think about what are the consequences to asking a question. They’re really not negative, so, therefore, there should not be any type of discouragement to go and ask what you’re feeling. And personally, I think of this as a team, and to build a good team, you have to build that trust, and you have to know everybody on that team’s strengths and weaknesses.

And you know, as a patient, you know your body best. And although you might have a healthcare team that understands and studies the body, they don’t know what you feel. And so, it’s important for you to stay in tune and be a team player and play your part.

And sometimes that part is having to ask those questions that might be a little nerve-wracking, but again, if we don’t ask questions, then we can never find answers. And by doing these questions, we’ve come such a long way in our research. So, I encourage everybody to have a voice. You need to speak up, and don’t be afraid because the consequences are not harmful.

Can AML Be Cured?

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 Dr. Daniel Pollyea provides an optimistic outlook related to a cure for acute myeloid leukemia (AML). Download the Program Resource Guide here.

Dr. Daniel A. 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. 

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Transcript:

Ross:                          

It sounds like you’re hopeful about new treatments for the disease. How about a cure? What’s the science? What’s the medical science say about that? Are we getting any closer to that?

Dr. Pollyea:                 

We are getting closer to curing this in more cases. So, like I mentioned before, as bad as this is, we can already cure some subsets of patients. There’s one type of Acute Myeloid Leukemia called Acute Promyelocytic Leukemia, APL. It’s an uncommon form of AML, less than 10 percent.

But we can cure close to 99 percent of people with APL. And APL, 15 years ago, was universally the worst form of acute leukemia to get. So, that dramatic 180 that we’ve seen in APL, we are hoping to translate into other forms of AML.

Some other forms of AML have cure rates as high as 50 percent, 60 percent, 70 percent in the right setting. Sometimes we can cure patients with a stem cell transplant fairly reliably. So, we are very, very hopeful about our ability to continue to make progress and cure more and more and more of these patients. That’s the future that we see.