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Confusing CLL Terms Defined

Confusing CLL Terms Defined from Patient Empowerment Network on Vimeo.

What is FISH testing? What is IGHV? Physician assistant Danielle Roberts explains the meaning of these often confusing terms and their role in disease monitoring and CLL treatment decisions.

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

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Transcript:

Danielle Roberts:    

So, a FISH test is a test from your either blood in your bloodstream or from your bone marrow biopsy. And it stands for florescence in situ hybridization. And this is a highly specific test that looks at the chromosomal changes with CLL. This can be done in the peripheral blood or in the bone marrow.

And it’s important to remember that when we consider genetic testing and CLL, we aren’t talking about inherited genes, but the abnormalities that occur within the CLL itself.

So, an IGHV test is a mutational test that stands for the immunoglobulin heavy-chain variable gene locus. This can also be done in the peripheral blood and the bone marrow biopsy. This test can help us determine treatment options as well as help with determining what high-risk features there are for your particular disease.

So, 17p deletion is the deletion of the long arm of chromosome 17. This can be seen at initial diagnosis or it can be acquired later on in disease progression. So, for all patients this is one of the more important tests that if you’re going to ask your doctor if you’ve had, you should ask at a diagnosis. If you’ve relapsed later on, you should ask again if that mutational status is being observed or checked in your follow-up testing.

17p deletion is something that can be acquired along the course of your disease progression. It is not always seen at initial diagnosis but can be acquired if you are relapsed or refractory. Therefore I recommend that every time you’re having peripheral blood for flow or if you’re having bone marrow biopsies, especially if it’s for treatment planning purposes, you should advocate to your physician team to make sure that this test is being performed as it will drive – or as it can drive treatment decision-making.

 

 

 

 

 

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Practical Advice for Coping with a CLL Diagnosis: What’s Next? from Patient Empowerment Network on Vimeo.

After receiving a diagnosis of chronic lymphocytic leukemia (CLL), patients can have a variety of concerns. Physician assistant Danielle Roberts shares her top three pieces of practical advice for patients to move forward. 

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

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Transcript:

Danielle Roberts:       

My recommendations if I could have three things that I would recommend all patients with CLL do, 1.) It would be to have your financial information kind of in line or know how to find that. Unfortunately, a lot of the medications that we use to treat disease are incredibly expensive. However, there are really good patient assistance programs out there. In order to be able to apply for patient assistance programs you do have to submit your financial information to them. So, I would really suggest that you have access or be able to know where to find that.

I would also really recommend you talk to your family members in so that they understand what’s – where you are with your treatment and what’s going on. As a physician’s assistant, one of the questions I generally get is when they bring in a family member or somebody who has not been along in their journey for their treatment, if they’re asking lots of questions, that was and kind of diagnosis. So, I encourage people to talk about that at the beginning, so everybody understands where they are and what the plan for the future is going to be.

And then the last thing that I always recommend to everybody is to understand that not one treatment is right for everybody. Understand that things are going to change and we’re all going to grow and we’re going to learn with the process. But if you don’t tell your healthcare team what’s going on, we can’t help you. And we say that there is no such thing as a bad question to us. You’re never bothering us. That’s what we’re here for. Rather you tell us, even if it may be something you feel is minor, ahead of time so that we can address it and work towards a solution, if there needs to be one.

How Will I Know if My AML Treatment is Working?

How Will I Know if My AML Treatment is Working? from Patient Empowerment Network on Vimeo.

During acute myeloid leukemia (AML) treatment, specific tests help to gauge a patient’s treatment response. Dr. Pinkal Desai details how diagnostic tests are used in monitoring the efficacy of an AML therapy

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

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What Is the Patient’s Role in Making AML Treatment Decisions?

Transcript:

Katherine:                  

Once a patient has started treatment, how do you know if it’s working? How do you gauge that?

Dr. Desai:                   

When a patient begins treatment, whatever their regimen is, for the most part, it takes about a month to get into remission. So, initially, with any treatment we would use, the blood counts will actually go down. Everything is down, down, down. That’s important, and it’s good, actually, because if we can’t wipe out these cells, then we’re not going to. The patient’s not going to go into remission. It’s good that these blood counts drop and they keep like that for a month.

After a month, generally, is the first look on an average to see where it is, and that kind of depends on the regimen. For intensive chemotherapy, we take a look in the middle, like Day 14, to see did we wipe out all the leukemia? And can we modify treatment so that whatever might be left behind will clean out? For lower intensity treatments, it’s about a month. So, that’s the first sort of real look at whether a patient is in remission.

And again, when I say, remission is a morphologic criteria that we see the blast count are less than 5 percent, and the cells are – the normal cells are back to what is considered within normal limits or normal for that person’s age. And the idea, at that time, is to not only just confirm remission, but like I was saying, how good is the remission.

So, that’s where MRD testing comes into play. You want to see what you want to find, even if it’s by small numbers, what is the percentage of leukemia that’s left behind. 0.01 percent, 0.001 percent. This is important.

The goal is to ultimately get that down to zero, and that’s how we use it during induction, even when they’re going through consolidation, we’re episodically monitoring with bone marrow or blood testing for some of these molecular mutations that is there continued response from where we started off? And once the treatment is done, we are still, we’re seeing these patients on a regular basis, sometimes doing bone marrow biopsies at regular intervals, to again make sure that there is continued response. And can we see something different, or is there an emerging population of cells that are worrisome, and how do we modify our treatments to try to kill these cells?

What Could Emerging AML Treatment Approaches Mean for You?

What Could Emerging AML Treatment Approaches Mean for You? from Patient Empowerment Network on Vimeo.

In the changing landscape of acute myeloid leukemia (AML) research, how could emerging treatments impact care for patients? Dr. Pinkal Desai shares information about combination therapies, immunotherapy, and clinical trials, and explains the value of MRD in tracking AML response.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

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Transcript:

Katherine:                  

Are there emerging approaches for treating AML that patients should know about?

Dr. Desai:                   

So, there are several, and this is where there’s lots of lots of new drugs that have been approved. A lot of drugs in the pipeline. And within the categories, you can divide up where the advances are being made in several categories. So, the first one is, can you make a better induction regimen? So, how can you combine chemotherapy or hypomethylating agent plus venetoclax combination?

Can you add more targeted agents to these bad points to improve the chances of remission and to keep the patients in remission? So, that’s one aspect of it, that this is important.

There’s obviously this whole concept of immunotherapy of AML, where there’s a lot of antibodies treatment or drugs that affect the immune modulation that are being used both in up-front leukemia, in many times in the older patients, itself. There are clinical trials, obviously.

And also, in the relapse setting, there are CAR-T cells being used in leukemia therapy in the relapse setting. This is important, and a lot of new drugs are being used in the relapse setting. So, there’s this whole new sort of portfolio of clinical trials and treatment options for patients.

And the third aspect, which is, I would say, very important and as important as using better drugs, is to be able to quantify how the patients are responding to these treatments. Because we don’t want to start treatment, and then be blind about the kind of responses they’re getting.

There’s a whole new concept, what we call MRD measurements, or minimal residual disease, or measurable residual disease, MRD monitoring. That’s very important. So, when a patient starts with chemotherapy, and then you have subsequent bone marrows, even if they’re in remission, the quality of remission matters. The amount of MRD or amount of leukemia that’s left behind matters. And how do we direct our treatments to clean up that MRD? And how do we monitor this MRD, so that we can see what happens in the future? Many times, MRD can tell us that a patient’s going to relapse six months later. And how do we use that information?

So, these are very important aspects of monitoring of treatment that is important, and to measure MRD, not just by looking at the cells themselves, but using the patient’s own signature of molecular mutations that we found at baseline at the time of diagnosis. And how do we keep an eye on that?

This is another new world and new ways to figure out how best to use new drugs, maintenance approaches, better consolidation approaches, and how do we use MRD to mix all of these together to get the best possible outcome for these patients.

I think we’ve seen tremendous progress in leukemia, just over the last five years. We went from pretty much having two drugs to treat leukemia, chemotherapy, 7 and 3, and some hypomethylating agents, to a flurry of 15 new approvals. We now have targeted therapies. We have new clinical trials. I’m very hopeful that the combination of all of the things that we’re talking about, how to monitor patients, how to best utilize stem cell transplants. We’re entering a new age in leukemia, and I’m hopeful that with the advent of all of these drugs and what we know about leukemia, we can actually have a very good shot now to improve cure rates in leukemia.

AML Treatment Approaches: What You Should Know About Your Options

AML Treatment Approaches: What You Should Know About Your Options from Patient Empowerment Network on Vimeo.

What should acute myeloid leukemia (AML) patients and care partners know about treatment options? Dr. Pinkal Desai shares information about frontline treatments, targeted therapies, combination therapies, and clinical trials, and explains an important clarification regarding a newly approved oral hypomethylating agent.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

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Transcript:

Katherine:                  

So, in looking at a treatment plan, we’ve discussed the factors that go into that choice. And then, you’ve also just covered some treatment approaches and who they might be right for. So, you’ve talked about chemotherapy. You’ve talked about stem cell transplant. What about targeted therapies and also clinical trials? Where do they fit in?

Dr. Desai:                   

Right now, if somebody’s diagnosed with new AML or newly diagnosed leukemia, and they are eligible for intensive chemotherapy of the approved agents, the one targeted therapy that does make a difference is midostaurin, which is a FLT3 inhibitor.

And patients who do have a FLT3 mutated leukemia, the standard of care is treatment with intensive chemotherapy in combination with midostaurin. So, this is where chemotherapy’s combined with the backbone of the targeted therapy.

There are clinical trials of other targeted therapies that are being combined with frontline treatment. That frontline treatment might be intensive chemotherapy or more of the hypomethylating-based therapy, which is what we call lower intensity therapy. So, these are where the clinical trials are asking the question that can be just how midostaurin was combined with chemotherapy.

Can we combine other targeted therapies with the backbones that currently exist? Chemotherapy or lower intensity hypomethylating agents. And can we combine them to improve the chances of going into remission and staying in remission?

I would say clinical trials are extremely important. Almost any stage of leukemia, whether it’s a new diagnosis, whether it’s second-line or relapse, it’s important, because these questions that are being asked are very relevant. How do we improve upon the existing known remission rates and survival in leukemia?

There are targeted therapies available for IDH inhibitors that are being combined. There is also a newly approved BCL2 inhibitor, venetoclax, which is used in combination with hypomethylating agents, that have shown survival advantage over single agent.

Hypomethylating agents, anybody who’s older, we are now combining the venetoclax with hypomethylating agents for what we call lower intensity induction treatment. And there are several others in the making. We have TP53 inhibitors.

As we talked about this, that leukemia is not one diagnosis, really. AML has several, several, several subtypes, and once we find out what makes that particular patient’s leukemia tick, and if you have a targeted inhibitor towards it, it’s logical that you would want to combine it with what the backbone of treatment is, and that’s where clinical trials are extremely important in asking most relevant questions and improving patient survival. 

Katherine:

Dr. Desai, I learned that oral azacitidine was recently FDA approved. What does that approval mean for patients and who is it right for?

Dr. Desai:                   

So, oral… So, azacitidine. For patients who may or may not know this, azacitidine has been approved in the IV or subcutaneous formulation for treatment of myelodysplastic syndrome and leukemia.

And this is, when I was saying that there is a lower intensity treatment of hypomethylating agents, that’s one of the drugs, azacitidine. And we use it for induction treatment in patients who do not qualify for intensive chemotherapy in AML.

So, oral azacitidine has been currently approved for older patients who have gone through intensive chemotherapy.

The trial was done in patients who did not have prior hypomethylating exposure of any kind, so people who had not seen any IV or subcutaneous azacitidine, they had leukemia, they get the intensive chemotherapy, finish the induction part, and the, what we call, consolidation part, which is the cleaning up with more additional cycles of chemotherapy.

Once that is done, the old standard of care was to not do anything, so these are obviously for patients who are not transplanted. So, once somebody, just to give a background on this, if somebody’s in remission and they’re transplant eligible, we make a decision whether they should go for transplant or they should get some more chemotherapy rounds. Both are consolidation of some kind, transplant or chemotherapy.

So, let’s say somebody went through induction, got into remission, and it was decided that they’re not candidates for transplant, or the patient didn’t want to go through a transplant, and you go for the consolidation. And the old standard was, after that, to do nothing. And oral azacitidine was tested in this situation, where half the patients got oral azacitidine as maintenance. It was given as pills, to take it for two weeks out of a 28-day cycle.

So, every month, you take it for 14 days. And half of them didn’t get the drug, oral azacitidine. And the drug was recently approved for FDA for having a survival advantage over the standard of care, which is to do nothing after consolidation is over.

So, in other words, this is currently available for patients, older patients, who’ve gone through induction chemotherapy, and/or consolidation, and then finished it. Then, you start this oral azacitidine for keeping this remission going on longer. And that’s where the niche of this drug is.

It is very, very important to understand that oral azacitidine has a very different kinetic in the body than IV azacitidine. So, I think people, many times, get confused between is IV the same as oral? They are totally different drugs and have a different way it affects the bone marrow.

So, they’re not to be interchanged for that indication. Oral azacitidine has been strictly approved for maintenance of remission, post-chemotherapy.

What Is the Patient’s Role in Making AML Treatment Decisions?

What Is the Patient’s Role in Making AML Treatment Decisions? from Patient Empowerment Network on Vimeo.

What role do acute myeloid leukemia (AML) patients have in their treatment decisions? Dr. Pinkal Desai explains factors that go into decision-making and how patients may help guide the treatment option that’s best for them.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

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What Are the Goals of AML Treatment?

Choosing an AML Treatment Path: What Should You Consider?

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Transcript:

Katherine:                  

What is the patient’s role in this decision?

Dr. Desai:                   

I think it’s important for patients to understand why the decisions are being made or what goes into the decision-making. Because the patients would appreciate, if they know, that these are the genetic subtypes, and this would be the best sort of approach for them.

So, from a patient’s side, their role is, 1) to understand all the factors that go into the decision-making. And the second aspect, which is important, is their own values and their own decision on what treatment they would like to have. 

So, there are – sometimes, it’s very white and black. There are many times where it’s a gray zone, in the sense that there is a best treatment that’s available, that the oncologist would discuss, but it’s also possible to choose between two different kinds of therapy options.

If the patient is eligible, for example, for both intensive and non-intensive treatment, then what would they prefer based on what’s going on in their life? Whether they want to be hospitalized for 30 days for intensive induction or not? Do they want to do this out-patient? A lot of these things are important, and they have to be involved with this.

The third aspect, which is very important from a patient standpoint, is the need for transplant. So, patients who are younger and transplant eligible for leukemia that has a higher risk of coming back, we do recommend a stem cell transplant, so that the patients have to understand the process of stem cell transplant.

Sometimes, it’s slam dunk that a transplant is needed, but there are certain times where you could or could not go for it, and this is where the patient’s choices and values are extremely important, that once they hear all of this information, they would decide whether they should or should not go for stem cell transplant.

Choosing an AML Treatment Path: What Should You Consider?

Choosing an AML Treatment Path: What Should You Consider? from Patient Empowerment Network on Vimeo.

What should be considered when choosing an acute myeloid leukemia (AML) treatment path? Dr. Pinkal Desai explains the factors that are considered to determine the best treatment for an individual patient.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

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Transcript:

Dr. Desai: 

Now, in terms of how we decide treatment, so, there is the leukemia aspect of it, of the biologic indicators of leukemia, and there’s obviously the patient. Because everybody is different. There are patients who are coming in at various ages, like you said. Age is a very important thing to look at, because if you’re younger, the patient’s younger, then they’re usually eligible for what we call intensive chemotherapy. And if the patient is older, they may not be able to handle intensive chemotherapy, and in which case, the induction treatment or the first treatment, we call induction treatment, is basically the treatment we give to get you into remission.

So, the induction treatment decision is based largely from a patient aspect on age.

Whether to go with intensive induction chemotherapy, or with lower intensive chemotherapy, depending on the person’s age.

Now, age is… There is a loose definition of what is considered older age, but we generally say over 75, patients cannot handle intensive chemotherapy. Under 75, under 70 for sure, they’re eligible for intensive chemotherapy, but it’s a biological continuum. So, there are patients who are much healthier, even at older ages, and much older at younger ages. So, we take into consideration not just the age, but also what else do they suffer from? Do they have other comorbidities? Is the heart okay? Do they have kidney damage? Do they have lung damage from previous comorbid illness? And that all goes into figuring out what kind of treatments can they handle.

And that’s the patient aspect of it. Then there’s the biologic aspect of the leukemia itself. Leukemia, the chromosome type. There are leukemias that respond extremely well to intensive chemotherapy. So, you’d figure that kind of treatment for it. Within the molecular subclassification, as we said, there are mutations in certain genes, like FLT3 and IDH. There are targeted treatments towards that, so we look at all of these genes to figure out what is the best mix of chemotherapy, targeted therapy, lower intensity therapy, to look at and combine so that we can have the best chance of being in remission, and to continue to be in remission.

What Are the Goals of AML Treatment?

What Are the Goals of AML Treatment? from Patient Empowerment Network on Vimeo.

When it comes to acute myeloid leukemia (AML), what are the goals of treatment? Dr. Pinkal Desai defines the role of remission and the specific goals of treatment for AML patients. 

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

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Transcript:

Katherine:      

Dr. Desai, when deciding on a treatment approach with a patient, I imagine you have to consider a number of factors, like a patient’s age and their overall health. Let’s walk through these considerations, and we’ll start with treatment goals. What does that mean, exactly?

Dr. Desai:                   

So, the first treatment goal is to get into remission. Patients with leukemia will have abnormal blood counts, they don’t feel well, they have a risk of infection, and all of that is only going to get better if you can get into remission.

And remission means that the bone marrow has a blast count less than 5 percent. Now, remember, we talked about if it was over 20, it’s considered diagnosis of AML. So, we want it gone under 5 percent, preferably zero. And we want all the blood counts that are abnormal to normalize back to what it would be for a normal person.

So, that’s the sort of definition of remission, and we want to get there, because ultimately, patients feel extremely good once they go into remission. They feel fine. The risk of infection goes away. It is absolutely important for long-term quality of life and survival. The first goal is to get into remission.

The second goal is to keep that remission going, for as long as possible, and also increase the chances of cure.

So, going into remission does not mean that a patient is cured of leukemia. It means that we’ve taken the first step of knocking the leukemia down to its knees, but there are still a few cells that are hanging out, and they’re still hiding. And the rest of the treatment and approach is to try to kill these cells and improve the chances of cure. So, and generally we say, once you get into remission you stay in remission, and when you’re past that five-year mark, we say leukemia is cured.

So, the first goal is get into remission. Second, keep yourself in remission, and that’s the whole sort of few things that we look at.

Understanding Risk in AML: How Molecular Testing Affects Treatment Options

Understanding Risk in AML: How Molecular Testing Affects Treatment Options from Patient Empowerment Network on Vimeo.

How does molecular testing impact acute myeloid leukemia (AML) treatment options? Dr. Pinkal Desai discusses molecular testing and how results may help determine the best treatment path for patients.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From INSIST! AML

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Transcript:

Katherine:      

Dr. Desai, is there a high-risk and a low-risk AML? And if so, what are the indicators?

Dr. Desai:                   

So, in terms of when we talk about risk of leukemia, many patients, when they come, they frequently ask what stage this is, which is generally not how leukemia is categorized, unlike lung cancer, or breast cancer, or any of the solid tumors. Leukemia is in your blood and in your bone marrow, so it’s kind of like all or none to some extent. When we talk about risk in leukemia, we’re talking about what is the chance of this leukemia coming back in the future. So, is the chance high, intermediate, or low?

And that’s how we categorize leukemia, into these three sort of risk categories, low risk, intermediate risk, and high risk. These risk categories are made up.

We decide these based on information from two aspects. One is the chromosomes, which we talked about. There are certain good risks of chromosomal abnormalities as well, where, for example, poor binding factor leukemias, where these leukemias tend to respond very well to chemotherapy. There are some higher risk, that the chances are higher to come back. And then, the middle category of intermediate risk, where it’s sort of in the middle.

The molecular subtype, or the molecular classification of AML is extremely, extremely relevant, because it gives you pretty much your own signature, and the patient sort of specific, personalized risk of whether this is going to have a high, intermediate, or a low risk to come back.

So, it’s a combination of chromosomes, and the molecular subtype, which is extremely important in figuring out the risk category.

Now, in the course of the treatment and decision-making of leukemia, we don’t have – we’ll have the chromosome information quite early, usually within the first two to three days, but the molecular information, some of it comes back pretty fast, like in a couple days from the testing. But many of these tests, the full panel comes back about 14 days after we do the original bone marrow biopsy. Some of these decisions on whether this is high risk or low risk is relevant in the long run. These decisions happen later, and you don’t have to wait for the treatment, obviously. This is more for what happens after a patient goes into remission.

But there are certain molecular genes that are very important in deciding treatment up front, and those we expedite, and they are back usually before treatment decision is made. For example, FLT3 ITD or FLT3 TKB.

These are two genes where the up-front treatment decision changes, depending on the presence or absence of this gene. So, you really, really do want to know this information early on.

Chromosomes you absolutely need it before treatment begins, because there are several options of leukemia treatment that are specific to certain chromosome subtypes. So, that’s like the basic information you need to have before making any treatment plans.

Key AML Testing for Better Care: Understanding Prognosis and Treatment Choices

Key AML Testing for Better Care: Understanding Prognosis and Treatment Choices from Patient Empowerment Network on Vimeo.

After an acute myeloid leukemia (AML) diagnosis, additional tests must follow to determine prognosis and treatment options. Dr. Pinkal Desai explains key tests that aid in choosing optimal care for each patient. 

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From INSIST! AML

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Transcript:

Katherine:      

Other than a complete blood count, what additional testing should take place following an AML diagnosis?

Dr. Desai:                

So, a blood count or CBC is just a hint that there might be AML. It’s certainly not diagnostic.

But when you see that there are some abnormalities in blood count, and there might be the presence of these immature cells or blasts in circulation, there is suspicion that this is acute myeloid leukemia. The diagnosis, the gold standard for diagnosis, is a bone marrow biopsy, which is a procedure that can be done out-patient or in the hospital, depending on where the patient is. It takes about 15 minutes, where we take a sample out of the hip bone and look at the cells. This is where bone marrow is being made, so you’re going to exactly where the problem lies, and seeing if the blast count is increased.

So, the diagnosis of AML is established when the blast count is over 20 percent in the bone marrows. And normally, it needs to be less than 5 percent.

And if it’s over 20 percent, that’s the diagnosis of AML. Whether it’s over 20 percent in the bone marrow or in the peripheral blood.

It doesn’t matter, one way or the other. This is a diagnosis of AML, but you do need a bone marrow biopsy to confirm diagnosis of AML.

Katherine:                  

What about genetic or molecular testing? Is that done?

Dr. Desai:                   

AML diagnosis is just one part or the first step of saying somebody has leukemia. There is a slew of other tests that are important, and we generally consider, within the genetic tests, we generally consider two kinds of testing. One is the cytogenetics, or the karyotype analysis, which looks at the chromosomes in our bodies.

So, leukemia can be associated with big chromosomal changes, and that’s important to recognize. And the second one is the molecular testing, and we’ll go over both of them.

The chromosomes, or the karyotypic analysis, the vast majority of leukemia patients have a normal chromosome type, but there are certain recurrent abnormalities in chromosomes that we see in leukemia, and that’s important to know for a variety of reasons: treatment decisions, prognostication.

And the second part of it, the molecular, these are actually genetic routine analysis, and this is not somebody – it doesn’t mean, when we say genetic testing, it’s not the patient’s own normal genetic type. So, we’re not looking for what they have inherited. Most of leukemia is actually a random event, and it’s not inherited. We’re talking about genetic damage that the leukemia cells have within themselves.

It gives us the signature of the leukemia, and it helps us understand what genetic abnormalities are present in the leukemia. There are several panels, 50 to 100 genes, but there’s usually recurrent genetic damage that leukemia cells have.

And you want to know that, because again, like karyotype, this is important in treatment decisions, and also in the prognostication and prediction in the future.

How Could Emerging CLL Treatments Impact Your Care?

How Could Emerging CLL Treatments Impact Your Care? from Patient Empowerment Network on Vimeo.

In the changing world of chronic lymphocytic leukemia (CLL) research, how can emerging treatments impact care for patients? Dr. Jennifer Woyach shares information about targeted therapies, immunotherapy and clinical trials, and explains why she is hopeful about the future of CLL care.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

That’s a good point. Are there emerging treatments patients should know about?

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to 10 years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment, and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

There are also newer target therapies, different targets that we are finding increasingly important in CLL, as well as a modality called CAR-T cells, which most people have heard of where we take patients’ own T cells, modify them in the lab and then, give them back with a goal of getting those cells engineered to kill CLL cells.

These are all things that are not ready for prime time in CLL yet but are available in clinical trials. And I think one other thing I’d really like to put a plug in for is clinical trials in CLL, because right now we’re at a point where our therapies are really very good. But if people just do those treatments, we are never going to figure out which one is the best or figure out, for specific types of patients, which treatment is the best. And so, I advocate that any of my patients that are eligible for clinical trials should consider them, because that’s how we make progress in the disease from an altruistic sense.

That’s how we make things better for everybody. That’s one way a patient can think about it. But more personally than that, being in a clinical trial gives somebody the opportunity to get a treatment that they otherwise wouldn’t get that might be better than our standard of care therapies.

Katherine:                  

Dr. Woyach, as a researcher in the field, why are you hopeful?

Dr. Woyach:               

I am so hopeful in CLL because there is so much that we’re learning every day about the biology of the disease, about specific mutations and other genetic factors that are important and really can be targeted by new drugs. Paralleling our understanding of the disease, there also are many more techniques to make these targeted therapies that kill cancer cells selectively while sparing normal cells and making our drugs even more tolerable.

And I think both the targeted therapies like this and the potential of combining them, figuring out sequences that are best but then, also these newer modalities where we, actually, get the immune system involved like the CAR-T cells. They’re making CAR NK cells now. And just lots of other strategies that could be used together with targeted therapies to, hopefully, cure the disease.

Targeted CLL Therapy: What Are the Side Effects?

Targeted CLL Therapy: What Are the Side Effects? from Patient Empowerment Network on Vimeo.

What are common side effects of chronic lymphocytic leukemia (CLL) targeted therapies? Dr. Jennifer Woyach discusses side effects of specific targeted therapies and the importance of reporting any issues to your doctor for optimal quality of life.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

If there are side effects, what would some of the side effects be for these targeted therapies?

Dr. Woyach:               

So, it depends on the drug. So, BTK inhibitors, specifically, ibrutinib can cause some joint and muscle pain, some rashes, diarrhea, heartburn. Those are things that tend to, if they’re going to happen, usually happen earlier on in treatment and tend to get better over time. It can also cause high blood pressure. It can cause an abnormal heart rhythm called atrial fibrillation.

So, those are things we watch out for with ibrutinib. Acalabrutinib really has all of the same side effects but for many of them, they don’t occur as often. And then, the tradeoff there is ibrutinib is given once a day and acalabrutinib is given twice a day. With venetoclax plus obinutuzumab with that regimen, you get a lot more hematologic toxicity. So, you see more lowering of the good white blood cell count, which is, obviously, a risk for infections. That regimen comes with a risk of something called tumor lysis syndrome, which is where the cells can break down too quickly and cause damage to the kidneys, damage to the heart.

It can also cause some GI disturbance like some diarrhea, nausea, abdominal pain, things like that. I see there are a lot of side effects. And, of course, when I’m talking to a patient about treatment, we go over them in more detail than that. But I think the important thing is with all of these therapies, we do have ways to manage these side effects.

One thing I think is important for patients to remember is your doctor doesn’t know you’re having side effects unless you tell them. So, we know that people have these side effects. But if you don’t tell us that you’re having diarrhea or heartburn or things like that, we can’t help with it. And we have a lot of medicines that can help these things.

 

 

 

 

What Is YOUR Role in CLL Treatment Decisions?

What Is YOUR Role in CLL Treatment Decisions? from Patient Empowerment Network on Vimeo.

What is the chronic lymphocytic leukemia (CLL) patient’s role in making treatment decisions? Dr. Jennifer Woyach explains frontline CLL therapies and how patients help guide the treatment decision that’s best for them.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


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Transcript:

Katherine:                  

Dr. Woyach, what do you feel is the patient’s role in this conversation about treatment approaches?

Dr. Woyach:               

I think that, obviously, the patient is the most important part of the talk of treatment indications. Like I mentioned, sometimes we have the discussion of chemotherapy versus a targeted therapy. More often, the discussion is we have three approved frontline CLL therapies right now. We have two BTK inhibitors or Bruton’s tyrosine kinase inhibitors, ibrutinib, acalabrutinib.

And then, we have a BCL-2, venetoclax, that’s given in combination with an antibody called obinutuzumab. These are very different treatments in terms of side effect profiles, how they’re administered, how often they’re administered, just as an example. The BTK inhibitors are pills. And they’re meant to be given indefinitely. So, you start them with plans that you’re not going to stop them, unless the patient doesn’t tolerate them or they stop working. And so, with that type of regimen, you have the kind of burden of being on treatment for a long period of time.

But on the flipside, it’s very easy to start treatment. So, if you decide you want a BTK inhibitor, I write a prescription for it, it comes to your house, you start it. I usually see patients monthly for the first six months and then, we go to every three months. It’s very easy to start treatment.

The other type of treatment, the venetoclax plus with the obinutuzumab regimen, that’s the BCL-2 inhibitor with an antibody, it’s a finite therapy. So, people are treated for a year and then, they go off treatment. The flipside of that is they’re a lot more time intensive in the beginning. So, you have the IV therapy with the obinutuzumab. Venetoclax you, actually, have to ramp up the dose so patients have to come in weekly for the first five weeks, and they have to come in monthly for their infusions. So, it’s much more time intensive up front but then, you get to stop treatment. And so, those are considerations that I can’t answer for somebody.

I don’t know which one people would prefer and people prefer different things. So, we spend a lot of time talking about all of the different scenarios and what’s going to make the therapy work best for the patient.

 

 

 

 

Could CLL Be Inherited?

Could CLL Be Inherited? from Patient Empowerment Network on Vimeo.

Can chronic lymphocytic leukemia (CLL) be inherited directly from parents? Dr. Jennifer Woyach discusses the likelihood of passing down CLL to children and the difference between genetic mutations and acquired mutations in CLL.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

We have another question from a patient who wants to know if their children will inherit CLL. Is there any link between inherited mutations and CLL?

Dr. Woyach:               

That’s a very, very common and really important question. I would say of the hematologic cancers, CLL is one with higher linkage in families, which means that people with CLL are more likely to have another family member with CLL though it’s still not very common.

And it’s very different from breast cancer or the solid tumors where we know that these specific mutations indicate families that are going to have risk of disease. There has actually been a lot of study over the years of families that tend to have multiple people with CLL. Unfortunately, there really have not been genes identified that are the reason for those family linkages. I think there has been only one family that I know of where they’ve actually found a gene that was likely the cause of multiple family members’ illnesses. So, yeah, there is no indication to test family members.

I tell people do not worry that you’re going to pass this to your children or your grandchildren. CLL is not something that we should be using as like a marker of whether you should have kids or should have anything like that.

So, maybe a little more likely in family members but not enough to really be worried about that.

Katherine:                  

What are the differences or difference between inherited and acquired genetic mutations?

Dr. Woyach:              

So, inherited mutations are those that you get from your parents. And there are lots of inherited mutations that, actually, can predispose to cancer. Specifically, I mentioned the TP53 mutation and CLL cells. Well, there are also people who inherit a TP53  mutation have risk factors for multiple cancers. And CLL, specifically, every mutation that we talk about is an acquired mutation. So, that’s also known as a somatic mutation. So, they’re mutations in the cancer cells. But if you did DNA sequencing of the normal cells, they would not be there.

What Does It Mean to Have High-Risk CLL?

What Does It Mean to Have High-Risk CLL? from Patient Empowerment Network on Vimeo.

What does high-risk chronic lymphocytic leukemia (CLL) mean exactly? Dr. Jennifer Woyach explains the meaning of high-risk CLL, factors in determining disease progression, and the impact on treatment decisions.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


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Transcript:

Katherine:                  

We have a patient question. I have 17p deletion. Should I be worried?

Dr. Woyach:               

So, 17p deletion is usually associated with more aggressive disease biology almost always associated with that unmutated IGHV. The reason I bring that up is there are a very small subset of patients who have 17p deletion and mutated IGHV who, actually, have pretty indolent or slow growing disease.

People who don’t, which is the majority of them with 17p deletion, do have a shortened time to treatment and shortened survival with most of our current therapies. There have been a lot of advances though in the treatment of 17p deleted CLL. And may of our newer therapies can very much prolong the remission time in the lives of patients with 17p deletion.

Katherine:                  

Dr. Woyach, how do these chromosomal changes affect disease progression and prognosis?

Dr. Woyach:               

So, the markers that are associated with more aggressive disease biology usually are going to be associated with people that need treatment within the first few years after diagnosis, especially those people who have 17p deletion, 11q deletion, unmutated IGHV.

Katherine:                  

What exactly are prognostic factors? Would you define that?

Dr. Woyach:               

Sure. Prognostic factors, and I mentioned three of them, the IGHV, FISH, and the TP53 mutation, are ones that have been studied extensively and shown that the presence of this marker or some change in this marker is associated with a change in the biology of the disease or in the response to therapy.

Katherine:                  

How does the identification of these changes or mutations affect treatment options?

Dr. Woyach:               

Well, right now, we’re lucky in CLL because we have a lot of treatment options. I would say the most important changes when we’re talking about somebody with CLL that is about to start their first treatment is the decision of whether chemotherapy is ever appropriate. So, almost everybody with CLL now is treated exclusively with targeted therapies.                              

So, nonchemotherapeutic options. There are some people who are young, and in CLL terms that means under the age of 65, who have mutated IGHV and who otherwise have good genetic list disease. So, normal chromosomes of the 13q deletion, no TP53 mutation. That small subset of patients, actually, has the potential to be cured with a specific type of chemotherapy. It’s called FCR or fludarabine, cyclophosphamide, rituximab. So, for those young, healthy patients, it’s really important to know those risk factors to know if they are in that group that has that potential for cure.

The converse to that is if patients don’t fall in that group, they probably shouldn’t receive chemotherapy as their first treatment, because it’s not as effective as our other therapies.

Katherine:                  

Yeah. It makes sense.

Dr. Woyach:               

And then, even in the future with first and other treatments with novel therapies, we know that patients with 17p deletion and TP53 mutation tend to have a shorter response time. And so, what I use that for in my practice is I know that those are people that I really have to be sure that we’re following them closely, taking any signs of progression seriously, and always have a back-up plan for what we’re going to do if this treatment doesn’t work.