Expert Advice for Navigating AML Treatment and Care Decisions from Patient Empowerment Network on Vimeo.
AML expert Dr. Ann-Kathrin Eisfeld reviews the importance of essential testing and explains how the results may impact the care and treatment of patients with AML. Dr. Eisfeld also shares updates on new and developing AML research.
Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.
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Transcript:
Katherine Banwell:
Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. Today’s program is a part of our Insist series. We’ll discuss how to access the most personalized AML therapy for your individual disease and why it’s vital to insist on key testing. Before we meet our guest, let’s review a few important details
The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Ann-Kathrin Eisfeld. Dr. Eisfeld, welcome. Would you please introduce yourself?
Dr. Eisfeld:
Hi, thank you so much, Kathrine. Yes. My name is Ann-Kathrin Eisfeld. I’m currently an assistant professor and hematologist at the Ohio State University.
And I’m also serving as the director of the Clara D. Bloomfield Center for leukemia outcomes research at the James.
Katherine Banwell:
Thank you so much for joining us today and taking the time to discuss this important issue. To set the stage for today’s discussion, Let’s start with this important question. How would you define personalized medicine as it relates to AML care?
Dr. Eisfeld:
I define personalized medicine in AML as have a complete testing at time of diagnosis that consists of not only the morphology of the bone marrow, but we call immunophenotyping, which is looking at the surface markers, but also full review of all the chromosomes, which is called cytogenetics. And with those metaphase testing, I’m looking really at all of them and at the hot spots, which is done by a technique called FISH.
And then most importantly, for personalized testing, it also needs to consist of testing the most common, recurrent gene mutations. Changes in the tumor DNA that we know are contributing to the disease biology and also to the response of the leukemia to different genes.
Katherine Banwell:
Thank you for that, Dr. Eisfield. That helps guide us as we begin our conversation.
I imagine that personalizing therapy for a patient requires a number of tests and then thorough review of the test results. Could you provide an overview of the tests necessary to help understand a patient’s specific AML?
Dr. Eisfeld:
Yes. Absolutely. There are multiple things that go in. And let me –even before we go into the tests – point out one thing. Because as we talk about individualized care – and it is also important to keep in mind that it will be also dependent on the age and of the performance status of the patient.
Because we know that all the changes that are going to be reviewed might be more or less severe depending on really the age of the patient we are discussing. The most critical aspect for every AML patient is a bone marrow biopsy and a bone marrow aspirate on which the testing that I have been referring to are performed.
One, it gives us information about how the – after review of the hematologist, it gives us information about the specific kind of the leukemic cell.
And very importantly – and this is a very more recent development that we know about that’s important. It also tells us whether the acute leukemia is really happening as an acute leukemia or whether the patient without knowing it before might have had a precursor issue. And this is something that by now really in just about half a year we can use in addition to direct treatment.
So, it seems like an ancient thing that we think that the microscopic review is important. But that is one part of it.
The second part – and this is, again, all based on the bone marrow biopsy. The inspection of chromosomes, as I mentioned, may be called cytogenetics. This test takes longer. It sometimes takes up to two weeks to result. And similar, looking at the tumor DNAs and mutations that is done either if you’re at a large institution such as Ohio State or other cancer centers. It’s done in house. Whereas at smaller institutions, it would be done by a sent-out testing that has these recommended gene mutation testings done. And some of those result just within a couple of days.
And these are – but we can talk. And I know we are going to talk a little bit more about it later, but we now have targeted therapies available. This is a really super exciting topic we couldn’t have talked about just even five years ago. And those mutations and those DNA changes come back usually within three to five days.
So, that we are able to decide on treatment.
Katherine Banwell:
How can someone ensure they’re getting an accurate diagnosis?
Dr. Eisfeld:
That’s a very good question. I think the most important part is to go to somebody who has seen acute leukemias as a living. It is a very rare cancer as you know. And if you are seen even by a general oncologist who might be a fantastic oncologist, he might just see one or two cases per year. And thus, might not be up-to-date on the newest recommendations. So, I can just advise anybody – even if he lives further away and trusts his physician a lot – to – for the diagnosis and for treatment planning, come to a comprehensive cancer center, at least for a therapy planning. Because what is now possible is many of these treatments is that we can just give advice.
And then you can still receive treatment in some cases really back at home. But be sure the testing was done correctly. And really give you every option to take into consideration what the best treatment would be for you, what the best treatment is for the patient. Having this trip – which can be hours of a drive. And I appreciate this. Having that done once would be, I think, the best thing to do.
Katherine Banwell:
Many cancer types are typically staged. But that’s not the case with AML. AML is often considered low risk or high risk. Is that right?
Dr. Eisfeld:
Yes. And we – I think that’s very well how you put it. And we can even – they even add an intermediate risk by now to it. And I love this question because that’s what I like to study or what I’m studying here. The one important thing to keep in mind – and this is something even many hematologists don’t think about is that the risk assignment of acute leukemia, of AML if you think about it as low, or high, or intermediate risk is risk – or is actually better said not risk, but chances to respond to conventional chemotherapy. So, the way all this was defined is that if you have, for example, a multitude of chromosomal abnormalities – as you call it complex karyotypes – it would be considered adverse. This means your chances of responding to the standard of care in terms of chemotherapy are very, very low.
And similarly, if you have other changes such as a NPM1 mutation, your chances are considered very high. And but – so, the risk assignment with the increase of treatments now changes. We still also – and when I look at that, I think about it in the same way. But in my mind, if I’m talking to a patient, I’m trying to make sure to say, this is considered an intermediate or adverse risk.
But this means that I would not, at the first place, consider you for a standard chemotherapy but rather advise you to participate in a clinical trial or have an alternative care. The second implication especially for younger patients would be to – if you’re intermediate or adverse risk, that you would routinely be considered for bone marrow transplant or stem cell transplant.
Katherine Banwell:
Okay. So, what does it mean to be high risk then?
Dr. Eisfeld:
It means that your likelihood of going into remission – the standard of care is very low. This means – I mean, in very practical numbers, it might be as low as 20 or 30 percent. This meaning getting the leukemia into remission, there are very important differences. The first step at every time in the same high risk means if the patient receives the treatment, how high are the chances that we can get rid of the leukemia?
The second question is how high are the chances once it’s gone that it stays away? Or how high are the chances of relapse? In adverse risk most cases, it’s both – a combination of those. The chances of going into complete remission are lower and the chances of it coming back are higher. So, we have to be very aggressive. This means that we have to consider alternative treatment options. And even if we are then lucky and achieve remission, that we might have to move to more intensive additional treatments such as a bone marrow transplant.
Katherine Banwell:
Dr. Eisfeld, the landscape of AML has changed significantly in recent years. How have advances in testing improved patient care?
Dr. Eisfeld:
It is a different world, Katherine, honestly. I mean, I started practicing in hematology in taking care of AML patients back in Germany actually in the year 2007.
Back then, there was no other testing that was available. All we were guiding and all that we had available was morphology and cytogenetics. And very often, it was very inaccurate. And we also only had two treatment kinds available. One was intensive chemotherapy, and one was something that was just a little bit better than best supportive care. So, many patients could not receive treatment. And the increase in knowledge that we have on a molecular level in AML really did two things at once. On one, we understood we had a more fine tuned understanding on which patients would respond. And the second thing is that this knowledge about the molecular landscape enabled us to have new treatments available that are sometimes in pill form that can target specific mutations in patients who carry these genetic changes.
Katherine Banwell:
Should all AML patients undergo in-depth testing like biomarker testing or cytogenetics?
Dr. Eisfeld:
Yes. Every patient should do that. It can make the difference between life and death. And it can make the difference between receiving – having a hospital stay of four weeks with intensive chemotherapy versus taking the pill at home. This is very rare that this is possible. But it is possible. And of course, you – one would not want to miss this chance if it would be possible.
Katherine Banwell:
With all the new tools that are available, what other factors do you consider when working with an AML patient to choose a treatment approach for them?
Dr. Eisfeld:
The most important aspects are what we call – and this is – I’m glad that you bring this question up because I feel you have to think of – and that was what we’ve been talking about – called disease-associated factors. This is everything in the leukemic cell. They – how does a leukemia looks like? How does the blast look like? What changes are there?
That’s the biggest part of what I would call patient-associated factors: the patient age, the patient performance status, actually the patient. In every – because I think, sometimes, we forget about it. But we just look at all the molecular testing.
But even if – for example, there would be a patient with a very good risk leukemia, where I think, “Oh, this leukemia should respond very well to an intensive chemotherapy.”
If the patient cannot tolerate chemotherapy or – and I see it more often than I would wish for patients who are young who have a great performance status, but they just cannot – they – their family reasons. Small children sometimes – they just cannot be away for so long. This all comes into consideration. So, it’s really important because we all work together as a team. And the right treatment for the leukemia might not be the right treatment for the patient.
And for most cases, however, I think, it will only work if one stands with a whole heart with those physicians, and patients, and family. Because it’s a long journey behind the care that’s being given. And so, this is a joint decision-making, and there are different options that can be done. Of course, I would not advise something where I would think there are no chances of success.
And so, this has to be an open discussion. But this is – it’s very often a very tough treatment to communicate that and see what are the goals of each patient? That will be most important for treatment and decision-making.
Kathrine Banwell:
Dr. Eisfeld, we’ve been discussing treatment choices and how they vary for individual patients. What types of AML treatment classes are currently available?
Dr. Eisfeld:
This is a very good question. The most classic treatment class is intensive chemotherapy. This is just because people might have heard the names. It is called 3 + 7 or 7 + 3, which refers to one weeklong impatient chemotherapy treatment. But you get one chemotherapy for seven days. And the first three days, you get a second treatment as well.
That’s why it’s called three in seven in here, but it’s a total of seven days. So, we have intensive chemotherapy. And there are different flavors of it. But this is usually the backbone. The second class is what I would call a targeted inhibitor. And here we can look at two different aspects. We have target inhibitors for a specific DNA mutation that are found. And specifically, one are called IDH or FLT3 mutations.
And these are pill forms that I usually by now combined with a third drop class which is called hypomethylating agents. And I will go through in a moment.
But these are pills that really only work in patients and carry that genetic change. They have very, very low toxicity and very high chances of working. So, that’s why this testing is so important to see if one is one of the 15 percent of AML patients carrying an IDH mutation – 15 percent isn’t low. And a similar rate carries a FLT3 mutation.
And then there is also going to target inhibitors. That is targeted because it is against what I would call a pathway. The gene that is commonly activated in acute leukemia – and this is called BCL-2 and the drug is called venetoclax (Venclexta).
This is now stormed through the acute myeloid leukemia world in just a few years ago and has been approved as a front-line treatment option for several patients, especially for those who are older. And we know that even patients who respond usually favorably to chemotherapy, some of those also respond well to venetoclax the Bcl-2 inhibitor. The benefit is that this treatment in many cases if it works, can be done as an outpatient in here and has very often lower complications.
It is actually has so good results that I – sometimes it seems too easy. So, we actually advise patients to still try to get – the first time they get the treatment, do it at a center where it’s done more commonly. Because it sometimes – don’t underestimated the power of a pill. And it’s still a very, very powerful drug. So, doing it in a controlled setting – because if cancer cells break down, they break down and can create all sorts of trouble.
So, that is really something – for several leukemias, it can be concerning. And again, now the treatment group would be called hypomethylating agents. The names are azacitidine (Vidaza) and decitabine (Dacogen). And they act in a very different way. They try to change the epigenetics like methylation patterns. And often, if it is an untargeted way of the tumor cells and they can be used alone.
Or very often by now in combination with the targeted inhibitors that I was just mentioning. These are infusions that can be done either over five, seven, or 10 days depending on the combination treatment. And for patients, as I mentioned before, that don’t respond well to many other options to those patients with a complex karyotype. This is, for example, a scenario where patients can just receive this as their only therapy.
Katherine Banwell:
What about stem cell transplant? You didn’t mention that.
Dr. Eisfeld:
Yes. That would be the next one. So, stem cell transplant always comes as an option, which I would call as a maintenance therapy. Again, two aspects. We have two different end goals.
First is get rid of some leukemia. Second is to make sure it stays away. And as soon as the leukemia is in complete remission, depending on the performance status – the agent. Again, in multiple different things. It’s not an easy decision.
At that time, there has to be a conversation. And that always involves a leukemia physician and a transplant physician very often. These are different providers that goes for the risks and benefits. Where the question is if I only continue to do chemotherapy – because it’s never only once. You would always have to repeat your chemotherapy. What is the likelihood that the leukemia comes back, and does it outweigh the risks that comes with the stem cell or bone marrow transplant that comes in here. But for many leukemias, especially for young patients and for patients with higher risks, this is the only chance of a cure. That is the most curative and only curative attempt for many leukemia attempts.
Katherine Banwell:
Where do clinical trials fit into the treatment plan?
Dr. Eisfeld:
That is the absolute backbone. We always have to think about that.
Everything – all the treatment options that I mentioned – have been clinical trials, just very, very short time – very few years ago. So, every patient that comes to a leukemia or a cancer center, clinical trials will be discussed if they’re available. Because they will provide a special opportunity to have even more fine-tuned treatments – either newer agents. And I think what is very important to mention is that all clinical trials that are available would give the option of the best standard of care. And then the hope that a patient wouldn’t be getting any of the best standard of care options that are approved. The hope is that the new agent or added agent in many cases would even do better.
It’s also important that there’s a lot of additional monitoring during the trial. I think it can be seen in two ways as two parts of a coin. In one way, it may be additional visits to the hospital or additional blood draws that are necessary to be sure that the medications are safe, and that researchers and conditions can learn about it. But on the other hand, it also gives you this extra bit of being looked after and really getting checked in and out, making sure that all organs are functioning that everything is just going fine. And many patients appreciate this a lot. And they have this pair of extra eyes on them all the time.
Katherine Banwell:
Dr. Eisfeld, what therapies are available for AML patients who relapse or don’t respond to initial therapy? And is this treatment approach different from those who are newly diagnosed?
Dr. Eisfeld:
Most of the time, the treatments available at relapse are the same available at the first diagnosis. Just because we know now that, for example, if you have a molecular marker that, for example, is available, it would act with also relatively high chance of relapse upset. However, at relapse, the most important thing I personally would do is consider a clinical trial even stronger than in the first mindset.
Because it means that the leukemia outsmarted current treatments very often. So, usually what we would be doing is see if there is a targeted inhibitor or a cell mutation FLT3 or IDH, which I would personally always prefer to go in MLL rearrangement now for the new menin inhibitors where one would go with the same option as if it would have been their diagnosis. But if not to really consider clinical trials is a strong urge.
Katherine Banwell:
Should patients or should relapse patients undergo genetic testing again? Is it necessary?
Dr. Eisfeld:
Yes. At any time. Yes. Because we know that the leukemia changes. And you just can think about it in the way is that the cells that are surviving treatment, they’ve become smart. There was so much poison. There was so much treatment put on them.
And the ones that survive might have a quiet additional chromosome change as additional gene changes. And even if a genetic change has not been present at time of diagnosis, the reason the cell has survived might have been that it has now one of these changes that came up on a later time during treatment or while the cell is hiding somewhere to come back.
Katherine Banwell:
Are there therapies in development that are showing promise for patients with AML?
Dr. Eisfeld:
There are so many of those. It’s hard to count. And this makes me very happy. There are exciting and again, targeted drugs.
Once drug class is called menin inhibitors, which we – which were just published that show high promise.
And again, very difficult to treat several groups of patients who harbor chromosome changes in MLL genes in here. So, that is a very exciting option.
And there’s very exciting treatments with respect to what you call antibodies – monoclonal antibodies that protects the surface proteins that are being checked regularly. And one of those, for example, is called magrolimab. And that has even promise in these high-risk leukemias or adverse risk leukemias.
And then we are not there yet, but I’m sure we will be in the not too near future. There are also multiple trials that are looking at what we call CAR-T cells. But patients might have heard about for lymphomas or acute lymphoblastic leukemias. AML is a little more tricky with respect to those.
But we’ve seen pre-clinical studies that look really exciting. And I think it’s just going to be just a little more fine-tuning to make those easier, available, and more targeted for AML patients. And I’m very much looking forward to seeing those come more onto the market.
Katherine Banwell:
You mentioned the new menin inhibitors. Who are they right for?
Dr. Eisfeld:
We try to find out more, but definitely for patients that have been shown to be beneficial for patients who have chromosomal and rearrangements of the MLL gene or KMT2A gene. And there’s also good data on patients who have NPM1 mutations.
Even though we know – and these are mutations who harbor this kind of genetic change – have now a plethora, which is a great, of treatment options.
Because we know even conventional chemotherapy has been working decently well in them. We know that venetoclax also is supposed to work very well in them. But again, the data on the menin inhibitor with respect to NPM1 mutations is very exciting.
Katherine Banwell:
So, Dr. Eisfeld, we’ve covered a lot of information related to AML care. As a researcher, what other topics are currently top of mind for you in the field of AML? What are you passionate about?
Dr. Eisfeld:
Again, so many parts. I think there are probably three main things that I’d like to name. And I think about it as a little bit outside the box. Most of what we know about AML, we have become so much better. It’s because we have been studying patients who were treated over the past decades on clinical trials and very often here in the U.S. or in Europe.
But all clinical trials have a bias in that most of them have been done A) on patients who are younger than the age of 60. And B) fewer patients of other races and ethnicities included. And had patients not included that have AML, for example, not only in the bone marrow but on extramedullary sites – how we call it – up to 10 percent of their patients. And also, very often have not been done on very old patients where the AML is very common. So, all the patients – patients from other race, ethnicities, or underrepresented minorities, and patients who present with extramedullary disease are currently in my – underserved.
And these are exciting areas and opportunities of research and of active clinical practice. Because those are the patients we need to include if it’s possible now to include them in clinical trials.
If there are no trials available, then make sure any other additional molecular testing it done to understand them better and to advance our disease knowledge that we make sure that we can give the best possible care.
Katherine Banwell:
I think that the most important part is to get the molecular testing, and to enroll into clinical trials, and then to very often biobanking.
Why am I saying that is because our knowledge AML comes from patients who donated some tissue so that we could learn – researchers decades ago could learn about the genes. We know that leukemias differ so much in between patients.
So, I am worried that we are yet missing out on potentially important genes that need to be discovered and where we could develop docs for. This will only be possible with these additional testing.
The second part is to really consider going to larger treatment and larger treatment cancer center. And there are support systems in case that can help in here.
And the third part is to get involved even as early as possible even if you’re not personally affected, with Be The Match – with bone marrow transplant because there’s a paucity of donors, of people of color that makes it harder for these patients to get a potentially curative treatment in here.
We have other options now in bone marrow transplant where one can use only half-matching donors and or other availabilities. But again, that doesn’t outweigh that the bone marrow and donor registry that we need to get better at.
And I can – there are just so many factors – such a high degree of structural racism that affects people from every corner. And I think we as physicians, as society, and everybody need to acknowledge that. And we have to make sure that we get better to, again, give every patient the best care and keep the patient in mind and see what’s right for them at the right moment.
Katherine Banwell:
Where can patients or people who are interested find out about being a donor?
Dr. Eisfeld:
There is the website called “Be the Match” that one can put in. This is probably the best way to get first information.
And usually, at all the cancer sites. And sometimes, there is information at lab donation places, universities, either or the American Red Cross.
Usually those places have information laid out there as well.
Katherine Banwell:
Dr. Eisfeld, before we close, I’d like to get your thoughts on where we stand with progress in the field of AML. What would you like to leave the audience with? Are you hopeful?
Dr. Eisfeld:
I am incredibly hopeful. I hope – when I started working in hematology, as I said at that time, it was just about when imatinib (Gleevec) came out. Which is this CML pill that really revolutionized care. And so, at that time, I would be – all patients on that bone marrow transplant service had chronic myeloid leukemia. And because they all had to undergo bone marrow transplant. Then Gleevec came, and today, there are no such patients who are see or very rarely that require such intensive care.
So, I am very hopeful that in my practice time, which hopefully –and even earlier on – that there will be a time where we find targeted therapies for almost all patients.
Katherine Banwell:
Dr. Eisfeld, thank you so much for joining us today.
Dr. Eisfeld:
It’s an absolute pleasure. And if there are ever any questions, please feel free to reach out. For patients who reach out, we are there to talk to all of you and give advice as good as we can or put you in contact with the right people.
Katherine Banwell:
Thank you. And thank you to all of our collaborators. To learn more about AML and to access tools to help you become a proactive patient, visit powerful patients.org. I’m Katherine Banwell. Thanks for joining us today.
MPN Essential Testing | How Results Impact Care & Treatment Options
/in MPN Newly Diagnosed, MPN Programs, MPN Treatments and Clinical Trials, MPN Videos ND, MPN Videos TC, Myeloproliferative Neoplasms, Thrive MPN, Thrive MPN Treatment Options /by Kara RayburnMPN Essential Testing | How Results Impact Care & Treatment Options from Patient Empowerment Network on Vimeo.
How could molecular testing affect MPN treatment decisions? Dr. Raajit Rampal explains the purpose of this essential testing and how the results may impact prognosis and care.
Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.
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Transcript:
Katherine Banwell:
Let’s talk about what sort of tests should be done following an MPN diagnosis. Can you tell me about those?
Dr. Raajit Rampal:
Yeah. Fundamental to the MPN itself, the things that we really want to know is, in most cases, a bone marrow examination is needed because that will tell us really what the disease is that we’re dealing with. It will tell us about the genetics. I strongly believe we have to be comprehensive in our genetic assessments because that does prognosticate and sometimes gives us an opportunity in terms of treatment. Chromosomal analysis. These are the basic bread and butter hematology tests we want to do from the bone marrow to really understand what the patient’s disease is.
Beyond that, I think that particularly in patients with PV and ET, it’s important that we partner with their primary care physicians to make sure that they’ve had, for example, testing for diabetes, a recent lipid profile, any cardiovascular tests, particularly measurements of blood pressure because these things are all important in terms of an ET or PV patient’s risk of having a blood clot. So, there are, again, things that are within hematology realm but then, there are other general health things that become really important in somebody who is diagnosed with PV or ET.
Katherine Banwell:
How often should lab tests of blood work be done?
Dr. Raajit Rampal:
It really depends on the patient. For some patients with PV, for example, they need to have their blood checked every three weeks because they’re having frequent phlebotomies. Whereas some patients with ET could probably go forward to six months between blood tests. So, it depends on the individual.
Katherine Banwell:
How can results of biomarker testing affect treatment choices for patients with MPNs?
Dr. Raajit Rampal:
Great question. The genetics are becoming increasingly important in our treatment decisions. So, let’s take a simple example, which is patients with ET. Calreticulin and JAK2 and MPL are the three most common mutations that we see. But they have very different invocation. So, somebody could have a calreticulin-mutated ET and based on them having that calreticulin mutation and no other factors like no history of clotting, that patient may never need to go on a medication aside from aspirin. And even early on, it’s debatable whether or not some of these patients really need aspirin at all.
Whereas somebody who had a JAK-2 mutant ET, our guidelines and data suggests that that person, once they reach a certain age, should probably be on medication. So, that’s kind of perhaps one of our more clearcut examples of a genetic biomarker telling us how to approach treatment.
And then, it gets more nuanced from that and more exciting and interesting in the sense that there are mutations, for example, that occur in myelofibrosis and in patients whose disease is progressing towards leukemia, such as IDH mutations. And these are things that are now targetable with FDA-approved drugs.
And there are now clinical trials combining JAK inhibitors and IDH inhibitors for patients who have more advanced disease who have these IDH mutations. So, you go from on one end, these genomic markers being of prognostic significance and now, on the other hand, we’re getting to a point where, in some cases, they might tell us how to best treat a patient.
Katherine Banwell:
Dr. Rampal, should all patients diagnosed with MPNs undergo molecular testing?
Dr. Raajit Rampal:
I strongly believe that. I think that we’ve learned so much that these tests have prognostic value.
And in some cases, it may suggest a slightly different diagnosis. I definitely think that should be the case.
Katherine Banwell:
What should patients be asking once they have the results?
Dr. Raajit Rampal:
What does it mean? That’s the most basic and fundamental question. It’s one thing to get a list of mutations. But the real bread and butter question is what does this mean to the disease and my prognosis and my treatment? Those are the key questions.
Thriving With an MPN | Advice for Setting Goals and Making Treatment Decisions
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Dr. Raajit Rampal shares his perspective on what it means to thrive with an MPN. Dr. Rampal goes on to discuss the factors that impact therapy as well as advice for setting treatment goals for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).
Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.
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Transcript:
Katherine Banwell:
In your experience, what do you think it means to thrive with an MPN?
Dr. Raajit Rampal:
It’s a great question, right. I think taking a step back, when we think about our patients with MPNs, one of the questions I always have for patients are what are your goals? And inevitably and invariably, people want two things. They want to live longer and they want to live better. And so, I think that thinking about thriving with an MPN to me is about how do we minimize the impact of an MPN in someone’s life. And that means a couple of things. One that means how do we deal with symptoms or things that are causing medical problems.
But two, how do we deal with the anxiety of a diagnosis? In many cases in my experience, that can be just as detrimental to somebody’s well-being as the actual physical symptoms of the disease.
Katherine Banwell:
When it comes to choosing therapy for polycythemia vera essential thrombocythemia, or myelofibrosis, it’s important to work with your healthcare team to identify what is going to work best for you. So, to begin, would you define shared decision-making and why is this critical to properly managing life with an MPN?
Dr. Raajit Rampal:
Yeah. Shared decision-making, to me, is really about the physician or whoever is on the healthcare team providing the patient all of the information needed to make a good decision. That means what are we trying to do? What is the medication or invention going to accomplish? What are the side effects because there are always side effects.
And what do we think that’s going to do or how is that going to impact the patient’s life? Where things get nuanced is that patients come to us because we have expertise. There are two extremes. One extreme is that the physician says this is the medication you should take. End of discussion. The other extreme though is also not helpful, which is to say to a patient here are five choices. Here are the side effects. You pick one. Our job is to lay out those side effects and the benefits but then, also help guide a decision.
Katherine Banwell:
What are treatment goals, and how are they determined?
Dr. Raajit Rampal:
It depends on the disease to a large extent. Now, when we’re dealing with ET and PV, the primary goal of our interventions is to reduce the risk of a clotting event or bleeding event. And that usually involves controlling the blood counts in some cases, not in all patients with ET.
Sometimes aspirin is all we do. Myelofibrosis is a little bit more complicated because it depends on what the problem is. Not all myelofibrosis patients have the same challenges. Some have anemia that needs treatment. Some have a big spleen. Some have symptoms and some have nothing and they just need observation. So, it’s a bigger list with MF patients. But I think the first part of the discussion always is defining what the goal needs to be.
Katherine Banwell:
What factors are considered when choosing therapy for ET, PV, and MF?
Dr. Raajit Rampal:
I think a couple of things. One is what medication we think is going to benefit the patient best. That has to take into account the individual, their willingness to take certain medications, for example, pills versus interferon injection. Some people have an aversion to self-injection, which we have to take that into account. What are the other medical conditions that the patient is dealing with?
And the reality is, in some cases, it’s cost because these medications, depending on a patient’s insurance, can have quite a different spread in terms of cost. Unfortunately, that is something we have to take into account.
Head and Neck Cancer Alliance
/in Partners, PEN Partner /by Kara RayburnHNCA provides educational, financial, and peer-to-peer support for head and neck cancer patients and caregivers, invests in research in head and neck oncology and educates the public about the disease process, treatment, and prevention of oral, head and neck cancers.
Patient-Centric Care
/in Marie Ennis-O'Connor, Patient Empowerment, PEN Blog /by Marie Ennis-O'ConnorTailoring Information to Meet the Changing Needs of Patients Along Their Healthcare Journey
Being diagnosed with cancer can be a frightening experience. The diagnosis can bring up a range of emotions such as fear, shock, anger, and sadness. When I was diagnosed with breast cancer, I was initially overwhelmed by the flood of information that came my way. It seemed like there was so much to learn about the disease, its treatment options, and the potential outcomes. I found that trying to process all this information while dealing with the emotional impact of the diagnosis was incredibly challenging. It was difficult to know where to start or how to make sense of it all.
When making decisions about cancer treatment, it’s important to take your time, get organized, and be informed. Breast surgeon, Dr. Deanna Attai of the David Geffen School of Medicine at the University of California Los Angeles recommends that patients approach their appointments with a clear plan and bring along a trusted friend or family member if possible.
Having someone you trust with you during appointments can help provide support, ask questions, and take notes on important information that you may not remember later. But if you’re unable to bring someone with you, Dr. Attai suggests requesting a recording of the consultation so that you can review it later and focus solely on listening during the appointment.
Sorting through information and making treatment decisions can be overwhelming. It’s important to take the time to do research and ask questions of your healthcare team. Don’t be afraid to ask for clarification or more information if needed. The more informed you are about your options, the better equipped you will be to make the best decision for you.
It’s also helpful to stay organized and keep track of all the information you receive. This can be done by taking notes during appointments, keeping a binder or folder with important documents and test results, and creating a list of questions to bring to your appointments. By staying organized and informed, you can feel more in control of your healthcare journey and make decisions with confidence.
Changing Information Needs
As my own cancer journey progressed, my information needs changed. Initially, I focused on understanding my diagnosis and treatment options. During treatment, however, I became more interested in coping with side effects and managing the emotional toll of a cancer diagnosis. It was at this point that I discovered that the information provided by healthcare professionals didn’t always keep pace with my changing needs. This is when I turn to the internet to seek out more information.
While there is a wealth of health information available online, it’s important to approach it with a critical eye. Not all sources are trustworthy or accurate. That’s why it’s crucial to learn how to evaluate the information you find online. This previous article How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you.
It’s important to remember that not all information is relevant to every patient, and what works for one person may not work for another. That’s why it’s essential to discuss what you find online with your healthcare team and ask them to help you put the information into context for your particular situation. They can help you sort through the information and determine which sources are credible and relevant to your needs.
Information Is Power
As a patient, I know that information is power. Feeling empowered and informed throughout my healthcare journey has been crucial in helping me make the best decisions for my health in line with my own personal values and needs. For example, when I was diagnosed with breast cancer, the information that was provided to me wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease. It’s crucial that healthcare providers take the time to understand the unique needs of their patients and provide tailored information that helps them make informed decisions about their healthcare. Research has shown that when healthcare providers provide the right information at the right time, it increases the patient’s ability to have a more active role in decision-making.
Information and Shared Decision Making
Information plays a critical role in shared decision-making (SDM). In shared decision-making, patients and healthcare providers work together to make healthcare decisions. In order to achieve this, patients need to have access to relevant, accurate, and understandable information about their healthcare options. Providing patients with this information in a non-judgmental, unbiased, and clear manner is the responsibility of healthcare providers. It is important to provide information on the potential benefits and risks of various treatment options, the likelihood of success, and any possible side effects of medications or procedures. SDM should also consider the patient’s personal circumstances, preferences, and values.
It is the responsibility of healthcare providers to ensure that patients understand the information they receive. This may involve using visual aids, providing written materials, or using plain language to explain complex medical concepts. It is also important to give patients the opportunity to ask questions and clarify any misunderstandings they may have.
One of the key benefits of providing information in shared decision-making is that it empowers patients to take an active role in their healthcare. When patients are informed and engaged, they are better able to make decisions that align with their personal goals and preferences. Research studies have shown that patients are more satisfied with their care when they are more engaged and involved in decision-making. Furthermore, patients who are actively involved in decision-making experience less decisional conflict. Decisional conflict refers to feelings of anxiety, uncertainty, and doubt that patients may experience when making a healthcare decision. Including patients in decision-making can reduce negative emotions and improve patients’ overall well-being.
Conclusion
It has been many years since I received my diagnosis of breast cancer and as I reflect back on the journey I have taken to becoming a patient advocate, I can see how the sources of information I received helped me progress along the way.
In the beginning, I relied on information from my doctors, followed by my own research on the Internet, and then finally connecting with fellow patients online. I gained confidence as I learned more about my disease and treatments, and now I try to help people who are going through a similar thing.
As patient advocates, I firmly believe that it is our responsibility to ensure that all patients receive information that is timely, accurate, and easy to understand, to help them make informed decisions. We, as cancer patients, have accumulated a wealth of valuable information and knowledge through our personal experiences, and it’s crucial that we share this knowledge generously with those who are now starting their own patient journeys.
Expert Advice for Navigating AML Treatment and Care Decisions
/in Acute Myeloid Leukemia, AML Insist, AML Insist Treatment, AML Newly Diagnosed, AML Programs, AML Testing, AML Treatments and Clinical Trials, AML Video ND, AML Video T, AML Video TC /by Kara RayburnExpert Advice for Navigating AML Treatment and Care Decisions from Patient Empowerment Network on Vimeo.
AML expert Dr. Ann-Kathrin Eisfeld reviews the importance of essential testing and explains how the results may impact the care and treatment of patients with AML. Dr. Eisfeld also shares updates on new and developing AML research.
Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.
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Related Resources:
How Does the Presence of Molecular Markers Affect AML Care?
Does Maintenance Therapy Have a Role in AML Care?
Transcript:
Katherine Banwell:
Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. Today’s program is a part of our Insist series. We’ll discuss how to access the most personalized AML therapy for your individual disease and why it’s vital to insist on key testing. Before we meet our guest, let’s review a few important details
The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Ann-Kathrin Eisfeld. Dr. Eisfeld, welcome. Would you please introduce yourself?
Dr. Eisfeld:
Hi, thank you so much, Kathrine. Yes. My name is Ann-Kathrin Eisfeld. I’m currently an assistant professor and hematologist at the Ohio State University.
And I’m also serving as the director of the Clara D. Bloomfield Center for leukemia outcomes research at the James.
Katherine Banwell:
Thank you so much for joining us today and taking the time to discuss this important issue. To set the stage for today’s discussion, Let’s start with this important question. How would you define personalized medicine as it relates to AML care?
Dr. Eisfeld:
I define personalized medicine in AML as have a complete testing at time of diagnosis that consists of not only the morphology of the bone marrow, but we call immunophenotyping, which is looking at the surface markers, but also full review of all the chromosomes, which is called cytogenetics. And with those metaphase testing, I’m looking really at all of them and at the hot spots, which is done by a technique called FISH.
And then most importantly, for personalized testing, it also needs to consist of testing the most common, recurrent gene mutations. Changes in the tumor DNA that we know are contributing to the disease biology and also to the response of the leukemia to different genes.
Katherine Banwell:
Thank you for that, Dr. Eisfield. That helps guide us as we begin our conversation.
I imagine that personalizing therapy for a patient requires a number of tests and then thorough review of the test results. Could you provide an overview of the tests necessary to help understand a patient’s specific AML?
Dr. Eisfeld:
Yes. Absolutely. There are multiple things that go in. And let me –even before we go into the tests – point out one thing. Because as we talk about individualized care – and it is also important to keep in mind that it will be also dependent on the age and of the performance status of the patient.
Because we know that all the changes that are going to be reviewed might be more or less severe depending on really the age of the patient we are discussing. The most critical aspect for every AML patient is a bone marrow biopsy and a bone marrow aspirate on which the testing that I have been referring to are performed.
One, it gives us information about how the – after review of the hematologist, it gives us information about the specific kind of the leukemic cell.
And very importantly – and this is a very more recent development that we know about that’s important. It also tells us whether the acute leukemia is really happening as an acute leukemia or whether the patient without knowing it before might have had a precursor issue. And this is something that by now really in just about half a year we can use in addition to direct treatment.
So, it seems like an ancient thing that we think that the microscopic review is important. But that is one part of it.
The second part – and this is, again, all based on the bone marrow biopsy. The inspection of chromosomes, as I mentioned, may be called cytogenetics. This test takes longer. It sometimes takes up to two weeks to result. And similar, looking at the tumor DNAs and mutations that is done either if you’re at a large institution such as Ohio State or other cancer centers. It’s done in house. Whereas at smaller institutions, it would be done by a sent-out testing that has these recommended gene mutation testings done. And some of those result just within a couple of days.
And these are – but we can talk. And I know we are going to talk a little bit more about it later, but we now have targeted therapies available. This is a really super exciting topic we couldn’t have talked about just even five years ago. And those mutations and those DNA changes come back usually within three to five days.
So, that we are able to decide on treatment.
Katherine Banwell:
How can someone ensure they’re getting an accurate diagnosis?
Dr. Eisfeld:
That’s a very good question. I think the most important part is to go to somebody who has seen acute leukemias as a living. It is a very rare cancer as you know. And if you are seen even by a general oncologist who might be a fantastic oncologist, he might just see one or two cases per year. And thus, might not be up-to-date on the newest recommendations. So, I can just advise anybody – even if he lives further away and trusts his physician a lot – to – for the diagnosis and for treatment planning, come to a comprehensive cancer center, at least for a therapy planning. Because what is now possible is many of these treatments is that we can just give advice.
And then you can still receive treatment in some cases really back at home. But be sure the testing was done correctly. And really give you every option to take into consideration what the best treatment would be for you, what the best treatment is for the patient. Having this trip – which can be hours of a drive. And I appreciate this. Having that done once would be, I think, the best thing to do.
Katherine Banwell:
Many cancer types are typically staged. But that’s not the case with AML. AML is often considered low risk or high risk. Is that right?
Dr. Eisfeld:
Yes. And we – I think that’s very well how you put it. And we can even – they even add an intermediate risk by now to it. And I love this question because that’s what I like to study or what I’m studying here. The one important thing to keep in mind – and this is something even many hematologists don’t think about is that the risk assignment of acute leukemia, of AML if you think about it as low, or high, or intermediate risk is risk – or is actually better said not risk, but chances to respond to conventional chemotherapy. So, the way all this was defined is that if you have, for example, a multitude of chromosomal abnormalities – as you call it complex karyotypes – it would be considered adverse. This means your chances of responding to the standard of care in terms of chemotherapy are very, very low.
And similarly, if you have other changes such as a NPM1 mutation, your chances are considered very high. And but – so, the risk assignment with the increase of treatments now changes. We still also – and when I look at that, I think about it in the same way. But in my mind, if I’m talking to a patient, I’m trying to make sure to say, this is considered an intermediate or adverse risk.
But this means that I would not, at the first place, consider you for a standard chemotherapy but rather advise you to participate in a clinical trial or have an alternative care. The second implication especially for younger patients would be to – if you’re intermediate or adverse risk, that you would routinely be considered for bone marrow transplant or stem cell transplant.
Katherine Banwell:
Okay. So, what does it mean to be high risk then?
Dr. Eisfeld:
It means that your likelihood of going into remission – the standard of care is very low. This means – I mean, in very practical numbers, it might be as low as 20 or 30 percent. This meaning getting the leukemia into remission, there are very important differences. The first step at every time in the same high risk means if the patient receives the treatment, how high are the chances that we can get rid of the leukemia?
The second question is how high are the chances once it’s gone that it stays away? Or how high are the chances of relapse? In adverse risk most cases, it’s both – a combination of those. The chances of going into complete remission are lower and the chances of it coming back are higher. So, we have to be very aggressive. This means that we have to consider alternative treatment options. And even if we are then lucky and achieve remission, that we might have to move to more intensive additional treatments such as a bone marrow transplant.
Katherine Banwell:
Dr. Eisfeld, the landscape of AML has changed significantly in recent years. How have advances in testing improved patient care?
Dr. Eisfeld:
It is a different world, Katherine, honestly. I mean, I started practicing in hematology in taking care of AML patients back in Germany actually in the year 2007.
Back then, there was no other testing that was available. All we were guiding and all that we had available was morphology and cytogenetics. And very often, it was very inaccurate. And we also only had two treatment kinds available. One was intensive chemotherapy, and one was something that was just a little bit better than best supportive care. So, many patients could not receive treatment. And the increase in knowledge that we have on a molecular level in AML really did two things at once. On one, we understood we had a more fine tuned understanding on which patients would respond. And the second thing is that this knowledge about the molecular landscape enabled us to have new treatments available that are sometimes in pill form that can target specific mutations in patients who carry these genetic changes.
Katherine Banwell:
Should all AML patients undergo in-depth testing like biomarker testing or cytogenetics?
Dr. Eisfeld:
Yes. Every patient should do that. It can make the difference between life and death. And it can make the difference between receiving – having a hospital stay of four weeks with intensive chemotherapy versus taking the pill at home. This is very rare that this is possible. But it is possible. And of course, you – one would not want to miss this chance if it would be possible.
Katherine Banwell:
With all the new tools that are available, what other factors do you consider when working with an AML patient to choose a treatment approach for them?
Dr. Eisfeld:
The most important aspects are what we call – and this is – I’m glad that you bring this question up because I feel you have to think of – and that was what we’ve been talking about – called disease-associated factors. This is everything in the leukemic cell. They – how does a leukemia looks like? How does the blast look like? What changes are there?
That’s the biggest part of what I would call patient-associated factors: the patient age, the patient performance status, actually the patient. In every – because I think, sometimes, we forget about it. But we just look at all the molecular testing.
But even if – for example, there would be a patient with a very good risk leukemia, where I think, “Oh, this leukemia should respond very well to an intensive chemotherapy.”
If the patient cannot tolerate chemotherapy or – and I see it more often than I would wish for patients who are young who have a great performance status, but they just cannot – they – their family reasons. Small children sometimes – they just cannot be away for so long. This all comes into consideration. So, it’s really important because we all work together as a team. And the right treatment for the leukemia might not be the right treatment for the patient.
And for most cases, however, I think, it will only work if one stands with a whole heart with those physicians, and patients, and family. Because it’s a long journey behind the care that’s being given. And so, this is a joint decision-making, and there are different options that can be done. Of course, I would not advise something where I would think there are no chances of success.
And so, this has to be an open discussion. But this is – it’s very often a very tough treatment to communicate that and see what are the goals of each patient? That will be most important for treatment and decision-making.
Kathrine Banwell:
Dr. Eisfeld, we’ve been discussing treatment choices and how they vary for individual patients. What types of AML treatment classes are currently available?
Dr. Eisfeld:
This is a very good question. The most classic treatment class is intensive chemotherapy. This is just because people might have heard the names. It is called 3 + 7 or 7 + 3, which refers to one weeklong impatient chemotherapy treatment. But you get one chemotherapy for seven days. And the first three days, you get a second treatment as well.
That’s why it’s called three in seven in here, but it’s a total of seven days. So, we have intensive chemotherapy. And there are different flavors of it. But this is usually the backbone. The second class is what I would call a targeted inhibitor. And here we can look at two different aspects. We have target inhibitors for a specific DNA mutation that are found. And specifically, one are called IDH or FLT3 mutations.
And these are pill forms that I usually by now combined with a third drop class which is called hypomethylating agents. And I will go through in a moment.
But these are pills that really only work in patients and carry that genetic change. They have very, very low toxicity and very high chances of working. So, that’s why this testing is so important to see if one is one of the 15 percent of AML patients carrying an IDH mutation – 15 percent isn’t low. And a similar rate carries a FLT3 mutation.
And then there is also going to target inhibitors. That is targeted because it is against what I would call a pathway. The gene that is commonly activated in acute leukemia – and this is called BCL-2 and the drug is called venetoclax (Venclexta).
This is now stormed through the acute myeloid leukemia world in just a few years ago and has been approved as a front-line treatment option for several patients, especially for those who are older. And we know that even patients who respond usually favorably to chemotherapy, some of those also respond well to venetoclax the Bcl-2 inhibitor. The benefit is that this treatment in many cases if it works, can be done as an outpatient in here and has very often lower complications.
It is actually has so good results that I – sometimes it seems too easy. So, we actually advise patients to still try to get – the first time they get the treatment, do it at a center where it’s done more commonly. Because it sometimes – don’t underestimated the power of a pill. And it’s still a very, very powerful drug. So, doing it in a controlled setting – because if cancer cells break down, they break down and can create all sorts of trouble.
So, that is really something – for several leukemias, it can be concerning. And again, now the treatment group would be called hypomethylating agents. The names are azacitidine (Vidaza) and decitabine (Dacogen). And they act in a very different way. They try to change the epigenetics like methylation patterns. And often, if it is an untargeted way of the tumor cells and they can be used alone.
Or very often by now in combination with the targeted inhibitors that I was just mentioning. These are infusions that can be done either over five, seven, or 10 days depending on the combination treatment. And for patients, as I mentioned before, that don’t respond well to many other options to those patients with a complex karyotype. This is, for example, a scenario where patients can just receive this as their only therapy.
Katherine Banwell:
What about stem cell transplant? You didn’t mention that.
Dr. Eisfeld:
Yes. That would be the next one. So, stem cell transplant always comes as an option, which I would call as a maintenance therapy. Again, two aspects. We have two different end goals.
First is get rid of some leukemia. Second is to make sure it stays away. And as soon as the leukemia is in complete remission, depending on the performance status – the agent. Again, in multiple different things. It’s not an easy decision.
At that time, there has to be a conversation. And that always involves a leukemia physician and a transplant physician very often. These are different providers that goes for the risks and benefits. Where the question is if I only continue to do chemotherapy – because it’s never only once. You would always have to repeat your chemotherapy. What is the likelihood that the leukemia comes back, and does it outweigh the risks that comes with the stem cell or bone marrow transplant that comes in here. But for many leukemias, especially for young patients and for patients with higher risks, this is the only chance of a cure. That is the most curative and only curative attempt for many leukemia attempts.
Katherine Banwell:
Where do clinical trials fit into the treatment plan?
Dr. Eisfeld:
That is the absolute backbone. We always have to think about that.
Everything – all the treatment options that I mentioned – have been clinical trials, just very, very short time – very few years ago. So, every patient that comes to a leukemia or a cancer center, clinical trials will be discussed if they’re available. Because they will provide a special opportunity to have even more fine-tuned treatments – either newer agents. And I think what is very important to mention is that all clinical trials that are available would give the option of the best standard of care. And then the hope that a patient wouldn’t be getting any of the best standard of care options that are approved. The hope is that the new agent or added agent in many cases would even do better.
It’s also important that there’s a lot of additional monitoring during the trial. I think it can be seen in two ways as two parts of a coin. In one way, it may be additional visits to the hospital or additional blood draws that are necessary to be sure that the medications are safe, and that researchers and conditions can learn about it. But on the other hand, it also gives you this extra bit of being looked after and really getting checked in and out, making sure that all organs are functioning that everything is just going fine. And many patients appreciate this a lot. And they have this pair of extra eyes on them all the time.
Katherine Banwell:
Dr. Eisfeld, what therapies are available for AML patients who relapse or don’t respond to initial therapy? And is this treatment approach different from those who are newly diagnosed?
Dr. Eisfeld:
Most of the time, the treatments available at relapse are the same available at the first diagnosis. Just because we know now that, for example, if you have a molecular marker that, for example, is available, it would act with also relatively high chance of relapse upset. However, at relapse, the most important thing I personally would do is consider a clinical trial even stronger than in the first mindset.
Because it means that the leukemia outsmarted current treatments very often. So, usually what we would be doing is see if there is a targeted inhibitor or a cell mutation FLT3 or IDH, which I would personally always prefer to go in MLL rearrangement now for the new menin inhibitors where one would go with the same option as if it would have been their diagnosis. But if not to really consider clinical trials is a strong urge.
Katherine Banwell:
Should patients or should relapse patients undergo genetic testing again? Is it necessary?
Dr. Eisfeld:
Yes. At any time. Yes. Because we know that the leukemia changes. And you just can think about it in the way is that the cells that are surviving treatment, they’ve become smart. There was so much poison. There was so much treatment put on them.
And the ones that survive might have a quiet additional chromosome change as additional gene changes. And even if a genetic change has not been present at time of diagnosis, the reason the cell has survived might have been that it has now one of these changes that came up on a later time during treatment or while the cell is hiding somewhere to come back.
Katherine Banwell:
Are there therapies in development that are showing promise for patients with AML?
Dr. Eisfeld:
There are so many of those. It’s hard to count. And this makes me very happy. There are exciting and again, targeted drugs.
Once drug class is called menin inhibitors, which we – which were just published that show high promise.
And again, very difficult to treat several groups of patients who harbor chromosome changes in MLL genes in here. So, that is a very exciting option.
And there’s very exciting treatments with respect to what you call antibodies – monoclonal antibodies that protects the surface proteins that are being checked regularly. And one of those, for example, is called magrolimab. And that has even promise in these high-risk leukemias or adverse risk leukemias.
And then we are not there yet, but I’m sure we will be in the not too near future. There are also multiple trials that are looking at what we call CAR-T cells. But patients might have heard about for lymphomas or acute lymphoblastic leukemias. AML is a little more tricky with respect to those.
But we’ve seen pre-clinical studies that look really exciting. And I think it’s just going to be just a little more fine-tuning to make those easier, available, and more targeted for AML patients. And I’m very much looking forward to seeing those come more onto the market.
Katherine Banwell:
You mentioned the new menin inhibitors. Who are they right for?
Dr. Eisfeld:
We try to find out more, but definitely for patients that have been shown to be beneficial for patients who have chromosomal and rearrangements of the MLL gene or KMT2A gene. And there’s also good data on patients who have NPM1 mutations.
Even though we know – and these are mutations who harbor this kind of genetic change – have now a plethora, which is a great, of treatment options.
Because we know even conventional chemotherapy has been working decently well in them. We know that venetoclax also is supposed to work very well in them. But again, the data on the menin inhibitor with respect to NPM1 mutations is very exciting.
Katherine Banwell:
So, Dr. Eisfeld, we’ve covered a lot of information related to AML care. As a researcher, what other topics are currently top of mind for you in the field of AML? What are you passionate about?
Dr. Eisfeld:
Again, so many parts. I think there are probably three main things that I’d like to name. And I think about it as a little bit outside the box. Most of what we know about AML, we have become so much better. It’s because we have been studying patients who were treated over the past decades on clinical trials and very often here in the U.S. or in Europe.
But all clinical trials have a bias in that most of them have been done A) on patients who are younger than the age of 60. And B) fewer patients of other races and ethnicities included. And had patients not included that have AML, for example, not only in the bone marrow but on extramedullary sites – how we call it – up to 10 percent of their patients. And also, very often have not been done on very old patients where the AML is very common. So, all the patients – patients from other race, ethnicities, or underrepresented minorities, and patients who present with extramedullary disease are currently in my – underserved.
And these are exciting areas and opportunities of research and of active clinical practice. Because those are the patients we need to include if it’s possible now to include them in clinical trials.
If there are no trials available, then make sure any other additional molecular testing it done to understand them better and to advance our disease knowledge that we make sure that we can give the best possible care.
Katherine Banwell:
I think that the most important part is to get the molecular testing, and to enroll into clinical trials, and then to very often biobanking.
Why am I saying that is because our knowledge AML comes from patients who donated some tissue so that we could learn – researchers decades ago could learn about the genes. We know that leukemias differ so much in between patients.
So, I am worried that we are yet missing out on potentially important genes that need to be discovered and where we could develop docs for. This will only be possible with these additional testing.
The second part is to really consider going to larger treatment and larger treatment cancer center. And there are support systems in case that can help in here.
And the third part is to get involved even as early as possible even if you’re not personally affected, with Be The Match – with bone marrow transplant because there’s a paucity of donors, of people of color that makes it harder for these patients to get a potentially curative treatment in here.
We have other options now in bone marrow transplant where one can use only half-matching donors and or other availabilities. But again, that doesn’t outweigh that the bone marrow and donor registry that we need to get better at.
And I can – there are just so many factors – such a high degree of structural racism that affects people from every corner. And I think we as physicians, as society, and everybody need to acknowledge that. And we have to make sure that we get better to, again, give every patient the best care and keep the patient in mind and see what’s right for them at the right moment.
Katherine Banwell:
Where can patients or people who are interested find out about being a donor?
Dr. Eisfeld:
There is the website called “Be the Match” that one can put in. This is probably the best way to get first information.
And usually, at all the cancer sites. And sometimes, there is information at lab donation places, universities, either or the American Red Cross.
Usually those places have information laid out there as well.
Katherine Banwell:
Dr. Eisfeld, before we close, I’d like to get your thoughts on where we stand with progress in the field of AML. What would you like to leave the audience with? Are you hopeful?
Dr. Eisfeld:
I am incredibly hopeful. I hope – when I started working in hematology, as I said at that time, it was just about when imatinib (Gleevec) came out. Which is this CML pill that really revolutionized care. And so, at that time, I would be – all patients on that bone marrow transplant service had chronic myeloid leukemia. And because they all had to undergo bone marrow transplant. Then Gleevec came, and today, there are no such patients who are see or very rarely that require such intensive care.
So, I am very hopeful that in my practice time, which hopefully –and even earlier on – that there will be a time where we find targeted therapies for almost all patients.
Katherine Banwell:
Dr. Eisfeld, thank you so much for joining us today.
Dr. Eisfeld:
It’s an absolute pleasure. And if there are ever any questions, please feel free to reach out. For patients who reach out, we are there to talk to all of you and give advice as good as we can or put you in contact with the right people.
Katherine Banwell:
Thank you. And thank you to all of our collaborators. To learn more about AML and to access tools to help you become a proactive patient, visit powerful patients.org. I’m Katherine Banwell. Thanks for joining us today.
START HERE Myeloma Patient Resource Guide en español
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What Is the Purpose of AML Genetic Testing?
/in Acute Myeloid Leukemia, AML Insist, AML Insist Testing, AML Newly Diagnosed, AML Programs, AML Testing, AML Treatments and Clinical Trials, AML Video ND, AML Video T, AML Video TC /by Kara RayburnWhat Is the Purpose of AML Genetic Testing? from Patient Empowerment Network on Vimeo.
How is genetic testing for AML administered, and what is the purpose? Dr. Sanam Loghavi explains the methods of genetic testing and the function of each method.
Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.
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Transcript:
Katherine Banwell:
Dr. Loghavi, let’s start by defining molecular or genetic testing for AML. How is the test administered, and what is the purpose?
Dr. Sanam Loghavi:
Sure. So, genetic testing at diagnosis of acute myeloid leukemia is now considered standard of care, and it must be performed for every patient with acute myeloid leukemia.
We have different methodologies of doing genetic testing, and we can use – so the best sample to perform genetic testing on is really bone marrow. But if there are circulating leukemic cells, then we can also use peripheral blood instead of bone marrow.
And the genetic tests really three main methodologies are used. One is called routine karyotyping, where we look at and characterize the chromosomes of the cancer cells for the leukemic cells. The other one is fluorescence in situ hybridization, which is another method for visualization of chromosomes, and we can look for deletions, addition of chromosomal material or certain translocations or rearrangements.
And then next-generation sequencing allows us to look for smaller changes at the DNA level. So, these are single nucleotide variations at the DNA level or smaller insertions or deletions of genetic material.
The Importance of Molecular Testing Following an AML Relapse
/in Acute Myeloid Leukemia, AML Insist, AML Insist Testing, AML Newly Diagnosed, AML Programs, AML Testing, AML Treatments and Clinical Trials, AML Video ND, AML Video T, AML Video TC /by Kara RayburnThe Importance of Molecular Testing Following an AML Relapse from Patient Empowerment Network on Vimeo.
Why do you need molecular testing following an AML relapse? Dr. Sanam Loghavi emphasizes the importance of this essential testing and why it’s necessary following relapse.
Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.
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Transcript:
Katherine Banwell:
Unfortunately, relapse can happen following a course of treatment for AML. Should patients undergo molecular testing again before choosing another round of therapy?
Dr. Sanam Loghavi:
100 percent yes, that is always a yes. So, like I said, at baseline there are certain recommendations and the standard of care is to perform genetic testing.
But I cannot emphasize this enough, that AML or any cancer, for that matter, cancers tend to be smart, so they bypass the mechanisms that we try to eliminate by our targeted therapies.
So, oftentimes the genetic landscape of disease will actually change upon relapse or what we refer to as clonal evolution, and you may hear this terminology in the literature. So, it’s very important to molecularly or genetically characterize the disease at relapse before you decide how you are going to alter the course of treatment at that point.
Katherine Banwell:
Dr. Loghavi, what are you excited about in your research right now?
Dr. Sanam Loghavi:
Sure. So, I’m a pathologist, so I do a lot of molecular testing, and I also do a lot of measurable residual disease testing, and measurable residual disease tends to be one of the most informative factors in the care of patients with acute myeloid leukemia. So, these are the things that we’re very excited about, again, identifying better molecular targets of therapy, being able to measure residual disease at a more sensitive level that allows us to make better informed decisions for the care of our patients. And also, again, identifying the mechanisms of how AML develops in order to be able to eliminate the disease.
Emerging AML Treatments: What Is Menin Inhibitor Therapy?
/in Acute Myeloid Leukemia, AML Insist, AML Insist Treatment, AML Newly Diagnosed, AML Programs, AML Testing, AML Treatments and Clinical Trials, AML Video ND, AML Video T, AML Video TC /by Kara RayburnEmerging AML Treatments: What Is Menin Inhibitor Therapy? from Patient Empowerment Network on Vimeo.
How does menin inhibitor therapy work to treat acute myeloid leukemia (AML)? Dr. Sanam Loghavi discusses how this novel targeted therapy in clinical trials is showing promise for patients with the NPM1 mutation or the KMT2A mutation.
Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.
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Transcript:
Katherine Banwell:
Let’s talk about this new groundbreaking menin inhibitor therapy. Can you go into more detail about what the therapy is and who it might be right for?
Dr. Sanam Loghavi:
Sure. So, right now, the drug really has been tested in the setting of relapsed refractory disease, meaning for patients whose disease has already been treated but has relapsed. And there are certain genetic subtypes of acute myeloid leukemia that are eligible for this disease, or unamenable, sorry, to this targeted therapy. So, these include acute myeloid leukemias with NPM1 mutation or acute myeloid leukemias with KMT2A, or formerly known as the MLL gene-rearrangement.
And the reason for this that these alterations, these genetic alterations lead to an apparent interaction of menin with KMT2A and the leukemia depends on this interaction. So, what the Menin inhibitor does, it eliminates this interaction and so it’s used for therapy in patients that have this genetic change.
Katherine Banwell:
Are there other menin inhibitors in development?
Dr. Sanam Loghavi:
There are.
Katherine Banwell:
And what are they?
Dr. Sanam Loghavi:
There are several specific ones that are being tested of different names. So, the one that MD Anderson just published on is revumenib, but there are several ones that are in development.
Katherine Banwell:
And what about these other inhibitors are showing promise?
Dr. Sanam Loghavi:
So, if you think about AML, in general, really the only curative therapy that we have, outside of the favorable risk disease, is hematopoietic stem cell transplant.
And hematopoietic stem cell transplant is not a trivial treatment, it has a lot of side effects in and of itself. So, the goal really is to be able to treat patients with less intensive therapies. And the goal of these targeted therapies is to provide patients with less intensive therapies even compared with chemotherapy, with conventional chemotherapy that tends to be toxic. So, the goal is really to be smart about it and try to figure out how the pathogenesis of disease is developed and to try and eliminate the pathways that that cancer is using to proliferate.
Katherine Banwell:
If patients are interested in this menin inhibitor therapy, where do they start? Are there trials outside of MD Anderson?
Dr. Sanam Loghavi:
Yes. These are multi-institutional trials, and I will tell you that the best resource to identify clinical trials is essentially clinicaltrials.gov, dot G-O-V. So, you can go there and look up the active clinical trials by disease type, by location. So, that is the best resource to identify clinical trials.
AML Targeted Therapy: How Molecular Test Results Impact Treatment Options
/in Acute Myeloid Leukemia, AML Insist, AML Insist Treatment, AML Newly Diagnosed, AML Programs, AML Testing, AML Treatments and Clinical Trials, AML Video ND, AML Video T, AML Video TC /by Kara RayburnAML Targeted Therapy: How Molecular Test Results Impact Treatment Options from Patient Empowerment Network on Vimeo.
How could the results of molecular testing affect your acute myeloid leukemia (AML) treatment choice? Dr. Sanam Loghavi explains how inhibitor therapy works to treat AML.
Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.
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Transcript:
Katherine Banwell:
Dr. Loghavi, how do molecular test results impact the care plan and treatment choices?
Dr. Sanam Loghavi:
Sure. So, again, associated with really two major factors in the care of the patient. One is the decision of how intensely to treat the patient and whether or not the patient is a candidate for a hematopoietic stem cell transplant. And then the other is the availability of targeted therapies to those patients.
So, there are now several molecular alterations that make the disease amenable to treatment with targeted therapies, including mutations in FLT3, which is a name of a gene, mutations in IDH1, IDH1 or IDH2. And again, depending on the change, the patients may receive targeted therapy.
Katherine Banwell:
Dr. Loghavi, you mentioned inhibitor therapy. What is this treatment, and how does it work?
Dr. Sanam Loghavi:
Sure. So, again, it depends on the medication and it depends on the molecular change.
But essentially what happens when you have a mutation in a gene the normal function of that gene is impaired and a lot of the times that’s why you develop leukemia is because of the impairment of that normal function. So, usually what targeted therapies do, if that mutation is causing an apparent activation of let’s say a signaling molecule, then those targeted therapies will block that signaling. Or if it’s a deregulation of an epigenetic – and epigenetic means beyond genetic, so epigenetic factor, then the goal of that targeted therapy is to maintain that normal function or restore that normal function.
Imerman Angels
/in PEN Partner /by Kara RayburnPatient Empowerment Network (PEN) is enthused to partner with Imerman Angels to empower the cancer community through peer-to-peer support. Imerman Angels’ mission is to provide support to cancer fighters, survivors, previvors, and caregivers through one-on-one cancer support. Through a unique matching process, they connect Support Seekers with a custom-selected Mentor Angel whose life experience and cancer story is much the same as theirs. Their mission pairs well with PEN’s mission to provide cancer patients and their care partners with education to boost their confidence and validate emotional feelings around their experiences.
Imerman Angels’ offerings are complimentary to PEN’s Empowerment Lead program where highly passionate empowerment ambassadors represent the eyes and ears around their specific network and develop specific messages, seek out resources, and contribute to amplifying the needs of specific health communities via guidance of an established editorial calendar. Together, with the support of Imerman Angels and education of PEN, our organizations will work together to effectively empower individuals impacted by cancer.
Tumor Genetics vs. Family Genetics in Lung Cancer: What Is the Difference
/in LC Activated, LC Activated Expert, LC Newly Diagnosed, LC Programs, LC Resources ND, LC Testing, LC Videos TC, Lung Cancer, NSCLC Access and Affordability, NSCLC Testing /by Kara RayburnTumor Genetics vs. Family Genetics in Lung Cancer: What is the Difference? from Patient Empowerment Network on Vimeo.
What do lung cancer patients need to know about genetic testing? Dr. Lecia Sequist explains the two types of genetic testing and how the test results are used to create optimal treatment plans for personalized care.
Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.
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Transcript:
Lisa Hatfield:
Dr. Sequist, can you please explain what genetic testing is for cancer patients?
Dr. Lecia Sequist:
Yeah. This can be a really complicated area, so I’m so glad you asked me this question. I think genetic testing basically is looking at the genes. So inside each cell in our body, there are…there’s DNA, which is the genes, and the DNA is kind of like an instruction manual for your cells, and like any instruction manual it has different pages, it has different chapters and individual words. And when they’re doing genetic testing, they’re looking to see if any of those chapters or pages or words have a typo or maybe were deleted, sometimes a whole page or a whole chapter is deleted, or sometimes a chapter is picked out of where it’s supposed to go and shoved in another part of the book. And looking for these different kinds of mistakes or edits in the genes is what genetic testing does. But we can do genetic testing on different parts. When you’re talking about a patient who has cancer, there’s basically two different areas that can be tested genetically. One is the patient’s healthy body, the genes they were born with, that they inherited from their parents, that they’ve had their whole life or they could pass on to their children if they have children. And so that type of genetics is called the germline genetics, but it basically is the type of genes you can get from your parents or pass on to your children.
If you have been diagnosed with cancer, there’s a separate set of DNA, set of genetic testing, which is done on the cancer cells. And a lot of times those genes have not been with you your whole life, they just came up at the time that the first cancer cell appeared in your body. And they may be different than the germline genes you inherited from your parents. And so depends on the type of cancer that you have, there are some types of cancer where it is very common to look at the germline cancer gene…sorry, the germline genes to see if you have a predisposition for cancer. This is done a lot of times in breast and ovarian cancer and sometimes with colon cancer, where we know there are genes that can run in families that can predispose people to getting cancer. And the reason that’s done, if you’re diagnosed with cancer and they wanna check your familial genes, it’s because they wanna know if other people in your family might be at risk for the same type of cancer. Does this have implications for how your sister should be treated medically or your child?
Separately for lung cancer, for example, which I treat, we’re usually doing genetic testing on the cancer, and we’re looking at what’s making that cancer cell tick. Are there treatments, are there different drugs or therapies that we can give that will kill the cancer based on the genes that are in the cancer? And so that tumor cancer genetic testing is often called genotyping or it’s testing the somatic, which just means the cancer cells, the somatic genetic testing. But it’s complicated, and I think people, rightfully so, get confused about all these different types of genetic testing. I guess my activation tip for this question would be, if you’ve been diagnosed with cancer, you should talk to your doctor about whether you should get genetic testing, either of your cancer cells or of your familial genetic background. And sometimes the answer will be yes to both those. But know that there are two different types of genetic testing.
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Expert Advice for Lung Cancer Patients Considering a Clinical Trial
/in LC Activated, LC Activated Expert, LC Newly Diagnosed, LC Programs, LC Resources ND, LC Treatments and Clinical Trials, LC Videos TC, Lung Cancer, NSCLC Treatment and Clinical Trials /by Kara RayburnExpert Advice for Lung Cancer Patients Considering a Clinical Trial from Patient Empowerment Network on Vimeo.
What do lung cancer patients need to know about clinical trials? Dr. Lecia Sequist shares her perspective about the benefits of clinical trials, common misconceptions about trials, and advice to patients considering clinical trials.
Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.
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Transcript:
Lisa Hatfield:
Dr. Sequist, why is clinical trial participation so important in lung cancer, and what advice do you have for patients who are considering a clinical trial, and especially as they’re thinking about access to that clinical trial, how can they access those trials?
Dr. Lecia Sequist:
Clinical trials can come in all flavors, in different shapes and sizes. And so it is…I think clinical trials are very important for the field of cancer, they’re how we move the field forward. When scientists invent a new treatment, it can’t come to your door step unless there are clinical trials that are done to show that it works in cancer, that it’s safe, that it’s better than the older treatments. And so clinical trials are critical to cancer treatment and the progress of cancer treatment. I think a lot of people understand that, but they also think, Well, they’re really important, but someone else can do them. I don’t want to participate in a clinical trial, I don’t want to be experimented on, I don’t want to be a lab rat. And I can definitely understand that fear. But clinical trials, again, like I said, they come in all shapes and sizes, some of them are more experimental where maybe you’re getting a drug that hasn’t been tried in that many people before, some of them are less experimental where maybe there’s a drug that’s approved and works really, really well in breast cancer. It hasn’t come to lung cancer yet because it needs a clinical trial. And you can access that treatment before everyone else if you participate in the clinical trial.
Clinical trials are not for everyone, but I think that in my opinion, most patients who are diagnosed with cancer should hear about clinical trials, should learn a little bit more about what they really mean, and then they can decide for themselves if it is something that they would like to take part in. Clinical trials aren’t available at every hospital or every clinic, that’s the other thing, is that they may not offer clinical trials where you’re being treated, but you can…
I think my activation tips around clinical trials are, one, to learn more about it because most of us don’t know that much about clinical trials. And you can start by asking your doctor, but it’s possible your doctor doesn’t know that much about clinical trials either if clinical trials aren’t done or offered at your hospital or your clinic. And so you can ask your doctor if you should go to another center, maybe in a bigger town or city, to ask about clinical trials there? And that’s a great reason to have a second opinion. Sometimes the latest, most active treatments are only available on a clinical trial. So I think another misconception people have is that, well, that’s for when everything else has been tried, it’s like the last-ditch effort. That’s definitely not true. Sometimes the best treatments that we would love to give a patient first when they’re first diagnosed, because we think it has the highest chance of working, but it’s only available on a clinical trial. So it’s not something to think about only after you’ve tried five or six other things. Clinical trials should be considered, I think for every cancer patient from day one. They may not be a good fit for every patient, but they should at least be talked about and thought about, so we can really find the best plan for you.
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How Should Newly Diagnosed Lung Cancer Patients Deal With Disease Stigma?
/in LC Activated, LC Activated Expert, LC Newly Diagnosed, LC Programs, LC Resources ND, Lung Cancer /by Kara RayburnHow Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma? from Patient Empowerment Network on Vimeo.
How can lung cancer patients and advocates fight lung cancer stigma? Dr. Lecia Sequist shares her perspective about why a stigma has developed her advice for all people to start turning the tide against lung cancer stigma.
Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.
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Transcript:
Lisa Hatfield:
Dr. Sequist, how should a newly diagnosed patient facing lung cancer respond in situations where they encounter lung cancer stigma? There’s a stigma that surrounds lung cancer sometimes. How would you recommend that they deal with that?
Dr. Lecia Sequist:
There’s this…in my opinion, there’s a stigma that surrounds lung cancer all the time, and it’s unfair. And I think if we look back, there were a lot of public awareness campaigns on TV and in magazines in the 1980s about quitting smoking, and you probably remember these ads, it showed people breaking cigarettes in half. And I think the intention of those was good, that they were trying to explain to the public that smoking could be harmful for your health, but it was just much too simplistic, because quitting smoking is really hard. It’s an addictive substance.
Nicotine is addictive, and it’s very…the way to treat addiction is usually not to just say, “Don’t do that, don’t do that.” There’s medically more sophisticated ways to treat addiction. But I think the flip side of that awareness campaign that smoking can be harmful for your health is it really ingrained in our culture this very deep-seated thought that if you choose to smoke, you’ve made a bad choice. And that’s just…it’s so problematic because most people didn’t choose to smoke, it was basically provided to them in these very complex and high-level targeted campaigns from the tobacco companies. And most people would like to choose to quit smoking if they are smokers, and they can’t because it’s an addiction, and it’s very challenging to quit. So basically, I think this is all to say the stigma around lung cancer comes from this misguided, false impression that a lot of Americans hold that lung cancer is because people made a bad choice to smoke or to not quit smoking.
And so it all comes together to make people think that those who get diagnosed with lung cancer did something wrong to deserve it, and that’s just not true. Nobody deserves to get cancer of any type. And lung cancer patients do suffer this unique blame that is not necessarily placed on other patients with other types of cancer, it’s really very unique to lung cancer. And it can be harmful for patients in many ways, it can be harmful in interpersonal interactions, but it also leads to policies and the whole way that our care system is set up that disadvantage lung cancer patients compared to other types of cancer patients. So there are a lot of people working hard on this problem, but something that you can do…
I guess my activation tip for this question would be to just spread the word about lung cancer. Whether or not you have lung cancer, maybe someone you know has lung cancer, but just tell people, lung cancer can happen to everyone, anyone. Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer. And we have to take the stigma away from this disease. Nobody deserves to have lung cancer. It’s not something that people cause to happen to themselves, and they certainly shouldn’t be blamed if they are finding themselves in a position where they have lung cancer. So just spreading the word, lung cancer can happen to anyone, anyone with lungs can get lung cancer, I think can help start to change the perceptions.
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What Steps Can BIPOC Lung Cancer Patients Take to Guard Against Care Disparities?
/in LC Access and Affordability, LC Activated, LC Activated Expert, LC Newly Diagnosed, LC Programs, LC Resources ND, LC Videos AA, Lung Cancer, NSCLC Access and Affordability /by Kara RayburnWhat Steps Can BIPOC Lung Cancer Patients Take to Guard Against Care Disparities? from Patient Empowerment Network on Vimeo.
How can BIPOC lung cancer patients or other underrepresented patients help guard against care disparities? Expert Dr. Lecia Sequist shares advice for non-small cell lung cancer (NSCLC) patients to help ensure they receive optimal treatment with the most advanced treatments available.
Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.
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Transcript:
Lisa Hatfield:
So, Dr. Sequist, we know that there are significant disparities in the treatment and the outcomes of minority patients who have non-small cell lung cancer. How can patients avoid these discrepancies in the timeliness of their diagnosis, because that can be an important factor in their outcome?
Dr. Lecia Sequist:
Yeah. I think lung cancer has changed a lot, but in the last 10 years, and there are better treatments than there used to be, and there’s a lot more treatments than there used to be, but not all doctors are aware of these new developments. And I think some doctors still have a kind of an old-fashioned nihilistic view about lung cancer, which can be very negative, which is that lung cancer can’t be treated effectively and patients are just going to do very poorly. That’s not true anymore. It may have been true 20, 30 years ago, unfortunately. But with treatments today, lung cancer patients can live longer, be cured more often and have better quality of life than with some of the older treatments.
And I think in the ideal world, the responsibility really should be on the physicians to make sure that they’re offering those treatments to patients, but in the real world, that doesn’t always happen. And so I think something that patients can do to empower themselves is also to ask their physicians if there’s anything else that can be done or if they should see a second opinion. If you’re feeling like your doctor is not offering you really many options or is being kind of nihilistic, having a very negative picture of what might happen to you with your cancer, then I would just get a second opinion. You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone. But until that day comes, I think patients also need to feel empowered to ask for other treatments and other opinions.
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