Fact or Fiction? AML Research and Internet Claims

Fact or Fiction? AML Research and Internet Claims from Patient Empowerment Network on Vimeo.

How do you decipher what’s fact and what’s fiction when it comes to Acute Myeloid Leukemia (AML) research and “miracle cures” you may encounter online? Attend this webinar, as Dr. Sangmin Lee shares updates in research and debunks common rumors that are passed around related to treating and “curing” AML.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

See More From The Fact or Fiction? AML Series


Related Resources

Assessing Credible AML Resources and Identifying Research Scams

Fact or Fiction? AML Treatment & Side Effects

Why Should You Be Educated About Your AML?


Transcript:

Patricia:                      

Welcome to “Fact or Fiction: AML Research and Bogus Online Cures.” Today, we’re talking about acute myeloid leukemia. We’ll debunk common misconceptions about AML, research, and focus online information.

I’m Patricia Murphy, your host for today. Joining us is Dr. Sangmin Lee.  Dr. Lee, take a moment. Introduce yourself.

Dr. Lee:   

So, my name is Sangmin Lee. I’m at Weill Cornell Medicine in New York City, and New York Presbyterian Hospital. And I’m an attending in the leukemia program here, so I focus on leukemia treatment and clinical trials with leukemia.

Patricia:

Great. Thanks so much for joining us. Before we get started, just a reminder, this program is not a substitute for medical advice. So, please, consult your care team when you have questions.

Dr. Lee, thanks so much for joining us, again. Can you please give us an overview of the field of AML research?

Dr. Lee:

So, AML research is evolving very rapidly, and there’s a lot of promising new drugs that have come out in AML. As with any other cancers, we’re getting more sophisticated in characterizing AML in terms of molecular mutations, and characterizing AML stem cells, so –

The field is moving very rapidly in that regard. There have been a number of promising and effective drugs that have been approved in the last few years, as well. For example, Venetoclax has been a game changer in treatment of AML, especially in the elderly population. And there are several targeted agents that have been FDA approved in the recent years, as well. So, definitely since about three to five years ago, there have been new drugs that have come out for AML that is very exciting for treatment of AML.

Patricia:

Let’s talk a little bit about genetic testing. How is that changing the landscape for AML patients?

Dr. Lee:

So, genetic testing has become standard in AML patients, in terms of – at their diagnosis and relapse. And part of that is, we can use that information to guide prognosis, how well or not well a patient is expected to do.

But more importantly, there are actually drugs that can target specific mutations. For example, there are new drugs that target a mutation called IDH1 and 2 that have been approved recently for patients with AML, as well as new drugs that target mutation called FLT-3, or FLT3 mutation, as well. So, genetic testing has become standard, not only to tell you prognostic information, but also used in therapy for AML patients.

Patricia:

You mentioned a few treatments that were advancing. What other therapies are showing promise for AML?

Dr. Lee:

So, there are a number of treatments that are ongoing. Venetoclax has been game-changing, and now, although Venetoclax has improved outlook, in terms of AML treatment, compared to conventional therapy, there’s still resistance to Venetoclax and the response is not durable.

So, there is research looking at resistance mechanisms to Venetoclax, for example. The other exciting field is, there are some advances in chemotherapy, with clinical trials underway. Like in other malignancies, there are clinical trials involving CAR T-cell, or other ways of engaging your own T cell immune system to approach and attack the AML.

Patricia:

Great segue to clinical trials. What is the process for getting medicine to patients during clinical trials?

Dr. Lee:

So, clinical trials are basically what’s needed to prove that drugs work. So, a lot of times, we test drugs in a test tube in AML cell lines, and they show great promise. But just because a drug works in a test tube setting, doesn’t actually mean that it will work in humans, because human bodies are much more complicated. So, we need to test promising drugs in humans to make sure they are safe and effective.

And that’s what the purpose of clinical trials are. Once they demonstrate safety and efficacy, then a drug then gets to be approved, and is available commercially. So, that’s the purpose of clinical trials.

To be involved in clinical trials, what it involves is, basically, you have to meet a sort of criteria, called eligibility, because different clinical trials have different criteria for selection. So, we have to look into that. And then, once you fit an eligibility or selection criteria, then you typically undergo certain diagnostic tests to enroll on a clinical study. And then, you get whatever drug or intervention that is going to test in that setting.

So, there are numerous steps to actually enroll in a clinical study.

Patricia:

And like you mentioned, there’s a long way between rat studies and human trials. What are the phases of clinical trials?

Dr. Lee:

So, there are three phases for clinical trials, commonly. There’s phase one, and phase two, and phase three. Phase one is the earliest part of the clinical trial process. So, goal of a phase one study is to make sure a drug is safe in a human. So, phase one studies are usually the first time that you are testing the drug in humans, and the main purpose is to demonstrate that it’s safe. So, typically, in a phase one study, typically, you test a drug at a lower dose or dose levels to demonstrate safety. What it means is that you’re enrolling a few patients at a time.

Once a drug is proven to be safe, then you will want to phase two, which is basically testing the drug in more patients. And the purpose of phase two is to get a preliminary assessment of how effective a treatment would be.

So, typically, a phase two study involves many more patients in that setting. And then, if a phase two study shows that a drug is very promising, then the drug may move on to phase three, where, basically, in phrase three, you are comparing one intervention or a drug compared to the standard of care. And, typically, in a phase three setting, a computer decides randomly which intervention you get, whether it’s an intervention or new drug versus standard of care. And standard of care may include either placebo or chemotherapy intervention, that is standard of care. So, it’s not always placebo in phase three.

Patricia:

Sure, sure. Okay, we’ll play a little game, now. I’ll tell you a few things that we’ve heard from AML patients, and you tell me if this is fact or fiction. Okay, Dr. Lee?

Dr. Lee:

Yeah.

Patricia:

Clinical trials are the last resort treatment option.

Dr. Lee:

That’s actually not true in a lot of cases, because, yes, there are a lot of clinical trials after you have tried all of the standard therapy. But then, standard therapy in AML, like any other condition, are not perfect. So, there are many clinical trials where, even if you’re diagnosed with new AML, because standard care is not perfect, there are trials to try to improve upon the standard of care.

So, there may be clinical trials when you’re first diagnosed with AML, as well.

Patricia:

Yeah. How about this one: I feel like a guinea pig.

Dr. Lee:

Well, the clinical trial is to test drugs in humans. So, in a way, you are a test subject. But then, you have to remember that all of the drugs that we are testing have a rationale.

They all show promise, in terms of laboratory testing to kill leukemia cells in the test tube. And the problem is that, just because they are killed leukemia cells in the test tube, or in an animal model, doesn’t actually mean that it works in humans, or we know the safety profile. So, we need to do these testings to demonstrate that these drugs, which seem promising, actually work in humans.

Patricia:

Right. Well, then, that’s a good segue to this thing we’ve heard: Treatments being studied today may be the future standard of care.

Dr. Lee:

That is absolutely true, because all of the new developments that have come out, including Venetoclax, or IDH inhibitors, or other inhibitors, that are approved today, came through the clinical trial process. One example I like to include is a patient of mine, who, five years ago, had very, very aggressive leukemia, and she happened to have an IDH2 mutation.

It was four or five years ago. And she has a very refractory, aggressive leukemia, and it was life-threatening. And she had an IDH2 mutation. And we enrolled her in a clinical trial involving ivosidenib, which was in clinical trial at the time.

Ever since then, she became – she went into remission, and she has a normal blood count. And, to this day, she’s on this medicine, which is now approved, and she remains healthy with a normal blood count, in remission. So, yes. Clinical trials do include promising drugs, and if they show really good efficacy and promise, they will become standard of care down the road.

The advantage of clinical trial is that you may get early access to drugs that may become standard care down the road. So, it’s a way to get early access to potentially promising drugs.

Patricia:

How do you counsel your patients about joining clinical trials? What are you thinking about when you’re talking with them?

Dr. Lee:

So, in terms of clinical trials, we all look at clinical trials, and they exist for a reason, because we think that an intervention or drug can do better than standard of care. So, how I approach it is that, depending on the situation, if we can improve upon what is available, or if there are no other options, then it definitely is a great option to improve upon what would otherwise be standard.

Patricia:

Sure. All right, how about this one: I may have unexpected costs if I join a clinical trial.

Dr. Lee:

So, typically, that’s actually, usually not true, because how it works is that the clinical trial drugs, and that there may be extra procedures or visits associated with clinical trials.

And what usually happens is that the sponsor of the clinical trial provides the cost of the drug, intervention, and anything extra that are required for the clinical trial. So, in the end, the cost of participating in a clinical trial should not be any more than receiving standard care treatment.

In some rare cases, there may be stipends associated with the clinical trial, especially with travel. So, if you participate in a clinical trial, and you live far away, then you should ask to see if there is any stipends available, especially for travel.

Patricia:

Okay. How about this next one? I am monitored more closely in a clinical trial.

Dr. Lee:

In some cases, it’s true. Clinical trials do have certain monitoring visits, in terms of doctor’s visits, laboratory tests, and physical exams.

The purpose of that is to make sure that it is safe. So, the purpose of monitoring closely, in a lot of cases, is for the patient’s safety. We are testing drugs in a lot of clinical trials, for which the complete safety profile, as well as efficacy profile, is not known. So, the purpose of closer monitoring is to make sure whatever we’re doing is safe, and if there are any unexpected side effects, then it allows us to address the side effects, as well. So, it’s mainly for patients’ safety.

Patricia:

Okay, one more. I’ve got one more. Once I enroll, I am locked into the trial, and I can’t change course.

Dr. Lee:

Absolutely not true. So, clinical trial participation is always voluntary. So, if you sign a clinical – So, what happens is you typically sign a consent to participate in a clinical trial.

And if you change your mind at any time, you can decide not to participate in a clinical trial. It’s not a binding agreement, so you can decide not to participate at any time.

Patricia:

Great. And that’s obviously a decision you should make with your healthcare provider before withdrawing.

Dr. Lee:

Oh, absolutely. Absolutely, absolutely. But you should always remember that just because you sign up for a clinical trial, it’s not a binding requirement to stay on it.

Patricia:

Okay, okay. And let’s talk for just one moment, if you have a second again, about why patients – why it’s important for patients to participate in clinical trials.

Dr. Lee:

Why it’s important? It’s because the drugs we test could become the standard care in a few years. And you might have early access to a promising drug that may change treatment of AML. One prime example is Venetoclax. Venetoclax, when it was in clinical trial, was very promising, but before we started treatment, we had no idea how well it was going to work.

So, the patients receiving Venetoclax obviously benefitted from it, and they had early access to a drug that would have become standard of care a few years down the road.

Patricia:

Okay, right. Okay, a little more fact or fiction, here. This is what we’ve heard from patients who have AML about cures, okay? Sugar feeds cancer, and severely restricting my diet will treat my AML.

Dr. Lee:

That’s not proven so far. There are some laboratory studies, especially with keto diets, showing some promise, maybe. But then it hasn’t been proven in humans, yet. The most important thing about AML treatment is actually nutrition. As patients go through AML treatment, it’s very important to stay healthy, and part of that is nutrition.

So, starvation, in general, is not recommended, because nutrition is so important, in terms of being able to undergo the treatment, as well as treatment visits, and everything. So, we recommend that nutrition is very important.

Patricia:

Okay, on that note, how about supplements? We’ve heard that supplements and herbs can treat cancer.

Dr. Lee:

So, supplements, while you’re in active treatment, you need to discuss all of the supplements you’re taking with your doctor or provider. The reasons for that is that certain supplements can interact with your medications. Like in any condition, supplements can interact with metabolism of drugs, including the leukemia treatment drugs, or any of the other drugs that you may be taking. So, you should always discuss starting or taking supplements prior to taking them, because of potential interactions.

Patricia:

The use of cannabis oil is becoming prevalent. Does this have a role in cancer care and treatment?

Dr. Lee:

Absolutely. So, we use it for a lot of side effect management. So, cannabis can be helpful, in terms of appetite and nausea, for example. So, we often use it in conjunction to manage some of the side effects that patients can have throughout their treatment.

You should consult with your medical team, and of course, I should say that laws differ state by state, so it doesn’t apply to every state. But when it’s available, it can be a valuable addition

Patricia:

Sure. Discuss that with your physician. How about this one? A positive attitude and mindfulness can improve treatment response.

Dr. Lee:

Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.

Patricia:

Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?

Dr. Lee:

So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.

Patricia:

Yeah. A couple more, here. There is no cure for cancer.

Dr. Lee:

In some cases, it’s true. In some cases, it’s not true. So, for example, a slightly different condition called chronic myeloid leukemia, patients do well taking drugs that target the Philadelphia chromosome. And the majority of patients are actually not cured, but they take a drug and leukemia is controlled for their lives. So, sometimes, the leukemia is controlled with an intervention. So, as long as it’s controlled, and you have normal blood counts, then it can become a chronic disease in a way.

In certain instances, especially in a younger patient, a curative approach for leukemia is possible. Especially if you’re diagnosed, and you undergo intensive chemotherapy, and if you’re in remission, then either chemotherapy or a stem cell transplant, can actually provide a chance for a cure. So, a cure is possible in leukemia patients, but in some instances, we may treat it sort of like a chronic condition, for which leukemia is controlled.

Patricia:

Okay. I think this last one applies to cancer across the board, and we’re getting real deep here. There is a cure for cancer, but it’s being withheld from the public.

Dr. Lee:

I wish that was the case! I really wish that was the case. The reason that it’s so difficult to cure cancer is that a lot of – The human body’s very complex. There’s a lot of moving parts, and even within the same cancer or leukemia, there can be many, many things that can go wrong. Even in AML, there are many, many different permutations and mutations, and things go on inside the cell that make it very complicated.

So, it’s very hard to find a universal cure, because our human bodies are complicated. If there was a cure, then, absolutely, we would definitely not withhold it from the public.

Patricia:

Now, Dr. Google is not an excellent place all the time, and I wonder if sometimes it may be dangerous. Are there bogus cures out there that patients can stumble into?

Dr. Lee:

There can be bogus cures, also. I mean, so, unfortunately, AML is not treatable with herbs or non-traditional therapy. So, I think that if you have an aggressive leukemia, then I would seek out your doctor or medical team about treatment, before reaching out and selecting alternative therapy. Because if you delay treatment for your leukemia, because you’re seeking alternative therapy, then the leukemia can evolve and become more difficult to treat.

Patricia:                      

Okay. Well, this is, again, a good segue, because we’ll talk a little bit now about online awareness, and health literacy.

The worldwide web is a vast place full of good information, bad information, misinformation, and disinformation. So, are there resources for understanding more about clinical trials that patients can rely on?

Dr. Lee:

So, there are several good resources. So, a key website that we use, and all clinical trials are required to be registered, is a website called clinicaltrials.gov. And all clinical trials are required to be registered there, so it’s a searchable website where you can search through all the clinical trials, and it may tell you information on the inclusion criteria, and where it may be accruing, or where the clinical trials may be available. So, that’s one important aspect.

The other aspect is actually the Leukemia and Lymphoma Society, where they actually have dedicated personnel who can guide them, in terms of clinical trials and what is available. So, that’s an important source.

I would have to say that Dr. Google is a little bit – difficult. Yeah. It should be used with caution, because – the reason is that AML and any other conditions differ from person to person. So, just because you read about one aspect, it may not apply to you, necessarily. So, Dr. Google should be used with caution.

Patricia:

It’s understandable, though, why patients would want to try to search out information online. It seems so readily available.

Dr. Lee:                       

It is absolutely true, but then AML, especially, is so diverse. So, one thing that you read about may not apply to you, even though you have AML. So, because the disease and where you are in the process can be different, the situation that people read about may not necessarily apply to a specific instance.

Patricia:                      

Do you have some advice for how patients can properly evaluate information they’re getting online, particularly related to social media and online support groups? Which can get pretty thick with information.

Dr. Lee:                       

I would write down and print out all the information they’re getting, and any questions, and discuss with your medical team.

Because social media can be a double-edged sword, because patients may post online if they’re having difficult times, but then you may not hear about the success stories as often. So, it may be self-selecting if you’re only hearing about how patients are having issues with their treatment, and how their disease is going. A lot of patients who are doing well may not be posting as much. So, I think you have to take it with a grain of salt, because there may be patients who are doing well, and carrying out their normal lives, who are not looking into online community groups. So, I think we should take that with a grain of salt.

Patricia:                      

That’s an excellent point, about who’s posting in those online forums often. And I love the idea of printing out anything you’re planning on doing, and bringing it into your healthcare team before starting.

Dr. Lee:                       

Absolutely. And if patients read about any experience online, I think that they should share it with their medical team, and absolutely address the concerns or anything they have with the medical team. Because, basically, we’re here to work with the patient as a team, and if you have any concerns, you should share it. And we can help address any concerns, or anything you read about.

Patricia:

Yeah. Perhaps, is there a way for patients, maybe when they’re visiting their doctors, to just make a list of questions that they may have, to actually talk to their healthcare team, rather than searching out on the internet?

Dr. Lee:

That’s an excellent idea. I think writing down every question you have is very important. Because a lot of times, you go to a visit, and if you don’t write down your questions, you often forget what you’re going to ask. So, writing down every question you have is absolutely important. And your team should address all of your questions, and I think it’s vital for the medical team to explain what is going on, the underlying diagnosis, as well as the treatment plan and potential side effects, and the rationale for selecting that particular treatment plan.

So, I think – I believe that a patient and the medical team needs to work as a team. And it’s absolutely important to educate on everything about their condition.

Patricia:                      

So, I think what I’m hearing you say is that patients should always consult with their healthcare team. The quality of life is very important. Nutrition is very important. How can patients talk to their doctors if they’re having trouble? Maybe depression is an issue. Maybe they’re struggling.

Dr. Lee:                       

Absolutely. I mean, the treatment team includes not only the doctors, but social workers, and psychiatrists, and other – It’s very interdisciplinary, and involves other members of the team that can help in different ways. Treatment for leukemia, especially, is very complex and difficult, because you not only have to worry about treating the disease, but you have to be mindful about the psychological impact, as well as how it impacts your life, how you may need a caregiver, home support –

So, it’s very complex. So, typically, treatment for leukemia involves, not only a leukemia physician, but also other people who are key players in the team, including the social worker, and psychiatrist, and nurses. And there are other resources available, so patients should always talk about the other aspects of the care with their team, because there are resources we can help and guide through this difficult process.

Patricia:                      

What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.

Dr. Lee:                       

Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.

And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.

Patricia:                      

And there’s tons of resources for meditation and yoga out there, that are reliable.

Dr. Lee:                       

Yes. Yeah.

Patricia:

Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?

Dr. Lee:

Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.

Patricia:

Yeah. Share with us any other advice you have for patients, at this point.

Dr. Lee:

I think that we talked about clinical trials. I think that one thing that you need to absolutely ask, when you’re diagnosed, especially with AML, is if there are any clinical trials that are available to participate in. It’s mainly because there are many new promising drugs that are coming out for AML.

And one day, a drug that is in clinical trial may become standard care. So, we’re always trying to do better than what is available as a standard, and you should inquire if there is any clinical trials and can participate in.

Patricia:

You sound very hopeful about AML research.

Dr. Lee:

Absolutely, absolutely. I mean, I think the field of AML is moving very rapidly.  I think, with the technology, I think we are getting more understanding about the biology of AML. So, there are many drugs that are coming out in clinical trials, so I think that several new drugs have been approved. And I think the outlook seems very promising for AML.

Patricia:

Great. Dr. Lee, thank you so much for joining us.

Dr. Lee:

Okay. Thank you. It was a pleasure.

Patricia:

To learn more about AML, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m your host, Patricia Murphy. Thanks so much for joining us.

Understanding and Managing AML Treatment Side Effects

Understanding and Managing AML Treatment Side Effects from Patient Empowerment Network on Vimeo.

AML expert, Dr. Jessica Altman, discusses how AML affects the body, and the common side effects patients may experience during varying AML treatment phases.  

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

See More From The Fact or Fiction? AML Series


Related Resources

AML Genetic Testing Explained

What is Targeted AML Therapy?

AML Treatment and Side Effects Program Resource Guide


Transcript:

Patricia:            

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

Dr. Altman: 

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

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

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

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

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

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

Patricia:     

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

Dr. Altman:    

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

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

AML Treatment Side Effects: What’s Fact and What’s Fiction?

AML Treatment Side Effects: What’s Fact and What’s Fiction? from Patient Empowerment Network on Vimeo.

AML expert, Dr. Jessica Altman, addresses AML treatment side effects, such as nausea and changes in taste, in addition to discussing best practices for researching AML online.  

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

See More From The Fact or Fiction? AML Series


Related Resources

Can AML Be Cured?

Managing AML Symptoms

AML Treatment and Side Effects Program Resource Guide


Transcript:

Patricia:          

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

Dr. Altman:          

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

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

Patricia:          

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

Dr. Altman:         

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

Patricia: 

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

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

Dr. Altman:          

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

Patricia:          

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

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

Dr. Altman:

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

Patricia:          

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

Dr. Altman:       

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

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

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

Patricia:          

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

Dr. Altman:

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

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

What is Targeted AML Therapy?

What is Targeted AML Therapy? from Patient Empowerment Network on Vimeo.

 AML expert, Dr. Jessica Altman, defines targeted AML therapy and outlines available treatment options.  

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

See More From The Fact or Fiction? AML Series


Related Resources

Your Pro-Active AML Patient Toolkit

AML Genetic Testing Explained

What’s Next in AML Research?


Transcript:

Patricia:

Can you talk a little bit about targeted therapy?

Dr. Altman:

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

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

Patricia:

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

Dr. Altman:

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

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

Managing AML Symptoms

Managing AML Symptoms from Patient Empowerment Network on Vimeo.

Dr. Daniel Pollyea discusses  the management of acute myeloid leukemia (AML) symptoms, stressing the need for swift implementation of a treatment plan and providing advice on supplement use.

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

More Fact or Fiction?

Related Resources

Why Should You Become Educated about Your AML?  

Fact or Fiction? AML Resource Guide

Fact or Fiction? AML Treatment & Side Effects

 


Transcript:

Ross:

What are the best ways to manage those symptoms?

Dr. Pollyea:

Right. So, I mean, at presentation, all those symptoms, the best way to manage those are to start treatment as quickly as possible. So, impacting the underlying cause of this disease is the most important and critical factor to getting a person feeling better because all of these problems stem from the disease in the bone marrow, and so everything else that you do to sort of help a person’s symptoms are Band-Aids when you’re not talking about getting to the root cause.

So, that’s at presentation. Now once we start treatment, there are many potential side effects to any number of treatments. And it all is dependent on what treatment you’re getting and other things about you that will make this a significant problem in some cases. And in that setting, we do have ways that we can aggressively manage a person’s
side effects.

Ross:

Can you manage all of the symptoms? Or can people still be experiencing symptoms even after they’re in treatment?

Dr. Pollyea:

Absolutely. So, a person with this disease, depending on how long they’ve had it and some of the features, may not be feeling back to their baseline self for potentially weeks or months after treatment starts in the best-case scenario. So, that can be very frustrating, but a person needs to sort of be able to continue to have a good outlook and stay positive. Because we are able in many cases to make a big impact on this disease and return a person to their pre-disease quality of life.

Ross:

There are some patients who I understand think that supplements can deal with the symptoms of AML. Is that accurate?

Dr. Pollyea:

You know, I mean, I think the supplement question is always a challenge. A lot of these supplements, or most of these supplements have never been tested with the rigor of treatments that we’re accustomed to in the medical establishment. That being said, I won’t deny that some of the supplements can help patients based on what patients’ experiences are and what they tell me. I think what’s really important is just be very open and honest with your doctor about the supplements that you’re taking or want to take to ensure that there are no sort of unanticipated interactions with treatments.

Because I think most doctors are very open to having their patients care for themselves in the ways that they’ve become accustomed to, and they know their bodies very well, and we’re very open to that. But there are sometimes that a drug or a supplement might have a bad interaction with the treatment.

And so, a good example in my practice is antioxidants. So, there’s a lot of literature, a lot of interest in antioxidants as cancer-prevention treatment. And a lot of that is not well-established, but still I don’t see much harm. But when it comes time to treating a cancer, that’s a very different situation. When we give a patient treatment to try to kill the cancer cells, many times we’re trying to provoke oxidation. That’s part of how these drugs and these treatments work.

So, if you’re taking those treatments, but also at the same time taking antioxidants, there’s the potential you could sort of be cutting your therapy off at the knees, fighting it with one hand behind your back. So, for the period of time when my patients are getting an active treatment, I ask that they don’t take it antioxidant. And they can resume that in the future in the hopes of preventing another cancer. But the time to prevent with an antioxidant isn’t appropriate when you’re dealing with an active cancer. So, that’s just one example.

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Valerie share’s her story for AML Awareness Month

This video was originally published by CancerCare on June 17, 2016, here.

 

LLS Financial Assistance Programs

This resource was originally published on Leukemia and Lymphoma Society here.

 

Applying for health insurance or filing health insurance claims can be a full-time job and extremely overwhelming to patients, their caregivers and families. There are many excellent guides and tools available to help in working through these challenges and determining which resources are available to them. The Leukemia & Lymphoma Society (LLS) offers the following financial assistance programs to help individuals with blood cancer.

For a summary of all LLS Patient Financial Assistance Programs, click here.

Co-Pay Assistance Program

LLS’s Co-Pay Assistance Program offers financial support toward the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program. Access the Copayment Assistance Resource Guide for Blood Cancer Patients for additional co-pay assistance resources.

Patient Financial Assistance Programs

Patient Aid Program

The LLS Patient Aid Program provides financial assistance to blood cancer patients in active treatment. Eligible patients will receive a $100 stipend.

Susan Lang Pay-It-Forward Patient Travel Assistance Program
LLS’s Susan Lang Pay-It-Forward Patient Travel Assistance Program is available to blood cancer patients, with significant financial need, who may qualify to receive financial assistance for approved expenses which include: ground transportation, air travel, and lodging related expenses.

Urgent Need Program
LLS’s Urgent Need Program, established in partnership with Moppie’s Love, is available to help pediatric and young adult blood cancer patients, or adult blood cancer patients enrolled in clinical trials, who are in acute financial need. The program provides eligible patients with assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment.

Other Financial Aid
For information about other financial aid, click here.

What You Should Know About Acute Myeloid Leukemia (AML)

This podcast was originally published on City of Hope Radio by Guido Marcucci, MD, here.

 

Topic Info: Acute myeloid leukemia (AML) is characterized by rapidly-developing cancer in the myeloid line of blood cells, which is responsible for producing red blood cells, platelets and several types of white blood cells called granulocytes.

Because AML grows rapidly, it can quickly crowd out normal blood cells, leading to anemia, susceptibility to infections and uncontrolled bleeding.

Due to the aggressive nature of AML, this disease usually requires intensive treatment, which may include chemotherapy, radiation therapy, immunotherapy, and stem cell transplantation.

The following represent symptoms typical for AML:

  • Fever with or without an infection
  • Frequent bruising or bleeds that do not clot
  • Leukemia cutis (multiple lesions with a firm or rubbery consistency that may be pink, red, red-brown or blue-violet in color)
  • Night sweats
  • Pain in the bones or joints
  • Pain or feeling of fullness below the ribs
  • Petechiae (flat, pinpoint spots under the skin caused by bleeding)
  • Shortness of breath
  • Weakness or feeling tired

Listen in as Guido Marcucci, MD discusses AML, its symptoms, diagnoses, and treatments.

Acute Myeloid Leukemia: Diagnosis & Prognosis

This podcast was originally published on The Bloodline With LLS on April 22, 2019, here.

 

Join Alicia and Lizette as they speak with Dr. Martha Arellano, Associate Professor of Hematology and Oncology and Program Director of the Hematology and Medical Oncology Fellowship Program at the Winship Cancer Institute of Emory University in Atlanta, Georgia. On this episode, Dr. Arellano defines acute myeloid leukemia (AML) and how it is diagnosed. She addresses questions about cause and prevention and how treatment is determined for younger vs older patients. Dr. Arellano also explains the importance of a patient getting a second opinion to not only increase their education about diagnosis and treatment options but also as a way to move forward with a team they trust.

Medical Update on Acute Myelogenous Leukemia (AML)

This podcast was originally published on cancercare.org by Mary-Elizabeth Percival, Eytan M. Stein, Carolyn Messner on June 14, 2019, you can find it here.

 

Topics Covered

  • Overview of Acute Myelogenous Leukemia (AML)
  • Current Treatment Approaches
  • Transplantation as a Treatment Option for AML
  • New Therapies
  • The Role of Clinical Trials: How They Increase Your Treatment Options
  • Clinical Trial Updates
  • Symptom, Side Effect & Pain Management Tips
  • Key Questions to Ask Your Health Care Team
  • Quality-of-Life Concerns
  • Questions for Our Panel of Experts

Panel of Experts

Mary-Elizabeth Percival, MD, MS

Assistant Professor of Medicine (Hematology), University of Washington, Assistant Member (Clinical Research Division), Fred Hutchinson Cancer Research Center, Attending Physician, Seattle Cancer Care Alliance

Eytan M. Stein, MD

Hematologic Oncologist, Clinical Trialist, Acute Myeloid Leukemia, Leukemia Service, Department of Medicine, Memorial Sloan Kettering Cancer Center

Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW

Director of Education and Training, CancerCare

Treating Acute Myeloid Leukemia (AML)

This podcast was originally published on The Bloodline With LLS on May 21, 2019, here.

 

There have been few advances in treatment for AML in 40 years. Why is acute myeloid leukemia (AML) so difficult to treat? What is the current treatment for AML? How is The Leukemia & Lymphoma Society (LLS) striving to change that? How are targeted therapies being used for patients? Is immediate treatment for patients necessary for all AML patients? How does a patient’s ethnic background play a role in finding a matching bone marrow donor?

Join Alicia and Lizette as they address these questions and more with Dr. Martha Arellano from Winship Cancer Institute of Emory University in Atlanta, Georgia. On this episode, Dr. Arellano addresses current treatment and treatment advances for AML, including stem cell transplantation and cellular therapy. She also explains the goal and impact of the Beat AML Master Trial, a groundbreaking collaborative and targeted clinical trial for patients with AML. Listen in as Dr. Arellano shares her excitement about the future of treatment for AML.

Resources For Survivors

This resource was originally published on Bone Marrow and Cancer Foundation here.

 

The Journey Continues

The Bone Marrow & Cancer Foundation’s Survivorship Program provides resources that can address the needs of all bone marrow, stem cell, and cord blood transplant survivors, their families, and caregivers. Our goal is to provide education and support for people coping with the physical and emotional challenges of transplantation. Web accessibility to many of these resources means that no matter if you are at home, at a treatment center, or staying in out-patient lodging immediately following discharge, you are not alone; the survivor community is at your fingertips. The website will be an interactive community that serves as a meeting place and a shared resource for those who have survived a transplant and their families.

Transplant survivors tell us that while they felt well-prepared for transplant, many were very isolated in the days, weeks, and even months following transplant. The return to “normal” life takes a different path for each person; yet the shared common experiences can provide significant support and encouragement during the process. The Bone Marrow & Cancer Foundation’s Survivorship Program will address the ongoing need for emotional and social support, provide education about transplant and side effect related issues, host online discussion forums about social, physical, and psychological concerns, and help you create a healthy new life.

Survivor Telephone Support Group

Survivor Telephone Support Group staffed by oncology social workers, provides bone marrow, stem cell and cord blood transplant survivors with a weekly scheduled telephone conference support group to share experiences and draw support from others. For patients one year or more post-transplant. For more information or to register, contact the Bone Marrow & Cancer Foundation at patientservices@bonemarrow.org or 1-800-365-1336.

Resources for Patients and Families

The Foundation offers several programs, such as Ask the Expert and SupportLine to help patients and their families make the connections they need and resources to find information to help allay their fears and better understand the challenges they face.

Why You Should Consider a Clinical Trial

This podcast was originally published on The Bloodline With LLS on September 6, 2017, here.

 

Listen in as Alicia and Lizette from The Leukemia & Lymphoma Society (LLS) chat with John F. Gerecitano, MD, PhD, Clinical Director of Lymphoma Outpatient Services at Memorial Sloan Kettering Cancer Center and Margaret (Peg) McCormick, RN, BSN, MA, Consultant, Clinical Trials Support Center. Hear about the role clinical trials play in cancer treatment, who can participate in a clinical trial and how participants are protected, how LLS’s Clinical Trial Support Center assists patients in finding a trial that is right for them, and why it is important to think of clinical trials as a possible treatment option instead of a last resort.

Mentioned in this episode: