AML Newly Diagnosed Archives

Your Acute Myeloid Leukemia (AML) diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.
More resources for Newly Diagnosed with AML from Patient Empowerment Network.

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.

Early Detection of Acute Myeloid Leukemia (AML)

This podcast was originally published by Cancer Cast (Weill Cornell) here.


 

Pinkal Desai, MD – Speaker Bio

How specific gene mutations can enable prediction of acute myeloid leukemia (AML) up to a decade prior to disease development.

Guest: Pinkal Desai, MD, hematologist and medical oncologist at the Weill Cornell Medicine and NewYork-Presbyterian Hospital Leukemia Program.

Host: John Leonard, MD, world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

AML Treatment Options: What’s Available?

AML Treatment Options: What’s Available? from Patient Empowerment Network on Vimeo.

Dr. Jessica Altman reviews currently available treatments for acute myeloid leukemia (AML), including chemotherapy, stem cell transplant, and clinical trials.

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

Fact or Fiction? AML Treatment and Side Effects Resource Guide

What Causes a Gene Mutation?

Can AML Be Cured?


Transcript:

Patricia:                         

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

Dr. Jessica Altman:    

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

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

Patricia:          

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

Dr. Jessica Altman:    

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

Patricia:          

Stem cell transplant is also an option as well?

Dr. Jessica Altman:                

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

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

Patricia:          

Clinical trials available as well for AML, doctor?

Dr. Jessica Altman:    

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

How is an AML Treatment Approach Determined?

How is an AML Treatment Approach Determined? from Patient Empowerment Network on Vimeo.

 AML expert, Dr. Jessica Altman, discusses the factors she considers when making treatment decisions for patients.

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

Why Should Patients Be Hopeful About AML Treatment Options?

Office Visit Planner

Can AML Be Cured?


Transcript:

Patricia:     

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

Dr. Jessica Altman:    

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

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

Patricia:     

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

Dr. Jessica Altman:    

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

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

What Is the Impact of Cytogenetics on AML Care?

What Is the Impact of Cytogenetics on AML Care? from Patient Empowerment Network on Vimeo.

 Understanding the cytogenetics of your acute myeloid leukemia (AML) can help determine which treatment option might be best for you. Registered nurse Mayra Lee defines this complex term and the role it plays in AML care.

Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. Learn more about Mayra Lee.

More From AML Navigator

Related Resources

Why Cytogenetics and Molecular Profiling Necessary for AML Patients

What’s Next in AML Research?

Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference?

Transcript:

Cytogenetics would be the term that I would say patients are unaware of and don’t understand it quite often. It’s probably the first time you hear it when you come and sit down and we talk about the disease because the first thing you want to know is what is my prognosis and what is the treatment. Well, a lot of that is made through the cytogenetics of the disease.

We use these terms and we don’t often explain what all of that means. And what that means is that the disease itself has chromosomes, has mutations, has genetic information that will help us determine which treatment is a better option for you or is there a genetic mutation that you perhaps have that we now have medications that are used to treat that genetic mutation as a said just a few seconds ago. Like for the three, if you have that mutation, we now have medication to treat that where we didn’t have that five years ago or even four years ago.

 So, that terminology of cytogenetic and biomarkers are very new. They’re not something that the general public knows or understands very well.

But when you come to academic centers like where I’m at right now that is all we’re going to talk to you about because we want to do personalized medicine. And personalized medicine means what is it that your disease looks like because your disease does not look like the other AML patients. Your disease is your disease and it looks different and it’s going to behave differently. And so, we want to know about those mutations. So, so much of your treatment, so much of the prognosis is so closely linked to that that I think it’s an important thing to know. It’s important to understand it. It’s important to ask. It’s important to pause your doctor and your nurses and say, “I don’t understand what you mean by that. What does that word mean? Can you explain that to me?”

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Why Cytogenetics and Molecular Profiling is Necessary for AML Patients

Why Cytogenetics and Molecular Profiling is Necessary for AML Patients from Patient Empowerment Network on Vimeo.

AML expert, Dr. Pinkal Desai, outlines the reasoning behind the necessity of cytogenetics and molecular testing when managing an AML diagnosis.

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

More From AML Navigator

Related Resources

AML Genetic Testing Explained

The Pro-Active AML Patient Toolkit

Key Genetic Testing After an AML Diagnosis

Transcript:

Dr. Pinkal Desai:         

So for patients who are undergoing molecular testing or any diagnosis of AML, both cytogenetics and molecular profiling are important, so they do not supersede each other. This is the conglomerate information that we need from the diagnosis to make important medical decisions. Usually the diagnosis would include: looking at the cells under the microscope by the pathologist; flow cytometry, which is a way to identify the subtype of leukemia; chromosomes or karyotypic analysis, which is to look at the individual chromosomes and whether they are abnormal in these leukemia cells; and the last one would be the molecular mutations, which would be single-gene profiling of the leukemia cells.

All of these are important, and it’s not that one can be omitted. They’re all part and parcel of the diagnosis of AML, and all of them should be done.  

So my advice to patients whenever this topic comes up of molecular mutations is always an unequivocal – there should be no question that this should not be done. The advice is plain and simple. This has to be done at diagnosis and, in certain cases, at relapse as well in order to figure out the best treatment possible. If they’re at a site or a clinic where this molecular testing is not available, then they should seek a second opinion to a site that would do this testing because in this day and age of leukemia, there is no treatment and diagnosis that can be done without all of these components in place.

In the old days, we didn’t have a lot of treatment in AML. It was either chemotherapy or hypomethylating agents, and that’s it. But now we have several drugs, five or six of them, that were just approved in the past two years specifically for leukemia and targeting some of these mutations. We have Midostaurin, Gilteritinib, Ivosidenib, Enasidenib, and I don’t want to go on and on about these drugs, but the most important thing is that in this day and age where you have so many drugs, how to incorporate these drugs into the management for patients, both upfront and in the relapse setting, it’s extremely relevant to do this testing, and this is highly encouraged and should be done as part of the diagnosis and treatment.

What’s Next in AML Research?

What’s Next in AML Research? from Patient Empowerment Network on Vimeo.

Dr. Pinkal Desai, an AML specialist, discusses research in-progress on MRD testing and pre-disease mutations in leukemia.

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

More From AML Navigator

Related Resources

AML Genetic Testing Explained

Second Opinions in AML: The Importance of Moving Swiftly

Fact or Fiction? AML Treatment & Side Effects

Transcript:

Dr. Pinkal Desai:         

So we at Weill Cornell are a big leukemia center, and we are leading a lot of the clinical trials in AML, both in the upfront and the relapse setting. There are several research initiatives that we are highly interested in. One of them is how to incorporate some of these targeted treatments, both in the upfront and in the relapse setting.

The most important one that we’re actively working on is to monitor these patients, so MRD testing, or minimal residual testing, is extremely relevant in order to figure out whether the treatments are working in the right fashion, and would you change treatment or would it impact the patient’s overall survival if some of these mutations persist or not.

And we are really interested in monitoring these patients and these mutations to figure out a plan which is targeted not only for the mutation but also for the specific patient, and that is one of the things that we are very interested in and doing at Cornell.

We’re also looking at pre-disease mutations. There are several mutations – this is personally my research interest as well – there are certain people who are at risk of developing leukemia; for example, people who are undergoing chemotherapy for other cancers, and the presence of some of these mutations before the diagnosis of leukemia would highly be relevant because if we’re monitoring some of these people and figuring out who can develop this leukemia and can you do something about it, so this is sort of more on the prevention aspect of leukemia or secondary leukemia, which is also something we are interested in at Cornell and ongoing research is for us.

But the most important things is obviously for patients who actually have the diagnosis of AML, the best available agents as part of clinical trials, the best way to monitor them and design treatments so that we can achieve the best possible results for the patient is what we are striving for at Cornell, and it would be extremely helpful for patients to enroll into these trials and contribute both to their own treatment outcomes and also to the AML community at large.

Overcoming the Anxiety of an AML Diagnosis

Overcoming the Anxiety of an AML Diagnosis from Patient Empowerment Network on Vimeo.

Mayra Lee, a registered nurse, provides tools for coping with the anxiety and emotions that can follow an AML diagnosis.

Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

When people are anxious about their diagnosis, I think the best thing to do is to keep an eye on the bigger picture. I know your life is going to change. We can’t even make plans more than one week ahead of time. So, it’s important to keep an eye on the bigger picture. And the bigger picture is this is a steppingstone in your journey. This is a place, a situation, that you’re placed in that you’re having to undergo. But overall, you have a life outside of AML. You’ve had a life outside of AML. And keeping that bigger picture in the back of your head is very important. It’s very sane. You had a life. You enjoyed things before. You enjoyed going to the movies. You enjoy having dinners with your friends. You enjoy reading books. And so, it’s very healthy to continue to do those things and not get so consumed by the AML diagnosis and what is going on.

It will affect your life and it’s very important to keep doing what you’re doing. If you exercise, continue exercising. If you enjoy going to the movies, continue going to the movies with the expectation that you may not do that all of the time as you did before but you, certainly, can continue to do that because it keeps your head clear. It keeps you human because so much of AML takes away from you and you feel like you’re this thing, you’re this number. You’re the medical record number. You are Mr. so and so or you are a diagnosis. You are an AML diagnosis.  It keeps you human to keep an eye on the bigger picture.

Why Should You Become Educated about Your AML?

Why Should You Become Educated about Your AML? from Patient Empowerment Network on Vimeo.

Mayra Lee, a Registered Nurse, explains the positive benefits of educating yourself about AML and outlines key steps for learning more about your disease.

Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

So, the benefit of becoming informed about your disease when you’re diagnosed with AML would be that you are empowered. You will be empowered to – so much control is lost when you hear the word cancer. So much of your life changes in a matter of days or weeks from the time you’re told you have AML. Becoming informed about the treatments, about your disease, about what it is, about what the next step is empowers you to have control of the disease again when so much of your life is going to be out of control. It makes you be the driver in the disease along with your medical team. The medical team will steer you in which direction we think we should go but you will, ultimately, be the one making the decision with your team. You will not feel like the decision was made by your doctor. The decision is made together as it should be. The patient, the family, and the physicians and the team of medical people that take care of you.

It will not be something that your doctor does alone or that you’re doing alone because this is a very long journey, a very tedious journey. And the more you know about it also the less scared and the less stressed out you are about the diagnosis itself.

Patients can take key steps such as to become informed about their disease such as I think the first step would be to pick up those informational books or educational books that you will see out in the lobby in most physicians’ offices about AML, what is AML. That is step No. 1. Asking the nurses and the doctors do you have any information on my diagnosis, is there a reputable website that you recommend. There is a lot out there on the internet but a lot is not reputable and a lot is just hearsay.

 And a lot of it is patients sharing in their own stories, which are all good formats but in the very beginning, you want to go to reputable websites. You want to hear it from NCCN or any one of those websites that have really good information about what the disease really is. And then, you can navigate whichever way you want, if you want to join those forums. And then, you’re better informed and you’re better educated as to what to expect.

Optimize Your First Visit with Your AML Team

Registered nurse, Mayra Lee, outlines essential steps for making the most of  appointments with your AML team. Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

During an initial visit, patients often forget to ask about how the treatment for their AML cancer is going to impact the quality of their life and all of the things that they do on a daily basis and being impacted by such a treatment. Treatments are, often times, discussed about we’re going to do X chemo or Y chemo, seven plus three, three plus seven, five days on Dacogen, whatever it may be. But the patients don’t often grasp the amount of quality of life that will be taken from their lives.

Other things that impact the quality of their life is a financial burden that the treatments bring about, having caretakers around them. We often see patients that don’t have a lot of family members or don’t have family here in the state that they’re residing in and they don’t have a lot of support. So, these are all things that are going to be impacted by the treatments for AML. And a lot of times, patients don’t ask that question very clearly about what is the realistic expectations of my life during the treatment phase.

Patients can best prepare for an office visit by asking questions, writing down the questions, before they come to the office and having it prepared.

And I think it’s very important for patients to write those questions down before they come to their treatment. It’s also very important to bring a note pad and a pen and write down things that are being said during your visit, whether it be the first time you hear this or a second or third opinion is very important to write down treatments. It’s important to write down things that you might not have picked up on the first visit when you were first diagnosed like chromosomes and different treatments and different tests that are going to be ordered. It’ very difficult to retain all of that information in one sitting. So, it’s important to bring a note pad and bring a friend to write those things down with you.

It’s very important to bring a family member or a friend to your appointments because that person – you can bounce back ideas and you can bounce back information.

You’re not there alone and it makes you feel like you’re not carrying the burden of now distributing this information to your friends and your family who are, obviously, very worried about you, your prognosis, your diagnosis, what did the doctor say. And you have someone else to say oh, they said this or the doctor said that. And you will not remember everything that was said in one sitting. So, bringing your friend or family member helps put all of that information together and helps recall everything that was said in that visit.