The Power of Positivity: Advice from an AML Patient

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The Power of Positivity: Advice from an AML Patient from Patient Empowerment Network on Vimeo.

Casey Marsh, an AML patient advocate, shares advice that helped her through maintain her spirit throughout her diagnosis and stem cell transplant.

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

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Transcript:

Casey Marsh:

The three pieces of advice that I would give someone newly diagnosed with AML would be my three power “p” words; the first one being positivity. Having a positive attitude through all of this is key because not every step forward is physical, but it definitely is mental.

So, if you can strive to keep that positive attitude, then everybody else around you will get that same feeling, and it will just help you be competitive and motivated through this whole thing. And the second “p” word would be persevere. Having to persevere through all of that really gives you that encouragement and that strong foundation that when things are bad, you know that they will get better. So, having to persevere through all of that is essential to have.

And then the third “p” word would be the power of prayer. So, whether you have people just talking to their family or friends about your or to whomever they wish, you talking to anybody or even to yourself to me is considered a prayer. So, sending all of those messages just to anybody that will listen is essential because together everybody makes a stronger effort, and nobody will ever have to fight alone.

So, you want to be positive, you want to persevere, and you want to show some sort of prayer.

Confronting Fears About Clinical Trials

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Confronting Fears About Clinical Trials from Patient Empowerment Network on Vimeo. 

Registered nurse Mayra Lee addresses and debunks common patient fears about clinical trials and explains the ins and outs of the research process. Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. More about the expert. 

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 Overcoming the Anxiety of an AML Diagnosis 

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Transcript:

Mayra:

Patients often think that clinical trials are an experiment where you’re in a white room and you’re wearing a white gown and you’re strapped down to a stretcher. Clinical trials are not that at all. Clinical trials are, often times, they’re medications that have been approved for other diagnoses for the types of cancer that are being now trialed in human subjects. So, we are testing them out but we’re not using you as a guinea pig. These are treatments that have been used in other forms of cancer. The majority of the clinical trials that we currently have available are trials of medications that are being used in other diagnoses and that are now being used in AML because it shows activity in our diagnosis.

It’s shown that it has curative options in other diagnoses. I think in the past, it was a lot like that. It was a lot like we don’t know what this is and we don’t know what this is going to do to you. We do know what this is and we do know what this is going to do to you because science has evolved in the last 20 years, even in the last 10 years to that degree. It’s no longer an experiment on you. We’re not using you as a guinea pig to try something out. We are giving you hope. We are giving you a chance to fight that wasn’t available before or that is not available with conventional medications. Other than in the setting of a clinical trial, you wouldn’t have the option to have that medication. The other thing also about clinical trials that I myself fail to say to patients is if this medication does not ever get FDA approved but it worked for you, we’re not going to pull you off of that medication.

The manufacturer has the obligation, the moral obligation, to continue to provide that medication for you because it is working for you until it stops working for you. You may be the only person in the world that medication works for. They have to continue to provide that medication for you. So, it’s unethical for them to give you a treatment that worked for you but it didn’t get FDA approved. You will be on that treatment until it stops working for you.

Why Should Patients Be Hopeful About AML Treatment Options?

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Why Should Patients Be Hopeful About AML Treatment Options? from Patient Empowerment Network on Vimeo.

Registered nurse Mayra Lee explains why AML patients should be optimistic, emphasizing the positive impact of recent treatment approvals and personalized medicine. Download the Find Your Voice Resource Guide here. 

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

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Transcript:

Mayra Lee:

Other advice that I have for AML patients or reasons to be optimistic is a lot has happened in the last three years in AML that hasn’t happened in 30 years. There has been a lot of drugs that just recently got approved. There has been a lot of research. Cancer itself is moving in leaps and bounds and it’s incredible what’s happening actually in our centers and the academic centers with research and clinical research and personalized medicine based on the cytogenetics of the diseases.

There’s so much of that going on and there is so much focus on that that there is a lot of hope. Recently, in the last two years or so, there have been at least five or six medications approved for AML that didn’t exist before in the market. So, it gives hope to other patients that didn’t have hope before. And clinical trials give hope to those patients as well. We can’t promise you any results on a clinical trial but there’s certainly a medication or a treatment that wasn’t available to you beforehand or that wasn’t available if it’s not outside of the setting of a clinical trial. So, keep optimistic. Keep thinking that you’re going to beat this because if you come into this arena of AML feeling defeated that is going to reflect, actually, on everything.

Patients that have a great attitude, have a positive attitude, think that I’m here, we’re going to do this together do the best.

Overcoming the Anxiety of an AML Diagnosis

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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.

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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?

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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. Download the Find Your Voice Resource Guide here. 

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

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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.

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

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Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference? from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, explains the difference between hereditary genetic testing for cancer risk and genetic testing following a cancer diagnosis.

Brittany DeGreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

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Transcript:

My name is Brittany DeGreef and I am a licensed and certified genetic counselor and I work primarily in oncology genetics. At the Lurie Cancer Center, what I do is I provide comprehensive genetic counseling services for patients and families. Basically, what I do is take in family and personal history.

I help interpret what patterns we’re seeing in families. I provide risk assessment. Then we order and interpret genetic testing results. Based on those results, sometimes we make medical management recommendations for patients and families within a multi-disciplinary team within oncology at Northwestern.

The difference between predictive genetic testing and cancer genetic testing – let’s start with predictive genetic testing first. This means that we are testing someone who might be at risk for a specific hereditary condition, in particular, hereditary cancer syndromes.

In this case, what we’re doing is testing someone who is asymptomatic or does not have any signs of cancer at this point. What we’re trying to do is to identify if that person might be at high risk for specific cancers and implement certain screening strategies to risk reduction procedures and implement surveillance, if needed, if someone is at high risk for specific cancers.

When we think of cancer genetic testing, this person is likely already diagnosed with cancer and what we’re doing is trying to figure out if this person inherited something from either their mom or dad that placed them at a higher risk to get cancer in the first place.

In the past, this type of testing did not impact treatment strategies. But recently, this has been kind of the forefront of medicine where we are seeing patients who are just diagnosed with cancer and they are using genetic testing information to then incorporate that into their treatment approach.

Optimize Your First Visit with Your AML Team

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Registered nurse, Mayra Lee, outlines essential steps for making the most of  appointments with your AML team. Download the Office Visit Planner and bring it to your next appointment here.

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

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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.

Key Genetic Testing after an AML Diagnosis

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Key Genetic Testing after an AML Diagnosis from Patient Empowerment Network on Vimeo.

Dr. Elizabeth Bowhay-Carnes provides advice on key genetic tests that should take place after an AML diagnosis and how they can inform your treatment options. Download the Find Your Voice Resource Guide here.

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

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Transcript:

Transcript: 

When a patient is first diagnosed with AML, or Acute Myeloid Leukemia, that test comes back initially as a test called flow cytometry, and that is really just one of the very first initial tests that is needed in the workup.   

AML does not have traditional staging, as solid tumors have. There’s no such thing as a stage one, two, three, four. Instead, AML is divided into different risk categories. We call those low-risk, intermediate-risk, or high-risk, or sometimes we use the term standard-risk, intermediate-risk, high-risk.  

And that information is determined from some specialty tests that we call cytogenetics. Sometimes we use the term molecular testing or next-generation sequencing. Those three different terms, cytogenetics, molecular, next generation sequencing, are all specialty lab tests that help us determine what risk category group does a patient fall in.  

So, when a patient is first diagnosed with AML, that is very important to establish the initial diagnosis, but there’s those important follow-up tests that are done over the following weeks of treatment, from diagnosis at the beginning of treatment, that determine what a patient’s risk categories are. That information is very important because when we talk about initial treatment, a lot of the time that initial treatment is the same for all patients.   

But then, there are other medications that can be added on, or different steps in the treatment process, that vary based on a patient’s individual risk category and risk characteristic. 

What Would You Do? AML Advice From An Expert

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What Would You Do? AML Advice From An Expert from Patient Empowerment Network on Vimeo.

Dr. Elizabeth Bowhay-Carnes provides advice for patients facing an AML diagnosis, including the necessity of putting together a strong healthcare team and leaning on your personal support system. Download the Find Your Voice Resource Guide here.

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

See More From the The Pro-Active AML Patient Toolkit

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Key Genetic Testing After an AML Diagnosis

  

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Facing a Cancer Diagnosis: Advice From an Expert

 

Transcript:

My name is Dr. Elizabeth Bowhay-Carnes. I work at UT Health San Antonio MD Anderson Cancer Center, and I am a blood specialist. I specialize in taking care of patients that have various blood disorders, and my passion is working with patients and their families when someone is diagnosed with a blood cancer.   

If I was a patient who was diagnosed with AML today, the first thing I would want to do is take a deep breath. When somebody is diagnosed with AML, this is a disorder that comes on suddenly, and so usually a patient and family are in shock. Usually, somebody was perfectly healthy a couple weeks before their presentation and then they find themselves admitted in a hospital, or a hospital setting, feeling quite ill. And so, one of the first things I would do is to make sure I understand who my care team will be. Fighting cancer is a team sport.  

It is not an individual event. Although the patient is the most valuable player, there’s different parts of the team that are needed to get somebody through this diagnosis and their treatment. If I was the patient, I would make sure I understood who would be in charge of my treatment plan or who would be the attending physician. I would want to know who the main nursing contact or support person would be. If there’s calls in the middle of the night or emergencies, who’s the first person to call? I would want to make sure I have a family or friend support person designated as the main supportive role, who would help me fight through this process. Again, if I was diagnosed with AML today, I would take a deep breath, and I would re-center myself and establish who my care team would be. 

Facing a Cancer Diagnosis: Advice From An Expert

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Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key. Download the Office Visit Planner and bring it to your next appointment here.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit

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 Find Your Voice Resource Guide  Key Genetic Testing After an AML Diagnosis  Optimize Your First Visit With Your AML Team

Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

Office Visit Planner

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Appointments with your physician can be overwhelming. To optimize your visit, it’s best to arrive organized and prepared to take notes. Our Office Visit Planner can help. Guides for your first office visit as well as your follow-up office visit, tailored for patients and caregivers, are available below. Download, print and bring along with you to the appointment.

For Patients:

First Office Visit Planner
Follow Up Visit Planner

 

For Care Partners:

First Office Visit Planner
Follow Up Visit Planner