What You Should Know About Caregiver Burnout and How to Avoid it

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Taking care of a loved one can be one of the most rewarding experiences, especially if you have had a great relationship with that loved one. While the overall involvement in a senior loved one’s life as a caregiver might be satisfying and make you feel happy or proud of working together, there are times when it can lead to mental and emotional burnout. After all, you are constantly required to nurture and care for another human being which could cause you to forget to care for yourself, leading to “caregiver fatigue” or also known by the popular phrase, “caregiver burnout.”

According to the National Alliance for Caregivers, on average, family caregivers spend around 24 hours a week providing care for their loved ones. I personally was spending anywhere from 20-30 hours weekly while taking care of my grandmother. It really depended on the week and the needs that came up. But sometimes, it felt like much more time was being spent taking care of my grandmother rather than myself.

What I learned during the process was that the best way to avoid caregiver burnout was to identify when I felt I was going through it. Then, to prevent it. Which led me to highlight some signs linked to caregiver burnout.

Signs leading to caregiver burnout

The following signs point to caregiver burnout:

  • Tiredness and a lack of energy for activities that you could, previously, easily perform.
  • Having trouble sleeping.
  • You no longer enjoy activities, specifically hobbies, that you loved.
  • Relationships with loved ones start to become strained.
  • Frequent headaches and/or body pain.
  • You are easily irritable.

The above list of signs isn’t exhaustive but contains the most common signs that caregivers start to experience prior to or during burnout. While the above list is specific for emotional burnout, physical burnout is also important to avoid. Most caregivers face it from having to carry their senior loved ones from room to room or up the stairs or not getting proper sleep.

It is vital that our loved ones utilize technology that is available to them such as wheelchairs, canes, and even stairlifts for elderly persons to take that burden off of yourself. You can help with this by making a list of mobility or technology devices that can benefit both of your lives and take the stress off of your body. While your senior loved one may not be very keen on the idea of using mobility devices (not all are), you’ll need to reason with them why the device is a necessity for them and yourself. Hopefully, they’ll end up understanding the needs of both of you.

In any case of burnout, as soon as you start to experience the signs, it is important you take a step back and analyze why you may be burning yourself out. You need to ask yourself the following:

  1. Is being a caregiver for a loved one too much for me to handle while keeping my job and other responsibilities?
  2. Am I overly consumed with looking after a loved one that I no longer take time during the week for myself?
  3. Am I not eating well or finding time to exercise? This can take a toll on you both mentally and physically.
  4. Do I still have a healthy relationship with my loved one? If you feel like you don’t, for whatever reason, then this could be causing you extra stress. Not to mention, your loved one might be feeling the stress as well.

These questions will help narrow your problem leading to burnout so you can avoid and rectify it. Most caregivers do the following to avoid or combat burnout:

Take breaks

You alone may not be able to provide full-time support for a loved one. At times many caregivers are juggling family and a job along with providing care. This, of course, is a lot to juggle and usually leads to stress and mental/physical breakdowns especially when taking care of a loved one going through a long-term recovery. Which is why you need to take breaks and at times, seek the help of professional caregivers or other family members to assist you. It doesn’t have to be every day but taking a break two to three times a week can make a huge difference and help prevent burnout.

By taking time out for yourself, you can also improve your relationship with your loved one. Personally, a break allowed me to focus on myself, which made me less absorbed on just my grandmother. I usually exercised or spent time with friends which kept me grounded.

Before I started to take breaks, I felt I was more irritated and disgruntled from time to time with my grandmother, mostly because I felt I was not getting time to do anything but take care of her. But by taking some time off from my caregiving responsibilities, I no longer felt this way which definitely made our relationship better. Even she started noticing that I was acting happier and my overall outlook about the situation was then positive.

Talk to family members or other caregivers

Humans find comfort in discussing their problems. Just the process of venting helps us get a lot off our chest. Which is why caregivers should look towards family members and other caregivers to talk to about any problems or additional stress they may be taking on. It doesn’t necessarily have to be to seek a solution but just to vent their feelings out so you stay refreshed and grounded.

I sought refuge in a friend who was also taking care of a loved one who recently went through a stroke. We would talk 2-3 times a week to listen and comfort one another. By sharing my thoughts with others, I let go of a lot of steam that I would normally store.

Most of it was just things I had to let go of, but of course, keeping it in did hurt the relationship I had with my grandmother. The more I got off my chest while talking to family and other caregivers, the more comfortable I was. Especially while talking to other caregivers because it made me realize that others also shared similar feelings and I wasn’t alone. This helped me to refocus my mindset with a positive outlook and created a stronger, deeper connection with my grandmother.

If you find yourself experiencing the signs listed above or you already believe that you have caregiver burnout, know that you aren’t alone. The best thing you can do is try to find what works for you to better your mindset. Maybe you don’t feel like you’re the issue and that your loved one is causing the exhaustion. Whatever the case, take a step back, analyze the situation, and find a route to channel your emotions. Don’t assume this is an overnight thing, consistency is key to constructing a relationship and removing negative energy.

Facing Forward: How to Move On After Cancer Treatment

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When you go through something as stressful, traumatizing, and life-altering as cancer, you may come out on the other end of the tunnel feeling like you were just put through the spin cycle. There’s no “normal” way to respond to a cancer diagnosis, treatment, or remission prognosis, and you should never force yourself into taking on one specific emotion or perspective. You may feel angry, sad, scared, hopeful, or joyous, and all are perfectly acceptable responses to have.

Regardless of how the experience left you feeling, it’s important to work at moving on and processing it in a healthy way. Here are a few ways to help you do it.

Measure Your Mental Health

You’ve spent the last several months or years caring for your body to the point of exhaustion. Now it’s your brain’s turn. Depression, anxiety, post-traumatic stress, and cancer fears are quite common among survivors. In fact, between 18 and 20 percent of adult cancer survivors report symptoms of anxiety[1], while almost 80 percent of survivors experience some level of fear of recurrence. It’s vital that cancer survivors and patients alike are constantly looking inward and taking daily measurements of mood and general well-being. If you experience any persistent, negative feelings, be sure to seek out advice from a licensed mental health professional.

Focus on Daily Self-Care

Because your daily life was thrown completely off track during treatment, it can be hard to settle back into a healthy routine when it’s all over. Implementing certain self-care practices into your day-to-day life can help you stay mindful and prevent you from slipping into prolonged states of anxiety or depression. It will help you immensely to pick up healthy self-care practices, such as yoga, meditation, or long evening baths. Integrating weekly or bi-weekly social time will also help quite a bit, especially if you’re spending time with people who share similar interests or experiences.

Work on Rebuilding Self-Confidence

Though we’re ever-grateful that they exist (and save thousands of lives each year), chemotherapy, surgery, and radiation take a massive toll on our bodies. They leave us looking and feeling burnt out and exhausted, often grinding the last little bit of self-confidence we have into a sad, lifeless pulp. Even if you’ve never been a particularly vain person, your life post-cancer is time to help you regain your self-worth at every turn, and it’s perfectly okay to spend some time making yourself feel beautiful both inside and out! Here are some great ways to do it:

Regrow a Full Head of Hair

If you lost your hair during chemotherapy, there are a few cutting-edge hair loss treatments to consider. Though they’ve only been cleared to treat hair loss due to androgenetic alopecia by the FDA, many people find that low-level laser therapy devices help hair to grow back [2] quicker and healthier after treatment. Luckily, while it takes a little bit of time, most cancer patients are able to fully grow back their hair.

Work on Getting Back to a Healthy Weight

Cancer patients know that the constant barrage of chemicals and harsh treatments can seriously mess with our weight. Weight loss is one of the most common symptoms of both cancer and treatment, with between 40 and 80 percent of patients reporting weight loss [3] and cachexia (wasting) from diagnosis to advanced treatment. Working with your doctor or a dietician will help you return to a healthy weight in a safe way. He or she will design a diet and, if needed, prescribe medication to help you manage your weight.

Treat Your Skin and Nails

Hair isn’t the only physical feature that takes a beating during the treatment process. Chemotherapy and radiation can leave skin red, dry, itchy, or discolored, and it tends to leave nails cracked, infected, or yellow. A full-blown spa day is in order after you’ve recovered from your final treatment. Make sure to also see a dermatologist, especially if you’ve seen any serious changes in your skin since you were diagnosed. 

Connect with Other Survivors

Building up a strong social network is vital to staying happy and positive post-cancer, and nobody will help you get there faster than fellow survivors. Like anything on this list, make sure you ease into it and wait until you’re fully ready. Having to recount your experience before you’ve fully processed it can worsen symptoms of post-traumatic stress, depression, and anxiety. But, after a period of time, it will help you feel stronger and more secure when you have a group of friends or family members to share your experience with. You can use the American Cancer Society’s resources database [4] to find specific support groups in your area.

Get Enough Exercise

Medical experts consistently say that exercise is among the most important components of a healthy life during and after cancer. One of the biggest reasons for this is that, though it sounds counterintuitive, getting physical can help reduce the ever-present cancer fatigue while also helping you get better sleep, reducing symptoms of depression and anxiety, and helping you build back muscle strength that may have deteriorated during treatment. Just be sure to follow all medical advice as you ease back into exercise, especially if you’ve recently had surgery.

Volunteer for a Research Foundation

If you’re experiencing any feelings of sadness, anger, or hopelessness, it can really help you to get involved in cancer-specific organizations that donate to research efforts. Finding a cure or at least more viable treatment options for this devastating disease is certainly on the horizon, but getting there takes a lot of money, resources, and effort. Getting involved can help you connect with other survivors and hopeful people, which will lead you into a deeper state of happiness and optimism.

Let Yourself Experience Loss, Pain, and Joy

Again, there’s no “correct” way to experience cancer, no matter if you’ve just been diagnosed or have just finished your final round of treatment. The most important thing you can do is to constantly take stock of your feelings, being careful not to suppress them, and do everything you can to stay healthy both mentally and physically every step of the way.

References:

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915316/

[2] https://www.capillus.com/blog/a-skeptic%E2%80%99s-guide-to-understanding-how-a-laser-hair-cap-helps-regrow-hair/

[3] https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/weight-loss

[4] https://www.cancer.org/treatment/support-programs-and-services/resource-search.html

Genetic Testing in AML: What Are Doctors Looking For?

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Genetic Testing in AML: What Are Doctors Looking For? from Patient Empowerment Network on Vimeo.

Dr. Pinkal Desai, from Weill Cornell Medicine, discusses the genetic testing required in AML, including mutations and changes in chromosomes that are being identified, and how these results can impact risk and prognosis.

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 INSIST! AML

Related Resources

AML Genetic Testing Explained

 Why Should AML Patients Undergo Genetic Testing?  

Why Should AML Patients Undergo Genetic Testing?

   

Key Genetic Testing after an AML Diagnosis

Transcript:

Dr. Pinkal Desai:         

So there are several genes that we look for, but the most important ones from a standpoint of choosing treatments and monitoring, the first one would be FLT3. There are two kinds of FLT3 mutations, ITD and TKD; both can have different drugs that target them.

This is relevant because some of the upfront management, even when we choose – in younger patients, for example, when we are choosing chemotherapy, there are approved FLT3 agents that can be added to the chemotherapy. For example, Midostaurin, that’s a FLT3 inhibitor; we use that, and it’s important to know the FLT3 results, and preferably within 48 hours from the diagnosis, in order to choose the right treatment.

The other mutations that are relevant are IDH1 and IDH2. Both of them have approved targeted treatment against them, so depending on the clinical scenario of the patient, whether it’s new diagnosis or a relapse, these mutations are important to test, and the same for FLT3 as well.

I want to clarify here that sometimes the molecular mutations are absolutely important at diagnosis, but some of these mutations are also important to be retested in people who have relapsed because it’s not always the case that what is present at baseline may be the same at the time of relapse.

It’s possible that the clone is different, so some of these targeted mutations against which we have drugs, like FLT3, IDH, we need to test these mutations at relapse to make sure that we’re not missing them, particularly if they were present at diagnosis. The other mutation that is also relevant is TP53 because there are ongoing clinical trials that are targeting against these mutations, so the relevance of mutations are not only important in approved agents, but also in the ongoing clinical trials that are targeting these mutations.

 NPM1 is the other important mutation that is important in risk profiling, as well as monitoring over time to see if we can anticipate relapse or do something about it in the future.

There’s a laundry list of other mutations, but these are – I don’t think that patients should get lost into the individual mutations at the beginning. I think the relevant point here is that all of these need to be sent, and once the panel comes back with all of these mutations, then it’s time to sit down and go through, “Okay, the patient has FLT3, NPM1, plus some other mutation. What does that mean for me?” I think that’s what the patients should be asking. “Okay, I got these three mutations. I have these four mutations. Tell me how this is going to impact my care and my chances of survival?” I think that’s the most important thing.

Everybody’s leukemia is different. It’s more than a mixed bag; it’s actually unique to patients. Someone’s profile and genetic signature is different than someone else’s.

It’s important that every mutation is actually dealt with in relation to the other because it’s not just the presence of individual mutations, but the combinations of all of these mutations that are high relevant in figuring out whether this is important in the future or not. 

Beating Burnout: Self-Care Strategies for Patient Advocates

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As patient advocates we are highly motivated to make things better for others. Our commitment and passion for the work we do can lead us to take on more activities with ever-increasing demands on our time and energy. All of this we do willingly, but this work doesn’t happen without a degree of personal cost. “If we are living with the condition, it is personal beyond measure,” writes diabetes advocate Renza Scibilia. “If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a difference again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.”

Commenting on the nature of patient advocacy, therapist Karin Sieger [1] points out, “this area can be heightened with emotions because lives can depend on it and often advocates themselves are directly or indirectly affected by patient care aspects or illness they are advocating for. It stands to reason that those involved in advocacy will be at the receiving end of emotional, mental and physically draining activities.”   Given this fact, it’s not uncommon to experience symptoms of burnout the longer we work in the field of advocacy.

“This is a real thing,” says patient leader and two-time cancer survivor, Shari Berman [2]. “Working without pay but as a patient leader is recipe for burnout especially when you feel like the needle isn’t moving.”  As metastatic breast cancer patient and advocate, Julia Maues [3] says, “Oh the burnout is so real and so unique. For once, many of us have the same illness as the people we are advocating for. It’s like advocating for better lives for prisoners while being in jail ourselves.”

What Is Burnout?

Burnout is a state of chronic stress which occurs when we’ve taken on too much and in the words of Sieger, “overstepped our coping threshold.”  Scibilia describes how she has “found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.”

One of the lesser acknowledged contributing factors to burnout, particularly in the field of cancer advocacy, is the emotional toll of losing friends to the disease. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC) [4] describes, “the biggest factor that’s caused me burnout is the intense loss and grief of losing so many friends and family to this terrible disease.” Research advocate, AnneMarie Ciccarella [5] agrees.  “I had to force myself to take a step back from actively supporting individual people in favor of more research advocacy because the losses became unbearable,” she explains. “There are times I’ll look at a particular blog post and start crying when I read the comments. I see comments from so many who are now gone and it’s heartbreaking.”

Pamela Katz Ressler, founder of Stress Resources [6], draws a distinction between burnout and compassion fatigue which can co-exist with burn-out.   “Compassion fatigue is generally rapid onset and often is the result of exposure to extreme suffering or witnessing traumatic events and situations,” she explains. “It can be one event or a cumulative exposure. Burnout can be described as emotional (and physical) exhaustion leading to withdrawal and disconnection from activities that once were meaningful. As advocates, we often expend energy, caring, and empathy as if it comes from a bottomless well.”

Spotting the Signs of Burnout

Burnout doesn’t happen suddenly. It creeps up on us over time, but our bodies and minds do give us warning signs. Symptoms can include physical and emotional exhaustion; impaired concentration; increased irritability or feelings of apathy, detachment or cynicism related to the work you are doing.  In the words of Scibilia, “I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.

Looking at some of the common factors related to burnout, Sieger points to:

  • An inability to say ‘no’.
  • The fear of putting our needs first and in doing so letting others down.
  • Taking on too much because we want to please, need to control, cannot delegate, want to micro-manage, cannot trust anyone else to do things for or with us, or have no-one to share responsibilities with.
  • We are not sufficiently in touch with our bodies, minds, or emotions to see the tell-tale signs.
  • We think it is a sign of strength and authority to be able to take on more and more.
  • We are afraid of becoming replaceable.
  • We find it difficult to accept, that we can no longer take on as much as before.

If you recognize your own tendency towards any of these factors, you may be at risk of burnout. Katz Ressler advises that “the first step in preventing burnout and compassion fatigue is awareness and recognition that the well of empathy, energy and caring needs to continually be refilled.”  The following self-care strategies and tips can help you, in the words of Katz Ressler, “refill the well of empathy to maintain your ability to advocate effectively.”

14 Self-Care Strategies to Address Burnout

“Different people have different ways that work well for them, says Sieger.  “Self-care, keeping health boundaries, a healthy diet, limited stress, moderate exercise, sufficient sleep and quiet down-time are the essentials.”

Let’s take a deeper dive into these essential strategies and add a few more to our self-care toolkit.

1. Set realistic expectations. Patient advocate, Liza Bernstein [7], believes a key element in managing burnout is to set realistic expectations. “One key to mitigating patient advocacy burnout is to recognize our role and agency in trying to manage it,” she says. “It is not easy, once you’re diagnosed with and treated for cancer to reconcile your new physical and emotional reality with the non-cancer person you used to be. So we have unrealistic expectations.” Bernstein describes her “burnout prevention strategy” at the 2018 San Antonio Breast Cancer Symposium. “It was a few months after a surgery and I wasn’t yet 100%,” she explains. “So I gave myself ‘The Talk’ and granted myself permission to do ‘as little as possible’ there; e., I paced myself, took breaks, and didn’t burden myself with ableist expectations. I did more tangible things tuning out the presentation & DM’ing people in my network to connect a distressed newly diagnosed person with a second opinion appointment. Seems like small thing but had big impact!”

2. Take breaks between big projects. Try to avoid jumping from one time-consuming project to the next in order to give your mind and body a chance to recover. “When projects turn into being a tedious chore, that’s a big sign of burn out,” says patient advocate Mary Pettigrew [8], who advises, “make it a habit to purge the unfulfilling, stressful activities, keep those of value and explore new territory/opportunities.”

3. Learn to prioritize. Ovarian cancer advocate, Dee Sparacio, wrote on her blog [9] about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grandkids, or dog?
  • Does that work bring me joy?

Remember, to quote Stage 4 melanoma patient, Kay Curtin [10], “it’s very easy to get caught up trying to fix everyone’ else’s priorities.” These questions can act as a helpful guide when it comes to reassessing your own priorities and what matters to you.

4. Say no. Self-care may involve you saying no more often, which, if you are like me, you might find challenging. There are always new opportunities or requests for your time, but an important element of self-care is the ability to pace yourself.  Before you say yes to the next request, look at the time and energy you have in a realistic way.  Follow Sparacio’s advice “I review my advocacy work and its impact once a year. I keep what brings me joy -not necessarily that which brings me exposure. The hard thing is learning to say no. If I say no I will provide the name of a new advocate voice. We need to cultivate new voices.”

5. Schedule time for yourself each day. “Schedule time to step away from ‘doing’ and shift to ‘being’. Take five minutes to turn off your phone, notice your breath and release muscle tension in your body,” recommends Katz Ressler. “I’ll hit the beach collecting shells to clear my head, but a simple walk around the block is helpful too,” says Ciccarella, “and when I have nothing left, I give myself permission to hit the sofa and turn on mindless, silly television.”

6. Feed your fighting spirit. Registered dietitian and founder of “Dam. Mad. About Breast Cancer”[11], Cathy Leman reminds us of the importance of good nutrition in maintaining a healthy balance. “Balanced blood sugar for sustained energy and optimizing your immune system so you stay well are just two benefits of nourishing your body with quality meals and snacks,” she says. “Dried, fresh and frozen fruit, nuts, pre-washed and bagged veggies, whole grains and good olive oils and flavored vinegars can help you pull meals and snacks together quickly and easily.”

7. Control your devices. iPads, computers, and smartphones are essential tools in the patient advocate’s toolkit, but they can consume large amounts of your time and energy. Get in the habit of turning them off as much as possible, particularly before you go to bed at night.

8. Slumber your way to good health. “With all you have to get done, getting adequate sleep may fall to the bottom of your list,” says Leman “But when you don’t get the sleep your body needs (and deserves!), your overall performance suffers.” A good morning, she advises always begins the night before. “Create an evening ‘sleep hygiene’ routine that signals to your brain and body you’re ready to call it a day. When you’re well rested, you’ll have more patience, clarity of thought and focus to do your important work. And as a bonus? Getting enough sleep helps you make healthier food choices, which supports good health all the way around.”

9. Exercise your body’s need to move. “You need mental clarity, focus and stamina, and regular exercise is a simple way to tap those reserves,” advises Leman. “Even a 10 minute walk can clear brain fog, deliver nutrients and oxygen to every cell in your body, and build physical endurance for the long haul. Combine strength training, cardiovascular, core, flexibility and balance exercises as often as possible for a well-rounded fitness routine that will keep you moving forward.”

10. Take time for reflection. Taking time, whether it’s sitting quietly on your own, journaling, or speaking with a friend or therapist to reflect on what’s going on for you is important. “It’s important for all of us in this space to pause, assess, and take whatever time we need to reboot,” advises Ciccarella, for whom writing is “a powerful outlet to deal with all of my feelings. Identifying my feelings and their underlying cause allows me to accept the feeling and FEEL it – whether it’s fear, anger, grief -really, any emotion that drags me down.”

11. Don’t go it alone. Whether it’s peer support, or a professional, find a group or an individual who can support you on this journey. “I would even go as far as saying that having another independent professional to support us is essential,” suggests Sieger, “like supervision for therapists and counsellors, where we can talk things over, an outlet for our pressure and feelings.”

12. Intentionally step away from your “tribe” for short periods of time to refill your reserves, advises Katz Ressler. “Detribe” is a term she coined a number of years ago that may seem counterintuitive. As she explains it: “How can we step away from our ‘tribe’ when there is so much to do? Research shows that by intentionally engaging in self-care activities (think meditation, a walk in nature, a cup of tea with a friend) burnout can be reduced or eliminated.”

13. Choose what works for you. “You have to find what works for you,” says Bernstein. “It might not be a massage/spa, it might be doing what you love, giving back, being in nature, taking a nap, patting your dog… it really means being compassionate to you, as if you were your best friend.”  Katz Ressler echoes this and advocates practising a spirit of loving-kindness. “Allow yourself to be as kind and empathic to yourself as you are to others. What ‘gift’ would you give someone else to show they are appreciated? Give the same gift to yourself,” she says.

14. Knowing when it’s time to quit. Sometimes the best self-care is to quit. Sue Robins [12]  took the decision to do just that. “I still do advocacy but on my own terms, through writing and storytelling and with individuals. I handled my burnout by quitting the ‘patient engagement’ world.”

Take-home message

“Burnout in patient advocacy is real,” says Terri Coutee, founder of  DiepCFoundation.org [13].  “It takes a tremendous amount of dedication and discipline with the potential of draining your personal emotional and physical energy.” But the good news is that burnout is reversible. By putting the focus back on self-care, you can learn to manage your energy, time, and personal resources better. Although, this too takes self-discipline. “I think it takes discipline (ie, effort) for many of us to remind ourselves we need to practice self-care regularly,” notes Bernstein.  As Coutee explains, “choosing the gym, saying no, and letting others take care of themselves are among the many actions requiring discipline. Choose the one that works for you so you can continue the work of patient advocacy with passion without burning out.”

Whichever path to self-care you choose, once burnout is recognized and attended to, it can become a chance to rediscover your commitment to the important work you do as advocates for better care for yourself, your loved ones and your community. Let these tips and techniques be a reminder that YOU are most deserving of the gift of self-care.

Resource Links:

[1] Karin Sieger

[2] Shari Berman

[3] Julia Maues

[4] Advocates for Breast Cancer

[5] AnneMarie Ciccarella

[6] Stress Resources

[7] Liza Bernstein

[8] Mary Pettigrew

[9] Dee’s blog

[10] Kay Curtin

[11] Dam. Mad. About Breast Cancer

[12] Sue Robins

[13] DiepCFoundation.org

Why Should AML Patients Undergo Genetic Testing?

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Why Should AML Patients Undergo Genetic Testing? from Patient Empowerment Network on Vimeo.

AML expert, Dr. Pinkal Desai, explains the necessity of genetic testing when AML is diagnosed, including an overview of relevant tests and how results can affect prognosis, risk factors and treatment.

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.

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Related Resources

AML Genetic Testing Explained

The Pro-Active AML Patient Toolkit

 What Causes a Gene Mutation?

What Causes a Gene Mutation?

Transcript:

Dr. Pinkal Desai:         

So the reason that genetic testing is important and the patient should go through genetic testing after a diagnosis of AML, there are several reasons, actually, and we’ll go one by one. But before I go there, I want to clarify that genetic testing in AML does not mean that we’re testing for whether the patient inherits this mutation or genetic abnormality.

This is actually a mutation or genetic damage in the leukemia cells and not in the patient’s body elsewhere, so it’s important; this is a tumor-defining test and not meant to actually figure out whether this is inherited or not because most AML is actually not inherited. The other part that I want to focus on is that this testing, genetic testing or molecular testing or molecular profiling of leukemia, as we call it, is different than cytogenetics. Sometimes patients can be a little bit confused between what is molecular profiling and what is cytogenetics. Cytogenetics are big DNA or big changes in the chromosomes, while molecular mutations are single point gene mutations, which requires a much more detailed analysis of the leukemia cells.

The reasons that this testing is important, and the other part of it is that it’s just not after; it’s actually during the whole process of diagnosis of AML. If AML is suspected, then it should be done on the diagnosis bone marrow at the time when we’re drawing the blood. Otherwise, many times patients have to repeat a bone marrow biopsy to get this testing. So if something is already suspected that we are gonna maybe find leukemia, this should be done at the time of diagnosis. The first reason, which is the most important, is that when we do this molecular testing there’s a set of genes that we test. It’s 200s, 300s; every panel is a little bit different, but generally have the best components that we care about in the AML diagnosis.

There are targeted treatments against some of these mutations, and it’s important to know these mutations before the treatment begins. Not all mutations will change the way the treatment is designed, but there are certain mutations like FLT3, IDH, where it might matter as to what you choose as the frontline or the first line treatment, so it’s important that we actually get these results, at least some of these results, by the time we decide to choose the right treatment for the patient.

The second reason this is relevant is when patients go through AML induction or the first line treatment, the goal of which is induce remission, once they are in remission, the work is not done. There are several other things that we have to do and more treatments that are designed based on this molecular testing.

For example, depending on the molecular testing and the cytogenetics or the chromosomes, we profile patients as low risk, intermediate risk, or high risk. This risk means what is the likelihood that this leukemia will come back in the future, and how would that impact the patient’s survival? Some of the post-remission treatments are designed to change depending on the results of these mutations, so it’s important to actually know this at diagnosis because then the patients would go into remission, and yet we have to make a decision on what kind of best treatment to give post-remission in order to make sure that the patient is cured, or we maximize the chance of cure in this patient.

So the kind of chemotherapy, whether to transplant or not transplant, all of this is dependent on the molecular mutations. The third reason, which is becoming more and more relevant now in AML, is some of these mutations can be monitored over time.  

 It’s a much detailed testing to know the kind of remission or the extent of remission that they patient achieves, and you can actually follow these mutations over time, even in remission, to know that – is the molecular mutation zero, is it 0.2%? This is a very upcoming field in AML, and the idea of monitoring these mutations is relevant because if you have a mutation, can you do something about it post-remission? Would that alter some of the treatments? Would that help us anticipate if a relapse is coming before the actual clinical relapse happens and the blood counts go abnormal? Can we anticipate is this patient likely to relapse, for example, six months later, and could you prevent these relapses?

These are all the reasons why these genetic testing or molecular profiling of leukemia is highly relevant in the field of leukemia. We all cannot even make a decision anymore without having this full panel. 

Putting the Human Back in Healthcare

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I recently listened to one of my favorite podcasts, “What Should I Read Next.” The premise of the podcast is the host, Anne Bogel, chats with a guest about their reading life, including three books they love, one book they don’t, and what they’re currently reading. In a recent episode, she spoke with a physician who was about to retire. She said that she had been trying to read more books with different genres, as her main focus for the majority of her life and education had been science-based texts. She grew up in the library reading a variety of books and still tries to educate herself by going to lectures and author talks. However, she was looking for more books that focused on the humanities. HUMAN. Which got me thinking about my background in health communication and my passion for health literacy. I know that one of the many reasons that doctors go into the medical field is because they want to help people. They have a strong sense of empathy and the passion to care for others. However, throughout all of the scientific jargon that they retain and medical knowledge that they gain, they may lose the ability to connect one on one with the patient, to really understand what’s going on behind the aches and pains. Plus, office visits with patients are getting shorter. Doctors don’t have the time to really understand what is going on with the patient before they try and get them in and out to move on to the next. They feel rushed, and as a result, the patient can walk out not knowing what happened. According to the Agency for Health Care Research and Quality, a division of the U.S. Department of Health and Human Services, poor communication can have a detrimental effect on people’s health. For example, patients may not comply with doctors’ orders because of a lack of understanding. It can also hurt medical practices as patients have the option to leave doctors who they feel do not communicate well and therefore, a lack of trust develops.1

So how can we fix this? Can we emerge communication education into the medical curriculum, including required continuing medical education? Can we focus on the human connection that led these doctors to practice medicine in the first place?

Here are a few suggestions for physicians:

  • Pay attention to the patient though active listening. Repeat back to them what they’re saying to develop an understanding.
  • Use lay-friendly language. Patients come in because they feel sick, something is wrong. Being bogged down with medical jargon isn’t going to help.
  • Use the teach-back method. Have the patient repeat back what you told them.
  • Use pictures of graphics to explain complex concepts.
  • Talk to them about other aspects of their life. It’s not just an illness you’re treating, but a patient with a life outside of the doctor’s office.
  • Show that you have the time to listen even if time is short. Patients know when they’re being rushed.

What do you as a patient want from your doctor? What do you feel is lacking in the patient-physician relationship?

Sources:

  1. https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6gtraining.html

AML Genetic Testing Explained

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AML Genetic Testing Explained from Patient Empowerment Network on Vimeo.

 Acute myeloid leukemia, or AML, has many subtypes and understanding your individual disease is key to accessing personalized therapy. Learn about the role that genetic testing plays in guiding your AML treatment options in this explanatory video. Want to Learn More? Download Your AML Navigator Resource Guide, here. 

More From INSIST! AML

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Key Genetic Testing after an AML Diagnosis

Transcript:

Acute myeloid leukemia, or AML, is a complex cancer that begins in the bone marrow.

Not all AML patients have the same disease. AML has many subtypes and understanding YOUR individual disease and subtype is key to accessing personalized therapy.

How can you learn more about your AML?

Genetic tests can provide more detail about your specific AML

These tests use laboratory approaches to identify changes in chromosomes, genes or proteins. A gene mutation is an abnormal change in a gene’s DNA sequence.

The results of genetic tests can inform your prognosis and treatment options.

The types of genetic tests that physicians use for patients with AML include:

  • Cytogenetic Analysis (or Karyotyping)
  • Fluorescence in situ Hybridization also known as a FISH test
  • Molecular Testing, which includes:
    • Polymerase chain reaction – PCR for short
    • DNA sequencing;
    • and Next-generation sequencing

Your healthcare team can help decide which test is best for you.

Genetic test results are used to identify genetic mutations that determine your specific AML subtype and help your healthcare team to better understand your prognosis, treatment path and assess how well therapy is working.

Once you have your results, there a number of targeted therapies currently available for AML.

Targeted therapies block the growth of cancer by interfering with specific molecules involved in the progression and spread of cancer. 

Targeted therapies include a class of treatment called “Inhibitors.”   AML Inhibitor therapies that target a genetic mutation include FLT3 Inhibitors and IDH Inhibitors.

Novel inhibitor therapies that are used across all mutational subtypes of AML include BCL-2 inhibitors and hedgehog inhibitors

Research is moving quickly in this field as new treatments are being studied to target genetic mutations in AML and other diseases.

How can you take action?

First, make sure you seek the opinion of an AML specialist. Discuss which tests you should undergo and review the results with your doctor. Educate yourself by doing some of your own research on the findings then collaborate with your healthcare team to determine a personalized treatment plan for your AML.  Finally, follow-up with your doctor regularly to understand when you should be re-tested.

Want to learn more? Start here.

AML Symptoms at Diagnosis

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Dr. Daniel Pollyea reviews the criteria for an acute myeloid leukemia (AML) diagnosis, including symptoms such as fatigue, rash and anemia, and goes on to address the importance of seeking treatment quickly following a confirmed diagnosis.

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 Fact or Fiction?

Related Resources

Why Should You Become Educated about Your AML?

Why Should You Become Educated about Your AML?

Fact or Fiction? AML Resource Guide

What Would You Do? Advice From An AML Expert

 

Transcript:

Ross:

How easy is it to diagnose AML?

Dr. Pollyea:           

Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.

So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.

In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.

Ross:

This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?

Dr. Pollyea:                 

Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.

So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.

Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.

Ross:

You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?

Dr. Pollyea: 

That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.

Ross:                          

How important is early diagnosis?

Dr. Pollyea:                 

Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.

I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.

So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.

AML Causes and Risk Factors

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Dr. Daniel Pollyea provides an explanation of acute myeloid leukemia (AML)  causes and risk factors and addresses the rumored associations to weed killer, X-rays and benzene.

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 Fact or Fiction?

Related Resources

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Swiftly

Second Opinions in AML: The Importance of Moving Swiftly

 

Transcript:

Ross:

Dr. Pollyea, let’s start out with the basics. What are the causes of AML?

Dr. Pollyea:    

So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.

And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.

And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.

And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.

Ross:                                          

What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?

Dr. Pollyea:                           

Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.

So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.

We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.

Ross:                                          

Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?

Dr. Pollyea:                           

So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.

So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.

So, that’s the challenging balance.

Ross:                                          

Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?

Dr. Pollyea:                           

I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.

We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.

So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.

I know that’s not a satisfying answer, but at the moment that’s the best answer we have.

Ross:                                          

And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML. 

Dr. Pollyea:                           

Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.

But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.

We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.

Ross:                                          

Autoimmune diseases, such as arthritis, can they increase the risk of AML?

Dr. Pollyea:                           

Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.

It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.

But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.

Ross:                                          

Is formaldehyde exposure another risk factor for AML?

Dr. Pollyea:                           

Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.               

Ross:                                          

What’s the difference between a risk factor for AML and a cause of AML?

Dr. Pollyea

Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.

Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determination.

How to Read and Understand Scientific Research #patientchat Highlights

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Last week, we hosted an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice

Understanding Scientific Research Is Critical

Science should be accessible to all

“The whole of science is nothing more than a refinement of everyday thinking”

Full Chat

Diagnosed with Myeloma? An Advocate’s Key Advice

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Diagnosed with Myeloma? An Advocate’s Key Advice from Patient Empowerment Network on Vimeo.

Where do you start after being diagnosed with a myeloma? Myeloma survivor and advocate, Jack Aiello, shares key advice on second opinions, keeping up with lab tests, and educating yourself about your myeloma.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Jack:

So, I’m often contacted by either newly diagnosed patients or a friend of a newly diagnosed patient and asked to – by that patient, what should they be doing.

And I usually give several pieces of information. One is, as I previously mentioned, getting second opinions are important, but I’ll also talk about how important it is to understand your lab values. It’s not so important what a particular number is that month, but what is important is the tracking or trend of those lab numbers. You should be asking your doctors what myeloma markers are they looking at to determine if a treatment is working or not. You can become familiar with those markers as well and track them yourself.

There’s some tools out there; you can also just put them in a spreadsheet if you like. But it’s a good way to kind of stay on top of your own myeloma; it’s also helpful, if you do ever want to get a second opinion, to be able to share that information with others.

And I think that when talking with that newly diagnosed patient as well, I think it’s important to remind them that – there has been so much progress forward; they will hear that the good news is there are many, many more treatments out there for myeloma, certainly than when I was diagnosed 24 years ago.

But the negative side of that is, there are certainly many, many more treatments out there than when I was diagnosed 24 years ago, but you don’t necessarily know what the best treatment is for you. So, that goes back, again, to working closely with your oncologist, working with that second-opinion doctor, understanding your numbers, understanding what your myeloma stage was and maybe what your risk factors are that you can learn from myeloma tests that are being taken, and try to get as full

Expert Advice for Newly Diagnosed CLL Patients

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Expert Advice for Newly Diagnosed CLL Patients from Patient Empowerment Network on Vimeo.

Dr. Danielle Brander provides her expert advice for newly diagnosed chronic lymphocytic leukemia (CLL) patients and outlines key steps for staying informed and engaged in care decisions. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

See More From The Pro-Active CLL Patient Toolkit

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Essential Lab Tests for CLL Patients

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CLL Genetic Tests: How Do Results Impact Treatment and Care

 

Transcript:

Dr. Brander:

For patients newly diagnosed with CLL, I think there are a couple important first steps to take. First is recognizing that this is a long journey, meaning from the time of diagnosis potentially being monitored until requiring therapy, or maybe being a patient that doesn’t ever need treatment, or has to switch amongst different treatment options either due to response or due to a problem tolerating the therapy, is just recognizing that in this long journey it’s also going to be a long time for self-education of yourself, your family, and your caregivers.

And recognizing that at the time of your first appointment with your oncologist, that it’s okay to feel overwhelmed with the information, and just recognize to take the education that you can in pieces, and it’s okay to ask the same questions each time because your understanding is going to evolve with time. There’s only so much information any of us can understand when we’re first hit especially with news and told of leukemia, or even just in trying to understand why patients don’t necessarily need treatment.

It’s somewhat intuitive to all of us to feel like if you find something wrong, especially a leukemia, to want to treat it right away. But I tell patients an important first step is understanding that it is doing something by not doing something if you don’t need to. There’s been a lot of studies over the years showing no benefit to early treatment, and also some side effects, and also that some patients might never require therapy.

So that’s an important first step is understanding that move and that it’s okay to ask the same questions each time. Remind me what we’re looking for if I need therapy, etc.

Also, again, in today’s world, there are a lot of online resources. But one important recognition I would say, is finding the right one. Your treatment team can help guide that. There are also CLL communities that can help guide it to resources that are kept up to date. For example, as I mentioned, there are a lot of new drugs for treatment of CLL, so if you stumble upon research even from three, four, five years ago, that might not adequately reflect out patients do today and all the options that patients have today.

At the time of the first visit, it’s always good to go with a couple of questions in terms of the CLL, particularly if you’re meeting the oncologist for the first time if the testing to diagnose was done by someone other than your oncologist.

You might have had time to think about the questions, but if you’re going and hearing about the diagnosis for the first time, ask for a short follow-up to come back with questions. Because as you go home and process and talk with your family, other questions may come up.

The other important thing I tell patients as a first step is when you’re making the list of questions, try to do it ahead of time, and try to bring someone to be your ears for the appointment, and to take notes, because it’s very easy in the moment to forget everything that’s being said or what questions you might want to ask.

But also prioritize your questions, because what might seem like a short, easy, first question might be a longer discussion, might lead to other questions, and you wanna make sure you prioritize since time is limited, and understanding too much information at once is limited, that you know when you go in what your most important first questions would be.

And then lastly I would say if you’re talking with your team, it’s okay to ask if you want more information or even to understand about research opportunities. If there’s an either blood cancer expert or CLL or lymphoma expert clinic nearby where you might be able to go and get additional information, particularly if you’re thinking about treatment or trial options for you, that doesn’t mean that when you’re seeking out some of those centers that it’s changing who your core care team would be. Those visits can just sometimes be an extra step to help you understand either around the time of diagnosis or just hear in a different way in terms of treatment and trial options. 

 

What Causes a Gene Mutation?

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Dr. Daniel Pollyea, an acute myeloid leukemia (AML) expert, describes gene mutations and potential reasons as to why they may occur.

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 Fact or Fiction?

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Fact or Fiction? AML Resource Guide

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

 

Transcript:

Ross:                          

You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML? 

Dr. Pollyea:                 

That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.

And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”

These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.