PEN Blog Archives

The Power of Journaling During Cancer Treatment

There are two ways to fight cancer, both of which are equally as important. The first is physical and the second mental. Journaling might not be able to help with the physical symptoms, but easing the mind can truly help in such situations.

By providing a safe place to store your thoughts and experiences, you will be able to find a great source of power. If you have never thought about journaling before, this might be the perfect time for you to give it a try. Here are some important reasons why this might be a very great decision.

1. Keeping track of all important moments

Some people believe that battling cancer is only filled with negative moments and experiences. While that is true to a big extent, there can be plenty of memorable moments that you might want to keep track of. The beginning of your treatments is a moment that you can write about and think about when this situation is over.

Other important moments might include family gatherings, important presents you might receive, very bad and very good days that stand out in your treatment course. Just because a day way difficult doesn’t mean it should be considered bad. At the end of this difficult journey, you will be able to look back at everything you wrote and remember the good and bad times.

2. Helping ease certain symptoms

Another great reason why journaling can truly help cancer patients during their treatments is because of symptom management. Research has actually shown that journaling can help with combating symptoms and dealing with the physical size of things.

Writing about how you feel and what you are going through can help you sleep better and feel more energetic. Getting plenty of rest will allow you to feel less nauseous, be in a better mood and battle everything with a stronger will. The more you face your symptoms, the stronger you will feel through your treatment.

3. Fighting against the stress

The stress that can be caused by such a difficult diagnosis is great and can truly affect your mood and outlook on life. Being under stress can make you feel tired, mess up your sleeping schedule and make you feel more negative about everything. This is not ideal for any situation you are in in your life and there are ways to overcome it.

Journaling can provide you with a safe space to write everything you have in your mind. During your treatments, you will possibly want to appear strong in front of your family and you might not want to share everything you feel. You can write all your thoughts in your journal and let everything out. This way you will be able to handle everything you face and feel a lot less stressed.

4. Reminding yourself of things you love

When dealing with any hardship in life, it is important to keep thinking of things that bring you joy. Journaling has helped me create a notebook full of memories, which I can go through any time I need some positivity in my life. You don’t only have to put words into it but anything and everything that makes you think of memories and people you hold dear.

In your journal you can keep stickers, receipts, drawings and cards from loved ones. Then you can write how receiving these things made you felt. When the days get difficult and you are struggling, open your journal again. Read through everything nice you have collected and it can help you remember all the reasons why this difficult process is worth it.

5. Seeing all the progress you have made

Last but not least, another important reason why journaling is so helpful during cancer treatment is that it can help keep track of your progress. There are going to be many days that will be hard and many that will be good and filled with hope. In order to be able to go through both, it is important that you keep track of everything new that happens in your journey.

The good days will help you remember that things will get better. The difficult days will allow you to live in the moment and work on staying positive. Journaling this experience can also help your family better understand what goes on in your head and how they can help. After you have successfully put this difficult period of your life behind, you can even share your story with other patients through your journal.

Battling cancer every way possible

Journaling is a creative and fun activity that can help you deal with certain symptoms and negative thoughts during your treatment. Even if you have little experience with writing, journaling gives you the chance to get creative. You don’t need any special skills in order to journal. You just need a notebook, some fun colors and a few thoughts in your head.

Through writing about your experiences, you will be able to express how you feel and let everything run its course. This treatment course might be tough, but writing everything down will help you see just how much progress you are making. This can truly help you feel stronger mentally and physically and overcome this situation like a true warrior!

Breast Cancer Awareness Month and Its Many Shades of Pink (and Blue)

We are more than half-way through Breast Cancer Awareness Month (BCAM) – impossible to miss given the pink ribbon avalanche that arrives each Fall.  While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

“BCAM is a 2-sided coin in our community,” states Jean Rowe, Director of Support and Provider Engagement at The Young Survival Coalition. On the one hand, she explains, celebrating successful treatment outcomes and raising awareness is important, but “on the other side, expectations that come with the pink ribbon in October can be overwhelming, isolating, infuriating and bewildering.” 

The pink ribbon, so long a symbol of breast cancer awareness and support, has become for many a symbol of what’s missing from the BCAM narrative.  When I first pinned a pink ribbon on myself,  I was newly diagnosed with breast cancer. Back then, I felt that wearing a ribbon was a symbol of solidarity, and I wore it proudly. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on the other side of cancer I see a broader picture, a richer landscape of many shades beyond pink.

A Whiter Shade of Breast Cancer

For Siobhan Freeney breast cancer is not pink. “When I see pink I’m reminded of all things feminine, “ she says. “My delayed breast cancer diagnosis resulted in a mastectomy. There’s nothing feminine or pink about that. I see breast cancer as the elusive ‘snowball in a snowstorm’ because my breast cancer, all seven centimeters of it, was missed on consecutive mammogram screenings. I know now that I had extremely dense breasts, this caused a masking effect – white on white.”

Breast Cancer Shaded Blue

Much of the criticism of BCAM centers on breast cancer campaigns which over-sexualize the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialization and sexualization of the disease by the pink charities reinforces public awareness that breast cancer is gender specific.  Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis.” 

Ritchie suggests “adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity. Reminding the community that this is a genderless disease will give us a chance to receive an early diagnosis and therefore a better prognosis. We deserve equality.”

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC, also called stage 4, secondary breast cancer (SBC) or advanced breast cancer) from online blogs and social media networks was revelatory for me. As Lisa de Ferrari points out, “although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. “Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. There has been little focus on secondary breast cancer and the only day for awareness is 13th October,“ points out Jo Taylor. “Awareness of SBC needs to be across the whole month.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

How To Honor All Sides of the BCAM Coin

This article is not meant in any way as a criticism of those for whom wearing a pink ribbon is  meaningful. I  am grateful that the original pink ribbon movement has brought breast cancer out of the dark ages when it was taboo to even mention the words “breast cancer” aloud.  However, time has moved on, and it is time to challenge the singular narrative of breast cancer as a female only disease wrapped up prettily in a pink ribbon. 

So to quote, Gayle A. Sulik, a medical sociologist, and author of Pink Ribbon Blues,  “this is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public.”

It’s important to honor your feelings and emotions at this time. If you want to celebrate BCAM, celebrate; if you want to sit out this month or use it as an opportunity to educate others in a different way, then do that. In the words of Rowe, “Everyone gets to experience BCAM the way in which they need and want to.”

However, I will add to this that whichever way you choose to honor this month, be more questioning. As MBC patient advocate Abigail Johnston says, “ask if the pink ribbon represents the community you are trying to reach before using it automatically. Be open to understanding that not everyone identifies with the same images and concepts.”

Perhaps consider wearing the more inclusive green and teal ribbon designed by METAvivor. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. “Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.”

Also use this month as an opportunity to broaden your understanding of breast cancer awareness. In the words of Terri Coutee, founder of DiepCFoundation,  “Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.”

Above all, don’t let breast cancer awareness in all its many shades be for one month alone. “When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often, “ says Terri. “ Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.”

On Board with PEN

Patient Empowerment Network is excited to announce the addition of three new members to our diverse and talented board of directors.

Asalia Goldberg is a passionate patient advocate. She works in healthcare management with Boston Consulting Group (BCG) and has quite a bit of experience working with Fortune 500 companies in the biopharmaceutical industry where she has helped launch innovative therapies for oncology, rare disease, and heart disease. She has served as associate director of the non-profit Lymphoma Research Foundation and has been involved with Red Cross and Save the Children. She believes passionately in health equity and eliminating the disparities in healthcare through advocacy for patient education and empowerment.

Alyssa Gutjahr is a cyber security expert and brings a great deal of digital knowledge to the board. She has worked as a software development consultant for IBM and was a product manager for CNBC Digital. Currently she is a program director at NBCUniversal where she manages cyber security programs for the company. She is also active in a community outreach program that connects professional women in her company with young women in the community, hoping to inspire interest in science, technology, engineering, and math (STEM) careers.

Ray Parisi brings a wide array of skills and experience to the board. During his career he has been a financial analyst, a journalist, and a communications manager. He led corporate marketing and communications teams for big-name corporations Freddie Mac and AstraZeneca, helping to navigate the companies through challenging situations that included federal investigations for Freddie Mac, and corporate restructuring for AstraZeneca. He has also served on boards for Ronald McDonald House of Delaware and the AstraZeneca Healthcare Foundation. Currently, he is president of RJP communications LLC, where he specializes in public affairs and client communications.

The PEN board is made up of entrepreneurial-minded professionals who have a desire to support our mission to provide patients and their care partners with the resources they need to ensure the best possible path during their cancer journey and beyond. “The broad-ranging experiences of our board members truly serve our mission at PEN. Our members provide invaluable expertise that not only furthers our programs for patients and care partners, but also serves to ensure that our organization operates on firm ground and with sound business practices,” says PEN Executive Director Andrea Conners. “The addition of new board members exponentially increases our opportunities for success, and we are delighted to welcome them to our team.”

More information about all ten members of the PEN board can be found here.

How a Second Opinion Saved a Myeloma Patient’s Life

How a Second Opinion Saved a Myeloma Patient’s Life from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Judith shares her personal journey of empowerment in this Patient Empowerment Network program.

Watch as she explains how seeking a second opinion after her diagnosis changed the path of her treatment and life with multiple myeloma.

Judith’s advice: “Don’t be afraid to get a second opinion or even a third opinion. Getting a second opinion saved my life.”

See More From the Diverse Partners in Your Myeloma Care Program

Related Resources:

How Can I Get the Best Myeloma Care No Matter Where I Live

A Multiple Myeloma Advocate’s Uphill Battle to Care

Why Myeloma Patients Should Speak Up: Advice From a Nurse Practitioner

 

#patientchat Highlights Open Mic

Last week we hosted an “Open Mic” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Burnout is Real

“We already have the power”

Shining a Light on Passionate Causes


Full Transcript

The Power of the PEN Network Manager Program

I never dreamed of being a patient advocate, but then again, I never dreamed of receiving a cancer diagnosis, either. When I was diagnosed with thyroid cancer in January 2017, I didn’t have any symptoms. I was told I had the “good” cancer or “the cancer to get if you had to be diagnosed with one” by my doctors. I took this information to heart, and accepted that cancer was now a part of my life, and there wasn’t anything I could do about it.

It wasn’t until I ended my treatment, when I declared myself a survivor, that I realized I was completely wrong. I recognized there were choices I could have made regarding my treatment plan and there were still opportunities to take charge in how I was treated as a patient. Enter patient advocacy in the cancer world.

Everyone has a story, no patient or cancer is the same. We each have our own unique experience of how we move through the healthcare system beginning the day we’re diagnosed with the “C” word. I knew my story was unique because I was an AYA patient, or an adolescent and young adult, I was working full-time, and I was in graduate school. I dreamt of being published on places other than social media. I wanted an outlet where I was free to share my side of the story without having to hold back. A place where I could share not only the ups and downs of my journey, but my own insights of what it was like to be a young cancer patient. A place where I could advocate for other thyroid cancer patients – let them know what to expect, the questions they should ask of their care team, and how to best take care of themselves. Enter the Patient Empowerment Network.

Patient Empowerment Network (PEN) is an advocacy organization for cancer patients whose “mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them with receiving the best, most personalized care available.” I discovered them through one of their tweet chats on Twitter using the hashtag #patientchat. I immediately reached out to see how I could get involved. Leadership discussed their strategic vision of having “managers” for different cancers that would create and curate content to educate other cancer patients and help them feel empowered. I was honored when I was told that I would pilot this program as the Thyroid Cancer Network Manager, and my content would be read and shared by others.

The PEN Network Manager program officially launched in March 2020 with the goal “to support health communities around important topics and provide navigation for the path to empowerment. Through various mediums, social media platforms and content formats, network managers develop specific messages, seek out resources and contribute to amplifying the needs of specific health communities via guidance of an established editorial calendar.” For example, I’ve had the opportunity to write a variety of blog posts and participate in tweet chats on a number of different topics, including resilience, health literacy, telehealth, and what it’s like to be an adolescent and young adult (AYA) with cancer. It has been my greatest privilege to connect with other patients through this content, inspiring them to be their own advocate.

To find PEN’s current team of network managers, visit https://powerfulpatients.org/about/#networkmanagers. Clicking on each person’s picture will bring you to their bio as well as content they have created, including recipe guides, interviews, comedy sketches, infographics, and more. Note also that each manager has a personal PEN email that you can use to contact them. PEN managers thrive on encouraging patients and their caregivers to feel more confident in voicing concerns and communicating with their healthcare team, and ultimately empower them to become advocates for themselves and their loved ones.

Joining PEN’s network of cancer managers has truly been inspiring. Although we’re all across the world, conversing with them via email and Zoom chats and hearing their stories and thoughts of how to resonate with more patients is what feeds my soul. PEN is constantly growing, with their goal of representing all cancers. For more information on how you can get involved, please contact Nykema, PEN’s Network Manager Coordinator, at kema@powerfulpatients.org.


As a caregiver and Care Partner Network Manager with PEN, I constantly search for practical information to use and pass along to those I support. I offer support by listening and providing solutions to empower caregivers to improve their resilience. – Sherea


 

Patient Empowerment Revisited: Part 2

Welcome back to the second part of this discussion on patient empowerment. In Part 1 we looked at self-advocacy and the importance of having access to information which allows us to take a more active role in our care. We also looked at how a team-based, partnership approach to care – one in which the patient is respected as a person – facilitates a more empowering environment. 

In Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use. Finally, we’ll conclude with some thoughts on the need for systemic change and a shared vision to embed new solutions into healthcare systems and pathways.

Theme 5. Peer to peer empowerment

“Engagement with your community, bolsters our confidence with good information.” – Britt (@mewhinney). 

Information, knowledge and the confidence to become a more active participant in our care also develops from engagement with other patients.  As Conor describes it, “I find being part of patient groups empowering for so many things, including where to find information, other peoples experiences and above all, chatting with others who just understand.” 

Piarella Peralta de Wesseling (@piarellaperalta), Patient Advocacy Lead at Diaceutics, is unequivocal in her belief in the collective wisdom and power of patient communities. “It is not clinicians nor industry nor government who have empowered me as greatly as the community of empowered individuals themselves,” she says. “No one has greater urgency to get it right, to evaluate and decide what best fits our lives than us facing the very challenges of the disease. People come to me and my fellow patient advocates to ask very simple questions that in the end just have two purposes, feeling heard, share in the knowledge of the devastating news that they have learned they have cancer, be in solidarity and then to know how they can make the best decisions relevant to them.”

Theme 6. Is ‘empowerment’ the right term to use?

When crowdsourcing these comments, I received some push-back on the use of the term ‘empowerment.’  To quote Piarella, the term itself “creates a sense of power differential and that is perhaps intuitively contradictory to the notion that each human has a right to be autonomous and self-determined.”

Kristie Konsoer (@kkbadger1) agrees. “For me, empowerment means taking action/speaking up so I feel like I’m participating in and influencing my health care,” she explains. “I empower myself. Empowerment comes from within. An authority can’t give it to me, but we can work together toward the same goals.”

Here are some more quotes expressing similar viewpoints. 

“For what it’s worth I think patient empowerment is lacking. It implies patients need authority given to them by another. Patient rights seem more fitting. Patients have rights, and doctors and healthcare providers must ensure those are not infringed but are guaranteed.” Mark Samber (@MarkMyWords67).

“I cringe at the term! Despite its well-meaning origins, it’s a conversation stopper within our hierarchy of medicine.” – Carolyn Thomas (@heartsisters).

“Empowerment is a convenient shorthand that smacks of condescension, as if someone is deigning to award me some of their power when I presumably have little or none. How about respecting patients and taking our input seriously. We can strengthen our own power by exercising it.” – Nancy Seibel (@nancylseibel).

“Like everything, thoughts on this evolve. #Patientsinvolved means patients can be as passive or pro-active as they like, but it also means they are heard and asked about their thoughts and needs. Empowerment perhaps is self-empowerment. Not that patients are ‘given power’?” Sharon Thompson (@sharontwriter).

“I think patients like to ‘feel’ empowered, because the word connotes being engaged, participatory and pro-active. At the same time it can be overused, although when people say they’re empowered by ‘xyz’, there’s ‘power’ in that.” – Cathy Leman (@dammadbrstcancr).

“Patient empowerment is a concept I believe in, but as a patient activist, I find the term somewhat passive. I’m also concerned that power is not something men diagnosed with breast cancer feel they have. Faced with a labyrinth of medical institutions and pink charities geared towards dealing with this predominantly female disease, those of us in the one percent cohort feel virtually powerless.” – Rod Ritchie (@malefitness).

“Not a big fan of the term because what exactly does it even mean? Empowered vs powerless, or what? Also, what empowers each of us varies so much as we are all unique. It’s another trendy buzz word. But if it works for some, that’s fine too.” – Nancy Stordahl (@nancyspoint).

“I use the word ‘empower’ in my mission statement but only believe it is worthy of a mission statement or used anytime when ACTION is taken. A word is empty without the tools/resources to use it.” – Terri Coutee (@6state).

Theme 7. Empowerment requires a systemic approach

The final theme centered around the need for a systemic shift in how patients are treated in the healthcare system.  As Julia (@bccww) put it, “empowerment would be health care services being appropriately funded and accessible to enable those with serious/long term chronic conditions to live well. It’s about being enabled (for me) to manage my long term health conditions, live well with them but with access to support and/or treatment (if I need it) to keep on course.”

Elizabeth Nade (@elizabethnade11), who prefers the term “patient activism”, points out, “I am already empowered. I am seeking change to the current healthcare model because it is insensitive and unresponsive to the needs of patients and their families. I want to challenge the relationship to affect change.”

Similarly, Patty Spears (@paspeers88), emphasises the need for systemic change. “I don’t like the term and how it’s usually used. Even unempowered patients need good quality care, not just empowered patients.  Rather let’s ensure equal and high quality care for ALL patients. Putting the burden on the patient (to be empowered) is a bad idea in my book.”

Cardiologist, David Lee Scher MD (@dlschermd), adds the physician voice to the discussion. “Education, awareness and tools are what is needed for patients to self-manage chronic diseases and navigate the healthcare system,” he says. “What you call it doesn’t matter. Labels and phrases (engagement, etc) in healthcare have yet to translate to better care.”

A Shared Vision

To conclude this discussion, I’m turning to Liz Ashall Payne (LizAshallPayne), CEO and Co-Founder @OrchaHealth, a passionate advocate for healthcare  transformation through digital and mhealth.  I  really like what she has to say about working together on a shared vision that puts the patient at the center of the entire healthcare ecosystem. 

“To truly support ‘patient empowerment’ we have to think far broader than the patient, we must also make sure we are empowering those that sit around the patient. 

We need to empower Health Care systems to be incentivised to support this vital work.

We must educate and empower our health care workforce to know how to empower patients 

We must support innovators to know what patients’ needs are, and how to embed new solutions into healthcare systems and pathways.

Above all we must COLLABORATE with a shared vision. 

The current COVID crisis has really brought the whole system together to drive digital uptake amongst our patients and populations, but we are not finished, we must do more, and there has never been a better time to do so.”

The Distance Learning Climate and Its Impact on Mental Health

A little over a week has passed since the beginning of fall for some Virginia school districts. We follow up with Nicole, a mathematics educator of 39 years, to get feedback on her progress with distance learning. She shares her strategic implementations and what she expects from this new learning climate in the days to come. Furthermore, she discusses the emotional and mental impact distance learning has on her students as well as herself. Our conversation brought more awareness to the overall effects of the pandemic, extending beyond technology and into the realm of mental health. 

I sat down with Nicole to ask her about the different aspects of her distance learning experience so far.

“I’ve been able to keep my students engaged”, Nicole says as she describes her virtual experiences so far in high spirits. In previous weeks, educators within her school district were intensely training on their new learning management system, Canvas, and effectively using Zoom to present lessons to their students. While this training was a huge learning curve for this more seasoned educator, she has been able to overcome obstacles by collaborating with other educators in help groups. She has witnessed progression in navigating the new systems from both students and herself so far. 

A Week’s Worth of Progress

How has adapting to the new distance learning systems been for yourself and your students? 

“It was a bit difficult adapting to Canvas and Zoom initially, however, there is enough support to get help when needed. Teachers have access to the student view so they are able to assist them with navigating. Canvas is used to house class learning materials and Zoom is used to present the lessons. Students have had issues with joining the correct Zoom class so teachers have been informed to provide the direct class link for students.”

Math is a difficult subject for many students, including myself at one point, how have your students worked through the problems?

“Because we haven’t got into the content just yet I can’t really answer this question. However, right now I’m just focusing on “get to know me” activities with the students to get an idea of their areas of difficulty and building their trust with me as their teacher. I do foresee students having difficulties when we get into translating algebraic expressions, but we’ll work through it.”

So far so good for this Virginia school teacher and her students. Now it is a matter of determining and setting the expectations for the coming days.

Framework for the Coming Days

Where is the bar being set? The plan for educators, like Nicole, should now be developing the framework for the rest of the semester and sustaining engagement. What will this look like? How will educators and students ensure the level of engagement is high? 

What are your expectations for your classes from here on out?

“In the coming weeks we will be getting into the math content. I expect my classes to run the same as if we were in person. I expect my students to work through problems with me, so it is important that I engage them and encourage them to talk to me via Zoom.”

Do you have tips for other educators for maintaining engagement in the virtual sessions?

“Think like a kid. Think about what the student enjoys. Draw from the student’s interests and their learning style so that everyday they are glad they came.”

Do you think more training will be required as you all progress through the semester such as training to improve the virtual structure of the classes?

“Oh yeah! Most definitely! In fact, we have mandatory and voluntary training on Wednesdays where teachers can receive additional information and help in these areas. This will occur throughout the school year.”

Balancing Distance Learning with Life

I anticipate the rest of the semester to be a learning curve for educators and students not only in the classroom, but mentally and emotionally as well. According to Loades et al (2020), adolescents have reportedly experienced high levels of loneliness (Loades et al, 2020).There is a strong possibility that the isolation conditions due to COVID could lead to an increase in mental health issues of this group. This issue could be more apparent in children during their development stage. Educators and students have been placed in unfamiliar learning environments requiring much adjusting. Even with the semester just starting, Nicole has observed some impacts on the mental and emotional state of students. 

What effects do you see distance learning and social isolation having on students’ mental and emotional health?

“Students want to be with their friends; however, they must understand that we are in a pandemic and it’s something that we have not experienced before. They are not able to make those physical connections and build relationships as they would face-to-face. I think it can make some students feel a bit lonely and give them anxiety about getting back into the classroom.” 

It is even more important now to pay close attention to students’ mental health. The risks of developing mental health issues is much higher in adolescents compared to adults (Loades et al, 2020). COVID serves as a major influencing factor for increasing these risks. Loneliness and isolation also influence the chances of suicide caused by internalizing childhood events. 

What about the students that may not have a stable home? What effects can the virtual experience have on them?

“Some of these students may be crying out for help because they are in an unstable environment. Therefore, I want to see their faces to get an idea of how they act so that I can gauge when something is off. Building that trust with them to give them a comfortable space to express how they feel and when help is needed. The advantage my school has is that we have built in resources for struggling families and kids whereas other schools in the district do not have this.”

For many students school is used as a place of refuge and as a source for food. Hunger mostly affects low-income families with approximately 15 million being children (No Kid Hungry, 2020). Luckily, the school district is providing a means for students to receive meals throughout  the day. For many students, there are multiple children in the household which can  cause distractions for other students’ learning. 

What are these resources?

One of the most relevant resources for this instance is our curriculum supported by private funding that provides skills on healthy living, conflict resolution, and ethics. If anytime, now is the perfect time for students to engage in this curriculum to aid in coping with the effects of the pandemic on their livelihoods.”

How are you maintaining a balance for yourself between work and your personal life?

“It is very difficult to maintain balance between school and my own personal life. I am always trying to think of ways to make things better for my students and myself as a teacher. Even now, I’m doing work 5 hours after the school day has actually ended”. 

How is this affecting you emotionally and mentally?

“I feel drained at times because everything has been pushed on us. I don’t have time to do other things because I’m trying to get a handle of the new learning management system and I’m tired. I know it is not always going to be this way, it just takes time to learn something too and carry on with the kids because it is also new to them. Luckily, through the school district, teachers are being given the opportunity of 5 free therapy sessions. If we want to proceed with more sessions with one of the therapists, we can pay using our insurance. For the students, social work services are provided throughout the school district who can assist students with adversities that are affecting them educationally.” 

While Nicole’s distance learning experience has just begun, she shows us what techniques have worked for her and what she foresees down the line. She also considers challenges that extend beyond the technical environment and into the mental livelihood of teacher and student. Only time will continue to shed light on the effects distance and social isolation has on the overall mental health of an individual. Educators and students will forge on with distance learning but nonetheless need reinforcements in place to be successful. Most importantly, we must be cognizant and vigilant of the impact distance learning is having on mental health, especially our youth in vulnerable populations. We will continue to understand this dynamic process in order to cultivate resources that will nurture our academic communities within the precarious climate of distance learning.


Mental Health Resources for Educators, Students and Families

Distance Learning Resources to Support Students’ Mental Health (6-12 Edition) 

NAMI’s Ask the Expert Webinar: Supporting the Emotional Needs of Youth During COVID-19

Keeping Children Healthy Ways to Promote Children’s Wellbeing

Support for Teens & Young Adults

Tools for Educators During a Public Health Crisis

Taking Care of Your Behavioral Health – Tips for Social Distancing, Quarantine, and Isolation During an Infectious Disease Outbreak

References:

Loades, M. E., Chatburn, E., Higson-Sweeney, N., Reynolds, S., Shafran, R., Brigden, A., Linney, C., McManus, M. N., Borwick, C., & Crawley, E. (2020). Rapid Systematic Review: The Impact of Social Isolation and Loneliness on the Mental Health of Children and Adolescents in the Context of COVID-19. Journal of the American Academy of Child and Adolescent Psychiatry, S0890-8567(20)30337-3. Advance online publication. https://doi.org/10.1016/j.jaac.2020.05.009

No Kid Hungry (2020). Facts about child hunger in America. https://www.nokidhungry.org/who-we-are/hunger-facts

September 2020 Notable News

There’s a lot to learn this month. Cancer researchers have been busy as bees developing innovative treatments, creating new diagnostic blood tests, and uncovering new information to protect patients. However, it is actual bees that just may save the day.

Prostate Cancer Awareness

Before we get to the bees, we’d be remiss if we didn’t acknowledge that September is prostate cancer awareness month. Prostate cancer is the second most common cancer in American men and while most men who get prostate cancer won’t die from it, it can be a serious disease. Fortunately, over the summer, the Food and Drug Administration (FDA) approved two drugs to treat patients whose prostate cancer has metastasized or stopped responding to treatment, says cancer.gov. The drugs, olaparib and rucaparib, are targeted therapies taken as pills. The drugs work by blocking the activity of a protein known as PARP and have proven effective in treating advanced cases of prostate cancer and increasing survival rates. You can learn more about the drugs here and here.

Cancer Screenings

Another thing to be aware of this month is that not all cancer screenings are necessary, especially among older adults, reports healthline.com. When you reach a certain age, screenings are no longer recommended. For example, you may not need colorectal screenings after age 75, cervical cancer screenings after age 65, and breast cancer screenings after age 74. Once you have aged out of the recommended timelines, screenings can pose a risk of over-diagnosis, which is when asymptomatic cancer that would have otherwise gone unnoticed and not caused a problem is diagnosed and treated unnecessarily leading to a reduced quality of life with little to no benefit. Researchers found that 73 percent of women were over screened for breast cancer, 45 percent were over screened for cervical cancer and 59 percent of men and 56 percent of women were over screened for colorectal cancer. Older adults should talk to their doctors about whether cancer screenings are right for them. You can read more here.

Of course, when it comes to diagnosing some cancers, such as lung and pancreatic cancer, the more screening the better and researchers are finding new ways to make diagnosis easier. A blood test for lung cancer was developed by Resolution Bioscience and will be offered by LabCorp, according to fiercebiotech.com. The test searches for non-small cell lung cancer and is being studied in an ongoing trial. Learn more about the blood test here.

Cancer Testing and Treatment

Researchers are also using a blood test to check for pancreatic cancer and may have found a way to detect it early when it is treatable, reports technologynetworks.com. Using biological information found in the bloodstream researchers can determine whether the pancreas is healthy or shows signs of cancer. Because symptoms for pancreatic cancer don’t often appear until the disease has progressed it is often detected late and when treatment is less effective. Find more information about this new promising testing here.

If all this testing does result in a cancer diagnosis, it’s encouraging to know that new, more effective treatments are being discovered all the time. Researchers have now found a way to make cancer cells self-destruct, reports phys.org. They have developed a new approach that turns a nanoparticle into what they are calling a Trojan horse. The nanoparticle is coated with an amino acid that cancer cells need to survive and grow. Thanks to the coating, the nanoparticle can get into the cancer cells where it stimulates a reactive molecule that causes the cells to destroy themselves but doesn’t affect the healthy cells. The process has been successful in lab experiments and in reducing tumor growth in mice. Scientists are working to make the process more refined to target specific cancer types. Find out more here.

Honeybee Venom

Finally, here’s what all the buzz is about. It turns out that honeybee venom can be used to treat cancer, reports medicalnewstoday.com. Melittin, a molecule found in the honeybee venom, not only puts the sting in a bee sting, but it also wipes out cancer. Scientists do not fully understand how it works, but they have found that melittin is toxic to tumors in melanoma, lung, ovarian, and pancreatic cancers. Researchers are also studying how melittin affects breast cancers and have found that melittin kills the cancers cells of two of the most aggressive and hard to treat breast cancers – triple negative breast cancer and HER2-enriched breast cancer. The melittin worked on the cancer cells quickly, within 60 minutes, and without harming normal cells. Interestingly, the venom from bumblebees, which does not contain melittin, did not kill the cancer cells. Learn more about how bee venom affects cancer here.

How to Apply Your Empowerment Skills to Your Health Journey #patientchat Highlights

Last week, we hosted our third Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Panel

Top Tweets

What are some frustrations you are dealing with right now?


What is the biggest hurdle you’ve had to overcome in your health journey?


What are your go-to trusted resources and how did you find them?


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

The Nitty Gritty on Care Partnering

For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.

Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.

Here we go.

  • Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
  • Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
  • Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
  • Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
  • Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
  • Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
  • On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
  • Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.

Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.

Patient Empowerment Revisited: What Does It Truly Mean To Patients?

Language is constantly evolving in our everyday lives. This is also true of the language we use to describe patienthood. The words we use color how we view our world and how the world perceives us as patients. 

‘Empowerment’ is one of those words frequently attached to patients.  The term is most often used to emphasize the value of having patients assert greater control over their health care.

In a previous post, I set out to explore what it means to be an empowered patient from the perspective of patients themselves. I outlined seven essential facilitators of patient empowerment, from access to information, to health and digital literacy.  Now, two years later, I want to revisit the theme of patient empowerment to investigate what, if anything, has changed in the interim. 

Is patient empowerment still a concept that resonates with patients? 

Reaching out to my online network of patient advocates I received an overwhelming response to this question.  The following quotes, which I’ve synthesised around the most common themes, demonstrate a rich source of insight. Some of the responses you may find surprising as they offer a new perspective on the evolving nature of what it is to be a patient in today’s connected world. Others I feel sure will resonate. Take some time to reflect on what it means to you to be engaged, empowered and enabled in your own care and that of your loved ones. As always feel free to share your thoughts on this topic with the wider community via PEN’s social media channels. 

7 Themes Related To Patient Empowerment

  1. Agency, self advocacy and control
  2. Information, choices and shared decision making
  3. Partnership and a team based approach to patient care
  4. Respect, understanding and compassion
  5. Peer to peer empowerment
  6. Is ‘empowerment’ the right term to use?
  7. Empowerment requires a systemic approach

As there is so much to cover across this topic I’ve split the discussion into two parts. In this first part we will look at Themes 1 – 4. 

Theme 1. Agency, self advocacy and control

On your health journey, care is the vehicle – why not take the wheel?” – Darren Myles (@DRMJunior).

The first theme to emerge centers around a sense of self-advocacy and taking ownership of our own care. Certified Cancer Coach and Executive Director of Emerald Heart Cancer Foundation, Elyn Jacobs (@elynjacobs) considers empowerment as something that is “essential to successfully navigate the cancer journey. As an empowered individual, you can take the path of action and self-advocacy.”

Laurie Reed (@lreedsbooks) also believes being “empowered means recognizing that you have the ability and the right to act on your own behalf. Empowered means taking ownership of the power to effect change for your health and how healthcare is delivered.”

Brain Cancer Babe (@braincancerbabe) sees empowerment “ as taking control for yourself and of yourself.”

Liz Johnson (@wired4story) who calls herself “a career soldier of cancer”,  views the ability to “have some control in dealing with a disease that is completely beyond my control” as essential to her survival. “I’m the coach of my healthcare team (and policy makers and researchers) And all that goes into my survival,” she says. 

Lily Collison (@lilycollison), the mother of a son with Cerebral Palsy (CP), says that taking a more active role in the management of their condition, pushes patients beyond “being recipients of care.” 

Doing so is a proactive move, a term favoured by two-times breast cancer survivor, Georgina Tankard (@flowersorcakes) and Victoria (@terrortoria), founder of the Younger Breast Cancer Network (@YBCN_UK). 

“In the past, perhaps patients were expected to do as they were told. Nowadays with so many more options and so much information, patients can reasonably play a key role in decisions regarding their care,“ points out MS patient, Conor Kerley (@conorkerley). 

Theme 2. Information, choices and shared decision making

“Empowerment is having choices and being seen as the human at the centre of your care.” – Julia (@BCCWW).

Choice emerges as another central theme related to agency and control.  “Choice gives us that feeling of empowerment, “ says Elyn Jacobs, “it allows us to regain the much-needed control we somehow lost when we heard “You have cancer.” If you do not know your options, you do not have any. Empowerment comes from knowing your options, and obtaining the necessary information is critical to make the right choices for you, and for your cancer.”

As Elyn highlights, choice is informed by access to good, reliable information. In the words of cancer patient, Chris Lewis (@christheeagle1) “I need the information so that I can make informed judgments about my life.” 

How can patients be empowered if they don’t understand their condition?” asks Lily, who was amazed to read that a “2016 survey of 1,214 parents and caregivers of children with CP found that they judged available medical information to be inadequate to guide their decision-making. Another piece of research found that the greatest area of unmet need reported by young adults with CP was information.”

Having knowledge is one thing, but it’s the ability to act upon that information that is a key driver of empowerment. To quote Conor, “knowledge is power but only if that knowledge is acted upon.” 

For that to happen, the right environment needs to be facilitated around the patient. This leads us onto our next theme. 

Theme 3. Partnership and a team based approach to patient care

“Whether it’s called empowerment or involvement, the patient needs to feel they are part of the team”  – Noreen (@hiberniaroots).

Many spoke about the importance of a team-based, partnership approach to their care. As Stage IV TNBC patient advocate, Janice Cowden (@JaniceTNBCmets) explains, “I feel empowered through knowledge about my disease, as well as experiencing a team approach, or partnership, with my oncologist in planning my care.”

For caregiver, Wendy Morton (@wendyjanemorton) it’s important that “there is a partnership between ourselves and the care team. Also a genuine adherence to shared and thoughtful decision-making.”

In this team-based approach, patients still rely on their healthcare providers to actively engage with them.   “It’s still very much up to our doctors to let us know what types of options are out there and include us in decisions about how to get there,” emphasizes metastatic breast cancer patient, Meredith Kuiik  (@MeredithKulik).

For Susan Rudick (@susanruddick1), “the word isn’t as important as the patient being engaged and knowledgeable and most importantly being an integral member of the healthcare team when possible.”

Theme 4. Respect, understanding and compassion

“As a patient it’s a matter of LISTENING to us. Our voices are the power we have. What’s wrong doesn’t always show up in a diagnostic test or a scan. It’s our entire self – physical, emotional, psychological and the voice of the patient  is our empowerment” – Ilene Kaminsky (@ilenealizah).

Achieving this approach requires a willingness on the part of healthcare providers to create a space in which patients can ask questions and feel they are being heard on a human level.

In the words of breast cancer survivor Jen Douglas (@MMEJendouglas), it’s not just about understanding the diagnosis, but also having the opportunity “to ask questions and having providers who will take my concerns seriously.”

Metastatic breast cancer patient, Keillie (@LehrKellie) agrees. “Patient empowerment means I can ask questions to my oncologist and she will listen and discuss what I am asking. When I tell her of a side effect, she believes me even if it is not on the list of top side effects of that chemotherapy drug.”

Nancy Seibel (@nancylseibel) sums it up by saying, “I think it’s about respect, dignity and compassion on the part of healthcare professionals and patients. I can’t express in a single tweet how routine hospital and medical practices can humiliate and challenge one’s sense of self as a human worthy of respect.”  

As Elyn points out, “empowerment is hindered when a doctor does not respect the patient’s right to be part of the decision making or instills fear to obtain compliance. You are not just a patient, someone who is expected to passively accept the treatment plan being offered; you are a person, a person with choices.”

Being respected in this way has a circular effect, as Conor demonstrates by saying, “Personally, I believe that as I educated myself and became more empowered, that the attitude of my healthcare team towards me as a young adult changed and I was given more respect. This led to more shared decisions regarding my care and in turn led to me becoming more confident and feeling more empowered!”

It’s important to remember, in the words of Victoria, that “not every patient is the same and clinicians should adapt depending on an individual’s needs.” Patient advocate Barbara Jacoby (@letlifehappen) cautions that we mustn’t forget the cohort of patients who lack the knowledge and skills to become more informed in their care.  “I believe that it then becomes incumbent upon the medical team members to take the time to share with the patient and their caregiver, or other trusted person who can accompany them to their appointments, to explain proposed treatments and options and why such a course is considered to be the best for this individual person,” says Barbara. “Even if the person does not seem to want to be vested in their own decisions, the respect that the patient is given by the doctor builds a level of trust and confidence. This allows the patient to understand that they really matter and are seen as something more than another disease that needs to be treated. Knowing that you matter as a person will enhance the doctor/patient relationship and this automatically empowers the person to want to do their best.”

To conclude Part 1 of this discussion on patient empowerment I want to leave the final word to cancer patient advocate (@GraceCordovano).

Patient empowerment is often framed in the context of:

  1. Activating an individual patient, to essentially change their behavior to better themselves
  2. The doctor-patient relationship, with specific actions that could be done or incorporated to strengthen the interactions, trust, and clinical encounters.

A person’s health and pursuit of their best life with a diagnosis is so much bigger than these 2 traditionally referenced settings. Patients need to also be best supported to hack the health care ecosystem, to navigate its many silos and fragmented workflows, and to exceed the barriers that stand in the way of patients getting the care and resources they need to live their best life where they are.”

Join me for Part 2 of this discussion, where we will take a closer look at the role of peer-to-peer networks in building communities of information and support. I will also be asking if “empowerment” is an outdated concept.  Should we even be using the term in our discussions?   Join me for more answers to this question and further rich insights in Part 2. 

The Power of a Gift

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.


Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

Treatment Approaches in AML: Key Testing for Personalized Care

Treatment Approaches in AML: Key Testing for Personalized Care from Patient Empowerment Network on Vimeo.

When it comes to Acute Myeloid Leukemia (AML), genetic testing (or biomarker testing) is essential in helping to determine the best treatment approach for YOU. In this program, AML expert, Dr. Naval Daver reviews key decision-making factors, current AML treatments and emerging research for patients with AML.

Dr. Naval Daver is an Associate Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. More about Dr. Daver here.

Download Program Resource Guide

See More From INSIST! AML

Related Resources:

 

How is Acute Myeloid Leukemia (AML) Treated?

 

Effective AML Combination Treatment: Pairing Old and New Therapies

 

Confused About AML Genetic Testing and Treatment? What You Need to Know

Transcript:

Katherine:                   

Welcome to INSIST! AML. A program focused on empowering patients to insist on better care. Today we’ll discuss the latest advances in AML, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program. And joining me is Dr. Naval Daver. Welcome, Dr. Daver. Thank you so much for being here. Would you introduce yourself?

Dr. Daver:                    

Hello. Yeah. Thank you very much, Katherine. It’s a pleasure to join this discussion and meeting. I’m the Associate Professor in the Department of Leukemia at the MD Anderson Cancer Center. I focus on the treatment of acute myeloid leukemia and MDS, including the development of a number of clinical trials that are using targeted therapies and immune therapies for this disease. And with the great and dramatic progress, we’re seeing in acute myeloid leukemia; I think it is now more important than ever for patients to be aware of the options and be able to select the most appropriate therapy with their physicians.

Katherine:                   

Before we get into the discussion about AML, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Dr. Daver, I know the field of AML research is advancing rapidly. Would you give us an overview of the current treatment types in AML?

Dr. Daver:                    

There has been dramatic progress in the treatment of acute myeloid leukemia, especially in the last three years. We’ve had eight new drugs approved for the treatment of acute myeloid leukemia. The most progress I think that has happened so far is in the identification of particular molecular mutations and targeting those mutations with targeted therapies.

The mutations that are most important right now and have target options for FLT3 mutations, F-L-T-3, and the drugs that have been USDA-approved for this are an agent called Midostaurin, which is a first-generation FLT3 inhibitor and combination chemotherapy.

And then, more recently, another agent called Gilteritinib, as a single agent in relapse refractory FLT3 AML. The other mutational group that is also very important, and therapeutically needs to be checked, is IDHN1 and IDH2. And there are now two IDH inhibitors, IDH1 inhibitor, Ivosidenib, and IDH2 inhibitor, Enasidenib, both of which have been approved by the United States FDA for relapse patients with IDH1, IDH2 mutations. So, I think it’s really critical now to check for particular molecular mutations and to appropriately add the particular targeted therapy or select the particular targeted therapy in patients who have the mutation.

The other major area of advancement, and probably, if not the most important breakthrough that has happened, is the development of a new drug called Venetoclax. This is a BCL2 inhibitor. It’s new in AML, but in fact, it has been used for many years in CLL, which is chronic lymphocytic leukemia.

And this drug, in combination with Azacitidine in the frontline setting in older patients with AML who are not good candidates for intensive induction, has shown very high response rates, almost 70 percent CR-CRi, which is more than double of the 20 to 25 percent we were getting with Azacitidine alone.

And it’s now been approved by the US FDA and, in my opinion, and many of the experts really is the new standard of care and should be used in all older patients who are not good candidates for intensive chemotherapy given both the very high response rates, as well as now mature data showing significantly improved overall survival and a good tolerability.

So, there are many other breakthroughs. But I think these targeted agents, and Venetoclax, probably are the most impactful today.

And we’re focusing a number of new combinations building around this.  

Katherine:                   

What are common mutations in AML?

Dr. Daver:                    

Yeah. So, the most common mutation in AML is F-L-T-3, FLT3 mutation. This is both prognostically important mutation, presence of an FLT3 in a newly diagnosed AML, has been shown in many large publications by the German Cooperative Group, British Cooperative Group, our group, and others, is associated with an inferior survival.

Also, now, on top of that, it is also a therapeutically important mutation in addition to having negative prognostic value because the addition of FLT3 inhibitors seems to dilute, to a large extent, the negative prognostic value.

So, we believe that if we can identify FLT3 mutations at FLT3 inhibitors, we can definitely improve the outcome of those patients. The second most common is what we call NPM1 mutation, and that tends to occur with FLT3. About 55 percent of patients with an FLT3 mutation will have a coopering NPM1.

NPM1 is very interesting. With NPM1 mutation is present on it’s own without a FLT3, it’s actually associated with favorable outcome. It’s a favorable prognostic marker. However, if NPM1 is present with a FLT3, and especially if the FLT3 has a high quantity, high allelic load, then the NPM1 loses its favorable impact. So, now we’re kind of moving beyond just; do you have one mutation or not, which is what we thought 10 years ago, to; well, yes, you have this mutation, but what about the core-occurring mutation and even beyond. What about the burden, or what we call the variant allele frequency of that mutation?

So, for good or bad and I think it’s good in the end because it’s going to improve the patient outcomes, that we are getting more, more in-depth and there’s no longer quote, unquote, AML.

So, there’s a lot more granularity and analysis that is required even before starting treatment. And this is the thing that, in the community, we’re educating the doctors a lot, is that it’s okay to wait four to six days, especially if the patient does not have a very proliferative leukemia, to get the important bloodwork to identify the appropriate molecular and chromosome group.

So, that we can select the right treatment which will improve outcome rather than just rushing into standard treatment and missing a particular molecular chromosome group.

Katherine:                   

True. It might not be – the genetic testing might not be right for everyone.

Dr. Daver:                    

Right. Right.

Katherine:                   

What is genetic testing in AML?

Dr. Daver:                    

So, genetic testing in AML is basically what we call molecular profiling.

So, it’s looking at the presence of particular molecular mutations. For example, at MD Anderson, we do what we call 81 gene panel. So, this looks at 81 different genes for mutations in the bone marrow of newly diagnosed acute myeloid leukemia. Now, how did we come up with 81 genes? So, this was actually done by literature analysis and review of previously published preclinical and translational studies, and we basically selected all mutations that had been shown to occur in two percent or more of thousands of AML patients. And we found 81 such mutations. So, that any mutation that had a two percent or higher frequency in known published or public databases was included.

And that’s how we’re able to analyze for the mutation. So, it’s still possible that there may be some very rare mutations that are present, and those may be important for research. But they don’t change our treatment decision today. And so that’s what we call genetic profiling. Some people call it molecular mutation analysis. Some people call it next-generation sequencing.

But basically, this is looking for mutations in particular genes that are known to occur in AML. Now of those 81 genes; and some people do a 100 gene panel, some do 50, so those are variables; but among those, there are four or five that are most important: the FLT3, as we discussed, where we can use FLT3 inhibitors; IDH1 and two, because we can use IDH1 and IDH2 inhibitors; TP53 is a very important mutation because it has very high risk and adverse prognosis.

And there are now new drugs coming that may be very effective in TP53. So, we are checking for that. Those drugs are in trials, but the trials are showing very promising data and could be a great option if a patient is known to have a TP53.

Those drugs are Magrolimab, CD47 antibody, and APR-246. So, these are the four most important therapeutic mutations.

There are also some mutations that have prognostic value even though we cannot target them. These include mutations like RUNX1, DNMP3A, ASXL1.

One does not need to know the list. But the point is that these mutations may help determine whether a patient falls into intermediate-risk group or high-risk group, which then impacts the decision as to whether we need a stem cell transplant or not. So, it really is important to get this molecular profiling. It’s actually available in the United States commercially. And any clinic or hospital is able to actually order it. And insurance will cover it in 100 percent of the cases.

Katherine:                   

Wow, that’s great. What should – when should patients be tested, and how is testing done?

Dr. Daver:                   

Yeah. So, the basic testing for any suspected new acute leukemia is to get a bone marrow biopsy. That has to be done.

That should be done very quickly because all of the information that will be generated to make the treatment decision will come off the bone marrow biopsy.

Katherine:

What about retesting, Dr. Daver? Is that necessary?

Dr. Daver:                    

Yeah. So, retesting is necessary in – not for everything, I think.

But let’s say someone had treatment induction and relapsed a year later. So, we would definitely retest: 1) to confirm with the bone marrow’s relapsed AML, get the blast percentage because we need that before restarting treatment, so we know what was the starting point to know how the patients doing after treatment if he’s responding. 2) Molecular testing, for sure, should be repeated. We usually repeat the molecular testing such as FLT3, IDH1, IDH2, because there are drugs that can target these mutations in a relapse.

And more interestingly, we actually have published, and other groups have also published, that there are some patients who may not have those mutations at baseline but may actually acquire or have detectible mutations at relapse. So, if you don’t have FLT3 at baseline, your physician may assume that the FLT3 is not there, not do mutational testing. But in fact, that may not be true. So, it is important to retest about 15 percent, one five percent, in our publications can acquire a detectible FLT3. Which is critical because this could then change your treatment.

IDH1 and two are rarely lost or acquired, but we have seen a few five percent or so cases of that. So, it’s still better to check for that. And then TP53 we check for because now we have these new research clinical trials, phase one, two, that are showing some very encouraging activity in TP53. So, these are probably the main things to retest for.

There’s also some new clinical data emerging with a new drug called menin inhibitor that targets a particular chromosome abnormality, MLL rearrangement. This is again in a phase one setting, so the data may not be widely disseminated. But we’re seeing some very encouraging activity with menin inhibitors.  

And so, we are 100 percent checking for the MLL rearrangement chromosome, which can be done on FISH, or routine chromosome.

And if that is there then trying to get on one of the menin inhibitor trials, they’re opening about 25, 30 centers with different menin inhibitors, would be a very, very good option because we think these will be the next molecular or chromosome-targeted breakthrough in AML.

Katherine:                   

We’ve been discussing how molecular testing results lead to targeted therapy. How do targeted therapies work?

Dr. Daver:   

Targeted therapy means that we’re targeting a particular mutation. Now we may be targeting in different ways. So, some of the drugs, like FLT3 inhibitors, these are the most established and oldest targeted therapies in acute myeloid leukemia, been in development for about 18 to 20 years, work by blocking a particular receptor, the FLT3 receptor.

That receptor, when blocked, removes the growth and proliferation signal to the leukemia blast. And that receptor is much more preferentially and heavily expressed on the surface of the acute myeloid leukemia cell as compared to the normal, healthy myeloid or lymphoid cell. So, basically, we are shutting down the growth signals, resulting in eventual death of the leukemia blast and that’s how FLT3 inhibitors work. So, it’s a more of a direct activity resulting in cell death over a few days and quick action. On the other hand, we have what also is called targeted therapies but act very differently. These are IDH1, IDH2 inhibitors.

So, when you use an IDH1 or two inhibitor, they do go to the IDH1 and two receptor on the surface of the acute myeloid leukemia cell, but actually, they don’t result in the death of the cell. They actually cause what we call differentiation.

So, they promote that immature abnormal leukemia cell to undergo maturation and become a normal myeloid cell, which, over time, will die because normal cells have a finite lifespan, and they will die. As compared to leukemia blasts, which can live on much, much, much longer. And so, this process is called differentiation. So, FLT3 inhibitor, very different direct cell death. IDH inhibitor, very different from most maturation differentiation of immature cells to mature cells and takes longer. So, this is important clinically because with FLT3 inhibitors. We see responses quickly, one to two months. IDH inhibitors it takes longer, three to five months.

And so, targeted therapy is not one and all the same. You may be targeting a particular receptor, but the modality of action downstream may be very different.

Katherine:                   

What’s the treatment regimen for targeted therapies, and how long are patients treated with these types of therapies?

Dr. Daver:   

Yeah. I mean, that’s an area of big research. There’s no one field of answer yet for – and I don’t think there will be.

Of course, eventually. So, it really depends on; 1) What setting we’re using it in? Newly diagnosed, relapsed AML. In relapsed AML, with most targeted therapies, whether you’re use is a single agent, like FLT3, IDH1, IDH2, TP53, MLL-targeted agents, the goal is to get a patient to transplant.

Transplant, meaning allogeneic stem cell transplant using a sibling donor or a match-generated donor.

Because in relapsed AML without transplant, irrespective of the genetics and chromosomes, all relapsed AML have very poor outcome. The survival is only 20 percent or less without transplant.

If we can get a patient to transplant, we do have a good chance of long-term survival. So, the goal is transplant. And we usually use a targeted therapy for short, finite period, two to four months, to get a remission, get to transplant, hope that will cure the disease.

In front line, it’s quite different. We’re using induction chemotherapy with FLT3 inhibitors. In some research trials, we’re adding IDH1 and two inhibitors. We’re using Venetoclax, which is a kind of a targeted therapy.

Also, the BCL2 in combination with hypomethylating agents. And here, the targeted therapy is often used indefinitely. At least for one or two years. But in our approach and our guidelines, we continue the FLT3 inhibitor, IDH1 or two inhibitor or Venetoclax, as long as patient is tolerating it and does not have disease progression.

So, these are being used kind of similar to CML, chronic myeloid leukemia, where we use tyrosine kinase inhibitors or myelofibrosis, where you use jak inhibitors. They don’t cure the disease, but they continue to control the disease as long as you take them.

And in the end, we call this functional cure.

If somebody takes a FLT3 inhibitor and lives 20-plus years, semantically, he was never a cure, like an infection gets cured. But functionally, to me, he lived a normal life, and he was cured.

Dr. Daver:                    

And so, that’s how we’re using those inhibitors in the frontline setting different from the relapse setting.

Katherine:                   

How do these newer therapies differ from more traditional chemotherapy?

Dr. Daver:   

Yeah. Dramatically different. Completely different from traditional chemotherapy. So, to put it in more layman terms, traditional chemotherapy is like a nuclear bomb. Right? You – There’s a lot of things there in the marrow. You don’t know what’s good. You don’t know what’s bad. Blow it all up and hope that, when the new plants grow, the good ones grow and the bad ones were kill. And, in fact, this is true, to a large extent. Traditional chemotherapy, not to put it down, is actually been curative in a large population of AML for the last three decades. Our group and British MRC and Polish, and many groups have published up to 50 to 65 percent cure rates, especially in younger patients, below 65, with traditional chemotherapy.

So, this is not bad. People always get depressed with leukemia. But if you look at solid tumors, I mean, they have never achieved cure rates above 10 to 15 percent till the last decade or so. So, we were still getting 60, 65 percent cure rate. Two out of three.

So, traditional chemotherapy has done great work. But it was that approach. Just nuclear explosion. Take it all out, and hope good stuff comes.

Now the targeted therapy’s like a sniper. It’s actually looking for the particular leukemia cells and trying to take them out one by one with minimum collateral damage to your healthy bone marrow cells, which are important to produce red cells, platelets, white cells. So, guess what? There’s much less toxicity. You don’t see the hair loss with these agents. You don’t see the mouth sores and mucositis. GI complications are much less; infection risk is usually less.

Not to say they don’t have their own side effects. Unfortunately, even the targeted therapies have unique side effects. But, in general, those side effects are much less impactful in a negative quality-of-life way and much more manageable and tolerable. So – And, in the end of the day, they’re actually often more effective.

So, for example, with the FLT3 inhibitor, the study that was done with Gilterinib and Quizartinib, two very potent FLT3 inhibitors, was looking at a single-agent FLT3 inhibitor versus three-drug, high-intensity combination nuclear chemotherapy. And if I told this to any layperson, they would say, oh my God, that’s completely unfair comparison. You’re going to use three drugs, IV chemo, strong chemo, and compare it to one oral targeted pill. There’s no way the pill can be even equal, leave apart, win.

But guess what? The targeted therapy actually won. It not only was equal. It doubled the response rates, it reduced the toxicities and early mortality and led to improved overall survival, the gold standard. So, this shows that even though they are sniper, they can actually be much more effective with less toxicity. So, it’s a win-win. Better, tolerable, and more effective. Now the next stage within then decade, we think, it’s not one or the either, it’s really a combination. So, we’re reducing the dose of chemotherapy. So, we’re not making it as nuclear as it was. It’s still intense. But much more tolerable. And we’re compensating for that by adding the targeted therapy.

And, in fact, in the end, we expect much higher responses and survival with much better tolerability and lower early mortality. But I don’t think we’re at a stage where traditional chemotherapy is gone. Maybe 10, 12 years from now, as many more developments come, we’ll get there. But I think it still has a role, especially in the younger AML patients.

Katherine:                   

Dr. Daver, you mentioned the – some common side effects of chemotherapy. What about some of the newer therapies? Do they also have side effects?

Dr. Daver:                    

Yeah. Absolutely. I mean, every therapy we have in leukemia has a side effect. There’s no drug I can mention that is just devoid of them. Of course, some are less, and some are more. So, to be more specific, I think, for example, IDH1, IDH2 inhibitors, these are probably one of the most tolerable treatments we have in all of leukemia treatment. In general, they don’t cause much myelosuppression. Meaning, drop in blood counts. They don’t cause hair loss. They don’t cause mouth sores and GI upset in majority of people.

They’re always some patients who may. But what they can cause are two things: Number one, is they can cause what we call the differentiation syndrome.

And differentiation syndrome means the blasts that are going from the immature state to the mature state; in that process, they can cause an inflammatory reaction. And this can manifest with fever and cough, and chest pain, hypoxia. It’s something that’s actually very, very easily treatable, giving steroids for three or four days will take care of it. But many times, people were not aware of this. And so, often, we saw this was missed in the community.

So, that’s one specific example. With the FLT3 inhibitors, sometimes we see that they can cause more prolonged drop in blood counts, and count recovery can be delayed. Or we can sometimes see that they may cause some cardiac signals; increase in cardiac intervals. Again, something that, with close monitoring, bloodwork, keeping the electrolytes normal, can be managed. But I don’t want to go through the whole list. But the point is that there are specific and unique side effects that can be seen with particular targeted therapies.

And again, this is a learning curve where we have done these trials for eight to 10 years. So, we became familiar. But when the drug is approved, it’s a – it’s kind of a night-and-day situation in the community. They didn’t have the drug yesterday. They have it today. But there may not be any learning curve there. So, I think that’s where a lot of education and interaction with our colleagues is now coming into play.

But also, patients, I think, need to take this a little bit into their own hands, and also read about the label, read about the drug. So that, if they have side effects, if they actually ask their doctor and say, do you think this could be differentiation? I read about it. Yeah, most people will at least think about it. And I think this could be helpful to make sure that things are not missed. So, we do want patients to be more interactive and kind of  take things into their own hand. Because there are so many new drugs out there that their doctors may not be fully familiar yet.

Katherine:                   

Well, let’s talk about patient advocacy. What are some of the key tests that patients should ask for after they’ve been diagnosed?

Dr. Daver:                    

Yeah. Absolutely. So, I think the key things that patients should want to get the information is: 1) Knowing the bone marrow blasts.

I mean, that’s really basic. Just knowing what leukemia it is. What are the blast percentage? 2) Is, I think, chromosome analysis is very critical to get that information and to make sure we’re not missing acute promyelocytic leukemia, or core-binding factor leukemia, which have different treatments and very favorable outcomes, and would never, in general, never require a allogenic transplant. At least in majority of cases.

And 3), which is the one where we still see that it may sometimes not be available or be missed, is molecular testing.

I think it’s very critical to request molecular testing. And among molecular testing, especially FLT3, maybe IDH1 and IDH2, and TP53.

So, I think these are the most important data sets. Cytogenetics, key molecular mutations, bone marrow blasts, and confirmation of the type of leukemia before we embark on any treatment.

Katherine:                   

How can patients feel confident, do you think, in speaking up, and becoming a partner in their care?

Dr. Daver:   

Yeah. I mean, this is always a touchy area because physicians may feel that this is kind of encroaching on their territory or telling them what to do. And this is always a major challenge. I think when you go for the clinic visits, just to have a list of your questions written down and having them prepared and prioritizing them.

I always say, have your top-three questions ready.

We’ll try to do the others. But we’ll do the top three. And I think, when you have a new diagnosis of AML, the top three should be: what is the type of leukemia I have, and what are the bone marrow blasts? Number one. Do we have any chromosome and molecular information? Number two. And number three: Are there any specific treatments for my specific AML based on that chromosome molecular information? Or do we need additional information, and can we wait for that safely? I think these are the three very reasonable questions which, I think again, most leukemia experts will automatically be discussing this.

But, I think, for a patient, I think that’s important information to make sure they get before proceeding. If there’s time, the fourth question will be: Is – Are – Do we have a choice between high intensity, low intensity? And if we do, what are the pros and cons? In some cases, there may be a choice. In some cases, it may very clear that high intensity is the way to go, or low intensity is the way to go. But still, I think it’s often good to discuss that with your physician.

So, these are probably the four things one can bring up reasonably without the physician feeling that this is going to take forever, and I cannot discuss this. And then a lot of the AML treatment happens in-patient. So, there will be a lot of time for additional discussion. I tell my patients that, look, once we get the basics and the treatment decided, which is what we do in clinic, then you’ll be in the hospital most of the time. If it’s induction chemo for four weeks. Even if it’s Venetoclax, often they’re admitted for five to seven days, they will have more time then to discuss with the physician, the nurses, on a daily basis, and get more of the nitty-gritty.

Things like diet, exercise, lifestyle. Can I meet friends? I think you should not try to bring those things up right in the first visit. Because that may dilute the key information. So, I think staggering it, keeping in mind that many physicians are extremely busy, and getting that information in pieces over time, is probably productive for you and for the doctor.

Katherine:                   

With Covid-19 affecting all our lives right now, what should AML patients be considering at this time?

Dr. Daver:   

There’s a lot of guidelines on general approaches to managing things in COVID. And all of those guidelines heavily center, as we would think intuitively, on precautions.

Hand washing, minimizing contact, avoiding crowded places, trying to get treatment, potentially locally, if there are equivalent options available. We have not changed any of our frontline – we discuss this a lot every week in our faculty meeting.

This is discussed especially, as you know, because Houston currently is a major center affected heavily by COVID, and so, we have discussed whether we should move in a universal way to lower-intensity therapy for all patients. And we haven’t. And there’s pros and cons to that. When we do induction chemotherapy higher intensity, we, in fact, admit our patients for 28 days.

o, actually, even though it’s high intensity, the patient is more protected because they are in the room. Isolation rooms, sometimes. And they have minimum contact with outsiders. So, with COVID, actually, there’s very little opportunities or chances for them to get it. But the chemo is intensive. So, if they did get COVID, then it could be much more difficult or risky, or even fatal. On the other hand, low-intensity therapy is good because it’s low intensity and the risk of COVID, the frequency may or may not be changed; we don’t know. But the intensity we think could be lower because the immune system has not been suppressed.

However, low-intensity therapy very often is given outpatient. And so, then you have the benefit of lower intensity but the risk that you are going to be driving back and forth to the medical center, getting bloodwork, exposed to people in the waiting room, this and that. So, what we decided, after a lot of discussion among a big leukemia expert faculty in our group, was that we will still decide the optimum treatment based on the leukemia chromosome, molecular, age, fitness of the patient like we’ve always done.

And then we just have to try to encourage the patients to do as much precautions as possible. The other thing with the COVID, I think is very important is that, even though you may not be able to travel to your academic institution nearby because it’s harder to travel now, it’s still a good idea to try to get a consultation. We are doing a number of phone or email consultation, either directly with the patient, and even more frequently with their community doctor.

So, I get every day, four or five emails from academic even, and community physicians just saying, I have this patient, new AML, relapsed AML, whatever the case may be, here’s the mutation chromosome information, and I was going to do this. But the patient asked that I run this by one of my top academic colleagues. So, maybe MD Anderson. Some, I’m sure, are talking to Sloan. Some are, I know, are talking to Dana Farber. Cornell, whatever it may be. So, you can always request that. And maybe 100 percent of physicians may or may not do that.

And we’re seeing this collaboration actually. One of the positive things of COVID is we’re seeing these collaborations becoming better and better over time.

Katherine:                   

Oh, excellent. If a patient does need to go to clinic for a visit, what safety measures are in place?

Dr. Daver:   

Yeah. So, there’s a few things we’re doing in clinic is; one is we have staggered our clinics. So, instead of having everybody come at 9:00 or 10:00 a.m., and having 30 people in the waiting room, we really have more time slots.

And we ask people to come three of them at a time in the waiting room. We’re minimizing it three to five patients at most

Of course, there’s a lot of sanitization, dispensation units everywhere, encouraged to use those. The other important thing which, unfortunately, is a double-edged sword, is that we have had to minimize the number of friends, relatives, spouses, that can come with patients.

In fact, the policy at MD Anderson, like most cancer centers, is that nobody is allowed with the patient unless the patient is physically really impaired, as in wheelchair-bound or cannot go to the restroom. Of course, there are exceptions. But generally, I know, and I actually benefit a lot from it too, when patients have their family because the emotional support also helps our medical team to get information across. The patient may be sometimes stressed and forget things. So, what we’re doing more and more is doing phone calls.

So, what I would recommend is, as soon as doctor comes in, say, hey, doctor, can I call my daughter or my wife? I want her to listen to everything. Perfect. I don’t mind. There’s a speaker on. Good.

So, that helps with communication. But those are the big changes we have done from the clinic perspective. Still seems to be working relatively smoothly. We’re still seeing almost about the same number of patients in clinic that we were before COVID. And we have, fortunately, and knock on wood, not seen big numbers of leukemia patients with COVID. And we think the primary reason is because leukemia patients are just very cautious from the beginning. Even before COVID, they knew the risks, and we want them to continue that as much as possible.  

Katherine:

Dr. Daver, thank you so much for joining us today.

Dr. Daver:   

Thank you very much. Always a pleasure.

Katherine:

And thank you to all of our partners.

To learn more about AML and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell – Thank you, Dr. Daver.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

For over 30 years, doctors in Utah have been perplexed by the number of childhood cancer survivors being admitted to hospital with breathing difficulties in the winter. Last year, new research finally began to shed light on the link. The importance of air quality to recovery is widely recognized, but could it be that air quality continues to be vital even after recovery?

Study into childhood cancer survivors and air pollution

Douglas Fair, a pediatric doctor from the University of Utah’s Primary Children’s Hospital, explained that “childhood cancer survivors are more susceptible to bad air quality.” Research was led by the Huntsman Cancer Institute, and discovered a significant correlation between childhood cancer survivors and hospitalizations for breathing problems. The majority of episodes occurred within three days of a specific air pollution event, and children who had been treated with radiation and chemotherapy were typically more susceptible. Cancer survivors were seen to be approximately twice as likely as their peers to be affected by air quality to the extent that they developed a respiratory illness like bronchitis or pneumonia.

Lead researcher on the study, Judy Ou, explained that some children don’t have full immune function after these treatments, and their lungs are still developing. The researchers studied 3,819 cancer survivors with records from between 1986 and 2012. 185 of those patients had been hospitalized 335 times for respiratory conditions, with many instances occurring during periods of high air pollution.

Effects on survivors of adulthood cancer still unknown

One researcher at the Huntsman Cancer Institute highlighted the fact that the research is in its infancy. Anne Kirchhoff now plans to study the effect of ozone pollution on adult survivors, something which has yet to be investigated. She spoke of the need for public health advice regarding air pollution to be given on days that are currently classed as mild, so that those who are more susceptible have ample warning, and suggested that doctors warn cancer patients about air quality.

Because studies are still being conducted, it is unclear of the full impact of air quality on survivors of adult cancers. The best approach is to be vigilant regardless. This means ensuring that your air conditioner is properly maintained all year round: experts say that an efficient air conditioning system can improve air quality significantly. This is because they are designed with filters to remove airborne particles, keeping your indoor air clean even if you live in a high-pollution zone. It will also be helpful to keep an eye on pollution warnings, particularly in regions prone to high levels of pollution. If you are concerned about respiratory illness having completed your treatment, speak to your doctor for further advice.

The research into the correlation between air-related respiratory illness and childhood cancer survivors has given doctors a vital understanding of the link. Research into adults is now underway, so there’s hope for a deeper understanding in the future. For now, however, it is advisable to maintain your air quality as far as possible, and remain vigilant to respiratory illnesses.