PEN Blog Archives

How to Make the Most of a Virtual Visit

“Well, we need to check your titer,” the doctor explained as he went over my lab results via a recent Zoom call. “Titer?” I thought. I know I’ve heard that term before, but I wasn’t really sure what it meant. The doctor reappeared the word a few more times, exacerbating my confusion. I was too embarrassed to ask what he meant; he was talking quickly. When he eventually said, “The titer is the strength of the antibodies in your blood,” I finally understood and felt more at ease.

As we face this pandemic, chronic and/or rare disease patients like myself are facing an extension of the “new normal” that everyone is experiencing firsthand. Our doctor’s appointments are critical times when we’re able to explain how we’re feeling, how our medication may or may not be working, and what the next steps are. But our visits become different when our face to face sessions turn virtual. I believe we become more vulnerable, as we invite the doctors into our home lives.

While healthcare has certainly come a long way and telemedicine has been on the horizon, virtual visits are now the norm. We have been placed, both as patient and healthcare professionals, in a position that allows us to take advantage of the technology we have and still provide and receive great care. In my opinion, these visits should not be considered a hassle, but rather an encounter that continues to focus on patient education as we face unprecedented times.

A part of patient education is health literacy. Health literacy can be defined in many ways, but the short, paraphrased version is that health literacy is the ability of patients to understand health information (verbal, visual, etc.) in order to make the best decisions about their health. This includes understanding the messages that are being conveyed to them by health professionals, including symptoms to look for and how to take medication. The case remains the same whether visits are in-person or virtual, perhaps with greater emphasis on the latter, in my opinion.

Below, I will highlight things that patients can do to make the most of their health appointment, with a focus on health literacy.

Tips for Patients

  1. Discuss any information you have questions about during your appointment, especially if it has jargon you don’t understand
  2. If a doctor speaks too quickly, tell them to slow down or repeat what they said
  3. Take notes during your appointment if having something visual helps you remember
  4. If your doctor mentions a word you’ve never heard of, ask them to define it
  5. Share your understanding of how a certain medication or treatment is helping you and/or if you think something could work better
  6. If you’re unsure of how to take a medication, show the label to your doctor to have them explain
  7. If you are provided with test results, ask your doctor to review them carefully with clear language

How to Create a Month’s Worth of Posts for Your Advocacy Blog

Are you looking for a way to boost your advocacy activities online?

One of the best ways to do this is to create a blog.  Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.

If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.

Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts.  Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.

10 Ways to Create a Month’s Worth of Blog Posts

1. Share Facts and Answer Questions for Your Readers

You might like to start by asking your readers what kind of questions they have that you can answer for them.  You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.

2. Recycle Old Posts

Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post.  Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.

3. Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.

4. Share the Latest Medical Research in Your Disease Area

Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal?  Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.

5. Create a Reader’s Poll

There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.

6. Write about a Typical Day in Your Life

What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.

7. Embed Slide-Decks of Your Talks

Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.

8. Invite a Guest Blogger to Write For You

Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.

9. Create Recurring Content

Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.

10. Plan Posts around Seasons and Events

This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.

Notable News: May 2020

Just in time for summer, there are a couple of compelling reminders of why we should all be exercising more. There’s also a new map for breast cancer, and a new vaccine that we’ve all been hoping for. No, not the one for Covid-19, but this one is equally important. Oh, and, speaking of infectious diseases, new research shows that getting an infectious disease could very possibly lead to cancer.

Researchers have found a link between infectious diseases and the development of cancer, reports medicalnewstoday.com. In a study that looked at data from more than 50,000 people over a period of seven years, researchers determined that people who had had an infectious disease, such as influenza, pneumonia, gastroenteritis, and hepatitis, had a higher risk of developing a later cancer. In addition, different infections were linked to different forms of cancer. For example, people who had pneumonia were more likely to later develop stomach cancer. More research needs to be done to fully understand the connection but, knowing that there is a link between some diseases and future cancer occurrence could help in developing better cancer screenings and diagnostic testing. It could also help us all work harder at staying as healthy as possible. Learn more here.

Like it or not, a great way to actively try to stay healthy is through exercise. Research continues to show that exercise is beneficial for cancer treatment and prevention. More specifically, a new study shows that exercise may help prevent liver cancer, reports medicalnewstoday.com. This is particularly good news because liver cancer is on the rise and it is deadly. The general five-year survival rate is 18 percent. Men are at a higher risk of developing liver cancer, and it is the fastest growing cause of cancer death for men in the United States. The study, performed on mice, found that exercise reduced the occurrence of liver cancer. While all the mice in the study were obese, only 15 percent of the mice who exercised developed liver cancer. Of the mice that didn’t exercise, 64 percent developed liver cancer. In addition to establishing the link between exercise and liver health, the researchers also discovered molecular reasons why exercise may prevent liver cancer. They found that exercise switched off a stress-activated protein that has been found to support tumor development and turned on a gene that has been found to inhibit the growth of cancer cells. Hop on the treadmill and learn more about the study here.

Exercise can not only prevent cancer, it can also increase your chance of survival. A new study shows that exercise increases the length of survival for women with high-risk breast cancers, reports cancer.gov. High-risk breast cancers are more likely to recur or spread, but the study showed that women who were physically active were more likely to live longer and were less likely to have their cancer recur. While those who exercised the most and the most often showed a greater reduction in rates of recurrence and chance of death, there were positive outcomes for those who exercised during any stage of their diagnosis and treatment. Learn more about the positive effect exercise can have on breast cancer survival rates here.

There’s encouraging news in breast cancer prevention as well. A new guide has been developed to show how environmental toxins can lead to breast cancer, reports medicalxpress.com. Since only five to ten percent of breast cancers are a result of high-risk, inherited gene mutations, researchers wanted to better understand the role toxic chemicals play in the development of breast cancer. Using radiation exposure as a model, researchers identified the sequential biological changes that occur through exposure to toxic chemicals. The information was used to create a map highlighting the various ways toxins can lead to breast cancer. Researchers hope their map will be used in the development and regulation of chemicals. Knowing which chemicals can trigger breast cancer could help in reducing the number of breast cancer cases. More information can be found here.

Of course, the ultimate form of cancer prevention might be a vaccine and researchers are getting closer to making that a reality. A new and promising cancer vaccine has been developed, reports techtimes.com and medicalxpress.com. The vaccine was developed using microcapsules and when the vaccine is injected, the microcapsules, which have a self-healing component, activate the immune system, and inhibit tumor development. The vaccine showed effectiveness against different types of tumors including melanoma, breast cancer, and lymphoma. More information about how the vaccine was developed and how it works in the body can be found here and here.

It’s nice to know that the scientists are out there doing the research and working on creating important vaccines that give us hope for a healthier tomorrow, but it’s also nice to know that simply by taking a walk or a run or a bike ride and by washing our hands or wearing a mask or keeping our distance, we are all taking important steps toward being empowered patients today.

Virtual #patientchat Highlights

Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever 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

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester


Top Tweets

Sometimes You Need to Unplug


Enhancing Digital Health Literacy


Stories Are Still Important


Full Chat


 

The Government And Charitable Resources Available To Veterans Diagnosed With Cancer

Each year, over 40,000 veterans are diagnosed with cancer in the US. Many veterans of the Iraq and Afghanistan wars were exposed to a variety of hazardous substances, from depleted uranium to chemical warfare agents. This history of toxic substance exposure has left a legacy of health complications and may explain the worrying increase in cancer rates among veterans in recent years.

Veteran’s Affairs healthcare benefits

For veterans lacking insurance, cancer can be particularly distressing, adding financial worries to the considerable health concerns of a diagnosis. Veterans diagnosed with cancer during or after their military service may be entitled to Department of Veteran’s Affairs (VA) healthcare benefits if they are discharged under any condition other than dishonorable, regardless of the time since active service. VA healthcare benefits will cover health exams as well as specialized inpatient care. Furthermore, these benefits are available regardless of what insurance a veteran has, be it Medicare, Medicaid, private or none at all.

Veteran’s Affairs disability compensation and cancer

To receive maximum disability compensation, a disabled veteran must earn a 100% VA Disability rating. However, because of the way the rating is calculated, this can be very difficult to achieve. Veterans affected by cancer may qualify for VA disability benefits, and in cases where the VA determines the illness is service-related, they may temporarily receive a disability rating of 100% for as long as the cancer is active.

Agent Orange, a herbicide deployed in Vietnam, has been linked to Hodgkin’s lymphoma and leukemia in veterans and civilians exposed to it during the Vietnam war. As a result, veterans deployed to Vietnam may qualify for VA disability benefits under presumptive conditions. Presumptive conditions are cases in which the VA presumes a disability or illness is caused by military service and for which it decides to award benefits.

Non-governmental organizations offering assistance to veterans

Beyond the VA, there are a number of charitable organizations offering assistance to veterans diagnosed with cancer and their families . The Fisher House Foundation offers a no-cost network of comfort homes located near major military and VA medical centers across America to the families of veterans receiving treatment. This is especially important in cases where veterans must travel long distances for treatment at VA or specialist medical centers, allowing their families to be with them every step of the way. For veterans looking for guidance or aid when applying for benefits, Disabled American Veterans (DAV) offers their services free of charge, helping veterans file their claims and providing vehicles for those in need of transport to medical facilities.

The decade following the Iraq and Afghanistan wars saw an unprecedented increase in the number of cancer cases among armed forces veterans. While the VA offers benefits and services to aid veterans living with this disease, in many cases it simply isn’t enough. For veterans in this situation, there exists a strong framework of charitable organizations ready and willing to pick up the slack and aid them in the fight.

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Diversity in Clinical Trials Benefits Everyone

The COVID-19 pandemic has been an unprecedented and collective experience for us all. Sadly, the pandemic has affected some more than others. This health crisis highlights both the pre-existing inequities in our healthcare system and the populations that experience such ramifications. Racial and ethnic minority groups (REMGs) will make up the majority of the population in the near future. Over the next two decades, the US population is estimated to make this major demographic shift. This is problematic because present inequities render REMGs disproportionately vulnerable and sick.

It is critical that REMGs are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone. Currently, REMGs do not have equitable access to general health care, let alone clinical trials. We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.

Clinical Trials Awareness Needs to Extend Beyond an Awareness Week

Clinical trials awareness needs to extend beyond an awareness week or event.  Diverse Health Hub had the opportunity to speak with Dr. Gary Puckrein, president of the National Minority Quality Forum, to learn more about the importance of diversity in clinical trials. In our one-on-one, we learn what’s at stake and what solutions we can act on collectively.

Dr. Puckrein shares three critical considerations. First, we must identify the barriers that prevent diverse clinical trial participation. Second, he describes the bleak outlook if we do not increase diversity in clinical trials. Lastly, we discuss the path to empowerment that creates solutions to these problems.

Historically, clinical trials have been flawed. Different types of barriers prevent diverse participation. For example, in the 1990s, women were not recruited into trials on the assumption that they would react to medications the same way men did:

“Back in the 1990’s we didn’t recruit women into clinical trials and so there was a big struggle to make sure that clinical trials were diverse by gender. Back then the assumption was if you have a bunch of men in the trial, women would react the same way that men do to the medications or the disease pathology would be the same and so, why would you need to have women in trials?”

Likewise, during that time, REMG participation rates were low, around 3-5%. Trust is an essential barrier, with a negative historical context. A poignant example of this for African Americans is the Tuskegee experiment. Dr. Puckrein explains:

“In the African-American community, there are fears that came out of the Tuskegee experiment where therapy was withheld from African-Americans who were suffering from syphilis for no particular reason and it has an awful impact on their lives and so, that’s a deep scar in the African-American community about participating in clinical trials.”

Mistrust in Clinical Trials is Systemic 

Native American and Hispanic American communities have their own stories of mistrust in clinical trials.

The preexisting inequities in our healthcare system is another barrier, and a systemic one. Statistically, most REMGs don’t have access to basic healthcare, let alone resources to participate in clinical trials. Dr. Puckrein shares staggering data, “before the Affordable Care Act about 48% of African-Americans had no health insurance, about 54% of Hispanics had no health insurance.”

Furthermore, someone may be considered ineligible for a clinical trial if they already have existing health conditions. According to Dr. Puckrein, “REMGs were disproportionately excluded from some clinical trials based on either prior cancers, comorbidities, other things that may not have clinical implications.”

Outcome Risks If Barriers Aren’t Eliminated?

Without diversity in clinical trials, we risk collecting homogenized data which does not include the larger genomic context necessary to understand and improve precision medicine for everyone. It’s important that we make clinical trials all-inclusive, as Dr. Puckrein points out:

“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”

The stakes are high because the future of our health depends on inclusivity right now. Clinical trials awareness needs to extend beyond a month of awareness. We don’t want today’s diseases to adversely affect generations to come. What then is a viable solution to this dilemma?

How Can We Learn and Take Action?

First. Get informed. Understand the larger historical context and intentions of clinical trials.

Second. Share this information by creating learning communities. Dr. Puckrein gives an example:

“If you bring physicians and patient advocacy groups, the policy makers and others around the table, you can solve problems like that and solve them quickly and inform the healthcare system so it’s interactive, it’s constantly learning. And so, we encourage people to build those – make them data driven. Use the data to help guide you on what interventions will work and how you’ll get the best possible outcome for patients.”

Third. Act. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” Program is a public health initiative designed to remove the barriers that prevent inclusive access. As Dr. Puckrein highlights,

“The “All of Us” program is really designed to address that problem, to take populations that have not historically been in clinical trials — and now we include senior populations in that list as well — and make sure that we’re gaining signs in research about those populations. And so, the “All of Us” program is really designed to fill a big scientific gap in our knowledge.”

Furthermore, it is crucial to engage early with community leaders and grassroots organizations that resonate with underrepresented patients, and to encourage their participation in the critical stages of research.

Seeking knowledge, joining a community of advocates, and taking collective action is key to making a difference for all of us as we journey the path to empowerment.


 

ASCO Goes Virtual 2020

The American Society of Clinical Oncology (ASCO) is the preeminent professional organization for oncologists. Their annual meeting usually takes place in Chicago, IL, but this year it goes virtual! Take a look at the infographic below to learn how to attend virtually.

Attend ASCO Online

 

 

Tips for Patients on Staying Connected Despite Physical Distancing

We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.

As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.

The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.

We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.

To take advantage of the opportunities that are currently presented to us, I’d like to highlight the ways in which we can stay connected:

(NEW!) Virtual Empowered #PatientChat | Friday, May 15 @ 1PM EDT

The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!

 Support groups via Zoom

  • Our Odyssey
  • Smith Center – for AYA patients (located in the Washington, D.C. area but is open to patients all over)
  • Look for ones from specific cancer orgs (ex. Thyca, Inc.)

Facebook support groups

These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)

Tweet chats

Search for these using the hashtag as seen below. A few of my favorites include:

  • #patientchat
  • #ThyCaTalk
  • #bcsm
  • #HealtheVoicesChat
  • #medtwitter
  • #HCLDR

Community Check-In #patientchat Highlights

Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?


Online communities won’t be canceled


Use social media to find patients like you


Full Chat

 

Telemedicine: What You Need to Get Started

This post was originally published by Health Content Collective here.

Given the global pandemic, many healthcare providers are shifting gears to give patients the option to receive care virtually, without an in-person visit. The idea of telemedicine may seem a bit daunting so here’s what you need to know to help you have a smooth, effective experience.

What to Expect:

  • The Patient Portal: If you haven’t set this up in the past, now is a great time to get familiar with this technology. You can set up or manage your appointments, communicate with your doctor, view test results and access additional resources. It’s also where you’ll find the technology for virtual visits, if available from your provider. If you do not have login information, contact your provider’s office.

  • Apps: In some cases, the patient portal will have an app that serves the same purpose. For telemedicine visits, if available, this may be an easier-to-use option as it removes the nuances of compatibility with various browsers.

  • Instructions: Depending on your doctor’s office or institution, you will receive instructions for joining the virtual appointment. This may be in the form of an email message from the patient portal, a text message (if you’ve opted in), a phone call from the clinic, or all of the above.

  • Patience: As with any video chat technology, there is inevitably an issue early on either with sound, video or all of the above. Be patient with your provider and yourself as you try to connect. Conversation may not flow as easily as it does with your provider in person, but you will find a comfortable groove after the initial few minutes.

  • Consent: You will be asked to electronically sign and consent for the virtual appointment. You may receive a message from your doctor via the patient portal or you will be guided through the process as you log in for your visit.

Key Steps for Success:

  • Make sure you have access to the patient portal.
  • Login in advance to “test your system” – most technology offers this option when you are on the virtual appointment screen.

  • Download and login to the app if available.
  • When scheduling, ask for a phone number to call if you have any issues when connecting.

Will This Change the Practice of Medicine?

As we begin to look beyond the pandemic, it seems that virtual medicine may become a mainstay. Certainly, if your visit doesn’t require a physical exam, this option is enormously more convenient for seeing a doctor and being able to communicate how you’re feeling.  But if you need a test or bloodwork, this becomes a less reasonable option

What are we missing by visiting a doctor in-person? And, conversely, what are we gaining by going virtual? Like every new technology, there are pros and cons. Only time will tell.

Click for Infographic

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up from Patient Empowerment Network on Vimeo.

MPN Network Managers, Summer and Jeff sheltering in place from San Diego, California, challenge listeners to be less consumed with worry by looking at service as medicine. They share how their theater programs, mentoring others and church activities have empowered them to give more of themselves and focus on the positive.

What activities do you enjoy that help you serve others? Share it with Jeff and Summer! question@powerfulpatients.org

How A Dog Can Help With Depression

Dogs perform many different services for people, including helping us when we’re down. It isn’t uncommon to see a therapy dog wandering down the halls of a nursing home, cheering up the patients inside.

New research has shown that dogs can help alleviate everything from depression to anxiety to aggression and other mental health problems. But how exactly does this work? And do all dogs relieve depression or is it the gift of a select few?

Will My Dog Know I’m Sad?

Dogs can sniff out cancer and even detect blood sugar levels, but do they recognize our emotions?

Many studies have found that dogs are susceptible to our emotions. For example, one study found that dogs are sensitive to changes in facial expression. While this study only used angry faces and happy faces, scientists assume that dogs will be able to recognize all if not most changes in the facial expressions of their owners. In other words, they can look at our faces and tell whether we’re happy or sad – at least most of the time.

Another study looked specifically at whether or not dogs can recognize emotions based on vocal tones. This study used a phenomenon called head-orienting to tell which side of a dog’s brain the stimuli were activating. To put things simply, dogs naturally tilt their head when processing audio stimuli based on the part of their brain they’re using to interpret the audio.

The researchers were able to tell what sort of emotion dogs were interpreting each vocalization as using this method. They found that dogs were very good at understanding human voices, even when faces or other cues weren’t visible.

There are many other studies that have looked at whether or not dogs can interpret emotions. However, they all come to the same conclusion – dogs are extremely good at reading a human’s mental state based on things like facial expression, body language, and tone of voice.

The Science Behind How Dogs Can Help Depression

Now that we know dogs can recognize our emotions and do often respond to us appropriately, in which ways is this good for treating depression?

Higher Oxytocin Production

One breakthrough study found that most if not all pet owners experienced increased oxytocin levels in their brains. This biochemical is also known as the “love” chemical, and I think anyone with a dog can recognize the unconditional love they often provide. (Unconditional oxytocin, anyone?)

They found that those with pets had less self-reported cases of anxiety and had lower stress-related markers like epinephrine and blood pressure.

Pet owners also had plenty of other benefits in the study, not all of which are directly related to mood. Dog owners had improved pain-management and less sickness, increased trust and higher relationship ratings with other family members in their life, reduced aggression behaviors, and even enhanced learning abilities.

Scientists theorize that higher oxytocin levels are the reason for many of these benefits.

As you might know, raising oxytocin levels is very beneficial for those with depression. Oxytocin plays a crucial role in regulating anxiety and stress. When it is low, these emotions can run rampant.

The simple presence of a dog can help fight depression simply because of the increased levels of oxytocin pet owners often experience.

Lower Stress

Similarly, dog owners have lower stress markers than those who don’t own dogs. A stress marker is a biological function that kicks in when we feel stressed, like our blood pressure or levels of certain hormones. Measuring these levels is an excellent way to get an objective idea of someone’s stress levels.

Many studies have shown that pet owners often have lower stress markers across the board, which means they are likely less stressed. For example, one study showed that owning a dog lowered blood pressure levels.

Companionship

Depression often feels lonely. It makes its victims withdrawal from the world, though face-to-face contact often relieves many symptoms of depression.

Dogs offer unconditional companionship to their owners and help remind them that they aren’t alone. Dogs don’t require the depressed person to leave the house or pick up the phone, which many depressed people cannot do on their worst days.

Furthermore, because dogs can recognize when their owners are depressed, many will automatically provide comfort in a time of need.

How Dogs Help With Anxiety

Dogs help with anxiety and other mental illness, similarly to how they help with depression.

They increase oxytocin production, which decreases stress and fear, and provides unconditional companionship to their owners. These things help with mental illnesses of all kinds, including anxiety and depression.

In our modern world, children might be particularly vulnerable to anxiety, even in the elementary school years. Luckily, these benefits are apparent across all ages, including children. One study did find that children who owned dogs were less likely to have anxiety or a similar disorder than those without dogs.

Dogs might be particularly useful at treating anxiety in children with Autism Spectrum Disorder.

Dogs Contribute To A Healthy Lifestyle

Having a dog also requires you to partake in activities that contribute to a healthy lifestyle and help diminish the effects of depression.

For example, every dog is going to need exercise. Even if you have a breed that doesn’t require long walks, they are going to need to be taken outside multiple times a day to use the potty.

Simply getting outside and walking around in a green area has been shown to improve physical and mental health outcomes. Going out can also increase vitamin D intake, which can also improve mental health. Vitamin D deficiency can mirror depression in many ways and mental health professions think it plays a critical role in many depression symptoms.

There is also some degree of responsibility that comes with owning a dog. You have to get up to feed them, take them outside, and get them some exercise. Even if you did the bare minimum on any given day and only took care of your dog, you would get more done that if you owned no pets. Exercise and dogs are often correlated with being more productive for these reasons.

Plus, responsibility and productivity are linked with higher self-esteem. Those who get stuff done tend to think higher of themselves. This can help undercut many of the negative thoughts that are common with depression and other mental health problems.

What Is The Best Dog For Depression?

There have been very few studies on which types of dogs are best for depression. Overall, there seems to be very little difference between highly trained service dogs and your average companion dog when it comes to treating depression symptoms. This is likely because there are very few specific actions a dog can perform to help with depression. It is mostly their presence and day-to-day maintenance that is crucial for treating depression symptoms.

However, trained service dogs can be helpful to those with PTSD, anxiety, and other mental illnesses. In these cases, dogs can perform specific commands that can help substantially. Service dogs for anxiety can often detect anxiety attacks before they start and prompt their owners to get to a safe place.

In terms of breed, no one dog breed is better for depression than others. In general, it is better to pick low-maintenance dogs, as someone with depression might not have the energy to care for an energetic Jack Russel or the highly-intelligent border collie.

As usual, you should take into account your living situation and lifestyle when choosing a dog as well. A giant dog might not be suitable if you live in a smaller home. Some people might find it very calming to brush a dog daily, but you might not.

Labrador Retrievers are a standard go-to for all service dogs and emotional support dogs. These canines are reliable and dependable without requiring vast amounts of maintenance. They do require quite a bit of exercise each day, but not as much as most big dogs.

Other dog breeds that are good for those with depression include Greyhounds, Havanese, Whippets, and Spaniels.

What Now?

Dogs can help with depression through a variety of health benefits. Their closeness increases oxytocin production and levels of serotonin, which in turn decreases levels of stress and lower blood pressure. It also increases positive emotions and can make us more trusting of others around us. Our furry best friends can also provide the emotional support we need. Just being around a dog can even lower our heart rate.

Dogs also force us to perform actions like going outside and exercise, which can help improve depression symptoms. The simple fact that you’re owning and caring for a dog can improve your self-esteem and well-being.

There isn’t much of a difference between particular dog breeds when it comes to their health benefits. In general, you should select a dog to help with your depression that same way you would choose any dog.


Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

 When you want to raise awareness of your cause, amplify your advocacy activities and create change where it is needed most, social media is an important channel to share your message with the world.

But it’s not enough just to create content and push it out online. How you create, publish, and promote your content will directly impact the chances that people will see it and want to share it with others.  In this article, you’ll learn 10 tried and tested ways to help you maximize your social shares and increase your social reach.

1. Create Something Worth Sharing

Let’s get straight to the point here. If you want people to share your content, you need to give them something worth sharing. The New York Times Customer Insight Group did a fascinating study a few years ago on the psychology of social sharing. It named five primary motivations for sharing:

  • People want to better the lives of others 
  • People want the content to reflect their online identity 
  • People want to grow and nourish relationships 
  • People share because they like the feeling of having others comment on it and engage
  • People want to spread the word about something that they believe in 

Actionable Tip:  Create content that your audience will want to share because they believe it will be of value or interest to others. Before you post something, stop and ask yourself would this pass the re-share test above?

2. Ask Your Followers What They Want To Learn About

One way to ensure you are creating content your followers want to read about and share is to simply ask them what kind of content they’d like more of.  You can create quick polls on Facebook, Twitter, and Instagram and post a question such as “What content do you want to see more of?”

Actionable Tip:  To take your audience research a step further you could survey your followers to get a deeper understanding of their preferences. Survey Monkey, Polldaddy and Google’s own survey forms are all simple tools to use.

3. Curate Relevant Content

Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content.  Instead of more information what we really need is more accessible, understandable and credible information on which to base our healthcare decision-making.

One solution is to curate reliable, up-to-date medical information in a format that is easy for patients to access, digest, and understand. Content curation is the process of finding and aggregating information about a specific topic, synthesizing it to be most relevant to your audience, and sharing it in an easily digestible manner.  Curation can deliver many benefits including, establishing thought leadership and credibility, increasing visibility and driving social shares.

Actionable Tip: Read this previous PEN article to learn how to become a more effective content curator for your healthcare community.

4. Use Relevant Hashtags

If you are using social media to find and share health information, chances are high you are already using hashtags. Hashtags, a way for users to easily find similar themed content, are used regularly by millions of social media users on Instagram and Twitter.

Actionable Tip: For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

5. Grow Your Online Followers

The more people who follow you on social media, the more you can amplify your content and increase your social shares. A great way to find like-minded followers is to search using disease-specific hashtags or join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc

Actionable Tip: Read 12 Keys to Finding, Growing, and Nurturing Your Online Community for more tips on how to grow your online followers.

6. Add Images To All Your Posts

When it comes to creating content to support your message, the type of content you create matters. Humans are visual creatures — 90% of information transmitted to your brain is visual — and because of this people are drawn to visual elements that attract their attention. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content.

Actionable Tip: Add an image to all your online posts — even those that aren’t obviously visual. Read this guide to creating your own eye-catching visuals.

7. Create Infographics

Information graphics or infographics are stand-alone graphic visual representations of information, data or knowledge. They are a form of visual content that is highly shareable; consistently “liked” and shared on social media three times more than any other type of content. In fact, the words “infographic” and “infographics” are searched an average of 547,000 times per month in Google.

Actionable Tip:  People are irresistibly drawn to facts, figures, and statistics. When you combine these with compelling graphics you have a persuasive tool to help your content cut through the online noise. A tool like canva.com will make it easy for even the novice designer to create interesting infographics.

8. Write Better Headlines

One of the ways to make your content more shareable is to write better headlines. Think about how many headlines you read every day while searching online or browsing social media. What makes you actually click on an article or post to read it? Quite often it’s the headline. Your headline is the first (perhaps only) impression you make on a prospective reader so it’s worth taking time to create a good one.

Actionable Tip:  Use numbers in your headlines. Several research studies have shown that headlines with numbers tend to generate significantly more social shares and engagement (interestingly, research shows that headlines that contain odd numbers have a higher click-through rate than headlines with even numbers).  When adding numbers to your title, use the numeral, not the word, as we tend to scan headlines online and a numeral makes your title more scannable.

9. Repurpose Your Best Content

Identify your top performing content in terms of shares, comments, likes, etc.  Now brainstorm some ways in which you can take this content and turn into something else.  For example, create an infographic to highlight key statistics, turn a quote into a graphic, or develop a downloadable eGuide.

Actionable Tip:  There are so many possibilities to get more out of high-performing content and increase your shares. Read How To Create Six Unique Social Shares From Just One Piece of Content for ideas on how to repurpose your content.

10. Analyze What’s Working For Your Peers

Look at the type of content your peers are creating. Identify which content is performing well for them in terms of social shares, comments, likes, etc. Think about how you can take a piece of content they have created and add your own insight and expertise to make it more even more valuable to your followers. I don’t mean you should copy their content verbatim, but use it as inspiration for your own content.

Actionable Tip: I use Buzzsumo.com to see which popular content is most shared right now on social media. These are the topics people want to read about so it’s worth brainstorming ideas around this content.

As you can see, with a little imagination and creativity there are many ways to increase engagement and reach with your existing content.  Try some or all of these tips and do let me know how it goes for you.

Notable News – April 2020

The novel coronavirus continues to dominate the news and affect just about everyone, but it’s not the only news this month. There’s a newly approved drug to treat breast cancer, some pretty cool bacteria in your gut, and a potential way to turn off cancer. We’ll get to all the good stuff but, we can’t ignore the coronavirus because it’s changing the way we treat cancer, so let’s start there.

While there is some evidence that our social distancing efforts are helping to slow the spread of the coronavirus that has plagued the globe for the better part of 2020, the threat of Covid-19 is still very real, and it is affecting how cancer patients are being treated, reports fredhutch.org. Many patients are finding that their treatments are being delayed, rescheduled, or put off altogether. The idea is to protect cancer patients, who are at higher risk for complications from Covid-19, from contracting the virus. That means keeping them out of emergency rooms and treatments centers. In addition, medical resources such as ventilators, masks, and gowns, and even time in the operating room, are in short supply so patients with less aggressive cancers may find that their surgeries are being delayed in order to lessen the burden on the supply. For many patients, the delay or change in treatment is safe, but for some patients, a delay in treatment could decrease their survival rate. Determining how to treat cancer patients during this global pandemic is difficult for doctors because the risks and the stakes are so high. Fortunately, adjustments are being made to cancer treatment guidelines so patients can continue to be safely treated. Wider usage of telehealth and drugs that can boost white blood cell counts during chemo, and screening patients for symptoms before allowing them into treatment centers are among the new procedures. Learn more about how Covid-19 is affecting how cancer is being treated here.

Another result of Covid-19 is the early release of a drug to treat breast cancers. This month, the United States Food and Drug Administration (FDA) approved the drug Tukysa, or tucatinib, to be used in combination with chemotherapy to fight aggressive forms of breast cancer, reports geekwire.com. “We recognize that patients with cancer constitute a vulnerable population at risk of contracting the coronavirus disease,” Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Oncologic Diseases in the FDA’s Center for Drug Evaluation and Research, stated in a news release from the FDA. “In this critical time, we remain steadfast in our commitment to patients with cancer and doing everything we can to expedite oncology product development. Tukysa was approved four months prior to the FDA goal date, providing an example of this commitment and showing how our regular work in reviewing treatments for patients with cancer is moving forward without delay.” The drug will be used to treat adult patients with HER2 positive breast cancer that cannot be surgically removed and that has metastasized. HER2 positive breast cancer metastasizes to the brain in more than 25 percent of patients. Tucatinib targets the HER2 receptor and is taken as a daily pill. The drug costs an average of $111,000 per patient. More information can be found here and you can read the FDA’s news release about tucatinib here.

Thinking about the coronavirus might have everyone feeling a little bit queasy, but this news about gut bacteria might make you feel better. The communities of bacteria that live in your gut, the gut microbiota, might help treat cancer, says medicalnewstoday.com. A new study has shown that certain gut bacteria called Bifidobacterium can get inside tumors in the gut, activate the immune system, and improve the effectiveness of a cancer treating immunotherapy called CD47 blockade immunotherapy. The study performed on mice showed that the treatment worked better for mice with high levels of Bifidobacterium than it did for the mice without. This research could provide insight into why some patients respond better to immunotherapy than others and could lead to more effective immunotherapy treatments. Find more information about the study here.

We may all be wishing for an off switch for the coronavirus right now, but there may actually be one for cancer. Researchers have found a specific site where they can potentially stop the growth of many types of cancer, reports medicalxpress.com. For some time, scientists have known about molecules that interact with tumor suppressor proteins, called PP2A. The PP2A proteins act as an off switch for cancer and stop its growth. However, scientists didn’t know where the molecules interacted with the PP2A proteins, so they couldn’t use the information to make cancer-treating drugs. Using cryo-electron microscopy to get 3D images of where the molecule is bound to the PP2A proteins they could see how the different parts of the protein were brought together. The new information is a step toward developing drugs that could activate these tumor suppressor proteins. PP2A proteins may also be helpful in treating cardiovascular and neurodegenerative diseases like heart failure and Alzheimer’s. Get more information here.

Hopefully, the coronavirus off switch will be developed soon, but in the meantime, stay safe and stay tuned next month for more Notable News.