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What You Need to Know Before Choosing a Cancer Treatment

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What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

Is There Value in Seeking a Second Opinion?

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Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.

Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.

Read the Full PEN-Powered Activity Guide VI

Myeloma Testing and Treatment: Insist on Better Care

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In this podcast, Charise Gleason a nurse practitioner, provides an overview of myeloma. Charise discusses necessary myeloma testing, how test results may affect treatment options, and why patients should ask questions and seek advice from their healthcare team without hesitation.

About the Guest:
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Healthy Garlic Mushroom Quinoa

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Healthy Garlic Mushroom Quinoa from Patient Empowerment Network on Vimeo.

 Recipe:

  • 1 cup quinoa
  • 1 tablespoon olive oil
  • 1 pound cremini mushrooms, thinly sliced
  • 5 cloves garlic, minced
  • 1/2 teaspoon dried thyme
  • Kosher salt and freshly ground black pepper, to taste
  • 2 tablespoons grated Parmesan

Directions:

  1. Heat olive oil in skillet over medium high heat.
  2. Add garlic, mushrooms, thyme, salt and pepper, and cooking, stirring occasionally, until soft, about 3-4 minutes.
  3. Stir in cooked quinoa until well combined
  4. Garnish with parmesan and serve

History of Mushrooms

Sometimes categorized as a vegetable, mushrooms are a member of the fungus family of organisms that also includes truffles and the microorganisms of molds and yeasts. For centuries during the early times of mushroom consumption, generally people of the Eastern portion of the world ate mushrooms, while the people of the Western portion of the world did not. And mushrooms have not only been eaten for their flavor but have also been used for their hallucinogenic effects in spiritual and religious ceremonies by the Vikings, Siberian shamans, and in ancient Mexico. The native people of Mexico used them to generate hallucinations that they deemed as visions of the future. The people of France are known in history for introducing mushrooms into Western cuisine. As for the U.S., Americans began serving mushrooms in cuisine in the late 1800s.

Medical Properties of Mushrooms

In addition to their use in Eastern cuisine, mushrooms have been part of Eastern medicine for thousands of years. The reishi mushroom has gained popularity in recent years for its medicinal properties, which may include aiding in weight loss, improving sleep, lessening depression and anxiety, fighting cancer, boosting the immune system, improving focus, and even promoting healing. Studies on chaga mushrooms show that they may help in lowering cholesterol levels, decreasing inflammation in the body, and fighting against oxidative that causes skin aging. Shiitake mushrooms are known for their ability to lower cholesterol, and phytonutrients help prevent plaque buildup in the arteries and aid in maintaining healthy circulation and blood pressure in the body. Lion’s mane mushrooms are known for their ability to boost production of myelin and the bioprotein nerve growth factor that are vital to brain function, and consumption has been shown to alleviate irritability and anxiety and to improve concentration, mental clarity, cognition, and memory. Mushrooms also supply potassium, protein, and polysaccharides, which boost immune function in the body.

Surprising Facts About Mushrooms

Due to their meaty consistency, vegetarians use portobello mushrooms as a replacement for meat. Recent research has utilized mushrooms in varied and surprising ways. Mighty mushrooms are used to turn waste from crops into bioethanol and to clean up toxic waste and oil spills. Materials made from mushrooms have been used as replacements for leather, foam, polystyrene, and building materials. A mushroom has even been discovered that can break down plastics in weeks instead of years.

See all recipes from the Cook & Learn series here.

#patientchat Highlights: Genome-Wide Sequencing: What an Empowered Patient Needs to Know

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Last week we hosted an Empowered #patientchat with GenCOUNSEL (@GenCOUNSEL_CA) titled “Genome-Wide Sequencing: What an Empowered Patient Needs to Know”. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

“Genetic counselors help patients know what they’re dealing with.”

Genetic Counseling Helps Patients and Families Feel More Empowered

What can stakeholders do to make genome-wide sequencing and genetics services more equitable and diverse?

Full Transcript

The Benefits Of Working At Home If You’re Undergoing Cancer Treatment

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Around 1.8 million people were diagnosed with cancer in the US in 2019, and for those living with cancer, work can be an important part of their life. While providing much-needed financial security, including health benefits, it also offers routine, a sense of normality, and boosts self-esteem. However, for many people undergoing treatment or survivors wanting to return to work after cancer, the standard full-time, in-office nine-to-five job may not be the right fit anymore. Working at home can offer the best of both worlds. You can maintain your career but avoid the complications and rigid structure of being in the office.

Work Is Good For Your Health

It’s widely known that a steady job in safe working conditions is good for both our physical and mental health. There is growing evidence that job loss and unemployment can be detrimental to your health and linked to various negative health effects. That’s why it’s so important that employees are supported to enable them to remain at work or return as soon as possible where appropriate. While the cancer journey can feel like a lonely struggle to many people, maintaining a work pattern can help a person stay mentally active, strengthen their sense of purpose, provide structure, and provide real opportunities to achieve.

Benefits Of Working From Home

Working from home when undergoing treatment or in recovery can often help a person perform their job better than if they came into work. Working remotely can also make a big difference in helping their feelings of anxiety about managing any embarrassing side effects in private. Of course, it also means that they can avoid a long commute, and gives them the ability to work around periods of fatigue. There’s also an added advantage if they own a pet. Extensive research has found that pet therapy can have profound benefits for a person going through chemotherapy. Studies show that working alongside a pet can reduce feelings of loneliness and promote a sense of well-being. It can even help reduce the need for pain medications.

What You Need To Consider

Certain jobs cannot be easily carried out remotely, so you may have to consider whether there’s an alternative role available. Alternatively, your current position might be suitable to do from home, but it may need to be adapted to fit in with your current health and lifestyle. Speak to your employer about whether there’s any special equipment you need to work at home, and anything else that will allow you to work effectively. If you experience fatigue and memory loss due to your cancer or chemotherapy, you may not be able to perform your job to your usual standard and speed. It’s helpful to talk to your employer about how you are affected by your treatment, and what you believe you can reasonably achieve from home.

Many people who are undergoing cancer treatment or are in recovery are perfectly able to continue to carry out at least some aspects of their job. They can still be valuable assets to the business; they may just require extra support. Working from home can help someone living with cancer stay connected with their colleagues, feel less isolated, and provide a welcome sense of normality in a world that can suddenly seem unpredictable and frightening.

Patient Profile: Vanessa Steil

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“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.

Read more patient stories here.

A New “New Normal”: COVID-19 Vaccine Guidelines and Cancer Patients 

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Editor’s Note: This blog was updated 1/31/22 to reflect current vaccine guidelines.

As we enter the 1-year mark of living in a pandemic, there have been a lot of changes in a world that has seemed stagnant, void of time. The inadequacies in healthcare that have been hiding behind the transparent curtain are now front and center, including health disparities, as well as access to and quality of care. We have also witnessed an influx of information about COVID-19 and the vaccine, and as cancer patients, it makes everything that much more complicated. 

Luckily, there are trusted resources we can turn to for guidance on our most pressing questions: 

What are the current vaccines? What age groups are eligible to receive them? 

  • Moderna: 18+ years old
  • Pfizer-BioNTech: 5+ years old
  • Janssen (Johnson & Johnson): 18+ years old

How many doses of each vaccine are given and how far apart? 

Moderna

  • Primary Dose: 2 shots, 28 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series.

Pfizer-BioNTech:

  • Primary Dose: 2 shots, 21 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series. Teens 12-17 years old should get a Pfizer-BioNTech COVID-19 Vaccine booster 5 months after the last dose in their primary series.

Janssen (Johnson & Johnson): 

  • Primary Dose: 1 shot
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (mRNA COVID-19 vaccines) at least 2 months after the first dose of J&J/Janssen COVID-19 vaccine.  You may get J&J/Janssen in some situations.

If I am currently undergoing treatment, can I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. Contraindications include: 

  • Severe allergic reaction after a previous dose of an mRNA or viral vector COVID-19 vaccine or any of its components 
  • Immediate allergic reaction of any severity to a previous dose of an mRNA COVID-19 vaccine (both Moderna and Pfizer-BioNTech) or any of its components 
  • Immediate allergic reaction of any severity to polysorbate
  • Immediate allergic reaction of any severity to any ingredient in the Janssen (Johnson & Johnson) vaccine such as polysorbate

If I am not currently undergoing treatment and still have cancer, can I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. See contraindications above. 

If I no longer have cancer, should I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. See contraindications above. 

Does it depend on when I get the vaccine based on what type of cancer I have/had? 

Yes, for guidelines on specific cancers, visit this link. 

Should my caregiver and/or people whom I live with also receive the vaccine? 

Yes, when the option becomes available to them. 

If I have previously had COVID-19 (tested positive), can I get the vaccine? 

Vaccination should be offered to persons regardless of history of prior symptomatic or asymptomatic COVID-19 infection. 

Am I fully protected after receiving the vaccine? 

At this time, researchers are unsure of how much protection the vaccine provides. Therefore, it is still recommended to wear a mask, wash yours hands for at least 20 seconds, and practice social distancing. 

However, vaccinated patients who are exposed to someone with suspected or confirmed COVID-19 aren’t required to quarantine if they: 

  • Are fully vaccinated (i.e., ≥ 2 weeks after receiving the second dose in a 2-dose series, or ≥ 2 weeks after receiving one dose of a single-dose vaccine) AND 
  • Are within 3 months after receiving the last dose in the series AND 
  • Have remained asymptomatic (without symptoms) since the current COVID-19 exposure 

What are common side effects of the vaccine and how long do they last? 

Side effects can include: 

  • Pain and swelling on the arm where you received the shot 
  • Fever, chills, fatigue, and headaches 
  • Most post-vaccination symptoms are mild to moderate in severity, occur within the first three days of vaccination, and resolve within 1–3 days 

Of course this list is non-exhaustive, and there are a lot more questions to be asked and more answers to be found as frontline workers continue to study the virus and its variants. For the latest updates, follow the Centers for Disease Control and Prevention (CDC) website, as well as American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN). We’re in this together, one day at a time. 

Sources:  

  1. https://www.ama-assn.org/system/files/2020-12/covid-19-vaccine-patient-faqs.pdf 
  2. https://www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html
  3. https://www.onclive.com/view/nccn-releases-covid-19-vaccination-guidance-for-patients-with-cancer 

Cancer-Specific Resources:

  1. Is the COVID-19 Vaccine Safe for Myeloma Patients?
  2. What AML Patients Should Know About the COVID-19 Vaccines
  3. COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?
  4. COVID-19 Vaccination: What Do Breast Cancer Patients Need to Know?

Patient Profile: Lisa Hatfield Part V

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This completes a five-part series from empowered multiple myeloma patient Lisa Hatfield. (Read Part I, Part II, Part III, and Part IV) In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Five Lisa concludes her advice to newly diagnosed cancer patients through example by sharing her own experiences, connecting to readers, and offering hope for herself and others.

Share

Not in a million years did I think I’d post an open, raw account of my cancer experience. Not one to share personal trials, other than the occasional “it’s been a long week,” I still find it surprising that I yearn for an hour to post on a website dedicated to people sharing stories about health challenges.

My decision to share came quickly, as my kids were in middle and high school at the time of my diagnosis. My diagnosis, paired with the word “incurable,” frightened me and my family. Rather than questions directed at them, I chose to notify their schools and my close friends and family about my diagnosis, requesting that questions come to me. In exchange for our daughters maintaining a normal school routine, we decided to share details by posting to a secure website, to keep those close to us informed.

Choosing to unveil your journey is deeply personal. Besides a gratitude journal, I’ve never been one to document my activities, thoughts, feelings. While in Houston, Lance set up a CaringBridge site. Prior to the first journal entry, I methodically moved in and out of appointments, listening, and absorbing the words. I was shocked, scared, numb, and out of my body. It only took a few keystrokes before emotions were unleashed. Journaling and sharing allow time to reflect. Not all entries are shared publicly. It can be highly cathartic just to write. Share with your journal alone or share with others. Occasional sharing with others is both unifying and comforting, as friends and family find a common thread to tie your diagnosis with their experiences. Sharing provides connection, and leaves you feeling less alone.

The degree to which you share your trials, tribulations, and triumphs, and when, is up to you.

Connect

One of my favorite books is The Blue Zones, by Dan Buettner. Buettner first released an article in National Geographic, then published his book on the “blue zones.” I’m summarizing this in my own words, but the blue zones refer to geographic regions around the globe that have the highest percentage of centenarians, who also have a good quality of life in their later years. These locations include Loma Linda, Sardinia (good reason for a trip to Italy), Ikaria (reason to visit Greece, too), and several other locations. In his research, Buettner discovered that the culture in these areas integrate physical and social health as parts of everyday life. Things like unintentional exercise (like walking to the market or cleaning), eating native/local foods, and at the top of the list, strong social connections. It reminded me of my grandma who used to have “coffee hour,” more like 3 hours, with her neighbors each week. They loved their weekly gatherings, often bonding over their health ailments, as they aged. I believe that each of them had a better quality of life because of those regular visits.

Upon diagnosis, a friend sent an email that ended with, “Lean hard and lean often.” He wanted us to rely on our network to get through the challenge ahead. Depending on others is incredibly difficult for many people, including me. When a neighbor set up a meal calendar, I was overwhelmed with the response and felt guilty about the possibility of burdening others and their time. She explained it like this: do it for others; let us cook meals; to allow others to provide something to you alleviates their feelings of helplessness. I am so grateful I accepted. As the fatigue swept in, my ability to cook, let alone stand for more than 2 minutes, vanished. My family loved the meals, and we’ve since collected recipes and voted on our favorites (all meals were excellent) that we fix monthly. Though a note on the sign-up sheet advised the chefs to place meals by our front door, as not to disturb us, I anxiously waited by the door every Monday, Wednesday, and Friday. Swinging the door open and greeting our friends was the highlight of my day. My energy lasted about 5 minutes, on a good day, but it felt so powerful and good to collapse on the couch after experiencing that connection.

Connection with others is important; however, connecting to anything can uplift: your animals (dogs, cats, birds, horses etc.,); your environment (sitting outside or gardening); your routine (sipping a warm cup of coffee in the morning or an evening walk); your faith/beliefs/thoughts. We are wired to connect. To belong, love, and be loved is on Maslow’s Hierarchy of Needs, a theory in psychology made up of a five-tier model of human needs. Connection is key to improved well-being, both physical and emotional. Who knows? You might conquer cancer and join the circle of Buettner’s centenarians. It’s worth the effort to connect.

Hope

While reading this same book, I was introduced to the concept of “ikigai.” (Icky-guy). Ikigai is a Japanese term that roughly means a person’s “reason for being.” As Buettner discusses in his books, TED talks, and articles, Ikigai is bigger than just something you want to do as a service; a person never feels obligated or forced into the purpose. It is something that gives value to a person’s life, as it gives life meaning. It is the reason you get up in the morning. When I began each of my cancer treatments, I wondered why I was diagnosed with multiple myeloma and why I had to endure biopsies, radiation, surgery, chemo, and stem cell transplant (collection). Each new treatment comes with a renewed sense of fear and uncertainty.

Hope is often elusive, during a cancer battle. As a myeloma patient, the word “incurable” was the vacuum that sucked the hope from my spirit. Infusions were a part-time job, as I spent half a week in the chemo suite for six months. I appreciated the openness of the chemo suite, chairs side-by-side and few closed curtains. I loved going to chemo. It felt safe. It was in the chemo chair where I heard stories of both hopelessness (from failed chemo, metastasis, fear of pain, suffering, and death) and of hopefulness (seeing family, a chemo break, a provider sharing a new study showing dramatically improved outcomes, a new drug approval, good test results, a random stranger saying, “I believe,” and connecting with friends). Hope is found in comments from your care team, friends, family, and strangers. Hope is in your experiences (“manufactured hope” from steroids counts, too). Hope is in your faith, however that manifests in your life, and in the belief that something bigger than you can help you fight cancer. Relish moments of hope…of yours and of others. Write them down when you can and, on occasion, reread them.

Now that I’m further along in my cancer journey and in pseudo-remission, I contemplate: Why…what is the purpose of this? What am I supposed to do with everything I’m learning from this? How can I use this to do something productive or meaningful? I don’t know the purpose yet, but when Lance and I talk, we know there is something more to it. This search for purpose is what gives me hope, now. I know there is a purpose in this experience that we will figure out. My ikigai. Our ikigai. I hope we can do something good.

Read more patient stories here.

Patient Profile: Lisa Hatfield Part IV

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This is Part Four in a five-part (Read Part I, Part II, and Part III) series from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Four Lisa continues to share poignant and powerful advice based on her experiences one breath at a time.

Breathe

“You have cancer.” It takes your breath away, this phrase. Personally, the “limbo window,” from diagnosis to commencement of treatment was the most challenging. Uncertainty debilitates, terrifies, suffocates. One day at a time is too much to fathom. Take one breath at a time. Work up from there.

Feel

As I stood up from the exam room stool to leave, Dr. Mike handed me two papers. A prescription for anti-depressants and a prescription for anti-anxiety medications. “You’ll need these,” he said. I didn’t feel depressed or anxious, just numb and hollow. My only thought was whether or not I’d be around to see our daughters graduate. Given the prognosis and life expectancy for myeloma, that prospect seemed unlikely. No anger, no sadness. Just numb and breathless…again.

Shock was the first emotion. Each visit with a new provider, first the neurosurgeon, then the radiation oncologist, medical oncologist, stem cell oncologist, amped up the shock. The final cherry on top was the financial coordinator. The stem cell transplant price tag is $350,000 to $600,000.

A cancer diagnosis and accompanying uncertainty surrounding treatment, prognosis, and outcome, result in overwhelming waves of shock and fear. As the shock begins to wane, denial and questioning swiftly ride in, followed by anger, frustration, and sadness, in no particular order.

The grief cycle, usually reserved to describe feelings associated with losing a loved one, can also be applied to a cancer diagnosis. With a cancer diagnosis you lose your life routine as you knew it, and often lose hopes, dreams, and expectations. Cancer is terribly disruptive. Cancer patients feel shock, denial, anger, despair, depression, and acceptance, often sliding quickly from one feeling to another. There is no timeline for grief. Don’t feel obligated to create one. Just let yourself feel. No judgement, no time limits, no guilt, no apology. It’s okay to feel.

Live

I bought a self-serve ice cream machine in July. It’s a full-size, commercial grade machine on wheels and is parked in our garage. Not sure if it was the chemo or Covid isolation or the less-than-good news appointment I had that day that led me to pull the trigger on purchasing a used machine. Maybe it was the resulting desire to live every moment that cancer patients feel as we struggle with medication side effects, endless appointments, and the loss of life’s routine. Or the desire to deeply inhale every breath of life.

Anyway, the money spent on the machine was only a fraction of what we would have spent on a cancelled vacation. Once a week, we sanitized, set up, and filled the machine with vanilla and pineapple soft-serve mix (yes, it has a “twist” option, too). On our driveway, we could socially distance while enjoying ice cream with friends and neighbors. Ironically, chemo side effects seemed to lessen each time we started the process of setting up. I can’t wait for the weather to warm again.

When you’re feeling well, think of things that energize you. Past or present. Mine was memories of Dole Whip at Disneyland. It can be anything. Watching movies, sitting on a beach towel with a picnic, watching kids run around the neighborhood, going for a walk, writing, the ocean…the list is endless. Identify at least one activity that you can do and make it happen even if it requires soliciting the help of others and making some adaptations.

Live. As often and as big as you can.

Read Part V of Lisa’s story here.

 

The CDC is Joining the Patient Empowerment Movement

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April 15, 2021 Update:
The CDC Foundation has launched the Empowered Health Cancer – Free Challenge! This competition calls for new, revolutionary ideas and solutions that meet people where they are and empower them to live longer and healthier lives, cancer-free. If you have an idea to create better care for cancer patients, enter today for a chance to win $5,000. Learn more here.

Inspired by the question: “Could the number of cancer deaths be lowered by helping people take a more active role in their health and health care?”, the Centers for Disease Control and Prevention (CDC) and the CDC Foundation have launched an initiative which will further elevate the cancer patient empowerment movement: EmPOWERed Health.  

Complimentary to our mission and programs at the Patient Empowerment Network (PEN), the CDC’s EmPOWERed Health initiative aims to educate and inspire people to be more proactive in their health and in the prevention and treatment of cancer.  

To kick off EmPOWERed Health, the CDC Foundation will host a virtual hackathon in the spring of 2021 that will seek innovative ideas and bold approaches from a variety of people and organizations to generate ideas and potential solutions to some of the most difficult challenges in health and well-being. 

To learn more, visit https://empoweredhealth.org/ and follow #WeAreEmpoweredHealth on social media. 

The Patient Empowerment Network community is excited to have the CDC team’s talents on this vitally important effort to support cancer patients and care partners in achieving the best possible treatment outcomes!  

Patient Profile: Lisa Hatfield Part III

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This is Part Three of a five-part series (Read Part 1 and Part 2) from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part Three Lisa uses her experiences to provide valuable advice about becoming an empowered patient through a willingness to learn and be open.

It’s true, knowledge is power. And it is empowering. There are so many ways to learn about your cancer, which allows you to feel that you have some control over your diagnosis. Learning from others is a great way to start, as we did with “R”, a stranger we met on an elevator at our local cancer center.

We met R a couple days after diagnosis. She was maybe five feet tall, give or take a couple inches…probably take. The elevator carried us one floor, from the main floor to the basement (I understand that radiation areas are better shielded in the basement, but it’s an awful locale for an oncologist’s office…dark, depressing, and deathly). This 20-second ride changed our lives, and quite possibly the length of mine.

My husband and I were obviously exhausted. Trying to determine the order of treatments (radiation, surgery, chemo, stem cell transplant) had us feeling like ping pong balls, bouncing back and forth, all the while worrying that my spine and spinal cord could fail at any moment. We wanted someone to tell us what to do. Information overload and miscommunications among providers left us too tired to think. We’d been mulling the idea of going to MD Anderson, but that task seemed much too daunting; not to mention that leaving our kids for a week (which morphed into a month) worried me. They were afraid, too; I needed to comfort them.

This random stranger, R, thanked us for holding the door. As the elevator door sealed shut, R gave us a stern look, “Which of you is getting zapped today?” Maybe this petite but fiery woman had some words of wisdom. Clearly, she had been going through something herself, as a large, patchy scar was evident on her neck. I explained that neither of us was going for radiation, just a radiation consult for me. Our quick elevator conversation extended for several minutes after we deboarded the elevator. She did have something to share: her story, and her words of wisdom. “Go,” she said…no, she demanded…we go to Houston for an expert consult. It was absolutely, the best decision we made during this entire journey. We were open to listening and learning as a result of desperation.

I am a researcher, and once I was under the influence of powerful steroids, I researched myeloma all night long (thank you, dexamethasone). Support groups for cancer patient and caregivers provide not only support, but educational opportunities. We’ve made lifelong friendships with our local myeloma support group and have found that it’s more a social hour than a support hour.

Learn from the entire care team. Oncologists are the cancer care “quarterbacks,” but the chemo nurses see much more of the side effects, standard and atypical, to know when to be concerned. Pharmacists are more likely to understand your bowels and digestive issues. Upon starting infusions, the oncology pharmacist introduced himself, “Hi, I’m Greg the pharmacist. I talk to people about drugs and poop. We talk openly and freely about poop. Let’s make that normal right now. How is pooping currently?”

Read Part IV of Lisa’s story here.

 

Green Monster Frittata Bites

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Green Monster Frittata Bites from Patient Empowerment Network on Vimeo.

Best-selling cookbook author and chef Ryan Scott is a juvenile colorectal cancer survivor whose father and grandfather also battled cancer. Ryan won an Emmy Award for his TV show Food Rush and was on Top Chef in 2007. Watch as he shares some of his cancer story as he demonstrates a healthy frittata recipe along with helpful cooking tips.

Recipe:

  • 1 cup shredded russet potato (frozen or fresh)
  • 2 tablespoons butter
  • ½ cup diced onion
  • 1 clove garlic, minced (about 1 teaspoon)
  • 3 large handfuls finely chopped swiss chard
  • 7 large eggs
  • ¾ cup plain Greek yogurt
  • 1 tablespoon flaxseed
  • ¼ teaspoon salt
  • 3 or 4 large fresh basil leaves
  • ½ teaspoon chopped fresh rosemary leaves
  • ½ cup loosely packed fresh parsley leaves
  • 1 tablespoon chopped fresh chives
  • 2 tablespoons vegetable oil
  • 1 cup shredded swiss cheese

Check out our Events Calendar so you don’t miss any of the upcoming Cook & Learn sessions.

Patient Profile: Lisa Hatfield Part II

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This is Part Two in a five-part series from empowered multiple myeloma patient Lisa Hatfield (read Part I of Lisa’s story here). In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network (PEN) as a resource, and she uses her experience to offer her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part Two Lisa emphasizes the importance of being an informed patient and discusses how she values the power of PEN.

Education is critical to anyone diagnosed with cancer. A cancer diagnosis is overwhelming; it’s okay to ask for help. Having an advocate, whether it’s the patient or another person, can change everything from treatments to outcome. As an example, we quickly learned that our local oncology community does not include a myeloma specialist. Seek an expert opinion. For myeloma, hematologists are well-qualified, but a myeloma specialist is top-notch. We researched, asked around, and discovered several centers with myeloma departments. Fortunately, we scheduled quickly and summoned the resources to travel. Like us, many patients do not live near a specialty center for their type of cancer. Financial resources, and logistical resources, such as finding care for children, pets, house, etc., can be daunting to consider. Friends and family want to help. Accept the help. Educating yourself, or having another conduct research on your behalf, can change your prognosis and outcome…and your outlook. It changed mine. My overall survival (a.k.a. lifespan) potentially increased from two to four years to eight to ten years, based on access to newer treatments and information from my myeloma specialist. Education empowers and boosts hope.

Cancer is hard. Treatment can be harder. Understanding your treatments and their accompanying side effects is critical. Living with pesky, sometimes debilitating, side effects is a significant burden to carry.

In addition to asking questions of your provider, consider participating in a support/education group that includes members with your same or a similar diagnosis. We belong to a local myeloma group and meet monthly with others battling myeloma and their family members. Relief from severe, drug-induced muscle spasms is the result of after-meeting conversations with a fellow “myeloman.” I’ve learned as much from them as I have from my care team. And we’ve made lifelong friends.

Lastly, take advantage of steroid-induced insomnia and spend sleepless nights perusing the internet, but be thoughtful with your sources. Forums, blogs, articles, clinical trials, medical journals, and testimonials are at your fingertips. I enjoyed searching clinical trials and peer-reviewed medical journal articles while on high-dose steroids, in the wee hours of the morning. Now, I prefer bedtime reading of blogs and patient forums, particularly those with inspirational accounts in the midst of adversity. The supply seems endless, from general cancer topics to specific.

Patient Empowerment Network (PEN) and other cancer-related websites have helped me achieve a better outcome by publishing information specific to my diagnosis. The articles provide basic information for the newly diagnosed and identify a methodical approach to dealing with myeloma, including how to access treatment and important information regarding treatment decisions. The staging of myeloma includes “risk categories” for different genetic mutations. Prior to treatment at MD Anderson, my risk category had not been addressed, and I only knew to ask about it from a cancer website. Identifying the risk category is important when determining the appropriate chemo regimen. My regimen changed once my risk category was assigned, and I believe that my good outcome (remission) is a result of having this knowledge and addressing it with my specialist.

PEN also publishes patient testimonials. I find these stories inspiring and comforting. I’ve also identified, with my doctor in Houston, new drugs to try at relapse (myeloma patients anticipate relapse and often work with the specialist to determine the next round of chemo) from patient stories. Knowing we are not alone and having a common bond, eases stress and fear. Alleviating some of the negative emotion surrounding diagnosis helps with overall well-being, and hopefully improves outcome.

Read Part III of Lisa’s story here.

#patientchat Highlights: Vaccine Hesitancy: Let’s Talk About It

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Last week we hosted a “Vaccine Hesitancy: Let’s Talk About It” 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

Concerns from Chronic Patients

“People are afraid of what they don’t understand.”

Coordinate Efforts with Community Leaders

Full Transcript